Question:

I have had Crohns since I was 9. I had surgery twice, at ages 14 and 16, and had approx 2ft removed. Since then, I have had no return of CD. It is now 15 years remission. I am treated as a bit of a rarity in the UK (to say the least). Does anyone know of any longer "remissions"?

In remission 18 years from CD.  Kinda makes ya wonder what they did right. Rick

Response:

I have had Crohns since I was 9. I had surgery twice, at ages 14 and 16, and had approx 2ft removed. Since then, I have had no return of CD. It is now 15 years remission. I am treated as a bit of a rarity in the UK (to say the least). Does anyone know of any longer "remissions"? — Graham Lee "I have something to say, it’s better to burn out than to fade away" – Hide quoted text — Show quoted text – As far as your questions, most people with crohns I have talked to eventually have periods of remission, but it never goes away 100%, and it will come back. Forrest Forrest, fyi, my Crohns has gone away 100%, and stayed away 100% for 3 years now.  Thus far, since my diagnosis 3 years ago (and remission achieved with prednisone), it has happily not come back.   Ariel My chrones was in remission for ten years,and then came back bad. Danny

Response:

As far as your questions, most people with crohns I have talked to eventually have periods of remission, but it never goes away 100%, and it will come back. Forrest

Forrest, fyi, my Crohns has gone away 100%, and stayed away 100% for 3 years now.  Thus far, since my diagnosis 3 years ago (and remission achieved with prednisone), it has happily not come back.   Ariel

Response:

- Hide quoted text — Show quoted text – Hello there, I’m Peter, 32 years old. I have been reading the postings in this newsgroup for some time, and hope that some of you find the time to read my message, and reply, so maybe I get an idea of things to come. I’ve been having al kinds of health problems for the last three years. My dokter "fixed" most of them, And I have even had some minor Anal surgery without anyone ever seeing any connection between al those "incidents". Over time the problems came more frequent, got worse, and finaly they were here to stay. For the last year I had bowel cramps and diarhea. It started unalarming, but got worse and worse. First my dokter told me it was stress, and would go away by itself. That made sense at the time because I was not enjoying my work. But nothing changed after getting a new job. My dokter now told me it had to be a spastic colon, and things would be better if I ate a lot of fiber: wholegrain products, etc. This was a problem, because we already ate about all the wholegrain products the shops sell, so I managed to get medication. But still nothing changed and things went gradually worse. I had Anal fisura most of the time and I got really tired very easy, while I used to be in good shape (seakayaking, backpacking etc.) At the start of this year the bowel cramps got really bad, and in march my joints started hurting. Still my dokter didn’t have a clue. Only when Ilost 3 kg of weight in half a week, got so tired that I went straight back to bed after taking a shower in the morning, and was hardly able to climb the stairs to the bedroom could I convince him to send me to the hospital as an emergency. (I had been waiting to see a specialist for some weeks already, but my appointment was still some weeks in the future.) I went to the hospital on 11 april. It took the specialist about 10 minutes to figure out that I needed to stay in the hospital, and that I most likely was suffering from IBD.(which I had never heard of at the time) He also told me that most of my recent medical problems had to be related to IBD. I was in hospital for almost four weeks. I don’t think I need to tell about the diet and all the examinations and test, but they figured out I had Crohns disease. By the time I left the hospital I was on Salofalk and Prednisone, my jointpaint had gone, and the bowelpain and diarhea were a lot less. I had lost 13 Kg and was still very weak and tired. I was realy positive, but soon I found out my IBD dokter had not really told me very much about what it meant to have Crohns. I knew it was chronical, and I also knew things differed very much from person to person. But he kept telling me that everything would be normal most of the time(so I figured Crohns could not be that bad). At first things went for the better (very slowly), and my weight got normal. My Prednisone dose was down to 10 mg. After some time I got more tired, and started to have bowelpains more often. But all my Dokter did was taking bloodtests (which were showing things went for the good) and asking how many times a day I went to the bathroom. And he also said he didn’t understand why I was not going to work. He did prescribe me a higher dose of prednisone when I kept pushing about why things had gone worse, but still wasn’t going to tell me anything more. In the end I felt like I was making things up, and I’m feeling very confused now. I have never been complaining about any health problems very much. Not even when things were realy bad. So why should I make things up? On the other hand: I’m feeling bad for so long now it is hard to remember how I am supposed to feel. The stories I read in this newsgroup are so different from the story my dokter tels me (and he is supposed to be the specialist) I am beginning to think he doesn’t know either. Or Maybe I didn’t want to hear the bad news at first. I have been reading a lot about the medical aspects of Crohns, but I can’t find a lot about what it is like living with the disease. I had a conversation recently with a woman who was diagnosed with CD two years ago. I now am beginning to think things are not really that positive. And eventhough most people I know are really kind, I don’t believe some of the responses I get. Already several people have said that things can’t be that bad because I don’t look ill, and someone even mentioned to me that I should have washed my hands more properly (so much for the cause of Crohns). I am in big need of some understanding reactions, because I really don’t understand things myself. Some of the questions I have  are: – is it realy likely that things will go back to normal – or am i going to live with pains and diarhea – is it normal that I keep feeling tired – Why am I also restless and hyperactive at the same time as feeling tired. – is it possible that any of these are drug related? – is it likely that I am to give up seakayaking etc. (would be a real downer, and is bothering me really much) Sorry, this posting has become quite long. It must be troubeling me really bad. Your experiences and opinions mean a lot to me. It will probably make me feel a lot better. Thanks for being so patient to read the whole story. And I appologise for any badly written English. Peter Heuts

