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Question:

yep.  my mom understands quite well.  she has been living with ulcerative colitis since she was 18 but she’s been lucky and hasn’t had to have any operations yet.  she was quite worried when we found out what was making me sick especially since she knows what comes with having the disease. i’ve already developed artheritis in my hands and knees but my mom says keeping active and eating properly really helps.

Response:

Don’t hesitate to ask questions or just ventilate. And, yes, having an understanding family does help enormously.

Response:

thank you actually 34 for talking with me.  it is true that the hospitalization and flare ups are not fun.  and if it does come down to it i would rather have the bag and live with it for the rest of my life.  my son, who just turned one, deserves to have a mom at home with him and not someone who is constantly in the hospital.  i am too finding that i am staring to be able to return to all the things i love to do.and now that i have found this web sight and am getting more info and talking to different people who live with it as well i am feeling more confident plus it halps to be with someone who understands and doesn’t care about the fact that i have a bag on my stomach and having the support of my family has helped too.

Response:

I’m not a doctor, and don’t take what I say as gospel. But it is my understanding that Crohn’s Disease is a systemic disease capable of flaring up anywhere along the digestive tract — from mouth to anus. Surgical removal of the afflicted area is no guarantee that there won’t be a flareup elsewhere. With colitis, on the other hand, removal of the afflicted area usually eliminates the likelihood of a recurrance elsewhere. That’s why surgeons often suggest an irreversible, total ileostomy — including removal of the rectum — for those with Crohn’s Disease. It eliminates multiple surgeries, reduces the likelihood of flareups and wipes out the possibility of rectal or colon cancer. I hope that all goes well with you and that you are able to have a reversal. I certainly understand the fears and concerns that a 24-year-old would have with the prospect of a permanent ileostomy. But I’ll assure you, should it ever come to that with you, that there are worse things in life than "living with a bag" — including continual flareups and hospitalizations, long bouts of prednisone and living under a cloud of colon cancer. This "bag" has given me a new lease on life — and it is an active and wonderful life. There are no restrictions on what I can do (except sleep flat on my stomach). I doubt that anyone knows I’m wearing an appliance, unless I’ve specially told them. I bicycle, swim, kayak, hike, am intimate with my wife, wrestle with my kids, eat what I want to eat and am far healthier than when I was living with Crohn’s flareups.  

Response:

thank you actually 34.  you have given me some helpful information.  and to clarify the crohn’s was in the middle part of my large intestine, i am told this is very rare, and i was given the option and since i didn’t know anything about the disease and i am only 24 i wanted to be able to get rid of this bag.

Response:

tjb wrote: > I was diagnosed with crohn’s colitis Nov 2003 after being sick for a month. >  I was so sick I was on the verge of death by the time I finally got to > the hospital and was diagnosed.  The doctors removed part of my large > intestine and I now have a stoma with a chance for reversal ( the doctors > said 4-8 months) since the surgery they have found colitis is my remaining > rectum and i am on Imuran and prednisone to try to clear it up.  Dose > anyone know anything about these drugs?

I don’t know much but I know that you should definitely not stop taking the prednione suddenly. Even with the slow reduction in dose when I came off them I was a bit mentally affected. It wasn’t fun. Rob

Response:

I’m not a doctor, but I can give you a lay person’s perspective about both drugs. Prednisone is a steroid commonly used to control inflammation (anything from poison ivy to Crohn’s Disease). It is very commonly used to treat Crohn’s and colitis flareups. It can work well, but depending on the dosage and the length of time you are on it, it can have adverse side affects. They include weight gain, thinning of bones, moon face, insomnia, increased appetite and mood swings. Rare adverse affects include glaucoma, diabetis and psychosis. It is an inexpensive drug that is widely used, but some people (including me) find the side effects are almost as disagreeable as the condition it is used to treat. There is a newer form of steroid that primarily treats the lower intestine that involves less steroid being absorbed in the body. There also are steroid suppositories that can be used in the rectum to treat rectal inflammation with less drug absorbed in the body. As another writer suggested, you have to taper off the drug very, very gradually. I have been on Imuran for about 8 years. It was developed primarily to suppress the immune system so people  who have organ transplants don’t reject donated organs. It has also commonly been used in much lower doses (50-100 mgs a day) as a treatment for Crohn’s and colitis. It takes quite awhile for Imuran to kick in, so often people are intially put on prednisone, which acts quickly, and then tapered off of it as the Imuran kicks in.      In high dosagages used for kidney transplants there are elevated risks of leukemia and liver problems. Although these are not much of a concern at lower doses, most people on Imuran therapy are given quarterly blood tests to ensure that their white cell count isn’t adversely affected. Some people experience slight nausea initially while taking Imuran. It usually subsides after a week or so. I’ve been on Imuran for 8 years. I notice no adverse affects from it. It has not caused any increase in infections or colds. Inasmuch as you have Crohn’s, which is a systemmic disease, I’m somewhat surprised the doctor’s retained your rectum and offered the possibility of a reversal. I’d be inclined to have the rectum remove.

Response:

I was diagnosed with crohn’s colitis Nov 2003 after being sick for a month.  I was so sick I was on the verge of death by the time I finally got to the hospital and was diagnosed.  The doctors removed part of my large intestine and I now have a stoma with a chance for reversal ( the doctors said 4-8 months) since the surgery they have found colitis is my remaining rectum and i am on Imuran and prednisone to try to clear it up.  Dose anyone know anything about these drugs?

Response:

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