Question:

Hello, Jason. My name is Janet, I was born with a stoma, well ever since I was a baby, I’ve had it, I am 28 now. in 1988, I was told I had Crohons, and all I did was bleed, I mean my bag would be full of blood, my blood count was 4.2 and I had a alot of blood transfusions over the years! and I was on alot of medications as well. so in 1995, I decided I had enough of this shit, I was so tired all the time and very depressed!  I was on so many medications. and I was tired of it ALL.  so I meditated, and ever since I have been doing that, I had not needed to take medications or even bleed, so here I am 28 and still free of the symtims. I did not cure myself, but I eased the pain and suffering.  (  &  :   ever try meditating? PS. have lots of faith in God, because without him, I would be losted!!                       Janet DeHart

Response:

 Hope you’re feeling better today..  half a cup of blood for any reason must mean something has to be looked at surely! As far as the pain, I don’t find colitis pain a burning pain, I find it’s a cramping twinging throbbing inside (like period pain, the ladies will know) If it continues, I’d cause bother.. Is your stoma department sympathetic? If not and bleeding/pain is still bad, how about casualty?  I know I wouldn’t like to be left bleeding without an explanation… email me if you’re up to it and let me know how you are :-/ look after yourself Candy xx http://freespace.virgin.net/candy.moran

Response:

Jason, I don’t have a stoma, but if your GI and nurse wanted you to see the surgeon and the problem is not resolved, I’d return to the ER, demand to see an attending and report the Registrar. (Is that similar to a Resident in the US?) Obviously HE flunked the finger test <G. mgbio – Hide quoted text — Show quoted text – Hi Folks. Picture the scene. I’m in a hospital cubical, waiting to see a Surgeon for advice. Over the last week I’d been bleeding maybe half a cup per day from the stoma (or rather somewhere further up behind the stoma). I’m on the examination couch waiting for the Doc. I check the bag and see for once the bag is full of blood whereas normally when I go to hospitals the bleeding miraculously stops until I get back home. Anyway, it’s been bleeding a week. My GP and Stoma Nurse both say "You need to see a surgeon" and thats why I went back. The surgeon was on his holidays, so I saw a gutless wonder of a Registrar. I tell him about the bleeding, the diarohea, and the burning pain inside me. He takes the bag off, blood is all over the show, he cleans the stoma, sticks his finger into the first inch of the stoma, brings it out and because the finger was blood free he pronounces the bleeding has now stopped, I’ve nothing to worry about, and half a cup of blood per day is nothing to worry about. He sent me home with no tests to be done – nothing. Well, I am *still* worried. Any bleeding is bad, and half a cup is a hell of a lot for someone who is anaemic like me. Anyway, I have a few general questions for the group. If anyone can offer advice on anything I’d be hugely appreciative. Firstly, has anyone with a stoma and relatively healthy bowel had ulceration return to the healthy colon three years after the forming of the stoma? Am I right in thinking that blood + diahrohea + mucus + burning pain = colitis? Lets say for sake of arguement it is colitis, is half a cup per day a lot, or a little? In registrars opinion I was a waste of space. He’s organised no tests, offered no explaination for the bleeding, and is convinced it’s stopped anyhow because his finger was clean. Needless to say I am still bleeding, still in pain, still got excess mucous, still got the burning pain. If anyone can offer some advice it’d be great. The colostomy was originally formed in 97 for SRU Syndrome and the resulting rectal prolapse. The rectum was ulcerated but it never progressed further than that. The colon was never effected. — Bye now, Jason www.ostomy.fsnet.co.uk www.emmascott.co.uk www.kristyswanson.co.uk www.lucyweb.co.uk http://go.to/winampwonder Your mouse has moved. Windows needs to reboot for changes to take effect. [OK] [CANCEL]

Response:

Hi Folks. Picture the scene. I’m in a hospital cubical, waiting to see a Surgeon for advice. Over the last week I’d been bleeding maybe half a cup per day from the stoma (or rather somewhere further up behind the stoma). I’m on the examination couch waiting for the Doc. I check the bag and see for once the bag is full of blood whereas normally when I go to hospitals the bleeding miraculously stops until I get back home. Anyway, it’s been bleeding a week. My GP and Stoma Nurse both say "You need to see a surgeon" and thats why I went back. The surgeon was on his holidays, so I saw a gutless wonder of a Registrar. I tell him about the bleeding, the diarohea, and the burning pain inside me. He takes the bag off, blood is all over the show, he cleans the stoma, sticks his finger into the first inch of the stoma, brings it out and because the finger was blood free he pronounces the bleeding has now stopped, I’ve nothing to worry about, and half a cup of blood per day is nothing to worry about. He sent me home with no tests to be done – nothing. Well, I am *still* worried. Any bleeding is bad, and half a cup is a hell of a lot for someone who is anaemic like me. Anyway, I have a few general questions for the group. If anyone can offer advice on anything I’d be hugely appreciative. Firstly, has anyone with a stoma and relatively healthy bowel had ulceration return to the healthy colon three years after the forming of the stoma? Am I right in thinking that blood + diahrohea + mucus + burning pain = colitis? Lets say for sake of arguement it is colitis, is half a cup per day a lot, or a little? In registrars opinion I was a waste of space. He’s organised no tests, offered no explaination for the bleeding, and is convinced it’s stopped anyhow because his finger was clean. Needless to say I am still bleeding, still in pain, still got excess mucous, still got the burning pain. If anyone can offer some advice it’d be great. The colostomy was originally formed in 97 for SRU Syndrome and the resulting rectal prolapse. The rectum was ulcerated but it never progressed further than that. The colon was never effected. — Bye now, Jason www.ostomy.fsnet.co.uk www.emmascott.co.uk www.kristyswanson.co.uk www.lucyweb.co.uk http://go.to/winampwonder Your mouse has moved. Windows needs to reboot for changes to take effect. [OK] [CANCEL]

Response:

Question:

I am going to go back to my usual doctor – well I never left him really.  I just had gotten so sick that I felt I needed a second opinion.  Man, I just hope my usual doctor doesn’t hold anything against me, you know?  It just seemed like the responsible thing to do – when you get real sick and aren’t getting any better – I had a fever up to 104 for 3 weeks, mouth sores for 2 weeks and could not walk on my left leg because it was so achy and sore.  Had to take a month off of work.  My usual doc dismissed this as a symptom of uc. I thought that I was dying – that’s why I went to get a second opinion.  I’ve been on 6mp for over a year and have not experienced bloody flares for a year and a half but I still have that nasty pain – with or without gas I get it.     Thank you for your response – Nicole

Response:

to; maryann      ive not met you yet ; i just read your response to rob  i too take oxycontin & percoet . i have uc & cd . im 34  and have been diagnosed for 10 years . i thought i was the only one that took pain meds for cd . my last gi said when your in remission you shouldnt be in pain. i have alot of narrowings in my colon due to scar tissue from flairs in the past. every morning im very sick for the first few hours. if i dont take the percocet ;i dont leave the house , period . if i dont take one before i eat ;i dont eat. sucks!!!!!      ive asked the group before but no   one responded  ; do alot of other cd & uc sufferers have to take pain meds? ive always felt like i was the only person that had to take meds to function. im now seeing a pain management dr     who is very compasionate and understands my pain i have. not to mention the 7 kidney stones ive passed this year .lets not talk about about pain.hope your well for the holidays,                                   marla

Response:

Hi Rob! I don’t think we ever emailed each other…but I also have things growing out of my ass that aren’t hemorrhoids…this is how I was first diagnosed. I have a painful growth about the size of a walnut growing out of the rectum….they said it was the crohns growing outward.  When I had it….(I still do..but it shrunk down)…it was hard and very painful…I was sitting sideways and couldn’t get comfortable…I was on two vicodin every 3 hours for 4 months and it only took the edge off of it. I also had proctitis with it and when I saw the doctor…I told him to look at it but "don’t touch it"!!!  He said ..it wasn’t a hemorrhoid and that is was vascular and that no surgeon in my area would touch it…that It could hemorhage and lead to death if it wasn’t removed correctly.