Dear Peter: I have been diagnosed with Crohn’s disease for 22 years (I’m 40 now), so perhaps you would be interested in my experiences. I have had some experiences similar to yours. To begin with, let me say that in my family, we didn’t go to the doctor unless somebody was really sick or needed stitches – we believed in the "stoic" theory of illness – ignore it and hope it will go away (not recommended with Crohn’s). I had fairly-mild symptoms for several years, that went undiagnosed (actually, I didn’t even go to a doctor). When I got really sick the first time, I was in college (18) and lost about 20kg in two months, with a lot of diarreah, and intermittent pains that had me rolling around on the ground. The university doctor didn’t have a clue, but when I went home for Christmas, I was finally diagnosed with Crohn’s, and put on prednisone. It was amazing how fast I felt better – I also have a tendency to forget what it feels like to feel good. The doctor gave me the regular talk about how I would live a normal life, etc., so I didn’t take it seriously, and quit bothering about it soon after I went back to school. (I did get a doctor, but he wanted me to come in every week so he could poke his finger in my stomach, say I still had it, bill me, and give me one week’s medicine. So when I started feeling a little better, I dropped him and ignored the symptoms). This worked ok for a few more years (not recommended – I don’t think I have nearly as bad a case as many people here, or I wouldn’t have lived as long as I have). Anyway, I’m pretty stubborn, so I went on to grad school as planned, but Crohn’s knocked me out again in my second year (when I was 23). Since I hadn’t been treating the symptoms, the Crohn’s had done enough internal damage that it no longer responded to prednisone. I had to take a term off for surgeries, recovery, etc. The worst of it was that since I was so busy ignoring it, I didn’t even have a doctor, and I was stuck with whoever the hospital assigned in the emergency room. It took me 5 weeks to get out of that hospital, and I lost another 20kg (down to about 129lb or 60kg, and I’m 6ft tall (1.8m)). Since I had been ignoring the symptoms, the Crohn’s had damaged my right ureter and kidney, so those had to be "repaired" as well when they did the bowel resection. When I got strong enough, I got back into classes, and used swimming, biking and weightlifting to get back in shape. I finished grad school, got my PhD, and went out to work. In the last 17 years, I have had problems with kidney stones; kidney damage due to a scarred/blocked ureter; surgery to repair the kidney and ureter, high bp due to kidney blockage/damage, polyps, etc. I have a fair amount of chronic pain, but it comes and goes, as does my energy level. I generally am able to work a 40-50hr week, unless it’s time for surgery. When I’m feeling good, or even marginal, I am quite active physically – you have to get in shape when you can. I feel that this is quite important, because it’s a lot easier to live if it only takes 60-70% of your peak "well" ability to survive. In my experience, you may only be operating at 60-70% of peak a lot of the time. These days, the prednisone is usually pretty effective, but I try not to take it – that stuff has a list of bad side effects as long as your arm. I’ve tried the old sulfa drugs (sulfalazine?) and the newer ones (asacol) with little or no success; I’m still staying away from the newer ones like 6mp, etc. I guess I still pretty try to ignore the Crohn’s as much as possible. Anyway, to answer your questions (based on my experiences) – DON’T assume it will go away, or try to ignore it when your symptoms are bad – if it hurts, something is probably being damaged in there. You need to have a good doctor(gastroenterologist) to track you from now on. If you’re lucky, you can have years of remission – but it still can come back. In my experience, I have had to learn to live with pain and diarrea. When my guts are acting up, I’m usually tired. However, when you feel up to it, it seems to me that you should be as active as possible. If you don’t build up your muscles when you’re well, you’ll still be weak the next time. I wouldn’t "give up" anything – you just need to put things off sometimes. One more thing – drugs and/or feeling sick can make you feel depressed – I try not to make any serious plans when I’m too sick. I find that I don’t agree with my own decisions later, when I’m feeling better. Good luck – … read more »

