the pouch, that is

So, I had a take down two years ago, and immediately got pouchitis. Since then, I've had two months - in 2010 - where I was healthy and not on drugs. Can't tolerate cipro (bad neuropathy in hands) and flagyl (complete and total fatigue) and rifaximon doesnt work. Currently on augmentin. Have been taking 4 sachets of vsl3 a day, too. Figure why not, tho it doesnt keep me in remission. Use Canasa, too. 50 percent of my life is about my pouch. Tired all the time. (I'll also add my ureter was damaged in the original surgery, and I spent months with urine leaking into my abdomen - yes, it took going to another hospital to get that diagnosed as I wasted away - and had to have reconstructive surgery to fix that.)

I was on 6mp for 20 years to treat UC, and wonder if stopping that after J Pouch surgery hasnt left my intestinal immune system highly sensitized, hence the pouchitis. But cant find any literature on the subject.
If I didnt have a unionized job I'm sure I'd be out of work. I miss, on average, 3-5 days a month.

Tomorrow I ask by gastro to put me on 6mp again, and steroids for the three months it takes to kick-in, and hope that it works.

But why not go to a bag? Anyone want to suggest a reason not to?


Nathan

Nathan - I'm only 6 months since takedown and don't see how you can even work with all of this going on. I hate steroids and if you have to go back on them and the same medication as UC it seems like you are back to where you were before the surgery.

Cataja is a great poster on here and she went back to an ileo after 2 1/2 years with her pouch. If you don't hear from her on this post I think it would be a good idea for you to PM her.

I hope you find relief soon.

Nathan,
Is the augmentin helping you? I have been on it too since takedown and it does seem to help me.
I am sorry to hear about this and hope you will find some combination that works for you to get relief versus having ot undergo another surgery. Are you taking oral sulfasalazine or something along those lines as I am not sure if canasa is strictly for rectal use or not. Maybe this is an option before 6mp and steriods again as other here have posted they have gotten relief from it.

I went to an ileo after 3 1/2 years of chronic pouchitis and wonder what took me so long...I was thirty at the time - it was ten years ago. No drugs no GI issue eat whatever I want. Never think about bathrooms or bowels. Have since had two babies.

At first just disconnected pouch with end ileo but got worse and had to have pouch out 18 mths later but otherwise couldn't be happier.

Let me know if you have questions.

Hi Kjeane

The augmentin works well, and without the side effects of cipro and flagyl. My doctors, and the literature, suggest I'm particularly sensitive to those drugs. Again, I wonder if it is the result of 20 years on 6 mp. The biggest problem with the augmentin is periodic fatigue. I'm going to mention sulfasalazine to my doctor. The difficulty is that lately when I relapse I really, really relapse, so I'll have to be on something that keeps my insides under control.

I am about 8.5 months out from take down and broached this subject with my surgeon yesterday. He says they have a 5% failure rate but that it would be higher if they did pouches on all the people that want them. They refuse to do them on certain people due to foreseeable problems. We both feel its too early for me to go to the bag but what it come down do is it is a life style choice. 30 or so years ago everyone that had a colectomy had an ileostomy. I am still looking for the magic bullet(s) that give me every or most day(s) what I have experienced on occasional days. That being I dont spend my time thinking or feeling pouch related issues and just live my life.
I had good results for a while with Sulfasalazine. Its pretty benign drug and worth a try.

I don't think I could ever go back to feeling sick again like I did with UC so if my pouch fails me at any time, I don't think I would want to hold onto it. That being said, I had an awful time with my ileo. I had a lot of skin issues, burning and itching...it was awful. It was a loop ileo so maybe an end ileo would be a lot easier to deal with.

Hope you can get it under control so you can keep your j pouch.

Well, even if you go back to the bag and do not remove the pouch you can still face pouchtis issues. And then if you remove the pouch-remember it is another MAJOR surgery. I have been in your shoes many times in the last 9 years. In fact I was so sick last year that my doctors were talking pouch removal but gave me once last option of remicade. 2 doses got me into remission and have been pouchtis free for over a year! I wanted to frame my last bloodwork results! Read my posts about my new regime. Before throwing in the towel, I think first you need to find out if you chould have possible CD, if not then there are other things you can try. You might want to look into Pentasa-that worked for me for a few years. Protofoam is another thing if canassa does not work. Another time I took a combo of xifican and pentassa. I personally take 3 canassa every night. You might need a higher dose. Also, very important you have to raise your level of Vit D to the 50-60 range and fish oil for inflamation. PM me if you would like another opinion here in NYC.

I always suggest that people go to Cleveland Clinic to see Dr. Shen before hanging it up. He has helped me and many others when other dr's couldn't. The bad part about going back to an end ileo, if you choose that, is that you lose all that intestine (amputated Jpouch) otherwise, you get the loop ileo and keep the Jpouch, just don't use it. Dr. Shen mentioned to me that the surgeons at Cleveland can convert a J-pouch to a K-pouch, a continent ostomy, so that you don't have to lose as much gut, don't have the inactive Jpouch which you'd have with the loop. Just some suggestions. Hope you find some answers.

why go through all of those awful meds - steroids, etc.. - and carry on not well, when you can just go back to the bag. You can also easily get it disconnected, keeping the pouch in and having a temporary loop ileo. That is not significantly major surgery. It will give you time to sort your thoughts out and feel better. You may have pouchitis with that, as I do, but it is nothing near what it is with the a so-called functioning jpouch.
And going to CC is a great idea. They are the BEST. and can help you sort through all of this. Its worth the drive.