RE: UC and Dr. wanting to remove sons colon

[Guest guest]

Hi ,

I have a j-pouch - the UC was not under control with imuran, 6MP, asocol & another med (an enema). The doctor didn't want me to go on prednisone again, so a j-pouch was recommended. I had the 1st surgery in 10/2005, and the take-down in 1/2006. I do have chronic pouchitis (sorry about my spelling - it seems to be getting a lot worse lately). Anyway, I'm on flagyl for the pouchitis, and the j-pouch is going pretty well. The ileostomy is a challenge, but I got through it for 3 months. Unfortunately, I was diagnosed last Nov. with autoimmune hepatitis, so I'm back on prednisone, but going off it slowly (now down to 7.5 mg/day).

The surgery is big, but you get through it. It's a tough thing for a kid to go through. I suggest you go to the j-pouch.org web site for information on the j-pouch. Even if he doesn't get a j-pouch, you still learn a lot about living without a colon. He'll have probably 4-8 bowel movements a day. He'll need to be on a soft diet right after surgery. It may be a year or two before he can have salads again, but that too will happen eventually. The first year is the roughest, then it gets easier.

-Marie

Reply-To: To: CC: Subject: UC and Dr. wanting to remove sons colonDate: Fri, 12 Oct 2007 09:00:56 -0500

Anyone have any advise. My 9 year old boy has UC and PSC. PSC is quiet now since the URSO.... UC has not been under control unless he is on high dose of prednisone. He relapses every time he comes down. He is on 6MP, Allo purinol , prednisone and Azacol. He has had 2 Remicade infusions. Dr. wants him off these meds as a result of him now having osteoporosis from the meds and severely low white blood counts and protein levels and so on. Dr. afraid of lymphoma as a result of meds. They want to do a complete Colectomy with a bag for about 6 months. Sounds so drastic but they say this will heal the UC and he will be off meds forever. Anyone out there with advise or stories. We will do one more Remicade infusion but then Dr. wants us to meet with surgeon. The Dr. feels Tyler is just getting by. so, use to be tired and fatigued and son. He says he will feel so much better once colon out??? PLEASE ADVISE??? Ostosmother of Tyler age 9 and McKenna age 5

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[Guest guest]

I just want to add that I also had a colectomy in 2000, when I had 90% of my colon removed. That decision was one of the most difficult of my life, even though looking back it should have been a slam dunk, since I had adenomas (pre-cancerous cells) and tons of pseudo polyps. I just knew my body would never work the same again. And I was right - it doesn't. But there really wasn't much choice. Now all of the large intestine is gone, but for one or two inches by the anus. There is still a risk of cancer on those 2 inches, so I still need to be scoped every year, but I am glad most of the cancer risk is gone.

Sometimes you just have to do what you have to do, even if you don't like it. But it can be incredibly difficult. Another problem was that at the time the UC was under control and I was feeling fine - so it was an extreme surgery to go through when you feel fine.

I hope you can reach a decision and have peace with the decision.

-Marie

Reply-To: To: Subject: Re: Re: UC and Dr. wanting to remove sons colonDate: Fri, 12 Oct 2007 09:21:10 -0500

It does actually and it was mentioned to us by our doctor that we could do a liquid diet for several months but with Tyler being a 9 year old boy, I do not know how we could preventive from eating anything at all....... It may be a consideration rather then going to this drastic measure.......Tyler told me he wants the surgery as he wants to feel better. That breaks my heart that he would prefer surgery over how he is feeling. Yet, he stillwants to eat french fries from time tio time even though it gives him a tummy ache after......thanks for the info!! I hope your little boy improves too as he is so little to be going thru this."e" <ddlundin (AT) comcast (DOT) net>

"e" <ddlundin (AT) comcast (DOT) net> Sent by:

10/12/2007 09:15 AM

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Re: UC and Dr. wanting to remove sons colon

Hi, I have a son that has psc and he is 3. We have the same problem,everytime he goes down on the steriods he is bleeding again. Rightnow he is on his 4th round of steriods. He has not had remicade yetbecause I just want to try anything else. I'm sure there has to beother problems with a bag, it can't be as honkey dory as these doctorsare saying. I don't know that I would do that yet. We are very luckyto have doctors that are willing to try anything. They are veryknowledgable about PSC and Colitis/Chrons at Philadelphia Childrenshospital. Have you tried a feeding tube yet? We tried it and whilehe was on it he was feeling great! It is a lot of work on your partbut it gives him great nutrition and allows his colon time to rest. Alot of doctors will not want to do it, so don't be suprised if theysay no. Hope this helps a little.eMother of 4 ages 6,4,3,1>> > Anyone have any advise. My 9 year old boy has UC and PSC. PSC is quiet> now since the URSO.... UC has not been under control unless he ison high> dose of prednisone. He relapses every time he comes down. He is on6MP,> Allo purinol , prednisone and Azacol. He has had 2 Remicade infusions.> Dr. wants him off these meds as a result of him now having osteoporosis> from the meds and severely low white blood counts and protein levelsand so> on. Dr. afraid of lymphoma as a result of meds. They want to do a> complete Colectomy with a bag for about 6 months. Sounds so drastic but> they say this will heal the UC and he will be off meds forever. Anyone out> there with advise or stories. We will do one more Remicade infusion but> then Dr. wants us to meet with surgeon. The Dr. feels Tyler is just> getting by. so, use to be tired and fatigued and son. He says he will> feel so much better once colon out??? PLEASE ADVISE???> > Ostos> mother of Tyler age 9 and McKenna age 5>

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[Guest guest]

Dear ,We did everything we could to save my son's colon but nothing really worked from him and he really neededthe colectomy. He was 22 and had the j-pouch surgery. It was the right thing to do and he is much better.You are in a different place since your son is so young. My advice would be to get several opinions from the pediatric specialist and then make a decision.In our son's case it had to be his own decision and he let us know when he was ready.Since your son is so young, this is a touchy situation but I would still want to know how he was feeling about the differentpossibilities.My heart goes out to you, it is a hard decision to make.LeeAnyone have any advise. My 9 year old boy has UC and PSC. PSC is quiet now since the URSO.... UC has not been under control unless he is on high dose of prednisone. He relapses every time he comes down. He is on 6MP, Allo purinol , prednisone and Azacol. He has had 2 Remicade infusions. Dr. wants him off these meds as a result of him now having osteoporosis from the meds and severely low white blood counts and protein levels and so on. Dr. afraid of lymphoma as a result of meds. They want to do a complete Colectomy with a bag for about 6 months. Sounds so drastic but they say this will heal the UC and he will be off meds forever. Anyone out there with advise or stories. We will do one more Remicade infusion but then Dr. wants us to meet with surgeon. The Dr. feels Tyler is just getting by. so, use to be tired and fatigued and son. He says he will feel so much better once colon out??? PLEASE ADVISE???