Response:

Hi Peter, I’m Michael, 30 years old. Your story sounds almost identical to mine, and is typical for Crohn’s patients. I’m feeling bad for so long now it is hard to remember how I am supposed to feel.

I understand this completely. I’ve been working really hard to get myself back into the condition I was in before my Crohn’s almost took me out of the game. Each week I find that I’m feeling better than I ever thought was possible. What I once considered "normal" for me, I’ve found to be quite far from what I consider to be normal now. Chronic illnesses such as Crohn’s and Colitis have a greater psychological effect on the sufferers than most doctors realize. The stories I read in this newsgroup are so different from the story my dokter tels me (and he is supposed to be the specialist) I am beginning to think he doesn’t know either.

It very well could be that your doctor doesn’t know. Are you seeing someone who specializes in this area? You may wish to contact the Crohn’s and Colitis Foundation of America for a list of doctors in your area that are members and specialize in treating people with these diseases. I found that even through I do go to a doctor who specializes in this area, that I have more time to keep up with the latest medical and alternative treatments of Crohn’s, try them out and report back to her on what happens. If your doctor isn’t willing to work with you as a partner in returning your health to you, maybe you should consider getting another doctor. In your doctor’s defense, the stories of Crohn’s sufferers vary greatly. No offense to anyone here in the group, but I’ve found (over the last 3 years) that the participants in this group generally represent the more seriously ill segment of the Crohn’s and Colitis sufferers. Those that have successfully gotten their disease into a period of remission or at least under control don’t usually feel the need to participate in this group, and/or are trying to put the disease behind them (for a while) and avoid the newsgroups, their doctors and other support organizations and groups. I can’t blame them either. I have been reading a lot about the medical aspects of Crohns, but I can’t find a lot about what it is like living with the disease.

Contact CCFA (www.ccfa.org). They publish books on living with IBD and other reference materials that I have found invaluable. Already several people have said that things can’t be that bad because I don’t look ill, and someone even mentioned to me that I should have washed my hands more properly (so much for the cause of Crohns).

I know a lot of people that don’t look sick but they have cancer. Looks and preception aren’t everything when it comes to your health. People taking these attitudes add to the psychological devestation that IBD sufferers experience. I’ve experienced this too. Everyone was so shocked when I disappeared into the hospital for emergency surgery and didn’t make it back to work for 3 months. They hadn’t believed what I told them. Also, you must realize that you have had years of experience at hiding these symptoms as they crept up on you. Years of excuses to use when you had to go to the bathroom, years of altering your diet so you don’t make yourself ill, years of modifying your behavior so you don’t put yourself in situations where you might not have easy access to a restroom, etc. Generally, you don’t even believe you are as ill as you really are, so don’t be surprised that others don’t understand. Educating others is the best way to increase their understanding of what you are going through. It is hard on you and everyone else. Three years after my diagnosis, my best friend growing up who later became my high school sweetheart and wife for 9 years left me after being together for 15 years. She just couldn’t deal with my illness. – is it realy likely that things will go back to normal

