I had my J-pouch created in 1992...at that time I was told I definitely had UC...over the years I suffered with chronic pouchitis and it wasn't until after my gallbladder surgery(2/2/07)that I finally had relief from the pouchitis and became antibiotic free...this lasted 5 months...I have since been horribly ill, nothing like pouchitis...I was scoped and had a biopsy...although it did not definitely conlude I have crohn's, my doctor feels it is because I have inflamation above the pouch...so back on cipro I go...and while I have some good days...I don't have the total relief I had when I had pouchitis and took cipro...I have no idea how to handle this as I am not used to this pain...my doc discussed options like asacol, entocort, humira, remicade, etc...I am scared of the side effects...last year I tried pentasa (twice) and had a bad stomache reaction(up all night with diarrhea and vomiting)...I took asacol before I lost my colon and had no side effects...this med however is in the same family as pentasa...my doc said I may have had a reaction to something in pentasa and may be able to tolerate asacol...makes me nervous...as do the other drugs...can't take sulfa anymore b/c of an allergic reaction...any thoughts out there regarding the medications? anyone else been diagnosed with crohn's after almost 2 decades with a pouch?...I'm very frustrated and scared...debbie

Hello.

You can read about my summary in the rant and rave j-pouch removal posting. I am at the point of removing my j-pouch. BUT THIS IS NOT WHAT I AM STATING IS YOUR CASE OUTCOME!!.

I too have had chronic pouchitis and have a diagnosis of Crohn's. I initially tried Remicade (infusion - - I prepped with Benadryl) with 6MP for a non-connecting to bowels RV fistula. I was about 90-100 lbs at that time due to my body being so sick. My normal healthy weight is about 115-125 lbs. My other option at that time was also surgery. I did the standard protocol for Remicade and then 4 weeks out I had another dosage. That process went on for 3 months and then I took the Remicade every 2 months for 2 1/2 years. I stopped Remicade when I started getting adverse reactions (severe abdominal pain) and antibodies. I then stayed on 6MP and then developed pancreatitis symptoms, so I had to go off it. I have been "managing" with antibiotics and topical steriods until a new RV fistula presented itself.

Now I am on Humira (2 every 2 weeks). No 6MP nor Immuran due to my intolerance to the drugs. I am allergic to sulfa so those related drugs are also off limits. The Remicade, I found, had more of a punch. But, then, again, maybe the inflamation is more now and longer duration. Who knows? My inflamation is basically in my pouch. I also have massive adhesions and prolapsed uterus - - so sometimes what is causing the pain has been difficult to discern. I take the shot at my Dr's office and it only stings a little for me - - actually nothing in comparison to my regular daily pain.

Have you tried hydrocortisone enemas? suppositories? foam? I like the foam best for it does not cause internal burning for me. If my pouch is feeling ok, then suppositories are what I switch to for maintence as I do not feel as much steriod side effects. OOPS - - just re-reading your post and realizing that your inflammation is more above the pouch. The enema might work as a backup for the liquid nature might reach your inflammation point.

It is hard to decide to go on these drugs. I am glad that I tried Remicade and 6MP - - they made me healthier - - for me - - only for a while. I am glad that I have tried Humira - - it has helped me stay out of the hospital. I weighed the information and decided the drugs were ok for me to try. Only you can decide. I wish you some better days.

Lala

Hi Debbie,
I got my j-pouch in 1992 as well and just had it removed in May because of a r-v fistula and crohns of the pouch. I had my pouch removed ONLY because the fistula couldn't be repaired and not because of the crohns. Though I didn't have any other symptoms until my fistula appeared and had very good function until about 3 years ago. So I can't really identify with all the problems you've encountered, drugs etc.
I think the stats are somewhere around 50% of pouchers with crohns can keep the pouch. Many people have had very good success with the new biologic therapies. (Remicade, Humira, Cimzia) The only med I'm currently on is 6mp and I have no side-effects. Do your research! Knowledge is power

Good luck

--
katie

Thanks Katie and Lala for your responses...I have since doubled my cipro and I'm doing a little better...I have an appt. with my GI doc next week...I have researched the other meds and they still scare me but I guess if I have no choice I will give them try...I'm very tired of living my life around my GI problems...but I know things could always be worse...debbie

My feeling is that there is no way that side effects I may never get can be worse than symptoms I cannot tolerate now.

So, my decision to use Humira was a no brainer for my AS.

Jan

Hey Debbie,

I have Crohn's and was diagnosed just 9 months after my takedown. My doc and I are being very pro-active and staying on top of it, so after I was on Entocort and Xifaxan for a few months and it got my Crohn's from Severe to Moderate, we are now trying Humira and I noticed a big difference just after a week on it. I did my second set of injections tonight and am expecting to feel even better next week. I was really scared to try this, to be honest, but I agree whole heartedly with what Jan said. Sometimes you just gotta take a chance too, ya know? I think you should do some research. Oh, I am on Imuran (6mp) too...If you need anyone to talk to, feel free to PM me!
Good luck!

I had my J-Pouch done in 1999, and it was orginal diagnosis UC. Then in Aug of 2006 after hitting a low point physically I went to Cleveland Clinic and now being seen by the pouch specialist. Dr. Shen, and now I have a diverted ostomy and some day we are going to reverse the ostomy. From what the doctor told me and what I have learned it is becoming more common to develop CD of the pouch.