not worth the pain anymore

Hopefully, an ileostomy will end this struggle for you. I probably would have thrown in the towel long ago. But, each of us has our own breaking point.

Good luck!

Jan

Was there more to what was going on with the jpouch? I just joined this sight and this is the first time I have ever heard of anyone, wanting to go back to an ostomy.

Pouchington has had very poor function from the beginning. His pouch is fine, but cannot get good function and his eating has been severely limited. Nothing he has tried has been helpful.

This is the exception, not the rule. But, you will see that there is a small percentage who either have failed pouches or never adapt to it.

Jan

Hi Pouchington

I gave up my jpouch of 18 years for a perm ileo four months ago - no regrets.

If you have any questions feel free to PM me.

Pouchington...my only regret going to a permanent ileostomy is that I suffered 2 1/2 years before doing it. Best of luck...good for you to want your life back! :-)

I am sorry to hear about the problems you are having with your j pouch and that you are at the end of your rope with it. I can only relate to the challenges I had with mine (healthy pouch, but frequency and skin irritation problems) over 30 years and the severe dysplasia in the anal canal that led to its demise. Quality of life was a major factor in evaluating the alternatives available to me and what led me to have a BCIR instead of an end ileostomy. I don’t mean this to sound like a sales pitch for the BCIR or K pouch, only to mention these alternatives. It is possible in some cases to use the existing pouch and just add a valve and buttonhole stoma. You should consider discussing these options with your doctors at CC. I wish you the best with whatever you decide to do. I have no regrets concerning my choice.
Bill

Cataja:
I noticed your signature shows you went from a UC to Crohns diagnosis. When you went back to an illeostomy - did you still need crohns medicines. SOme doctors think if my son goes to an ileostomy or even has a pouch redo that he would not need the crohns meds anyomore. Thank you.
Pouchington - I am sorry about all the suffering you have endured.

thanks you guys. i really appreciate the encouragement. in the mean time im trying to get a case of sibo under control and the xifaxan side effect are brutal to the point of having to stop after two day with shens approval. how long do the various sibo diets take to show relief? im willing to go protein only for a while just to get some relief from these awful symptoms.

In my experience SIBO responds slowly to antibiotic treatment (treatment is usually a few months). I'd expect diet-only methods to be slower, but that's a guess. I used doxycycline for SIBO with good success, but it took a few weeks for me to notice the benefit, and I had a heck of a bellyache for the first week or two.

Xifaxan doesn't usually cause many side effects, because it isn't absorbed into the blood. I'm sorry you didn't tolerate it. It didn't do anything for me except shock me with the price.

You're in my thoughts as you have certainly suffered greatly. I feel a little guilty as my road since the 2-step J-pouch surgery has been a blessing. Can't say I'm not concerned about how long the thing will last but it has given me a 99% quality of life.

Good luck and speedy recovery in whatever path you take - you deserve it!

I feel the same way you do. I've had the j-pouch for 14 years. I've been very sick in the last 7 months. I've been treated with Cipro. Was taking Flagyl this week. Gastro. Dr. doesn't know what to do. He's not familiar with j-pouches. I've come to find out most aren't. I went to my internist yesterday. He did blood work and ordered stool cultures but wants me to stop FLagyl and start cultures on Sun./Mon. Has anyone had to do this? He thinks I have a bacterial infection. He wants to know what he's treating before he gives me meds. I don't know what to eat. I have diarrhea even after I eat toast or chicken noodle soup. I also have left sided stomach pain when I try to eat. I've lost 20 lbs. since Oct.
I was going to talk to the surgeon about going back to the ostomy bag if this can't be resolved. But, I'm not sure about it since I got a lot of skin infections when I had the bag.

boy's mom...After I had the j-pouch surgery, I never got better. It was like I was still in a bad flare. Within the first 6 months the doctors at Mayo said there was a chance I had Crohns, although I always presented like UC. About 1 1/2 years in, I developed a fistula that is usually only seen in Crohns, hence the rediagnosis. I was on weekly Humira injections for the first 3 years after having my j-pouch disconnected. I have since quit those and am currently on no maintence meds. My biggest issue is that I have had 5 obstructions in 5 years, all have required hospitalization, 2 have required surgery. Actually, I was hospitalized a last Friday and released Monday for the latest obstruction.