Rob & Maryann … Add me to your list of "strange rectal protrubances!!" And like Maryann, my docs say it cant’ be fixed.  Actually, they said if they DID do surgery, it would mean an ileostomy, and that I probably wasnt ready to go that route yet.  But my protrubances have narrowed my rectum so much it makes it hard to pass stool.  Such fun and games we get to play, hey guys?? ceebee

Response:

Definately.   When I get really bad and I’m bloated all of the time, it starts hurting like crazy!  I also have a tendecey to get a little lactose intolerant when I’m really flaring up

Response:

I too have strange things growing out of my rectum. I was diagnosed with CD6 years ago and because I had waited too long and let the pain become unbearable, I had a resection. An abcess had caused a complete blockage in the ilium. 2 feet of small intestine, including the illiolic(sp?) valve and appendix. I have what I decribe as skin flaps that are always present at my anus. They are soft and usually pain-free, unless I’ve eaten something I shouldn’t have and they swell up slightly and hurt, like hemmorroids I guess. But since surgery, I’ve been pain free and no symptoms, except for the obligatory bouts with gas and diarrhea, and an occaissional Imodium.

Response:

Yes, I have those as well, they are called by my doc to me as just skin tags.  They will always be there.  Those are a classic sign of Crohn’s actually, that’s what got me diagnosed, among other things. Roz – Hide quoted text — Show quoted text – I too have strange things growing out of my rectum. I was diagnosed with CD6 years ago and because I had waited too long and let the pain become unbearable, I had a resection. An abcess had caused a complete blockage in the ilium. 2 feet of small intestine, including the illiolic(sp?) valve and appendix. I have what I decribe as skin flaps that are always present at my anus. They are soft and usually pain-free, unless I’ve eaten something I shouldn’t have and they swell up slightly and hurt, like hemmorroids I guess. But since surgery, I’ve been pain free and no symptoms, except for the obligatory bouts with gas and diarrhea, and an occaissional Imodium.

Response:

Thanks Roz. I was diagnosed with "skin tags" when I joined the Navy back in 85, but nothing else was said about it. I had an abcess drained on my anus about a year and a half. Nothing was said then, either. I even had a coloscopy just before I was discharged from the Navy (they had found blood in my final physical) and they found nothing, That was my first experience with the SNAKE. That was in 91. I wasn’t diagnosed until the end of 93 with the blockage. I tried all the steroids and inflammation drugs, but it was too late and they took 2ft. Sorry this is so long, I’m new to this. I’m pain free, except for some gass cramps. I can also feel my food moving thru my gut, but no pain. I also have a noisy gut. Anyone else out there with the same? I’m on no meds. Just try to watch what i eat.

Response:

Yep, I have skin tags too..three of them.  One of them has almost disappeared, so I’m holding out hope that the last two will almost disappear too.  The largest one is in a VERY inconvienent spot (don’t want to go into great detail, but it can interfere with sex). One thing that has helped me out a LOT is epsom salts, I know the salt part made me cringe when I first heard it, but put about a cup or so into a warm bath and soak your butt…it’s incredible.  The Epsom salts also help with fissures.   -Cheryl

Response:

- Hide quoted text — Show quoted text –     Hello everyone – haven’t been here in a while.  I went to go see a doctor about a second opinion (it’s a long story) – anyway – I told this doctor that I have really bad pain with colitis ( I have pan colitis – my whole colon is affected).  Really bad pain.  This doctor said that with colitis I should ONLY experience pain with diarrhea cramping. Well, I do, but usually do not have diarrhea and still experience pain and cramping even when I am not gassy.     This doctor said that pain is associated with chrons and not colitis.  (I have had several tests done and do not have chrons).  My other doctor thinks that you can have pain with colitis.  SO to sum up – does anyone who has colitis experience pain and cramps even when they are not having a bout of diarrhea?  Sometimes I just experience a dull aching pain all day.  I take Tylenol or vicodin to ease this.  Does anyone else see a doctor who thinks that you shouldn’t be experiencing pain with colitis? Any answers would be appreciated, Nicole (sorry if this post is poorly written – it is 7:40 am and I haven’t been to sleep yet – this whole experience with consulting another doctor has been worrying me and keeping me awake!)

Yes, I have crohns and have had severe stomach pains..not followed by a bowel movement…in fact, I woke out of a sound sleep twice last week (even though I am on medication to sleep and pain meds)….I woke with terrible pains that "did not" end with a bowel movement!  In fact, I didn’t have a bowel movement for several after the pain stopped.  The pain lasted about an hour or more..and I had to get out of bed…it hurt more while I was laying down….I was just glad it passed……Like I said, if I ran to the hospital or called my doctor for every weird pain or symptom…I would always be on the phone or in the hospital..what we chronic sufferers put up with!!!!!

Response:

- Hide quoted text — Show quoted text – Hi Jimmy, I have had UC for 17 years and my main symptoms are the pains I have EVERYDAY in my lower abdomen.  The last scope I had showed mild to moderate inflammation throughout the entire colon.  And that was during a remission period.  I just went to the doctor on Wednesday, the pain has moved into the rectum, so now I have proctitis also.  We have upped my Pred to 20 mg per day (the max my doctor will prescribe because of the side effects) and added Rowasa sups twice  a day.  I also take 4800 mg of Asacol daily for the last two years.  I also have an initial consult appointment with a surgeon to discuss my surgical options.  The doctor, myself and my family have decided that 17 years is long enough to live in pain and the meds aren’t helping.  I have found that nothing takes the pain away, so I just have been living with it.  But it has taken it’s toll and it is time to relieve it.  I have some tough decisions to make in the next few months.  But, you go back to your first doctor, because obviously the second one doesn’t know UC from IBS…lol  PAIN is a major symptom of UC, so are the grumbling guts (the loud noises that aren’t hunger pains, nor really gas). Hang in there, Stephanie

Hi Stephanie! It is interesting…I have crohns and have exactly the same pains that you describe, and the grumbling guts…thanks for sharing…I get more confused everyday…UC and chrons sound so identicle sometimes!!!!

Response:

- Hide quoted text — Show quoted text – Hi Jimmy, I have had UC for 17 years and my main symptoms are the pains I have EVERYDAY in my lower abdomen.  The last scope I had showed mild to moderate inflammation throughout the entire colon.  And that was during a remission period.  I just went to the doctor on Wednesday, the pain has moved into the rectum, so now I have proctitis also.  We have upped my Pred to 20 mg per day (the max my doctor will prescribe because of the side effects) and added Rowasa sups twice  a day.  I also take 4800 mg of Asacol daily for the last two years.  I also have an initial consult appointment with a surgeon to discuss my surgical options.  The doctor, myself and my family have decided that 17 years is long enough to live in pain and the meds aren’t helping.  I have found that nothing takes the pain away, so I just have been living with it.  But it has taken it’s toll and it is time to relieve it.  I have some tough decisions to make in the next few months.  But, you go back to your first doctor, because obviously the second one doesn’t know UC from IBS…lol  PAIN is a major symptom of UC, so are the grumbling guts (the loud noises that aren’t hunger pains, nor really gas). Hang in there, Stephanie

Hi Again! I forgot to tell you…I also have proctitis…lovely, isn’t it??? :O)

