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I had my J-pouch created in 2009 for a then diagnoses of UC. I tried all the normal UC medications and took Remicade for 3 years before it finally stopped working. About 2 years ago I started having issues cuffitis, pouchitis, and then was diagnosed with Crohn's. I had a pouchogram completed today and the GI is very concerned as I have severe ulceration on my cuff, pouch, and small intestine above the pouch. I've taken all medications that I know of and am really worried that I am about to lose my pouch and still have the same issues due to the inflammation/ ulceration in my pouch. Here are the meds I've been on

Asacol- didn't really every help
Remicade- Failed with UC
Humira- never worked
Cimzia- never worked
Protofoam- never worked
Canasa suppository- never worked
steroid suppository cannot remember name but never worked
Tindamax- never worked
Endocort- current med
Pentasa- current med
Predisone 20mg current med
Flaygl- current med
Cipro- usually rotate to for pouchitis but didn't work last time I tried

I think that is all of them…. My GI has tried to get me to take Tysybri, but after reading the side effects I really don't want to think about trying it, and in addition I tested positive for JC virus antibodies so I really shouldn't be taking it, but my GI has still been pushing me to give it a go even with the risk of JC virus. I have no idea what to do and am at my wits end. I cannot remember how long it has been since I've been this sick and I just don't know how much longer my body is going to keep the fight without ending up in the hospital. In addition to the normal issues that go along with pouchitis, cuffitis, and Crohns, I've had a temperature every day (100-101), chills, and shivers for the past two weeks. My PCP says it's not viral and I need to call my GI, and my GI says its viral and I need to call my PCP…..

When will it ever get better? To beat it all I just finished my bachelor's degree,and graduate next week. Between school, working full time, and having a year and a half old son the past two years have been so busy, and now I finally get time to sit down relax, and spend time with my family, but all I can do is lay around in my chair sick to no end!!!!! I just want to be normal and enjoy my family… is that to dang much to ask for!?!?!?! (sorry had to vent)
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You probably don't want to hear this, but it might be time to start looking at ileostomy. It will not cure Crohn's, but eliminate the reservoir that tends to be the issue with folks with Crohn's. You can try a diverting ileostomy and see if that at least puts you in partial remission. Then you sort of will know where your path is.

The fact that practically nothing has been effective is what leads my thoughts in that direction.

Jan Smiler
yes a second opinion is probably in order. And unfortunately my surgeon has moved half way across the country and isn't an option.

Jan- I was afraid you were going to say that. I'm just not ready yet for a permanent ileostomy. I know and end is different than the loop, but my loop was a pain in the butt and leaked almost everyday… I'm just not ready to have to deal with it again. There is a new medication that is a biologic that has been designed for UC/Crohn's that is up for final FDA approval in February that my GI was talking about a few weeks ago. not sure if it will work or not, but being this close I really hope I can make it and see if it will work…….
Chris - the drug is vedolizumab and the FDA's advisory committee on GI drugs is discussing it on Monday. They'll be posting a whole bunch of documents about it here:

Not sure if you like reading about all this stuff or prefer to leave it to the pros, but I thought I'd post... From what I've heard, vedolizumab is supposed to be a good option for people who have lost response to Remicade. Not sure if you have ~2 months to wait but if you can I definitely would. I agree with you that Tysabri is not worth the risk if you're positive for JCV.
One thing that is going well is my number of BM's per day since I've started the prednisone. I went from 18-25 a day down to around 6-7. To me that is progress, but my scope today doesn't appear that progress is being made, or it could mean that I was in a lot worse shape a few weeks ago, and things are starting to heal up. As bad as I hate to maybe a bigger dose of prednisone is needed. My GI wanted to do 50 mg a day, but we compromised on 20mg because I really didn't want to get back on it…..
Is it confirmed that a decision for Vedolizumab will come in February? If so, can someone send me a link where I can read this? I am on the trial for Veodulizumab and it is partially working for me but there are so many restrictions on the trial that I CANNOT WAIT for it to get approved. My doctor, a global leader in research, said it will get approved early 2014 but I have no details on when....would appreciate if someone could send me a link with something concrete from the fda or from millenium pharmaceuticals.

Hi Chris ,
I am curious to what kind of syptoms you are having? I recently recieved my jpouch my take down was August of 2013. I have a diagnosis of chrohns / colitis. Berfore even doing the surgery biopsys were done and mine all showed up negative for chrohns or colitis. And on the 19th of november I had pouchoscopy and she did several biopsys on the cuff area, and that shoed up negative as well (praise GOD!). I was told I had a little swelling on the cuff of the rectum and I told her I had like burning stabbing sensation inside and also still having butt burn!What the heck is up with this I have tried everything. Also my surgeon put me on Flagyl and Cipro. I didnt do well with the Cipro so I am now on Xifaxan, in which I just started yesterday. Well I was reading up on it and it said that after 24 hours of taking it and if you dont see a difference then to stop it! I am now thinking what in the heck is it then? Anyone reading this please respond Im at my withs end of things any response is appreciated. Thanks LJK
PKitty.. The info I posted came from my GI a few weeks ago. All he said was it was up for final approval in February, but I have zero confidence in him so he could just be blowing sunshine up my butt for all I know. All he cares to talk to me about is Tysybri and if I'm not willing to try it then there is nothing else he can do.. I guess tysybri pays the most…..
ljk- my symptoms are 18-25 bowel movements a day (I've been on 20mg of predisone for 3 weeks now and it is down to about 6-8 though), I've got sharp pains that come in go all throughout my abdomen area, last Wednesday I had severe bleeding almost all day. I had a scope done on Friday, and my cuff, pouch, and illiim (area right above the pouch I think that is the name) are severely ulcerated. I didn't get to see the pics as another Dr. completed the scope for my normal GI, but she was very concerned about how deep they were, and said she could definitely see why I was bleeding. I also have gassiness, and bloating. My stomach has swelled pretty severely a couple of times. My normal GI, and Dr. Shen has both tested for Crohn's and both tests came back negative or inconclusive, but they both feel it is Crohn's and are treating as aggressively as they can for it.
one more thing. When I had my colectomy my large intestine/ colon was sent off for full tesing and came back 100% ulcerative colitis.. guess 100% isn't really 100% though… When I saw Shen last year he did have a theory that Crohn's develops at our suture sight after surgery, or it is a new autoimmune disease that they really don't know about. This info is over a year old so he may have proven or disproven this theory so I wouldn't hold to much to it without seeing what his current thoughts are on the matter.
Did the prednisone help? I'm wondering if they gave you a higher dose of prednisone if that would help get you through to February. I hate the stuff but it did work for me. I had UC bad from by my appendix in patches over to my rectum when I was finally diagnosed. (I had had it for years undiagnosed and untreated.) 6 months of a high dose, tapering down included, and it lasted a long time. I hated the side effects but am wondering if this might shock your system into some kind of remission for the time being.
TE- before my surgeries when I was diagnosed with UC as long as I was on 50mg of Prednisone I was as close to a normal person as I could be. As soon as I started tapering and got below 40mg almost overnight I was in a full flare. This is the first time since my surgery that I have been back on it. I am taking 20mg a day and I believe it is helping, maybe a larger dose would help faster, and bridge the time gap that I need until the new medication comes out.

LJK- I've seen Dr. Shen once, but my normal GI care comes from Vanderbilt in TN

Pkitty- The only tests that I am aware of came from biopsies that were taken when I had a scope.

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