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Question:

my doc put me on ms cotin! started me on 15mg. tried it for a couple of days and nothing, he told me to double and he would write for 30mg when i come back which is in 2 weeks. he told me to try for 12 hours, but it usually only lasted 8. isn’t this LOL bett

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only 8 hours. Alot of people complain about it. My dr prescribed my medicine 3 x a day, every 8 hours instead of 12. Hope it works for you, Mechelle — Before you buy.

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Bett, Are you getting relief from the 30s ? ( doubling up ) Peace, Richard

– Hide quoted text — Show quoted text – my doc put me on ms cotin! started me on 15mg. tried it for a couple of days and nothing, he told me to double and he would write for 30mg when i come back which is in 2 weeks. he told me to try for 12 hours, but it usually only lasted 8. isn’t this LOL bett

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yes, it is strange. the pain is still there but not like before. not as strong. i am not as aware of it as i was with hydro. i still don’t want anyone touching it though. swelling is still present but hey, can’t have everything! it only last about 8 hours. doc told me to prepare for that. lol…. and thanks for asking, bett

– Hide quoted text — Show quoted text – Bett, Are you getting relief from the 30s ? ( doubling up ) Peace, Richard my doc put me on ms cotin! started me on 15mg. tried it for a couple of days and nothing, he told me to double and he would write for 30mg when i come back which is in 2 weeks. he told me to try for 12 hours, but it usually only lasted 8. isn’t this LOL bett

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Bett, One of the aspects of RSD is the self-protective mode of if you touch me I will kill you ! ( 1/2 LOL ). It has taken incredible amounts of meds to where if I prepare mentally, my doc can touch my legs. When I did the pump trial, that disappeared. If your doc suggests it down the road, you might want to seriously consider it. I did a year of titrating meds but the RSD outraces them. Finally we decided a pump was inevitable. Again I am very happy for you and the better relief you are getting !!! Peace, Richard

– Hide quoted text — Show quoted text – yes, it is strange. the pain is still there but not like before. not as strong. i am not as aware of it as i was with hydro. i still don’t want anyone touching it though. swelling is still present but hey, can’t have everything! it only last about 8 hours. doc told me to prepare for that. lol…. and thanks for asking, bett Bett, Are you getting relief from the 30s ? ( doubling up ) Peace, Richard my doc put me on ms cotin! started me on 15mg. tried it for a couple of days and nothing, he told me to double and he would write for 30mg when i come back which is in 2 weeks. he told me to try for 12 hours, but it usually only lasted 8. isn’t this LOL bett

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Yeah, What Mechelle said! lol… yes it is very common for these meds to only work every 8 hours. When I told this to my doc, she said "but it lasts 12" and I said it is definitely not working that long for me! She did change it and it made all the diffference. But she just said if I got too tired from the buildup to try and hold out for longer than 8. I never got overly sedated. So you can tell your doc (nicely) that many other pain patients find it only lasts 8 hours. Liza ***Blessings and Analgesia***

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Well I went to the Doctor today. My seven went to a six and my glucose is down. She said this was great but it was confusing to me. She told me I only have to test myself twice a week now and only have to see her every few months. I mean one week she is telling how bad and now everything is good. My bg have been running between 70 to 170. Now I am really confused. Is this how it works? You go down a number and they kinda let you go and you don’t have to test as much any more. Nothing was asked about excise or what I am eating. Just a strange feeling. It’s kinda like you go down one number and now I am on my own. Please let me know if this is what happens. Susan

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What kind of Doctor? Earl

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My diabtic doctor Susan

– Hide quoted text — Show quoted text – What kind of Doctor? Earl

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– Hide quoted text — Show quoted text – Well I went to the Doctor today. My seven went to a six and my glucose is down. She said this was great but it was confusing to me. She told me I only have to test myself twice a week now and only have to see her every few months. I mean one week she is telling how bad and now everything is good. My bg have been running between 70 to 170. Now I am really confused. Is this how it works? You go down a number and they kinda let you go and you don’t have to test as much any more. Nothing was asked about excise or what I am eating. Just a strange feeling. It’s kinda like you go down one number and now I am on my own. Please let me know if this is what happens. Susan

Well your doctor may be satisfied, but that doesn’t mean you have to be. The number he is looking at is called the A1c, and 6 aint bad. You probably won’t need to have your bg checked for at least 3mths. Yes this is common, the doctor is seeing an improvement, and that’s all he feels he needs to do. You can continue to strive for better control, though. I wasn’t happy till I got my A1c numbers between 5 and 6. I did this because that is what people who don’t have diabetes usually have, and it seemed like a good goal for my health. If you can’t get there, don’t be upset, but I would think that it may be possible for you. If you want to know more about diet you can see a dietician or ask questions here, or do both. I would keep on testing daily, till you are sure you know what foods to eat all the time, and to keep an eye on things anyway. Not for the doctor, but for your own information. With exercise, ask here as well, and maybe join a fitness club. Diet and exercise are YOUR job, not the doctor’s. He looks after the medicines, testing and so on. See him if you get sick. You CAN ask him about referring you to other doctors for tests on your cholesterols, eyes, feet and so on. Do ask us here if you are not sure about anything, we’ll do our best to help. Annette

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If I were you, I’d get a new Dr.! None of my Drs. have told me to test less and IMO I think this is bad advice. I go through periods of time where my numbers seem fairly stable. When this happens, I test twice a day. Then I go through periods of time where things get wacky. I might get highs or lows. I then start testing like a fiend until I come to grips with the problem. If you don’t test regularly, you’ll never know if there is a problem. I don’t think twice weekly testing is enough for anyone. Seeing her every few months is pretty routine though. — Type 2 http://users.bestweb.net/~jbove/ Julie Bove, posting from new account

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Hi Susan, I never seen a doctor, nurse, or dietician who suggested less than once a day testing. I think I got reasonable control – could be better, could be worse – but I only managed that by testing 4 times a day, so I found out what different foods and different exercise did to my BG numbers. When I first moved to insulin I went to 6 times a day testing. Of course, YMMV *always* applies, but still, twice a week -NO WAY As always, wishing you well. Al.

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Susan, others have already given you oustanding advise on the importance of frequent testing. I’d just add that testing only twice a week will likely add to your BG rising over time. How will you know what effects certain foods have on you? Your BG literally could be elevated for days without your knowledge. — Best wishes Louise Type 2, controlling by diet and exercise

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It sounds like your HbA1c is 6%. That’s good. The American Association of Clinical Endocrinologists asserts that a level of 6.5% is a target level. At that level or below, the patient is doing well. At higher levels, the doc must intervene somehow, either with stronger meds or more training. You are doing well (if you are at 6.5 or below) so he is following the guidelines. Unfortunately, you and the rest of us as diabetics really manage this disease mostly by ourselves. The docs tend to stand on the sidelines cheering us on, giving advice, and writing the prescriptions. Your post is consistent with the experience of many of us. I only see mine every 6 months. The blood testing advice, however, is a bit old-fashioned. However, if you are one of the lucky ones who stabilize, and have the ability to really control your diet and exercise patterns, you can get away with more infrequent testing. You find out by testing. If the numbers are all about the same and there are no patterns of abnormal high bG, you can pull it off. Otherwise, you test, test, test. IOW, one reason for testing is to figure out what patterns of eating and exercise you need. Then you don’t have to test as often. Regards Old Al

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Is this doc an endocrinologist ? Sleepy My diabtic doctor Susan What kind of Doctor? Earl

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Your type and treatment has an effect on your doc’s advise. If you are a T2 with no meds and comfortable with your diet then you really don’t have to test all that often. If the 7 to 6 number you are referring to is your HbA1C measure then you are doing fine. An HbA1C of 4% – 6% is a non-diabetic reading and comes with a decreased risk of complications. Basically, once you are under 6 then getting lower may not be of any benefit, the DCCT study showed that increased risk of complications started around 6.2%. Your doc should have been a little more explicit and told you that if you maintain you current diet and exercise level then you should be fine. Test more if you want but if you’re not going to do anything with the data why spend the extra dough on strips. If, when you do test, see a pattern of rising numbers then resume regular testing and monitor your diet to make sure you haven’t gotten off track. If your diet and exercise hasn’t changed and your numbers remain high alert your doc. You should have the HbA1C test done every three months, this measure is the only measure that has been extensively studied and related to risks of complications.