Crohn’s is like a rollercoaster. You’ll have your ups and downs. It is very different for everyone. I have friends who haven’t had symptoms in years, I know someone who has had 5 resectionings. You really have to look at your quality of life issues and the extent of your disease. As for me, when I was diagnosed, active Crohn’s was found throughout my small intestines and rectum. For me to get my Crohn’s into remission, I either have to find a pharmaceudical method to get it into remission, or have it all cut out. So, my choice was to either have my rectum removed and most of my small intestines and live with an ostomy bag, or remove what is the worst (which turned out to be my terminal ilium which had strictured) and hope the medicine would take care of the rest. I lead a very active life style and chose the later of the two choices. I still don’t have the Crohn’s under control, but it doesn’t control me anymore. There is hope for you to get it into remission, but even if you don’t, it won’t be the end of the world and you can lead a very normal life. If you are interested I can give you dietary information that I have collected from nutritionists and my daily regiment of vitamines and medicine. Let me know if you are interested. – is it normal that I keep feeling tired

Yes. Crohn’s is very hard on the body, plus it interfers with your ability to absorb nutrients, particularly the fat soluable vitamins (A, B12, D, E, K). Rest when you need to, take your vitamins, eat right, and for me, exercise helps to keep my energy level up. But there are days where I just don’t get out of bed. But when that happens, I know it is for the best that I stay in bed and know that I deserve the rest. – Why am I also restless and hyperactive at the same time as feeling tired.

Are you currently on Prednisone or any other steroids? Restless and hyperactiveness are often more mental than physical. When I’m on Prednisone, I become physically exhausted, but am so restless that I don’t sleep more than 2-3 hours a day. After 6 weeks, I crash really bad and spend a few days in bed on tranquilizers. I’ve had to go on and off Prednisone 6 times in the last 3 years. – is it possible that any of these are drug related?

Yes. Go to your local library and check the Physician’s Desk Reference (PDR) for drug interactions and side effects for any medications you are taking. It is a great resource that you will want to become familiar with. – is it likely that I am to give up seakayaking etc.

(would be a real downer, and is bothering me really much) Maybe, but I don’t think so. I am a mountain biker. They tell me that you shouldn’t do sports that bounce or jar your torso so I should stick to riding on the roads and swimming (no football or basketball). Well, I’m recovering from a seperated shoulder from playing basketball and I mountain bike regularly–off road! If I have to take ImmodiumAD or something to stop the "runs," I do it. Quality of life it much too important and if kayaking is that important to you, then I’m certain that you will recover enough that you can make provisions to fit it into your life. If you wish to correspond via e-mail, please feel free to write to me Pease and live well.

Response:

Dear Peter : I’m 33 and was diagnosed at 17 yrs. old. I’ve had many, many ups and downs. Times when I couldn’t walk because of the pain; I’ve had four bowel surgeries, and constant medications (although rarely for pain – they’re just too addicting for my tastes). BUT, the vast majority of the time I have lived a basically symptom free life. I’ve studied for 6 yrs. at University and worked as a high school teacher for another 9 yrs. I’m married, and I play non-contact hockey with a passion. Everyone is totally unique in the severity of their crohn’s, and the mechanisms they use to deal with the pain, the embarassments, the inconveniences. But take time to heal yourself (I’m a workaholic, so being inactive while I healed was the toughest part of my illness) and trust your instincts.

