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Ulcerative Colitis
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Posted 5/7/2008 7:42 PM (GMT 0)

Hello Everyone, my name is Paulie and I am actually on this forum to discuss the problems with my mom and her issues that she is having with UC. She is 46 yrs old. Please bare with me while I explain her situation and if anyone can respond, I would certainly appreciate any information you can give me.

My mom was diagnosed with UC 6 yrs ago...asacol kept her in remission really well until this past summer. She began to have flares and the doctor put her on prednisone along with increasing the dosage of her asacol. She responded well, but only temporarily. The next step the doctor wanted to try was 6 mp. She did not respond well at all to this. She had terrible nausea symptoms and headaches as well. Really bad headaches. She was hospitalized for a week and they could not figure anything out. The doctor then believed it may be the 6mp causing this and it was. The headaches and nausea went away immediately. However the problems with UC continued. She put her on prednisone 40 mg.

about 3-4 weeks into this treatment with the steroids, my mom began to have rectal pain. It began slowly but got pretty severe really quick. We saw a specialist who determined there was some fistulae. She had minor surgery to remove these, and the doctor noticed an ulcer and punctured this. The rectal pain continuted however. The following week we had a colonoscopy and the doctor deteremined that there was severe ulceration everywhere, the doctor didnt even reach the colon b/c of the situation. Immediately scheduled the next step which is REMICADE, whicch is our last viable option and in the meantime wanted to increase prednisone temporarily to 60 mg.

Started remicade last week, approx. 1 week ago, no improvements thus far, and second treatment is coming up next week. The main issue is that she has bowel movements soo often, 4-5 during the night and 4-5 during the day. The stool is small smooth pieces, so not necessary loose. But the issue is that she has rectal pain, and the bowel movements dont help (she has the pain after the bowel movements and during also). If anyone has any experience with this or can offer any more information it would be appreciated. HOW LONG DOes remicade take to kick in and has it helped anyone in this kind of situation? Please respond. Thank you so much

Paulie

Mom is currently tapering prednisone, and on 12/ asacol a day and started remicade last week

Posted 5/7/2008 7:54 PM (GMT 0)
Paulie, your mom's stool pattern and pain are similar to what I had, except I was going much more than that. The pain is a sign of rectal inflammation. Cortifoam or a steroid enema will often ease that, although with severe inflammation Cortifoam is usually much easier to tolerate. Once the inflammation is under control, she may want to try the Rowasa enemas to help heal the rectal area.

I'm glad she's tapering the Prednisone, this is not a drug for long-term use. In that area, your mom's GI sounds right on target.

I've been on Remicade for two years now. I started feeling better after the second infusion, but that's variable. Some feel better with the first, others not until the fifth. Hopefully it will help her as much as it has some of the rest of us.

One thing she may want to add to her regimen is a good probiotic to replace the good bacteria in the colon. Most doctors won't suggest these, but almost all of us take them. You can get a good mixture at any pharmacy or health store.

So, continue the Remicade and Asacol, consider asking about rectal medications (probably Cortifoam) and add a probiotic. Hopefully that will bring her back into remission. Remember that it will take some time for the colon to heal completely even after the flare is controlled.

Welcome to HealingWell. I'm really sorry your mom has this Darned Disease, but glad you found this site. People here are very helpful and supportive.
Posted 5/7/2008 8:02 PM (GMT 0)

Judy,

Thank you for responding so soon. Yeah it certainly has been tough, and I was actually just "googling" some more information on remicade and I came along this website.

Thank you again, I will find out more info about the probiatic and other possible rectal medications.

Hopefully the remicade will have some effect soon, because its so hard to tolerate day in-day out. But thanks for the support. I just read your information, so glad to hear that you are doing so well and in remission since april 2006. Simply amazing. It certainly is a tough disease.

Paulie

Posted 5/7/2008 10:09 PM (GMT 0)
Hi Paulie, yes this is a great support forum. I found this few weeks back when i was very worried about my husband. His situation has not changed much but and we are still fighting flares after every few days but just be on this forum, i do get lot of questions answered and support which i cannot find anywhere.
Posted 5/8/2008 3:36 PM (GMT 0)
Sorry to hear about your mother. I am one of the lucky ones who does not have severe UC, but did want to say her BM are very similar to mine when I have flaring.

I have never been on Remicade as the Salofalk suppositories(5ASA) works great for me to reduce the inflammation. Give your mom an extra hug, she really needs one.
Posted 5/8/2008 7:18 PM (GMT 0)
I would also suggest asking the doc for cortifoam. It was one of the only things that relieved that awful inflammed rectum feeling for me. Since it is a steroid, it will need to be tapered.
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