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I slowly getting the hang of this diabetes thing but I don’t see how on MDI/DAFNE type regime I could test less than 7 times a day. Pre each meal, 2hrs post and bed time as I don’t like to go to sleep borderline hypo so will have a small snack if below 5.0 mmol. Currently test a little more often. Cheers — Kevin Houstoun Type I since August 2002 http://www.altkb.com

– Hide quoted text — Show quoted text – Hi Susan, I never seen a doctor, nurse, or dietician who suggested less than once a day testing. I think I got reasonable control – could be better, could be worse – but I only managed that by testing 4 times a day, so I found out what different foods and different exercise did to my BG numbers. When I first moved to insulin I went to 6 times a day testing. Of course, YMMV *always* applies, but still, twice a week -NO WAY As always, wishing you well. Al. Well I went to the Doctor today. My seven went to a six and my glucose is down. She said this was great but it was confusing to me. She told me I only have to test myself twice a week now and only have to see her every few months. I mean one week she is telling how bad and now everything is good. My bg have been running between 70 to 170. Now I am really confused. Is this how it works? You go down a number and they kinda let you go and you don’t have to test as much any more. Nothing was asked about excise or what I am eating. Just a strange feeling. It’s kinda like you go down one number and now I am on my own. Please let me know if this is what happens. Susan

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I too have had a doctor tell me that I only need to test two to four times per week. That is when I told the doctor that I prefer to have tighter control of my blood glucose than that and I will continue to test from four to six times per day. To which the doctor said that I have good control and I should not have sore fingers. Then the doctor went on to say that I am the one that has to be in control of my disease and it is my decision. This same doctor was not recommending testing after meals until I showed my log book. The doctor said that now he recommends to most of his diabetic patients that they do test after meals in order to find out what their BG is doing. It’s great to have a doctor that will listen. It all boils down to the fact that we each have to be our primary care givers and make our own decisions about how we can’t best control this disease. The alternative consequences are far to grave to ignore it. Good luck to you. Chuck T2 since 9/96 – Hide quoted text — Show quoted text – Well I went to the Doctor today. My seven went to a six and my glucose is down. She said this was great but it was confusing to me. She told me I only have to test myself twice a week now and only have to see her every few months. I mean one week she is telling how bad and now everything is good. My bg have been running between 70 to 170. Now I am really confused. Is this how it works? You go down a number and they kinda let you go and you don’t have to test as much any more. Nothing was asked about excise or what I am eating. Just a strange feeling. It’s kinda like you go down one number and now I am on my own. Please let me know if this is what happens. Susan

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This post not CC’d by email Susan, others have already given you oustanding advise on the importance of frequent testing. I’d just add that testing only twice a week will likely add to your BG rising over time. How will you know what effects certain foods have on you? Your BG literally could be elevated for days without your knowledge. — Best wishes Louise Type 2, controlling by diet and exercise

G’day G’day Folks, For what it is worth, I have often had the suggestion put to me by diabetic nurses that I should test only a few times a week. This is after they look at one of my record books with tram track like little plus signs along the 4.5 to 6.0 mark. Each time I have politely declined because sometimes for a few days it has a little spazzy. There are moments when it seems as though my control has gone into rapid decline. The point is they don’t announce themselves. They have to be found by measuring. In practice the number of times I test varies from a fairly minimal three times a day (waking, after my main evening meal and before going to bed) to quite a few more if a high waking value rings warning bells. The point is that I know my breakfast is not going to raise my blood glucose. If it does anything at all it will lower my blood glucose. Berries, flax fibre and plain yoghurt with my morning Diamicron tames the rising blood glucose I experience in the morning. On the occasions when my waking blood glucose has be high … I eat breakfast and take my tablet confident in the prediction that it will all be back to about 5.5 an hour afterwards. (Diamicron needs food to work.) Lunch tends to be lighter so less problematic, any slight high will be of short duration for me. The evening meal tends to be where the surprises are most likely to occur. There was a study a year or two back that showed no improvement with home regular testing. IMHO it all depends on how one responds to the test results. Does testing change your behaviour? — Quentin Grady ^ ^ / New Zealand, #,#< [ / / "… and the blind dog was leading." http://homepages.paradise.net.nz/quentin

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Your have said: "I have type II. I am taking lipitor, glucovance, once a day,depanote, twice a day." Apparently you are still on meds and that plus diet has helped you to turn around your bg level in a short amount of time. It should be obvious that lifestyle changes that you made will need to be continued. "When I don’t smoke I eat and that is bad. So I am caught between hard place and a rock. I know this might sound stupid but my smoking has help me deal with all this. I hope to quit sometime just can’t do it yet. Please don’t be upset with smokers. Some of us just can’t help it." Nicotine does impact neurotransmitters like dopamine and smoking does seem to become part of someones personality, but not much good can be said for smoking and cardiovascular health. It is a good goal for you to dump smoking. In many respects, diabetes is a cardiovascular disease. Come back and give us some more good reports. Frank Roy

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- Hide quoted text — Show quoted text – Well I went to the Doctor today. My seven went to a six and my glucose is down. She said this was great but it was confusing to me. She told me I only have to test myself twice a week now and only have to see her every few months. I mean one week she is telling how bad and now everything is good. My bg have been running between 70 to 170. Now I am really confused. Is this how it works? You go down a number and they kinda let you go and you don’t have to test as much any more. Nothing was asked about excise or what I am eating. Just a strange feeling. It’s kinda like you go down one number and now I am on my own. Please let me know if this is what happens. Your have said: "I have type II. I am taking lipitor, glucovance, once a day,depanote, twice a day." Apparently you are still on meds and that plus diet has helped you to turn around your bg level in a short amount of time. It should be obvious that lifestyle changes that you made will need to be continued. "When I don’t smoke I eat and that is bad. So I am caught between hard place and a rock. I know this might sound stupid but my smoking has help me deal with all this. I hope to quit sometime just can’t do it yet. Please don’t be upset with smokers. Some of us just can’t help it." Nicotine does impact neurotransmitters like dopamine and smoking does seem to become part of someones personality, but not much good can be said for smoking and cardiovascular health. It is a good goal for you to dump smoking. In many respects, diabetes is a cardiovascular disease. Come back and give us some more good reports. Frank Roy

After watching my wife’s father go through a painful ten year decline and slow death from emphysema I would say that what little help with diabetes management smoking is turns out to be a really foolish choice. However, it is your choice so long as you are not smoking anyplace that non smokers are forced to inhale your second hand smoke. One good thing that came out of my father in law’s disease is that after watching him for the first couple of years I threw the cigarettes away. I had smoked for thirty years and did not want to be like him if I was fortunate enough to live into my seventies.

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– Hide quoted text — Show quoted text – For what it is worth, I have often had the suggestion put to me by diabetic nurses that I should test only a few times a week. This is after they look at one of my record books with tram track like little plus signs along the 4.5 to 6.0 mark. Each time I have politely declined because sometimes for a few days it has a little spazzy. There are moments when it seems as though my control has gone into rapid decline. The point is they don’t announce themselves. They have to be found by measuring. In practice the number of times I test varies from a fairly minimal three times a day (waking, after my main evening meal and before going to bed) to quite a few more if a high waking value rings warning bells. The point is that I know my breakfast is not going to raise my blood glucose. If it does anything at all it will lower my blood glucose. Berries, flax fibre and plain yoghurt with my morning Diamicron tames the rising blood glucose I experience in the morning. On the occasions when my waking blood glucose has be high … I eat breakfast and take my tablet confident in the prediction that it will all be back to about 5.5 an hour afterwards. (Diamicron needs food to work.) Lunch tends to be lighter so less problematic, any slight high will be of short duration for me. The evening meal tends to be where the surprises are most likely to occur. There was a study a year or two back that showed no improvement with home regular testing. IMHO it all depends on how one responds to the test results. Does testing change your behaviour?

Without a doubt, it changes my behavior. I adjust what I eat based on my meter readings. My standard breakfast used to include a piece of 7g carb toast. After months of my 2 hr readings being within range, they started to be higher than I wanted them to be. I changed bread and the numbers came back down. The results of that study are interesting. I thought the reason that diabetics are doing so much better lately is the availability of instant feedback via the BG meter. I know if I didn’t have my meter, my numbers would be much higher. I wouldn’t want to wait several months to see how my plan is working. You’d have to wait too long to make changes if there were problems. In the meanwhile, damage is being done to your body. — Best wishes Louise Type 2, controlling by diet and exercise

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Susan it sounds like it is time to shop around for a new Dr. How does she think you got your great numbers? Sure as heck not by testing twice a week. This is not what happens. You continue the testing, although not at such a frantic pace. You exercise on a regular basis, and keep on eye on your body. You get your eyes checked, and your feet checked. As always YMMV and this is JMO Jeanne Type 2 Diagnosed 05/28/02 189/159/120

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This post not CC’d by email There was a study a year or two back that showed no improvement with home regular testing. IMHO it all depends on how one responds to the test results. Does testing change your behaviour? Without a doubt, it changes my behavior.