Response:

- Hide quoted text — Show quoted text – Hi,   In response to your sad story I too have been through the suffering of Crohn’s IBD. But, it is way too long so I post it on my web site. You have my sympathy and ear. Hello there, I’m Peter, 32 years old. I have been reading the postings in this newsgroup for some time, and hope that some of you find the time to read my message, and reply, so maybe I get an idea of things to come. I’ve been having al kinds of health problems for the last three years. My dokter "fixed" most of them, And I have even had some minor Anal surgery without anyone ever seeing any connection between al those "incidents". Over time the problems came more frequent, got worse, and finaly they were here to stay. For the last year I had bowel cramps and diarhea. It started unalarming, but got worse and worse. First my dokter told me it was stress, and would go away by itself. That made sense at the time because I was not enjoying my work. But nothing changed after getting a new job. My dokter now told me it had to be a spastic colon, and things would be better if I ate a lot of fiber: wholegrain products, etc. This was a problem, because we already ate about all the wholegrain products the shops sell, so I managed to get medication. But still nothing changed and things went gradually worse. I had Anal fisura most of the time and I got really tired very easy, while I used to be in good shape (seakayaking, backpacking etc.) At the start of this year the bowel cramps got really bad, and in march my joints started hurting. Still my dokter didn’t have a clue. Only when Ilost 3 kg of weight in half a week, got so tired that I went straight back to bed after taking a shower in the morning, and was hardly able to climb the stairs to the bedroom could I convince him to send me to the hospital as an snip..snip… Steven S. Palmer http://home1.gte.net/sputers/abuse.html – - – - – - – - – - – - – - – - – - – - – - – - Key ID 0×69D430FB Key fingerprint = A706 43EC 13B6 D8E4 9F19  F2D4 63A8 E71D 69D4 30FB Public Key located in the Public Key Directory at:               <http://www.pgp.com/ or e-mail with Public Key as the subject line Apply ROT-13 to obtain real address – - – - – - – - – - – - – - – - – - – - – - – - "People Get The Government They Deserve……" – - – - – - – - – - – - – - – - – - – - – - – -

Response:

Hi Peter — You’ve come to a really good place for information and support.  It sounds like you have a good start on educating yourself about the medical aspects of Crohn’s, but if you haven’t already seen them, here are some excellent online resources for you: Crohn’s and Colitis Foundation of America (CCFA) at      http://www.ccfa.org           (Includes online reference library and information about support groups.) Crohn’s Disease Web Page:      http://members.aol.com/bospol/homepage/crohns.htm           (Lots of info, plus an online book store.) Mycobacterium paratuberculosis and Crohn’s      http://iol.ie/~alank/CROHNS/welcome.htm           (This is one to tell your doctor about.) Talking with other Crohn’s patients is the best way to get a real picture of what you’re dealing with day-to-day.  For that, stick with alt.support.crohns-colitis. Some of the questions I have  are: – is it realy likely that things will go back to normal

Some of us achieve remissions while others suffer continuously for many years.  A few claim to have been cured, while doctors say that’s impossible.  Some have only mild symptoms while others have crippling symptoms.  I’ve come to the conclusion that nothing’s typical when it comes to Crohn’s.  Every patient is different. – or am i going to live with pains and diarhea

From what I’ve experienced and from what I’ve seen at this newsgroup, you’re going to have good days and bad days.  Pains and diarrhea are likely to come and go. – is it normal that I keep feeling tired

Fatigue is very common with Crohn’s.  I find it helpful to get extra rest when I’m having symptoms and also to drink sports drinks that replace electrolytes lost through diarrhea. – Why am I also restless and hyperactive at the same time as feeling

tired. I get a little "twitchy" sometimes when I’m eager to be doing something, even though I’m really too tired to do it.  Depression is common with Crohn’s as well, and depression can cause all sorts of seemingly contradictory behaviors and emotions. – is it possible that any of these are drug related?

That’s always something to consider when taking medications.  If you go to www.hotbot.com and do a search on the names of the medications you’re taking, you’ll find a number of helpful resources about them, including possible side-effects. – is it likely that I am to give up seakayaking etc. (would be a real downer, and is bothering me really much)

It may be possible to control chronic diarrhea to the point that you can do the activities you’re used to.  Questran is an especially helpful prescription medication that many of us have used to control diarrhea, so ask your doctor about it.  Now that my own situation has improved, I’m able to rely on Metamucil for that, but that’s been years in coming.  I am now off all prescription medications, and my situation is quite stable. So you see that there is hope.  Sometimes we have to go through a lot of doctors before we find one we can work well with. I wish you well, and hope this has been helpful.  Please visit my web site (see URL below) and you will find that you are not at all alone in your experience. Sue IBD Creative Outlet: http://members.aol.com/HobbsHs/ibd/ibd.htm