Response:

- Hide quoted text — Show quoted text – I have had UC for almost 3 years now. First symptoms appeared around the Holidays of ‘95. It took a while to figure out what it was. Was diagnosed in April of ‘96. It was so bad that I missed 9 months of work to recover. I was able to get back to work, with relatively no pain, for the next 18 months or so, then BAM! Flareup. This one’s lasted for 8 months so far, with no apparent end in sight. I’ve have Sigmoids that show that the bowel is improving, the ulcers are disappearing, and it is settling down…….the farther up the colon we go, the better. But the end of my colon and my anus are in REALLY bad shape. I get diarreah only occasionally now. Mostly my BMs are soft, but not watery or "solid". There is usually small amounts of blood (probably from the anus being so "torn up"). My doctor wants to fix the anus problems, but "not until the colon settls down". (I have things growing out of my ass! And they’re not Anyway, my point is, even though MOST of my colon seems to be "in pretty good shape", I do still suffer from mild to SEVERE cramping on a daily basis. Just had a bad bout the last two days. Before that I had extreme nausea for five days straight. (I’m guessing ulcers in the stomach from the stress of not working and having bills pile up all around me…..I should have another Endoscopy to confirm suck!) My point, I guess, is that PAIN is "normal" during a flareup, no matter now severe or calm that flareup may be. Sadly, there doesn’t seem to be anything my Doctor can give me that helps with the cramping. I wish there were, then I could get back to work! Anyone know of any powerful pain relievers that actually WORK? I have to be careful taking stuff since I am currently on : Prednisone 20mg/day, Pentasa 2000mg/day, 6-MP 150mg/day, Valium 2mg/as needed (quite often lately), Bentyl 20mg/day, and Prilosec 20mg/day. That’s a total of 23 pills/day that are required, and 1 more (Valium) if needed. Try explaining all the "pill popping" to someone who doesn’t need to…..they think I’m a drug addict! Don’t let your Doctor, or anyone else, tell you there "is no I’m usually a caring person, and I used to care what people Most people are too busy worrying about themselves to take the time to understand something like a chronic illness and it’s effects (physical and emotional) on someone else. Until somone experiences it FIRST HAND, they can never know. Understand that, and we’ll all be better off.

Hi Rob! I don’t think we ever emailed each other…but I also have things growing out of my ass that aren’t hemorrhoids…this is how I was first diagnosed. I have a painful growth about the size of a walnut growing out of the rectum….they said it was the crohns growing outward.  When I had it….(I still do..but it shrunk down)…it was hard and very painful…I was sitting sideways and couldn’t get comfortable…I was on two vicodin every 3 hours for 4 months and it only took the edge off of  it. I also had proctitis with it and when I saw the doctor…I told him to look at it but "don’t touch it"!!!  He said ..it wasn’t a hemorrhoid and that is was vascular and that no surgeon in my area would touch it…that It could hemorhage and lead to death if it wasn’t removed correctly.  They talked about sending me to Johns Hopkins or New York Medical (I think)..but anyway….after 4 months of terrible pain and soaking in the tub 10 hours a day…it finally shrunk down.  Every now and then…it gets hard and painful…but nothing like it did 8 years ago.  This led to my diagnosis of crohns….I have it at the terminal ileum, rectal opening and outside the anus…and currently have narrowing in 3 areas….so you have my deepest sympathy…it is a very painful growth and I can’t remember the technical name for it..but it is common with crohns.  You stated that you have UC.. I don’t know if it is associated with UC but it is with crohns…but then you would have to ask your doctor.  About the holidays…i always flare around them…there is so much stress …shopping, cooking, entertaining, decorating…it has gotten out of hand..with the divorce this year, and my financial status…I may be baking bread and giving it as gifts…I have no money.  Also for pain relief…I am now on oxycontin (narcotics), vicodin ES, soma (muscle relaxors), xanax, synthroid, miacalcin nasal spray and fosamax (osteoporosis), and prozac….(I’m an addict too…:O)  I have fibromyalgia and arthritis and many of these meds are for that…I take asacol for the crohns…Strangely., I only have fatigue in the daytime (occasionally)..I don’t feel like I am high on anything..it surprised me that being on narcotics (oxycontin) doesn’t make me feel weird…it just takes away the pain …at least the edge off the pain…ask your doctor about it….I can function on it…I drive, do housework (sometimes…it depends on the day and the fatigue)…I am applying for disability because I can’t sustain employment…I have tried..I got fired twice because of hospitalizations in the last 18 months….was hospitalized 4 times in the past two years….I was working temp jobs..but couldn’t even finish those short assignments due to illness and fatigue and pain…..So you are not alone…email me if you need someone to comisurate with…take