G’day G’day Louise, That is where I think we are statistically weird. My impression was that it was possible the people in the survey were following a recommended diet. One would have to see the full text to know what actually happened. Maybe there were testing just every morning which seems pretty useless. IIRC they judged success by the A1c. I adjust what I eat based on my meter readings.

Well that is one sure way to ensure you are not excommunicated around here. <grin I took the six+ a day thing very seriously when first diagnosed. Now I do three test rather religiously and spot test whenever I want to know something. Another words I test with a goal in mind. My standard breakfast used to include a piece of 7g carb toast. After months of my 2 hr readings being within range, they started to be higher than I wanted them to be. I changed bread and the numbers came back down. The results of that study are interesting. I thought the reason that diabetics are doing so much better lately is the availability of instant feedback via the BG meter.

Well that is what I would have thought. The cost of controlling diabetes looms very large for administrators. I know if I didn’t have my meter, my numbers would be much higher.

Agreed. IMHO it is the ability to get fast feedback that leads to efficient learning and behavioral change. I wouldn’t want to wait several months to see how my plan is working. You’d have to wait too long to make changes if there were problems. In the meanwhile, damage is being done to your body.

Hey, I’m on your side in this one. — Best wishes Louise Type 2, controlling by diet and exercise

– Quentin Grady ^ ^ / New Zealand, #,#< [ / / "… and the blind dog was leading." http://homepages.paradise.net.nz/quentin

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I know if I didn’t have my meter, my numbers would be much higher. Agreed. IMHO it is the ability to get fast feedback that leads to

efficient learning and behavioral change. I wouldn’t want to wait several months to see how my plan is working.

You’d have to wait too long to make changes if there were problems. In the meanwhile, damage is being done to your body. Hey, I’m on your side in this one.

Me too. I think of the daily testing as a series of Pop Quizzes, and the quarterly (or so) lab work as the mid-term or semester exams. Frequent PQ’s have a way of making me stay current on my "homework" — i.e. sticking to my dietandexercise routines. And I know Right Away if I’m getting off-track somewhere or something I try out does or doesn’t work, or how well, or how I can tweak it, etc. bj (can’t believe it’s been *7* years since finishing most recent schooling/exams, which was defense of my MA thesis!)

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This post not CC’d by email – Hide quoted text — Show quoted text – I know if I didn’t have my meter, my numbers would be much higher. Agreed. IMHO it is the ability to get fast feedback that leads to efficient learning and behavioral change. I wouldn’t want to wait several months to see how my plan is working. You’d have to wait too long to make changes if there were problems. In the meanwhile, damage is being done to your body. Hey, I’m on your side in this one. Me too. I think of the daily testing as a series of Pop Quizzes, and the quarterly (or so) lab work as the mid-term or semester exams. Frequent PQ’s have a way of making me stay current on my "homework" — i.e. sticking to my dietandexercise routines. And I know Right Away if I’m getting off-track somewhere or something I try out does or doesn’t work, or how well, or how I can tweak it, etc. bj (can’t believe it’s been *7* years since finishing most recent schooling/exams, which was defense of my MA thesis!)

G’day G’day BJ, Well all I can say is guided missiles vs artillery shells. I think that one thing most of us can agree on is that a T2 diabetics inner milieu is less stable than a non diabetics if not slightly downright chaotic. A diet provided by a dietitian is an example of open circuit control. One aims and fires. The period between aiming and re aiming for the next shot is likely to be months. In the mean time the diabetics has periods where exercise is possible and where it isn’t, of mobility and injury, of good health and infection, days of utter bliss, days of stress. Nothing much stays constant yet the prescribed diet is meant to cope with this. On the other hand there is another method of responding to fast feed back, what we call eating by meter. We adjust day by day to what is working for us. In a sense it is more modern than the open circuit method and is called closed loop control. Before anyone concludes that I am solely in favour of the second it has to be said that without some open circuit setting of goals several things can go wrong. (1) The wrong target may be selected and while the guidance system homes in perfectly some collateral damage occurs. The ultimate goal is to provide complete nutrition without damage. (2) In many instances the feedback is not fast enough to be useful. Experienced golfers are only to aware that by the time they feel the club hit the ball, the ball is already a hundred meters of so down the fairway. Thus it is pointless and counter productive to attempt to steer the ball as one hits it. The meter can’t tell us how our next meal is going to affect us. We are simply able to place better bets. Best wishes and thanks bj, for the analogy that many people will be able to relate to. — Quentin Grady ^ ^ / New Zealand, #,#< [ / / "… and the blind dog was leading." http://homepages.paradise.net.nz/quentin

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Fruit it a tricky thing some can have it and others can. The best fruits are in the berry family and the melon family, bananas and apples and oranges are tough, That is why you need to test the fruit. I have just started eating a quarter of an apple without problem,. Forget about a banana except for a quarter of one in the morning, Really ymmv and you need to test the fruit you want, Remember to watch the portion size of it. I can eat ten grapes but this has come from a couple of years of testing. Loretta — In tribute to the United States of America and the State of Israel, two bastions of strength in a world filled with strife and terrorism.

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That’s excellent progress. You are doing very well indeed in managing your bg and chols. Question is does anyone have an index for fruit. I do test but I am overweight 110lbs so am trying not to eat much,but noluck in that

area. If you don’t eat much, you will not be able to keep on doing this for much longer. That’s why you are finding it so difficult. What you need is a new Way Of Eating (WOE). Beta blockers for my heart keeps me from racing heart but makes one fat:)

The simple answer for fruit, without testing each and every fruit, is to stick to berries, any berries. They are low carb and high in all the good stuff like vitamin C, flavinoids and caroteins. Tasty too! Forget about fruit juices though, unless you are having a hypo. Eat them whole. I was on beta blockers for a while, but they didn’t seem to affect my weight. Just helped stop me from having a heart attack. They *can* make you feel tired though. Perhaps you need to look at firstly, your daily carbohydrate intake, and secondly your overall daily calory intake. I recommend replacing High density carbs (sweet or starchy foods) with the low density ones found in the green leafies, watery high fibre vegetables, and lots of them. You don’t need to starve. Keep your fat and protein intake to small amounts, but don’t eliminate them. With that kind of diet, you don’t have to eat tiny meals, but you DO have to change the composition of your meals. Fats/oils and proteins do not have carbohydrates, but ARE high in calories. Portion control is the secret there. Perhaps you need to find a good calorie counting book and work out your daily allowance. A good formula for calculating your daily calorie requirements is: WEIGHT LOSS – CALORIE REDUCTION FORMULA For the normally active person, multiply your weight in pounds by 15. If you are sedentary, multipy by 13. If you are very active or perform physical labor for a living, multiply by 17. The result is the number of calories per day that you need to maintain your current body weight. If you reduce your daily calorie intake by about 600 calories, you will lose a pound a week or so. Reduce the daily intake by 1200, you lose two pounds a week. I hope this helps. Annette

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well this last testing of the past 6 weeks, took me to a1c of 5.8, when I began it was 12 something 1/2yrs ago. cholesterol went down to 165 from 240 6 weeks ago. tricl.went down to 107 from 400, I forget the rest but it was. Question is does anyone have an index for fruit. I do test but I am overweight 110lbs so am trying not to eat much,but noluck in that area. Beta blockers for my heart keeps me from racing heart but makes one fat:)

bill_supon at yahoo dot com

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Rather than an index, here is a website you might want to try: http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl you can look up the carb count for many different fruits, by name well this last testing of the past 6 weeks, took me to a1c of 5.8, when I began it was 12 something 1/2yrs ago. cholesterol went down to 165 from 240 6 weeks ago. tricl.went down to 107 from 400, I forget the rest but it was. Question is does anyone have an index for fruit. I do test but I am overweight 110lbs so am trying not to eat much,but noluck in that area. Beta blockers for my heart keeps me from racing heart but makes one fat:)

bill_supon at yahoo dot com

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Wonderful news. Congratulations on a job well done. — Of course that is just my opinion. I could be wrong. Chuck "If you once forfeit the confidence of your fellow citizens, you can never regain it. It is true that you may fool all of the people some of the time; you can even fool some of the people all of the time; but you can’t fool all of the people all of the time." Abraham Lincoln

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GREAT NEWS!!!! I TOO RECEIVED GOOD NEWS FROM MY LAST COLONOSCOPY. MY C/D HAD IMPROVED SINCE THREE YEARS AGO /LAST SCOPE. SMILE. OF COURSE I STILL COULD BE TREATING MYSELF BETTER…. HEY I WOULD LIKE TO KNOW WHAT MED THERAPIES U R ON?? I AM CURRENTLY STUCK ON ‘ROIDS’ AND NEED AN ALTERNATIVE. AM THINKING OF 6 MP…?? HELP…

