When Cipro alone stopped working for me adding Flagyl did the trick very nicely. Have you tried combination antibiotics?

Others can talk about how they decided they were done.

Thanks Scott. Allergic to Cipro. My last pouchoscopy in July showed severe pouchitis.  I am always on antibiotic; the two I mentioned. My doctor is near impossible le to see and I feel he just doesn't care much how long I am suffering. I am not thrilled with the idea of ileostomy, but am sick of being a slave to the toilet and so terribly sore all the time.

Hello Gail, I can really understand that you are fed up with those problems. There were some posts here recently about going for an end ileostomy. From everything I read so far there are good chances to get rid of the need to take meds and live a more active life if trouble is as hard as you describe it.

Of course there is no guarantee and it needs another major surgery. I'd look for an experienced surgeon and discuss chances.

I for myself have dropped the thought of an end ileostomy for the moment. I get along very well with a small dose of antibiotics.

I called it quits on my jpouch after close to 25 yrs. (I was 60-ish) due to similar issues as you are experiencing, along with fistulas, abscesses, severe cuffitis...  Although I am not thrilled with wearing a bag, it is SUCH a relief to have the pouch gone and have my health/life back - for me, it was worth the trade-off.   I may not be typical, but I have not seen any gastro/surgeon since I had my pouch removed 4 yrs ago, and have been on no drugs other than imodium.  Diversion is also an option,  (I was first diverted for a yr. before pouch removal), and perhaps something to discuss with your surgeon/dr.  There are posts on the ostomy topic discussion here from a number of us who "went back" or were diverted (my jpouch removal thread is at https://www.j-pouch.org/topic/...al-date-and-time-set). 

Dear Steve and n/a:  I really appreciate your two different takes on the issue.  As noted, I am not benefitting anymore (for at least 1 1/2 years from two antibiotics alternating at high doses after low dosage was not effective.  Still no luck and worsening daily side effects; more BMs, nausea, loss of appetite, drowsy and a general feeling of unwellness.

I think n/a, your thought of diversion is interesting and one I didn't think of. It would calm things down, and give me time to see if ostomy will allow a better life.  Mind you, loop ileostomy is awful; larger and leakier, etc.  I remember terrible skin problems.  My first ostomy was just an end ostomy before jpouch was built and it was small, not leaky and pretty easy to manage.

I will be making appointment with my surgeon (one of only a couple in Ontario and possibly Canada) who did my jpouch at Mt. Sinai Toronto.  I will discuss options with him.

Thank you both again for your input. Much appreciated.

Hi Gail..I'm sorry to hear of your need to remove your jpouch. I too am in the same situation. Our stories match almost to a T ! I've been in pain past 12 yrs or so. I got my j pouch back in 1989...had u.c. for 10 yrs & back then I wasnt responding to the meds they had available.  Long story..major complications but a great surgeon  Dr Lavery at ccf in Ohio saved my life & j pouch. I was good for about 20 yrs. Then c diff, pouchitis,  chronic pouch ulcers, etc,etc. I've been on numerous meds & 2 biologics.  Finally..schedule for j pouch excision jan 30th. I won't lie...im petrified of this high risk surgery too many belly surgeries with tons of adhesions but I just don't think I can continue on..I feel like I would crash! I'm 62 yrs old have 2 very active beautiful grandkids that miss having fun with their Nana & I too miss it!!  Praying whatever your decision is..God keeps you in His hands & you move forward to a healthy & beautiful life. Remember..its quality of life that you need. Wish you the best.

Patti

Hi Patti. Thank you so much for your response.  I, too, am afraid of surgery. I almost died with the colectomy/creating Jpouch.  I am thinking that when you got your Jpouch you were still quite young. I believe we all have some health issues and are just not as strong in our 60s. Perhaps that is part of why our Jpouches fail at this point.

If you wish, I would love to hear how you are after your January surgery.  I can tell you are an intelligent woman who did not come to your decision easily. However, you seem confident in the plan. I agree with you. You want to play with your grandkids and enjoy life more. So do I!  It is great when the Jpouch functions well and a lot of folks do enjoy this. My system just never really seemed to like it. 

I had a colostomy first with the thought that my whole large bowel was not affected by UC. However, it was just masked by the Prednisone. No trouble with the first ostomy. The loop ileostomy however leaked a lot and my skin was constantly a yeasty rash and hard to heal given that the bag is always on.  You will have an end ileostomy and will not have those issues. 

I think you will do just fine.  I have a complicated relationship with God, but will pray for your quick recovery and much well deserved health and happiness.

Look forward to hearing how you are doing Patti.

All the best.

Gail