Response:

Nicole,   Hi.  I also have UC, but was diagnosed with CD 5 years before.  My complete colon is infected, but I can’t go back to the doctor until March 99.  (That’s when my insurance will cover it)  You can have a lot of pain with UC according to my doctor.  My pain is in my right ribs near my Gall Bladder.  They did previous tests on my Gall Bladder but ruled it out.  It’s definitely my UC.  It’s like a fist that stays in my right ribs.  How long have you had UC?  I very seldom have the diarrhea, but have pain all the time. Kim D. – Hide quoted text — Show quoted text –    Hello everyone – haven’t been here in a while.  I went to go see a doctor about a second opinion (it’s a long story) – anyway – I told this doctor that I have really bad pain with colitis ( I have pan colitis – my whole colon is affected).  Really bad pain.  This doctor said that with colitis I should ONLY experience pain with diarrhea cramping. Well, I do, but usually do not have diarrhea and still experience pain and cramping even when I am not gassy.    This doctor said that pain is associated with chrons and not colitis.  (I have had several tests done and do not have chrons).  My other doctor thinks that you can have pain with colitis.  SO to sum up – does anyone who has colitis experience pain and cramps even when they are not having a bout of diarrhea?  Sometimes I just experience a dull aching pain all day.  I take Tylenol or vicodin to ease this.  Does anyone else see a doctor who thinks that you shouldn’t be experiencing pain with colitis? Any answers would be appreciated, Nicole (sorry if this post is poorly written – it is 7:40 am and I haven’t been to sleep yet – this whole experience with consulting another doctor has been worrying me and keeping me awake!)

Response:

Hi Jimmy, I have had UC for 17 years and my main symptoms are the pains I have EVERYDAY in my lower abdomen.  The last scope I had showed mild to moderate inflammation throughout the entire colon.  And that was during a remission period.  I just went to the doctor on Wednesday, the pain has moved into the rectum, so now I have proctitis also.  We have upped my Pred to 20 mg per day (the max my doctor will prescribe because of the side effects) and added Rowasa sups twice  a day.  I also take 4800 mg of Asacol daily for the last two years.  I also have an initial consult appointment with a surgeon to discuss my surgical options.  The doctor, myself and my family have decided that 17 years is long enough to live in pain and the meds aren’t helping.  I have found that nothing takes the pain away, so I just have been living with it.  But it has taken it’s toll and it is time to relieve it.  I have some tough decisions to make in the next few months.  But, you go back to your first doctor, because obviously the second one doesn’t know UC from IBS…lol  PAIN is a major symptom of UC, so are the grumbling guts (the loud noises that aren’t hunger pains, nor really gas). Hang in there, Stephanie

Response:

Hi Nicole, What made you decide to get a second opinion? The reason I ask is that around the time I had blood in a few stools, I was taking a lot of Advil for a bad shoulder. Have not had any sypmtoms that I know of for a long time now. I am beginning to wonder if I really ever had UC.Only Meds the doc has me on is Asacol. I have not had any pain to mention. Only problem I seem to have is being tired more than I care to be. (Could just be age related). I go to Holiday Fitness 2 or 3 times a week, so I get exercise. Hoped I helped in some way. Rodney – Hide quoted text — Show quoted text –     Hello everyone – haven’t been here in a while.  I went to go see a doctor about a second opinion (it’s a long story) – anyway – I told this doctor that I have really bad pain with colitis ( I have pan colitis – my whole colon is affected).  Really bad pain.  This doctor said that with colitis I should ONLY experience pain with diarrhea cramping. Well, I do, but usually do not have diarrhea and still experience pain and cramping even when I am not gassy.     This doctor said that pain is associated with chrons and not colitis.  (I have had several tests done and do not have chrons).  My other doctor thinks that you can have pain with colitis.  SO to sum up – does anyone who has colitis experience pain and cramps even when they are not having a bout of diarrhea?  Sometimes I just experience a dull aching pain all day.  I take Tylenol or vicodin to ease this.  Does anyone else see a doctor who thinks that you shouldn’t be experiencing pain with colitis? Any answers would be appreciated, Nicole (sorry if this post is poorly written – it is 7:40 am and I haven’t been to sleep yet – this whole experience with consulting another doctor has been worrying me and keeping me awake!)

Response:

- Hide quoted text — Show quoted text –     Hello everyone – haven’t been here in a while.  I went to go see a doctor about a second opinion (it’s a long story) – anyway – I told this doctor that I have really bad pain with colitis ( I have pan colitis – my whole colon is affected).  Really bad pain.  This doctor said that with colitis I should ONLY experience pain with diarrhea cramping. Well, I do, but usually do not have diarrhea and still experience pain and cramping even when I am not gassy.     This doctor said that pain is associated with chrons and not colitis.  (I have had several tests done and do not have chrons).  My other doctor thinks that you can have pain with colitis.  SO to sum up – does anyone who has colitis experience pain and cramps even when they are not having a bout of diarrhea?  Sometimes I just experience a dull aching pain all day.  I take Tylenol or vicodin to ease this.  Does anyone else see a doctor who thinks that you shouldn’t be experiencing pain with colitis? Any answers would be appreciated, Nicole (sorry if this post is poorly written – it is 7:40 am and I haven’t been to sleep yet – this whole experience with consulting another doctor has been worrying me and keeping me awake!)

I have significant pain most of the time (if my disease is active).  I experience some level of pain even when in so-called remission.  No doctor (and I have seen plenty over the last 10 years or so) has ever indicated that this pain is unusual.  I have cramping pain virtually every evening and sometimes avoid eating because I know it will lead to that pain.  I also have significant pain when having bowel movements. I find that lying on my left side is often very painful and that a mere touch or slight accidental contact can almost send me up the wall.  I don’t think that your doctor has much knowledge of what having UC is like. Garth

Response:

– Hide quoted text — Show quoted text –     Hello everyone – haven’t been here in a while.  I went to go see a doctor about a second opinion (it’s a long story) – anyway – I told this doctor that I have really bad pain with colitis ( I have pan colitis – my whole colon is affected).  Really bad pain.  This doctor said that with colitis I should ONLY experience pain with diarrhea cramping. Well, I do, but usually do not have diarrhea and still experience pain and cramping even when I am not gassy.     This doctor said that pain is associated with chrons and not colitis.  (I have had several tests done and do not have chrons). My other doctor thinks that you can have pain with colitis.  SO to sum up – does anyone who has colitis experience pain and cramps even when they are not having a bout of diarrhea?  Sometimes I just experience a dull aching pain all day.  I take Tylenol or vicodin to ease this.  Does anyone else see a doctor who thinks that you shouldn’t be experiencing pain with colitis? Any answers would be appreciated, Nicole (sorry if this post is poorly written – it is 7:40 am and I haven’t been to sleep yet – this whole experience with consulting another doctor has been worrying me and keeping me awake!) I have significant pain most of the time (if my disease is active).  I experience some level of pain even when in so-called remission.  No doctor (and I have seen plenty over the last 10 years or so) has ever indicated that this pain is unusual.  I have cramping pain virtually every evening and sometimes avoid eating because I know it will lead to that pain.  I also have significant pain when having bowel movements. I find that lying on my left side is often very painful and that a mere touch or slight accidental contact can almost send me up the wall.  I don’t think that your doctor has much knowledge of what having UC is like. Garth