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Annie, it sounds like you might want to try an alternative method, like a diet, to "maintain your gains". I have (had?!) Crohns and have been on Elaine Gottschall’s (aka The Specific Carbohydrate Diet) diet for over 2 years. Prior to that I was on all kinds of drugs for 16 years. I am symptom free, and have been for almost 2 years. I got off the diet for a few weeks around my wedding and suffered a small setback, had to take Pred for a month.. Like a few others have posted here, it works for some, not others. It takes dedication but is not that hard to follow. I have written a summary of my success for others to see: http://www.rtd.com/~msimons/healthy.htm Sincerely, Mike Simons – Hide quoted text — Show quoted text —— Original Message —– hi group just wanted to share the good stuff i had my gi appt today…he said i am as ok as i am gonna be…which is a whole lot better than i have been in the past 15 years or so…that i need to stay on the asacol..but that in june when i go back if i am still this ok..i can cut down to a maintenance amount.. my colonoscopy showed…NO CROHNS (thats this time…lol) so i guess i can officially just have UC for now..(i know that happened before and it changed…but maybe this will stay) this really is the best i have ever been alan said it was the deathwish hot sauce quiche.. i say..its the asacol (the quiche was almost 2 years ago ..and it was a killer…<g) but it is the first time i have gone 2 years without being in the hospital..and a whole 2 months with NO bleeding…and the pain is much much less…i am like..really pleased not overly optimistic that it will last…hoping of course..but realistic.. but happy for now… and i wanted to share my good news with the rest of you… love to you annie

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Doctors sometimes confuse the issue by being a little loose with language and calling all colon involvement "colitis" or UC, whether it’s Crohn’s in the colon or UC.

Inflammation in the colon IS "colitis" whether it’s Ulcerative Colitis, Crohn’s Colitis, or some other kind. Jan…

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Can UC "turn into" Crohn’s or vice versa? I have never heard of this happening…

The answer is a simple NO! Sincerely, Steve Gannon Cc: file

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The answer must be no I guess… But some people seem to have both CD and UC, like Annie… — Martin The Netherlands Http://www.dahlhaus.demon.nl houston heeft geschreven in bericht … – Hide quoted text — Show quoted text -Can UC "turn into" Crohn’s or vice versa? I have never heard of this happening… hi group just wanted to share the good stuff i had my gi appt today…he said i am as ok as i am gonna be…which is a whole lot better than i have been in the past 15 years or so…that i need to stay on the asacol..but that in june when i go back if i am still this ok..i can cut down to a maintenance amount.. my colonoscopy showed…NO CROHNS (thats this time…lol) so i guess i can officially just have UC for now..(i know that happened before and it changed…but maybe this will stay) this really is the best i have ever been alan said it was the deathwish hot sauce quiche.. i say..its the asacol (the quiche was almost 2 years ago ..and it was a killer…<g) but it is the first time i have gone 2 years without being in the hospital..and a whole 2 months with NO bleeding…and the pain is much much less…i am like..really pleased not overly optimistic that it will last…hoping of course..but realistic.. but happy for now… and i wanted to share my good news with the rest of you… love to you annie

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Can UC "turn into" Crohn’s or vice versa? I have never heard of this happening…

No, but a UC DIAGNOSIS can easily turn into a Crohn’s DIAGNOSIS The two are very difficult to differentiate if there is no involvement outside of the colon. The differentiation can only be done by microscopic examination of biopsies of the colon lining, and even then it’s difficult to distinguish them in some cases. Secondary symptoms are used to help, but even they are not 100% reliable. Things like UC is USUALLY contiguous and Crohn’s is USUALLY patchy; Crohn’s is SOMETIMES associated with fistulae, and UC USUALLY is not, etc. People who have both are exceedingly rare (possibly none). Doctors sometimes confuse the issue by being a little loose with language and calling all colon involvement "colitis" or UC, whether it’s Crohn’s in the colon or UC. — Larry Finch ::(whew!)

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annie, that is GREAT news!!!! keep it up! still new to the group, caryn

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Hey Annie! That IS good news! Maybe you should make more stressfull trips to Florida??? It did you good! — Martin The Netherlands Http://www.dahlhaus.demon.nl anniedear heeft geschreven in bericht … – Hide quoted text — Show quoted text -hi group just wanted to share the good stuff i had my gi appt today…he said i am as ok as i am gonna be…which is a whole lot better than i have been in the past 15 years or so…that i need to stay on the asacol..but that in june when i go back if i am still this ok..i can cut down to a maintenance amount.. my colonoscopy showed…NO CROHNS (thats this time…lol) so i guess i can officially just have UC for now..(i know that happened before and it changed…but maybe this will stay) this really is the best i have ever been alan said it was the deathwish hot sauce quiche.. i say..its the asacol (the quiche was almost 2 years ago ..and it was a killer…<g) but it is the first time i have gone 2 years without being in the hospital..and a whole 2 months with NO bleeding…and the pain is much much less…i am like..really pleased not overly optimistic that it will last…hoping of course..but realistic.. but happy for now… and i wanted to share my good news with the rest of you… love to you annie

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Can UC "turn into" Crohn’s or vice versa? I have never heard of this happening… – Hide quoted text — Show quoted text – hi group just wanted to share the good stuff i had my gi appt today…he said i am as ok as i am gonna be…which is a whole lot better than i have been in the past 15 years or so…that i need to stay on the asacol..but that in june when i go back if i am still this ok..i can cut down to a maintenance amount.. my colonoscopy showed…NO CROHNS (thats this time…lol) so i guess i can officially just have UC for now..(i know that happened before and it changed…but maybe this will stay) this really is the best i have ever been alan said it was the deathwish hot sauce quiche.. i say..its the asacol (the quiche was almost 2 years ago ..and it was a killer…<g) but it is the first time i have gone 2 years without being in the hospital..and a whole 2 months with NO bleeding…and the pain is much much less…i am like..really pleased not overly optimistic that it will last…hoping of course..but realistic.. but happy for now… and i wanted to share my good news with the rest of you… love to you annie

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Yeah Annie that’s great news! Hugs Pooh – Hide quoted text — Show quoted text – hi group just wanted to share the good stuff i had my gi appt today…he said i am as ok as i am gonna be…which is a whole lot better than i have been in the past 15 years or so…that i need to stay on the asacol..but that in june when i go back if i am still this ok..i can cut down to a maintenance amount.. my colonoscopy showed…NO CROHNS (thats this time…lol) so i guess i can officially just have UC for now..(i know that happened before and it changed…but maybe this will stay) this really is the best i have ever been alan said it was the deathwish hot sauce quiche.. i say..its the asacol (the quiche was almost 2 years ago ..and it was a killer…<g) but it is the first time i have gone 2 years without being in the hospital..and a whole 2 months with NO bleeding…and the pain is much much less…i am like..really pleased not overly optimistic that it will last…hoping of course..but realistic.. but happy for now… and i wanted to share my good news with the rest of you… love to you annie

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Annie, Congratulations!! Oh, I am so happy for you! It’s wonderful to read some good news as far as this disease goes. I bet your sense of humor and positive attitude had a lot to do with it:) Stay well, Paty

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That’s great news Annie… I think it’s the new doctor! <bg Of course, attitude has a lot to do with it too! Keep it up. SDB

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Congrats Annie!! Can I please have the quiche recipe? I am shaping my foil hat into a quiche pan even as we speak. . . Rebecca – Hide quoted text — Show quoted text – hi group just wanted to share the good stuff i had my gi appt today…he said i am as ok as i am gonna be…which is a whole lot better than i have been in the past 15 years or so…that i need to stay on the asacol..but that in june when i go back if i am still this ok..i can cut down to a maintenance amount.. my colonoscopy showed…NO CROHNS (thats this time…lol) so i guess i can officially just have UC for now..(i know that happened before and it changed…but maybe this will stay) this really is the best i have ever been alan said it was the deathwish hot sauce quiche.. i say..its the asacol (the quiche was almost 2 years ago ..and it was a killer…<g) but it is the first time i have gone 2 years without being in the hospital..and a whole 2 months with NO bleeding…and the pain is much much less…i am like..really pleased not overly optimistic that it will last…hoping of course..but realistic.. but happy for now… and i wanted to share my good news with the rest of you… love to you annie

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Hi Annie…. I want to congratulate you on your well being!!! I am so happy for you….Keagan seems to be doing great now that the 6-MP has finally started working!!! He has been having normal BM’s with no blood and we are now able to get him down off the prednisone….He is now down to 10mgs, and in another week I will be taking him down again…. Looks like the Lord sure is working in our lives huh??? This will be a great year!!! Love and hugs to you…..Tisha

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Annie, Way to go girl!!! I think our foil hats are working wonders this week. I’m going to take my hat and dress it up for Valentines Day. The weather here in Utah has been terribly cold so I think I’ll add some ear protection. Have a good one. Sue in Utah