Response:

Hi,   In response to your sad story I too have been through the suffering of Crohn’s IBD. But, it is way too long so I post it on my web site. You have my sympathy and ear. – Hide quoted text — Show quoted text -Hello there, I’m Peter, 32 years old. I have been reading the postings in this newsgroup for some time, and hope that some of you find the time to read my message, and reply, so maybe I get an idea of things to come. I’ve been having al kinds of health problems for the last three years. My dokter "fixed" most of them, And I have even had some minor Anal surgery without anyone ever seeing any connection between al those "incidents". Over time the problems came more frequent, got worse, and finaly they were here to stay. For the last year I had bowel cramps and diarhea. It started unalarming, but got worse and worse. First my dokter told me it was stress, and would go away by itself. That made sense at the time because I was not enjoying my work. But nothing changed after getting a new job. My dokter now told me it had to be a spastic colon, and things would be better if I ate a lot of fiber: wholegrain products, etc. This was a problem, because we already ate about all the wholegrain products the shops sell, so I managed to get medication. But still nothing changed and things went gradually worse. I had Anal fisura most of the time and I got really tired very easy, while I used to be in good shape (seakayaking, backpacking etc.) At the start of this year the bowel cramps got really bad, and in march my joints started hurting. Still my dokter didn’t have a clue. Only when Ilost 3 kg of weight in half a week, got so tired that I went straight back to bed after taking a shower in the morning, and was hardly able to climb the stairs to the bedroom could I convince him to send me to the hospital as an

snip..snip… Steven S. Palmer http://home1.gte.net/sputers/abuse.html – - – - – - – - – - – - – - – - – - – - – - – - Key ID 0×69D430FB Key fingerprint = A706 43EC 13B6 D8E4 9F19  F2D4 63A8 E71D 69D4 30FB Public Key located in the Public Key Directory at:               <http://www.pgp.com/ or e-mail with Public Key as the subject line Apply ROT-13 to obtain real address – - – - – - – - – - – - – - – - – - – - – - – - "People Get The Government They Deserve……" – - – - – - – - – - – - – - – - – - – - – - – -

Response:

Hello: There is a LOT of variation in the course of chron’s disease from patient to patient.  The members of this newsgroup are probably those who are the most ill.  For myself, when my disease in in remission, I seldom read or respond to this list.  So, don’t let the many very sick people here get you too discouraged about your own future. It IS true, as your doctor said, that many IBD patients can live  "normal" life most of the time, with occassional remissions when it may be impossible to go sea kayaking, for example.  But its hard to predict whether you will be in the category that is sick all of the time or in the category who may have 10 or 11 good months every year. Could the fatigue be due to anemia?  Has your bloodwork shown that?  Ask your doctor if you should be taking iron or folate supplement. Hope you are feeling better soon. Patsy

Response:

I understand. It took them 14 year to diagnose me. I was told I was making it up quite a few times. Even now, very few doctors really know how difficult it can be to live with crohns. I have solved these things by doing lots of research (I do correct my doctor when he says something wrong). I also have been through lots of doctors to find ones that understand. As far as your questions, most people with crohns I have talked to eventually have periods of remission, but it never goes away 100%, and it will come back.  Stress is a huge co-factor in crohn’s, it always causes a flare in me. The weakness you speak of is probably due to the fact you are getting no nutrition. I eat small amounts constantly…no big meals. I take lots of vitamins. If I know I  am bleeding in my colon (you can tell by dark patched in your stool, I take iron.  I eat mostly low fat, high protein. I know many crohns patients that eat mostly chicken. I avoid high fiber, and charbohydrates. I also avoid dairy when it is really bad. When I am flaring I also drink a vitamin supplement drink like "ensure". People don’t understand, the good old "but you do not look sick". You have to explain. The drugs used to treat this disease are often as bad as the disease, prednisone in particular. Yes, you should be able to sea kayak again, but it will take time. You have to learn how to treat your disease, what foods you can eats, what medication works. It is different for all of us. Good luck. FORREST