I agree 100% with Garth.  I was diagnosed 9 yrs. ago with CD and with UC just 5 years ago. (I have both) KD

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I have had UC for almost 3 years now. First symptoms appeared around the Holidays of ‘95. It took a while to figure out what it was. Was diagnosed in April of ‘96. It was so bad that I missed 9 months of work to recover. I was able to get back to work, with relatively no pain, for the next 18 months or so, then BAM! Flareup. This one’s lasted for 8 months so far, with no apparent end in sight. I’ve have Sigmoids that show that the bowel is improving, the ulcers are disappearing, and it is settling down…….the farther up the colon we go, the better. But the end of my colon and my anus are in REALLY bad shape. I get diarreah only occasionally now. Mostly my BMs are soft, but not watery or "solid". There is usually small amounts of blood (probably from the anus being so "torn up"). My doctor wants to fix the anus problems, but "not until the colon settls down". (I have things growing out of my ass! And they’re not Anyway, my point is, even though MOST of my colon seems to be "in pretty good shape", I do still suffer from mild to SEVERE cramping on a daily basis. Just had a bad bout the last two days. Before that I had extreme nausea for five days straight. (I’m guessing ulcers in the stomach from the stress of not working and having bills pile up all around me…..I should have another Endoscopy to confirm suck!) My point, I guess, is that PAIN is "normal" during a flareup, no matter now severe or calm that flareup may be. Sadly, there doesn’t seem to be anything my Doctor can give me that helps with the cramping. I wish there were, then I could get back to work! Anyone know of any powerful pain relievers that actually WORK? I have to be careful taking stuff since I am currently on : Prednisone 20mg/day, Pentasa 2000mg/day, 6-MP 150mg/day, Valium 2mg/as needed (quite often lately), Bentyl 20mg/day, and Prilosec 20mg/day. That’s a total of 23 pills/day that are required, and 1 more (Valium) if needed. Try explaining all the "pill popping" to someone who doesn’t need to…..they think I’m a drug addict! Don’t let your Doctor, or anyone else, tell you there "is no I’m usually a caring person, and I used to care what people Most people are too busy worrying about themselves to take the time to understand something like a chronic illness and it’s effects (physical and emotional) on someone else. Until somone experiences it FIRST HAND, they can never know. Understand that, and we’ll all be better off.

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    Hello everyone – haven’t been here in a while.  I went to go see a doctor about a second opinion (it’s a long story) – anyway – I told this doctor that I have really bad pain with colitis ( I have pan colitis – my whole colon is affected).  Really bad pain.  This doctor said that with colitis I should ONLY experience pain with diarrhea cramping. Well, I do, but usually do not have diarrhea and still experience pain and cramping even when I am not gassy.     This doctor said that pain is associated with chrons and not colitis.  (I have had several tests done and do not have chrons).  My other doctor thinks that you can have pain with colitis.  SO to sum up – does anyone who has colitis experience pain and cramps even when they are not having a bout of diarrhea?  Sometimes I just experience a dull aching pain all day.  I take Tylenol or vicodin to ease this.  Does anyone else see a doctor who thinks that you shouldn’t be experiencing pain with colitis? Any answers would be appreciated, Nicole (sorry if this post is poorly written – it is 7:40 am and I haven’t been to sleep yet – this whole experience with consulting another doctor has been worrying me and keeping me awake!)

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