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hi group just wanted to share the good stuff i had my gi appt today…he said i am as ok as i am gonna be…which is a whole lot better than i have been in the past 15 years or so…that i need to stay on the asacol..but that in june when i go back if i am still this ok..i can cut down to a maintenance amount.. my colonoscopy showed…NO CROHNS (thats this time…lol) so i guess i can officially just have UC for now..(i know that happened before and it changed…but maybe this will stay) this really is the best i have ever been alan said it was the deathwish hot sauce quiche.. i say..its the asacol (the quiche was almost 2 years ago ..and it was a killer…<g) but it is the first time i have gone 2 years without being in the hospital..and a whole 2 months with NO bleeding…and the pain is much much less…i am like..really pleased not overly optimistic that it will last…hoping of course..but realistic.. but happy for now… and i wanted to share my good news with the rest of you… love to you annie

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Hi John, I saw you letter on the Crohn’s bulletin board. My husband and I both have Crohn’s. I have just had my second infusion of the new drug Remicade. I think this is finally it. If you would like to talk more e-mail name is: Jetta

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been taking sulfur for about 6 months now it it seems to help the pain in the belly,but the joints still hurt–still in all i’ m very happy with the doctors help and the meds that were given to me–it took 6 months to find the right dr, but now we’re both happy. i still can’t understand some of the doctor ways of treating people–alot had to do with the payments–but some were just so dumb to the fact that uc is for real and it really hurts–all over. that God i found this dr. the uc came so suddenly, i was perfectly healty,losing weight,working out and everything-now i’m always a little tired, in a painfull way.i hope a can play ball this year.please excuse my talking, but need to vent allittle. hope all of you feel betterand will listen with open ears–i watch the board every day. get well john

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How did you manage that - to get a clear bill of health. How does one get rid of CD? Sarah

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Good for you! it’s nice to hear of success. Many people survive quite well if they pay attention to their diets. Keep up the effort and stay well.

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HI there! I’ve been reading a lot fo your posts and just wanted to lend my 2 cents. I personally have had UC for about 21 years and am really lucky enough to be a mild sufferer. I get the occasional lose bowels and some bouts of diarreha. I very rarely get any blood and get treated with low doses of pred and prilosec which are my only two precription meds. The funny thing about this diseases and Crohn’s is they are both so individualized. For example, I eat a lot of rice, grains, breads, onions, milk (acidophilous), and tons and tons of garlic. I avoid, a lot of red meat, saucy high fat foods, most chocolates, cheese (but I do eat cold sliced cheeses on sanwiches with no probs. Anyway, us crazy humans are all different but we can learn from each other. Peace, Paul Good for you! it’s nice to hear of success. Many people survive quite well if they pay attention to their diets. Keep up the effort and stay well.

Paul Goldenberg-Managing Partner Enterprise Staffing Solutions 4296 E. Agave Road Phoenix, AZ 85044 voice: 602-704-1317 fax: 602-704-1316 http://www.hi-touch.com/searchess

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After two flex-sigs, an upper GI, an ultrasound and a colonoscopy I was finally given a clean bill of health on Thursday. No chrohn’s or UC and I could not be happier! thanks to all of you for your supportive messanges and a chance to commiserate thru the last four miserable months and 30 pounds of weight loss with no end in sight. My old sorority has the CCFA as their charity and I am now bound and determined to do everything that I can to help them earn all the money they can for further research!

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Hey John I can’t tell you how many times doctors told me that all I need to do is find a less stressfull job and I would be fine. HA! I’ve been unemployed for almost 2 years and I’m still looking at bloody sewage. Venting is good. Thank God for people who understand. Jack << .please excuse my talking, but need to vent allittle.

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hi john (great name for someone with uc…sorry..<g) glad you are doing better on sulfa..i am allergic to it..but asacol seems to be helping a lot…its tough to have this come down on you ..the pains..the diarrhea..the all over ..yucko feeling that people who are "well" simply do NOT understand best of luck to you …i hope you get better and better darvocet is good for the stomach pain…tho donnatol is good too and less "hardcore" i guess…(i was on it for a couple of years..but then it stopped helping) take care annie in boston

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jack how right you and john are…we all need to vent on here… as far as doctors saying its "stress’ well……i had one long ago who said that my epilepsy was "imagined"…lol like HOW does one imagine a seizure…? thank goodness an eeg proved it was real…i left that man quickly as possible and have been with the same internist since then…never once has my internist or gi ever suggested that ibd is stress related..stress can accentuate the symptoms of course..hey it can make a cold worse…but its NOT caused by stress or really worsened by stress… but…stress if it prevents sleeping properly or eating properly CAN worsen a lot of ibd… so treating the stress is something worth doing (my internist put me on tiny doses of valium so i can sleep during the bad times..like the separation..the divorce etc.) it really helped…and i nap one hour..or thereabouts..a day…which also helps the joint pains as well as the rest of it… take care annie

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Leighann: If you need any guinea pigs/survey takers – I’m sure we would all give you any help/info you need. Good luck! Rebecca – Hide quoted text — Show quoted text – definitely be sure to pack my foil hat when i move!!! the program is Chronic Disease Epidemiology and i am SO excited!! i want to research the psychosocial risk factors of ibd and develop a model for how stress exaccerbates disease activity (i know its individual.. so perhaps, more than one general model). since the program is specific for chronic diseases and its in the medical school, i hope to have access and opportunity to do this research. i’ll know more once i find out who my advisor will be. i will definitely keep you all posted! again, THANKS for all the hugs, and congratulations! everyone on this newsgroup is so wonderful and i am SO thankful for everyone of you!! hugs for all!!! love, leighann : Congrats, LeighAnn! What are you going to be studying?

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WAY TO GO LEIGHANN!!!! More power to you!! Maryjo

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Congratulations, I went through two years of grad school with this disease and did fine. Just make sure you have good health insurance. I deferred the insurance offered by the school, because it only covered 1,500 dollars of a pre-existing condition. If you are buying the school insurance check it carefully. You may do better buying your own.

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Congrats, LeighAnn! What are you going to be studying?

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leighann wow awesome CONGRATS thats super…you will do great…what are you studying there anyway? as for mds in new haven..well you can always come to boston <vbg annie

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Leighann, Way to go! Awesome! I wish we could throw you a party and have all our favorite foods and wear our foil hats. Sue in Utah

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This is wonderful. Congradulations and good luck. Love with hugs & kisses Susan

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definitely be sure to pack my foil hat when i move!!! the program is Chronic Disease Epidemiology and i am SO excited!! i want to research the psychosocial risk factors of ibd and develop a model for how stress exaccerbates disease activity (i know its individual.. so perhaps, more than one general model). since the program is specific for chronic diseases and its in the medical school, i hope to have access and opportunity to do this research. i’ll know more once i find out who my advisor will be. i will definitely keep you all posted! again, THANKS for all the hugs, and congratulations! everyone on this newsgroup is so wonderful and i am SO thankful for everyone of you!! hugs for all!!! love, leighann

: Congrats, LeighAnn! What are you going to be studying?

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hehe rebecca!!! i love you too

: Congrats Leighann!!!! : I bet at Yale they have computers with the ability to type with capitol : letters <BG. : You know I love you! : Rebecca : hi everyone… i just wanted to share with you all my good news. i’ve : been posting a lot the last month or so because i’ve been going thru a : nasty flare and had to take pred for the first time.. you all were : wonderful in supporting me and giving me tons of great information. : well, the flare hasn’t been the only thing that has been on my mind, : though. i’ve also been waiting to hear about getting into graduate : school.. and on friday i found out i was accepted to yale!!! so i’m VERY : excited and now i have to find a gi in new haven, ct. anyone know of : one? anyway, i just wanted to share with you all my piece of good news. : it was very hard for me in college (when i was dx’ed with crohns) and : i’ve worked really hard to attain this and now i have something to show : for all my hard work. be well everyone!! love,leighann :

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thanks for the recomm. is he part of the yale medical system? is he near campus.. i’ll be a poor grad student and i’m hoping to avoid bringing a car with me. i’ll probably get back to you again for more info as i get closer to making my move up there. again thanks! he sounds like a wonderful doctor. (and congrats on your doctoral degree!!). -leighann

: Congratulations! Yale’s a great school. I live near New Haven, and can highly : recommend my GI. His name is Ronald Vender. Email me if you need contact info. : He is top rate. I have Crohn’s disease, and Dr. Vendor saw me through a high : risk pregnancy and a very nasty postpartum flare. He is compassionate and : skilled and I can recommend him without hesitation. I’ve been in remission for : 14 years so I haven’t seen him much, but I’ve referred several people to him : over the years who have been happy. : Good luck at grad. school. I’m just finishing my doctoral degree (hallelujah!).