Response:

Hello there, I’m Peter, 32 years old. I have been reading the postings in this newsgroup for some time, and hope that some of you find the time to read my message, and reply, so maybe I get an idea of things to come. I’ve been having al kinds of health problems for the last three years. My dokter "fixed" most of them, And I have even had some minor Anal surgery without anyone ever seeing any connection between al those "incidents". Over time the problems came more frequent, got worse, and finaly they were here to stay. For the last year I had bowel cramps and diarhea. It started unalarming, but got worse and worse. First my dokter told me it was stress, and would go away by itself. That made sense at the time because I was not enjoying my work. But nothing changed after getting a new job. My dokter now told me it had to be a spastic colon, and things would be better if I ate a lot of fiber: wholegrain products, etc. This was a problem, because we already ate about all the wholegrain products the shops sell, so I managed to get medication. But still nothing changed and things went gradually worse. I had Anal fisura most of the time and I got really tired very easy, while I used to be in good shape (seakayaking, backpacking etc.) At the start of this year the bowel cramps got really bad, and in march my joints started hurting. Still my dokter didn’t have a clue. Only when Ilost 3 kg of weight in half a week, got so tired that I went straight back to bed after taking a shower in the morning, and was hardly able to climb the stairs to the bedroom could I convince him to send me to the hospital as an emergency. (I had been waiting to see a specialist for some weeks already, but my appointment was still some weeks in the future.) I went to the hospital on 11 april. It took the specialist about 10 minutes to figure out that I needed to stay in the hospital, and that I most likely was suffering from IBD.(which I had never heard of at the time) He also told me that most of my recent medical problems had to be related to IBD. I was in hospital for almost four weeks. I don’t think I need to tell about the diet and all the examinations and test, but they figured out I had Crohns disease. By the time I left the hospital I was on Salofalk and Prednisone, my jointpaint had gone, and the bowelpain and diarhea were a lot less. I had lost 13 Kg and was still very weak and tired. I was realy positive, but soon I found out my IBD dokter had not really told me very much about what it meant to have Crohns. I knew it was chronical, and I also knew things differed very much from person to person. But he kept telling me that everything would be normal most of the time(so I figured Crohns could not be that bad). At first things went for the better (very slowly), and my weight got normal. My Prednisone dose was down to 10 mg. After some time I got more tired, and started to have bowelpains more often. But all my Dokter did was taking bloodtests (which were showing things went for the good) and asking how many times a day I went to the bathroom. And he also said he didn’t understand why I was not going to work. He did prescribe me a higher dose of prednisone when I kept pushing about why things had gone worse, but still wasn’t going to tell me anything more. In the end I felt like I was making things up, and I’m feeling very confused now. I have never been complaining about any health problems very much. Not even when things were realy bad. So why should I make things up? On the other hand: I’m feeling bad for so long now it is hard to remember how I am supposed to feel. The stories I read in this newsgroup are so different from the story my dokter tels me (and he is supposed to be the specialist) I am beginning to think he doesn’t know either. Or Maybe I didn’t want to hear the bad news at first. I have been reading a lot about the medical aspects of Crohns, but I can’t find a lot about what it is like living with the disease. I had a conversation recently with a woman who was diagnosed with CD two years ago. I now am beginning to think things are not really that positive. And eventhough most people I know are really kind, I don’t believe some of the responses I get. Already several people have said that things can’t be that bad because I don’t look ill, and someone even mentioned to me that I should have washed my hands more properly (so much for the cause of Crohns). I am in big need of some understanding reactions, because I really don’t understand things myself. Some of the questions I have  are: – is it realy likely that things will go back to normal – or am i going to live with pains and diarhea – is it normal that I keep feeling tired – Why am I also restless and hyperactive at the same time as feeling tired. – is it possible that any of these are drug related? – is it likely that I am to give up seakayaking etc. (would be a real downer, and is bothering me really much) Sorry, this posting has become quite long. It must be troubeling me really bad. Your experiences and opinions mean a lot to me. It will probably make me feel a lot better. Thanks for being so patient to read the whole story. And I appologise for any badly written English. Peter Heuts

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