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Leighann- Congratulations!!!!!! All the hard work paid off. Tracy

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Congradulations Leighann….. You should be proud of yourself…We know how hard it is to attain something like this when you have this disease that can get the better of you…..I am proud of you! Maryjo

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Congrats Leighann!!!! I bet at Yale they have computers with the ability to type with capitol letters <BG. You know I love you! Rebecca – Hide quoted text — Show quoted text – hi everyone… i just wanted to share with you all my good news. i’ve been posting a lot the last month or so because i’ve been going thru a nasty flare and had to take pred for the first time.. you all were wonderful in supporting me and giving me tons of great information. well, the flare hasn’t been the only thing that has been on my mind, though. i’ve also been waiting to hear about getting into graduate school.. and on friday i found out i was accepted to yale!!! so i’m VERY excited and now i have to find a gi in new haven, ct. anyone know of one? anyway, i just wanted to share with you all my piece of good news. it was very hard for me in college (when i was dx’ed with crohns) and i’ve worked really hard to attain this and now i have something to show for all my hard work. be well everyone!! love,leighann

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hi everyone… i just wanted to share with you all my good news. i’ve been posting a lot the last month or so because i’ve been going thru a nasty flare and had to take pred for the first time.. you all were wonderful in supporting me and giving me tons of great information. well, the flare hasn’t been the only thing that has been on my mind, though. i’ve also been waiting to hear about getting into graduate school.. and on friday i found out i was accepted to yale!!! so i’m VERY excited and now i have to find a gi in new haven, ct. anyone know of one? anyway, i just wanted to share with you all my piece of good news. it was very hard for me in college (when i was dx’ed with crohns) and i’ve worked really hard to attain this and now i have something to show for all my hard work. be well everyone!! love,leighann

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Carole – Hide quoted text — Show quoted text – hi everyone… i just wanted to share with you all my good news. i’ve been posting a lot the last month or so because i’ve been going thru a nasty flare and had to take pred for the first time.. you all were wonderful in supporting me and giving me tons of great information. well, the flare hasn’t been the only thing that has been on my mind, though. i’ve also been waiting to hear about getting into graduate school.. and on friday i found out i was accepted to yale!!! so i’m VERY excited and now i have to find a gi in new haven, ct. anyone know of one? anyway, i just wanted to share with you all my piece of good news. it was very hard for me in college (when i was dx’ed with crohns) and i’ve worked really hard to attain this and now i have something to show for all my hard work. be well everyone!! love,leighann

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I started making notes of my bad days on the days that I was feeling good. I soon realized that i was not able to hold a pen in my hands very long I had a hard time reading what I wrote. And the number of bad days out weighed the good days. And it would be months before I could write in the book. I think it is beneficial for someone other than yourself write in the log book to.

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How about keeping a log of your aches & pains until your appointment? It might give both you and your RD a clearer picture of your physical condition. You know, my husband’s been buggin me to do that for years – why can’t I seem to do it? Maybe this time I’ll really try. Christi Go for it, Christi… just don’t get carried away with the description… a couple of words per entry should do it. Best of luck,

I’ve been told that social security love it if you have daley log also. —- The Skipper To reply remove "booger".

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Hi Shelley…. I’m new to the group and your post caught my attention..I know how you feel when you’re in pain and you know there is something wrong but the tests are negative…I was curious if your doc mentioned anything about Still’s Disease….it’s an Adult Onset of Juvenile Rheumatoid Arthritis…..it’s rare but the main symptons that we all have in common is : Rash(salmon colored and usually does not itch) , fevers that spike to 105-106, a NEGATIVE RA FACTOR, elevated sed rates( most of us were around 120-170 range) ….of course you have the usual with RA morning stiffness, joint swelling, immobility, fatigue, insomnia, terrible pain….I didnt know what type of symptons you had and if you have been having fevers….Still’s is usually one of the last diseases to be ruled out….what I mean is the test you for everything from RA to lyme disease to Epstein Barr Virus to CMV to Lupus to Hodgekins..you name I’ve had the test…the treatment is about the same is RA prednisone, NSAIDS, and usaually DMARDS…..I have been on MTX for 7 years and it has really helped me….I’m 26 have had one hip replaced and having another and have some wrist damage…but I feel Im doing good from being completely crippled, unable to walk or use my hands….thanks to the MTX…those of us who have Still’s Disease have a info website…and a email discussion, there are people s disease history on the website and it has some good info…unfortunalty there isnt alot of info about Still’s out there……there are alot of docs who havent heard of it..if you want any info on it just email me and I’ll send you the website….take care…and hope evrything works out well for you Jennifer RANGERS LEAD THE WA

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add no sleep the night before

well, actually, i *did* do this, but not really on purpose — i’ve been getting major insomnia lately, falling asleep around 5ish, only to have to get up at 7 for work… so i just stayed up all night that Friday and went in on Saturday morning to see the RD. gee, i guess i looked sufficiently cruddy, huh? i didn’t even need to show him all my copious notes. i did give him a quick summary of the patterns i had observed — swelling, redness and heat in various joints on a daily basis, periods of low-grade fever, extended bouts of muscle spasms. what seems to have turned my doc around more than anything, though, was the very high ANA number from my last round of blood tests. also, thanks to an impending snow storm, the joints in my hands "cooperated" by being puffy, hot and bright red. hard to ignore that. btw, anyone here on Plaquenil? how long until the "initial" side effects pass? they *do* pass, right? i am getting major fatigue, headaches and nausea, but i seem to get to get that with many new meds when i first start taking them. please, please, please tell me that this will go away, or at least reduce in severity, once i adjust. right? right????? Shelley

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I think it is beneficial for someone other than yourself write in the log book to.

another option would be to keep your log on your computer — perhaps set up a special file in your appointment program… though a spreadsheet program or just a word processor would also work…. i find that when my hands are flaring, i don’t have nearly as much problem typing as i do holding a pen. in fact, moving my fingers around on the keys keeps my knuckles from gelling. oh, yeah, and to simplify, it’s good to make up some codes (jot the key down somewhere) for common (recurring) stuff. if you keep your log on the computer, you can do a search and replace to spell the stuff out again before printing it for your doctor. Shelley

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Over the past months I have gotten good at smiling and saying "I’m fine" when asked how I feel today. I don’t "look sick" and the explaining was getting tedious. NO MORE! I went to physical therapy yesterday and when the standard question was asked, I told him I felt like "crap" and I wasn’t lying to anyone ever again! This is a new side of me and I’m not sure if I like it yet but it sure did feel good yesterday! LOL Christy

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My previous RD and I had a falling out because one day I realized what different views we had of my condition. My initial thought was that she was lying in her reports to my Primary to give her more referals. In hind sight I think she heard what she wanted to hear, and I have to take some of the responsibility and say that I should have been more forthcoming about the symptoms I was experiencing. As a child, growing up in the neighborhood I did, one of the worst possible things you could be labeled was a whiner. If the other kids found out they could get to you, you were done. They would make your life a living hell on earth. As an adult, I know better than to not discuss problems with my doctors, but I think I still have those old tapes playing to a certain extent. I don’t conciously withhold information, but I think I may still play down problems, without meaning to. It’s a stupid thing to do because now, if my RD doesn’t have the correct infomation, that can cause my life to be a living hell. —- The Skipper To reply remove "booger".

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I’m sure that a lot of the problem is that I don’t look like there is

anything wrong with me. and due to the working my trade for several years after I got sick, I’m also very good at acting like there is nothing wrong. One would think that RDs would be used to that. I guess I’m curious as to whether the Drs in the group find that patients minimise or whine about their aches and pains?< The Skipper I can sure emphathize about this. While my rheumo and my family doc understand, it’s the rest of the world I have a problem with. I swim regularly, work really hard at keeping my weight down, take my meds and get a lot of rest. As a result, like The Skipper, I don’t look like there is much wrong with me either, and when people find out I am on permanent disability, instead of working at a job I loved, I get the requisite cracks about "working the system". My standard response these days is "And you got your medical degree where?" Anne Anne Christopherson "Old roses are full of instructions on how to live right."

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I don’t look like there is much wrong with me either, and when people find out I am on permanent disability, instead of working at a job I loved, I get the requisite cracks about "working the system".

This is one of my big fears. I plan on talking to the dr on friday about disability. BIG step to take!!! Keep Smilin’ ~Krissy "The most thoroughly wasted of all days is that in which one has not laughed." Nicolas Chamfort

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– Hide quoted text — Show quoted text – This is great Shelley…did you get a chance to show him all your info you brought with you? Do you think that may have partially turned him around? I’m glad he is listening and open minded now. Doesn’t it stink we have to be sick enough to look sick?? Kate Send in the clowns SORRY – LONG! I had to reply to this as it rings so many bells with me. I’m 24 and at first glance look completely fine…young, healthy, even cheerful sometimes I’ve got RA and have had it for 9 years. All the RDs I’ve had over the years seem to think I’m just fine even though my CRP (C-reactive protein) is usually up around the 70’s and 80’s. I have such a hard time convincing them that I’m really not fine and that I have a hard time sleeping, getting dressed, raising food to my mouth even (and I do LOVE my food!). Anyway, yesterday I went to my RD and told him that my left shoulder is getting very bad and that I’m losing range of motion at an alarming rate. He didn’t believe me until I took off my top and he sort of squeezed my shoulder and all that stuff – quite dismissively – then when I raised my arm up in front of me as high as I could all you could hear was CRACK, CRACK, CRACK, CRACK, CRACK, CRACK, CRACK. He was extremely shocked – eyes like saucers, etc and started mumbling stuff under his breath in a sort of panicky tone of voice. He sent me for x-rays but refused to give me a steroid shot this time round, ho-hum. It really bloody annoys me that RDs don’t believe what I say and that you have to go to the lengths of making it sound like your arm is breaking to convince them…it shouldn’t be like this. I’ve finally booked an appointment with a physiotherapist today, at great cost as I have no insurance…hopefully she can help, either that or I’ll come out crying I reckon (sounds painful!). I’m so fed up that the only people you ought not have to convince because, mostly, the blood result evidence is there right before them, are the people who often take the most convincing…. Grrr, bad day yesterday! ruth arnold

I mentioned this in another post, but it is real appropriate here. I’m 44 and am over-weight, but before this disease got bad I worked hard and lifted weights, and I still carry a good bit of muscle mass and I don’t look "sickly" by any stretch. I had my first visit with my new RD a few weeks ago, and my first impression of her was that she was pretty nasty. She gave me no end of crap about my weight, and my smoking,( ya, lady, nobody’s ever mentioned this to me) didn’t offer to refil my perscriptions for me, nothing. It was bad enough that I very nearly didn’t go back. The reasons I did were that it was an early morning appointment and I can understand getting up on the wrong side of the bed. I was comming down with pneumonia so my judgement could have been off, and she did sign a referal for me to get a liver biopsy. That first appointment she didn’t have any of my records yet. This last visit she had some of my record and the results of blood tests that she had ordered. She looked over my paperwork, and she was like a different person. I couldn’t believe it. I felt like asking her what had happened to her evil twin. I’m sure that a lot of the problem is that I don’t look like there is anything wrong with me. and due to the working my trade for several years after I got sick, I’m also very good at acting like there is nothing wrong. One would think that RDs would be used to that. I guess I’m curious as to whether the Drs in the group find that patients minimise or whine about their aches and pains? —- The Skipper To reply remove "booger".

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Hi Ruth, I don’t like the sounds of your RD at all. Have you considered trying a different one. Just to give you the other side of the coin. When I go in complaining about my shoulder if it has been an ongoing problem with no relief first my doctor does all sorts of range of motion with my arm to locate the exact position of the problem. I’ve already tried the physiotherapy route without success so we book an appointment for a cortisone shot, which works great and lasts usually 6-12 months. This last time I put myself in an arth. exercise class to try and build up the strength in my arms to hopefully prevent this happening again. I think the muscle weakness in my arms is what puts so much stess on the tendons. Hope you can get some relief soon. Catherine "And the beat goes on." – Hide quoted text — Show quoted text – snip Anyway, yesterday I went to my RD and told him that my left shoulder is getting very bad and that I’m losing range of motion at an alarming rate. He didn’t believe me until I took off my top and he sort of squeezed my shoulder and all that stuff – quite dismissively – then when I raised my arm up in front of me as high as I could all you could hear was CRACK, CRACK, CRACK, CRACK, CRACK, CRACK, CRACK. He was extremely shocked – eyes like saucers, etc and started mumbling stuff under his breath in a sort of panicky tone of voice. He sent me for x-rays but refused to give me a steroid shot this time round, ho-hum. It really bloody annoys me that RDs don’t believe what I say and that you have to go to the lengths of making it sound like your arm is breaking to convince them…it shouldn’t be like this. I’ve finally booked an appointment with a physiotherapist today, at great cost as I have no insurance…hopefully she can help, either that or I’ll come out crying I reckon (sounds painful!). I’m so fed up that the only people you ought not have to convince because, mostly, the blood result evidence is there right before them, are the people who often take the most convincing….

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He didn’t believe me until I took off my top and he sort of squeezed my shoulder and all that stuff – quite dismissively – then when I raised my arm up in front of me as high as I could all you could hear was CRACK, CRACK, CRACK, CRACK, CRACK, CRACK, CRACK.

Hi Ruth.. my experience with this was the extreme pain in the first years of RA without the swelling and joint changes.. no one could see it so no one believed it. As twisted as it sounds i was glad to get a few lumps and bumps so i could hold them up and say see i told ya so… Anyway regarding the crack crack crack- that was the case with my hips.. i went to a pt hoping to avoid surgery and when he heard them popping like popcorn he said I’ve never heard anything like that and I think you need hip replacement before i touch you..and he was right. Kate Send in the clowns

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another option would be to keep your log on your computer —

Funny, as I was lying in bed last night I was thinking the same thing. Especially since mornings are the worst, when I try to write notes for my kids for school I can hardly read my own writing – typing is difficult, but you can at least read it when I’m done! But mornings are probably the time when I have the most time and energy to do it. Okay, I resolve to start today! Christi

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This is great Shelley…did you get a chance to show him all your info you brought with you? Do you think that may have partially turned him around? I’m glad he is listening and open minded now. Doesn’t it stink we have to be sick enough to look sick?? Kate Send in the clowns

SORRY – LONG! I had to reply to this as it rings so many bells with me. I’m 24 and at first glance look completely fine…young, healthy, even cheerful sometimes I’ve got RA and have had it for 9 years. All the RDs I’ve had over the years seem to think I’m just fine even though my CRP (C-reactive protein) is usually up around the 70’s and 80’s. I have such a hard time convincing them that I’m really not fine and that I have a hard time sleeping, getting dressed, raising food to my mouth even (and I do LOVE my food!). Anyway, yesterday I went to my RD and told him that my left shoulder is getting very bad and that I’m losing range of motion at an alarming rate. He didn’t believe me until I took off my top and he sort of squeezed my shoulder and all that stuff – quite dismissively – then when I raised my arm up in front of me as high as I could all you could hear was CRACK, CRACK, CRACK, CRACK, CRACK, CRACK, CRACK. He was extremely shocked – eyes like saucers, etc and started mumbling stuff under his breath in a sort of panicky tone of voice. He sent me for x-rays but refused to give me a steroid shot this time round, ho-hum. It really bloody annoys me that RDs don’t believe what I say and that you have to go to the lengths of making it sound like your arm is breaking to convince them…it shouldn’t be like this. I’ve finally booked an appointment with a physiotherapist today, at great cost as I have no insurance…hopefully she can help, either that or I’ll come out crying I reckon (sounds painful!). I’m so fed up that the only people you ought not have to convince because, mostly, the blood result evidence is there right before them, are the people who often take the most convincing…. Grrr, bad day yesterday! ruth arnold

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I was thinking along the same lines, add no sleep the night before (bags add to the "look) and absolutely no makeup. You’ll have no problem convincing him! Keep Smilin’

Now I said I wanted to convince him, not scare him to death! Christi

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Hi, Christi; How about keeping a log of your aches & pains until your appointment? It might give both you and your RD a clearer picture of your physical condition.

You know, my husband’s been buggin me to do that for years – why can’t I seem to do it? Maybe this time I’ll really try. Christi

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If you have a neck brace you could wear that in and definitely put on a resting splint and wrist brace or two, if you have them. Add a cane and you’re all set. When he/she says, "my God you must be having a hard time", you can plead insanity when you remove all the parafinalia and explain your reasoning. LOL. I’m just picturing you now. Don’t mean to make anyone who has to wear all this stuff on any given day feel badly. I’ve been through it too. Catherine "And the beat goes on."

So far I don’t have any of the "paraphernalia" (SP?) but maybe I could borrow some for the occasion! Christi

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Go for it, Christi… just don’t get carried away with the description… a couple of words per entry should do it. Best of luck,

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- Hide quoted text — Show quoted text – Doesn’t it stink we have to be sick enough to look sick?? Kate Send in the clowns I’m a little concerned about that myself, I’m afraid when I have my appointment in Feb. with a new RD I won’t be "looking sick" that day and he’ll dismiss me. Any suggestions on how to convince, if that’s the case? Christi If you have a neck brace you could wear that in and definitely put on a resting splint and wrist brace or two, if you have them. Add a cane and you’re all set. When he/she says, "my God you must be having a hard time", you can plead insanity when you remove all the parafinalia and explain your reasoning. LOL. I’m just picturing you now. Don’t mean to make anyone who has to wear all this stuff on any given day feel badly. I’ve been through it too. Catherine "And the beat goes on."

I was thinking along the same lines, add no sleep the night before (bags add to the "look) and absolutely no makeup. You’ll have no problem convincing him! Keep Smilin’ ~Krissy "The most thoroughly wasted of all days is that in which one has not laughed." Nicolas Chamfort

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Good News, Shelley….Hope your meds help. Glad the doc listened. Makes a difference! — Marijo Replies to: Shelwood wrote in article – Hide quoted text — Show quoted text – so apparently my doctor managed to slay his evil twin. yay, doc *grin*. Shelley

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Doesn’t it stink we have to be sick enough to look sick?? Kate Send in the clowns I’m a little concerned about that myself, I’m afraid when I have my appointment in Feb. with a new RD I won’t be "looking sick" that day and he’ll dismiss me. Any suggestions on how to convince, if that’s the case? Christi

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I’m a little concerned about that myself, I’m afraid when I have my appointment in Feb. with a new RD I won’t be "looking sick" that day and he’ll dismiss me. Any suggestions on how to convince, if that’s the case? Christi

Hi, Christi; How about keeping a log of your aches & pains until your appointment? It might give both you and your RD a clearer picture of your physical condition. Leslie

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Doesn’t it stink we have to be sick enough to look sick?? Kate Send in the clowns

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well, i had my latest visit with my RD. for those with good memories, my previous visit had been rather unpleasant, with my dr implying that he wasn’t sure anymore that i have RA (i have a negative rheumatoid factor), and me leaving very upset. it went MUCH better this time. i had started keeping a "pain" diary, and was armed to the teeth with info. i resisted the urge to take polaroids during a flare… but it turns out i didn’t need any of that. my last round of blood tests, done at that last appointment, came back with an extremely high ANA level (it had been normal back in August), and a somewhat elevated sed rate. my dr all but apologized for giving me the impression that he disbelieved me last time. he said, "well, it’s obvious we aren’t dealing with just fibromyalgia." duh. anyway… after giving me such a hard time last time for asking to be put on a DMARD, he ended up putting me on plaquenil (hydroxychloroquine). he still won’t commit to an RA diagnosis, because of the sero-negative thing, but my symptoms match up pretty well with RA (and not lupus)… oh, and he had me jack my prednisone dosage up again for a while until the plaquenil kicks in. all in all, i left with a much better feeling. as he was leaving the exam room, he turned back and told me, "you know, i never doubted that there was something wrong with your joints." sure, doc. then he told me to call him in two weeks and let him know if i’ve seen any improvement (i’ve had some major league insomnia lately, 2 hours of sleep a day.). i was glad to hear that. oh, and my boyfriend’s father is going to the same RD for gout. he told me today that the doctor called him at home on Friday just to see how he was doing. i was pretty impressed by that, since i know that the RD doesn’t have office hours on Fridays — it’s his day off. so apparently my doctor managed to slay his evil twin. yay, doc *grin*. Shelley

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I drive Honda CRX, I’ve never had any problem so far. I think Honda is a good car to drive and gas saver, what do you think?

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Um, it sounds like you’re preaching to the converted…

|I drive Honda CRX, I’ve never had any problem so far. I think Honda is |a good car to drive and gas saver, what do you think?

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I posted last week about prescription trouble with my internist. Had a scheduled visit on Tuesday, and He apologized a few times for the mistake, and talked about his fears about narcotics. He was sued by a patient for prescribing meds and "hooking’ her on them although she had reported continued pain. He did seem sincere, and worried about narcotics. I think he does not know how to deal with his feelings about it all. But he showed me new ’scripts, and said he was sorry this had happened. He talked with three pharmacists and did not seem aware there had been a continued problem. — Bess This too shall pass.

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I posted last week about prescription trouble with my internist.

Glad it seems to have worked out well…keep your eyes on those snippy office staff tho!…. ;~)

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From Bess Glenn: I posted last week about prescription trouble with my internist. Had a scheduled visit on Tuesday, and He apologized a few times for the mistake, and talked about his fears about narcotics. He was sued by a patient for prescribing meds and "hooking’ her on them although she had reported continued pain. He did seem sincere, and worried about narcotics. I think he does not know how to deal with his feelings about it all. But he showed me new ’scripts, and said he was sorry this had happened. He talked with three pharmacists and did not seem aware there had been a continued problem.

sounds like he will be OK to stick with for awhile. that’s good. but if he messes with you again, I’d be shopping around… xoxo -kk <<<<http://members.home.net/karensears<<<< – Hide quoted text — Show quoted text –

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I’ve been told that social security love it if you have daley log also. —- The Skipper To reply remove "booger".

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add no sleep the night before

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I think it is beneficial for someone other than yourself write in the log book to.

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I’m sure that a lot of the problem is that I don’t look like there is

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another option would be to keep your log on your computer —

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I was thinking along the same lines, add no sleep the night before (bags add to the "look) and absolutely no makeup. You’ll have no problem convincing him! Keep Smilin’

Now I said I wanted to convince him, not scare him to death! Christi

Response:

Hi, Christi; How about keeping a log of your aches & pains until your appointment? It might give both you and your RD a clearer picture of your physical condition.

You know, my husband’s been buggin me to do that for years – why can’t I seem to do it? Maybe this time I’ll really try. Christi

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So far I don’t have any of the "paraphernalia" (SP?) but maybe I could borrow some for the occasion! Christi

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Go for it, Christi… just don’t get carried away with the description… a couple of words per entry should do it. Best of luck,

Response:

Hi, Christi; How about keeping a log of your aches & pains until your appointment? It might give both you and your RD a clearer picture of your physical condition. Leslie

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Doesn’t it stink we have to be sick enough to look sick?? Kate Send in the clowns

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I drive Honda CRX, I’ve never had any problem so far. I think Honda is a good car to drive and gas saver, what do you think?

Response:

Um, it sounds like you’re preaching to the converted…

|I drive Honda CRX, I’ve never had any problem so far. I think Honda is |a good car to drive and gas saver, what do you think?

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I posted last week about prescription trouble with my internist.

Glad it seems to have worked out well…keep your eyes on those snippy office staff tho!…. ;~)

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received from my elderly cousin. possible sign of improved behavior on the part of the elderly. Older people are less likely than younger people to react aggressively when problems come up in their relationships, says a University of Michigan study. "Older people appear better able than younger people to pick their battles,"

…and boy, do we ever pick battles… – Hide quoted text — Show quoted text – says Kira Birditt. "When they’re upset with others, older people are more likely to do nothing or to wait and see if things improve. Younger people, on the other hand, are more likely to argue and yell." The study, published in Journal of Gerontology: Psychological Sciences, finds people may become better able to regulate their responses to problems as they age. — getting out of bed in the morning is an act of false confidence - jules feifer to email me, delete blackhole. from my return address

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- Hide quoted text — Show quoted text – received from my elderly cousin. possible sign of improved behavior on the part of the elderly. Older people are less likely than younger people to react aggressively when problems come up in their relationships, says a University of Michigan study. "Older people appear better able than younger people to pick their battles," says Kira Birditt. "When they’re upset with others, older people are more likely to do nothing or to wait and see if things improve. Younger people, on the other hand, are more likely to argue and yell." The study, published in Journal of Gerontology: Psychological Sciences, finds people may become better able to regulate their responses to problems as they age.

I would certainly agree with this. I am much more careful about choosing my battles and attempt to avoid conflict whenever possible. I also don’t understand those here, who seem to seek out conflict and use character assassination as a weapon.

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people are more likely to do nothing or to wait and see if things improve. Younger people, on the other hand, are more likely to argue and yell." The study, published in Journal of Gerontology: Psychological Sciences, finds people may become better able to regulate their responses to problems as they age. I would certainly agree with this. I am much more careful about choosing my battles and attempt to avoid conflict whenever possible. I also don’t understand those here, who seem to seek out conflict and use character assassination as a weapon. X-No-Archive:yes I’ve always thought that the most interesting and knowledgable posters here are provocative without being combative and that they energize our discussions. I see this forum as a place to discuss current issues of the day – and other subjects – by stating our own opinions. I find that I always learn something from the other posters who look at these issues from another geographical or intellectual point of view. As a political scientist, I was taught to see all sides of an issue and that politics is the art of compromise. It has been a most helpful credo to follow. Since this is a ‘retirement’ group, I would expect that we are all grown-ups here and that we will behave.

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