For those of you who had the perm ostomy put back I have a question. Was it because the pouch failed totally or was it that you just got tired of dealing with the whole Buttburn/leaking/lousy diet choices issue?
My pouch works but the daily buttburn/little leaking/raw taco butt thing is getting old. It doesn't seem to be diet related...some days all I eat is peanut butter/rice cakes and plain oatmeal. Probably anemic too because I am tired a lot.
just wondering...
Thanks
David
PS - almost 1 yaer post TD

David,

I'm at a loss for words, this post is a bummer in the sense that your having so many post-td issues, I mean we went into surgery like 2 days apart I think last July. I don't have advice for the question you ask but just wanted to let you know that we are so sorry .
mark

Hey Mark & Megan.
Thanks for the post. I am not going to give up the pouch without a hard long fight...We all have gone through too much to give up easily.
Thanks
David

Hey buddy, what kind of a drug regimen are you on? You would think that you and I should be plumbed up pretty much identically. You’re pretty sharp with this stuff, so I imagine you’re keeping the diet records and whatnot. There has got to be something that’s a trigger. Have you had any good days with the butt burn?

Hi David,

I lost my j-pouch due to it being overstretched and buckling over on itself. I could only empty 12% of the contents at any one sitting (pun intended) which led to chronic bowel obstructions and pouchitis due to bacterial overgrowth. I also had chronic fissures and frequently had to deal with perianal abscesses and ulcers. My bottom quite often looked like raw hamburger meat. To say that I am glad to be rid of all of these symptoms is an understatement.

However, I did battle for 8 long years (and as many operations) to try to save my pouch so it really is a very personal thing when it comes to how much you can tolerate before throwing in the towel.

My only regret is that I didn't do it earlier, but then hindsight is 20/20.....

Shell

3 1/2 years of chronic pouchitis, restricted diet, Cipro non-stop, feeling constantly fatigued, etc...That's why I went to the perm ileo.

3 surgeons told me they could "Fix" my pouch but I was just done with it. I was tired of fight for something that never really worked well for me anyway. I don't see it as giving up, but moving on.

No drugs, no diet restrictions, no life restrictions - 5 years pouch free and happy.

My jpouch never really "failed." I think I decided I wanted an ileostomy when I realized that I honestly didn't even want to live anymore. I felt like I truly had nothing left in my life. I didn't want to be with friends, I didn't want to be with my (ex)boyfriend, I didn't want to go to school, didn't want to go to college, I really assumed that I'd commit suicide by the age of 20 because I just couldn't see myself living like that for the rest of my life. I just never felt good, never had energy, I couldn't stand for more than 10 minutes without my hips being excruciatingly painful, I had an abscess, my hair was falling out, I always had a stomachache and felt bloated, and I was going to the bathroom atleast 12 times a day. I put up with this for 7 years. Then one doctor suggested an ostomy and he saved my life.

Now I'm 18 and I feel like my life has just begun. Shell is right, it's a very personal decision and everyone is different, but I think this is true for everyone: you will KNOW when it's time. I felt completely at peace when I made the appointment, and I was still very calm going in for surgery because it just felt right. I mean yeah, I had a lot of complications, but at the same time, I'm still so happy with my decision.

Thanks for the replies...
Tad - it is the craziest thing. I can eat the same thing 2 days in a row and my butt reacts differently each day. It is not pouchitis or cuffitis because I do have some days where everything works fine. I bet I just need some more time for things to adjust.
One thing I have noticed is that on the days where I stand all day at work I seem to have to go more which causes more butt burn. Maybe standing cause the gravity thing to work faster at filling up the pouch.
I still go to Moe's...just no salsa and tortilla chips for me.
Thanks
David

I have found that when I am on my feet all day I get a lot more gas, which leads to cramping and bloating. On office days I feel pretty good all day even if I end up working all day. The food at Moe’s is awesome . My wife and I went there for the first time when we went out to the Biltmore in Asheville. We go about once a week since then. I can’t get the spicy salsa, but the regular is ok. I am still afraid of the lettuce, as that gives me the runs. I hope that you’re able to get something figured out man. Keep me posted, you’re certainly in our thoughts here.

Man, I got to say reading this post is depresing to me. I had illeostomy on Feb. 20 of this year. After some initial adaptation issues, preventing leaks finding the right bags and adhesives it was pretty good. Only proglem I didn't like was emptying it so often. When I ate what I wanted to sometimes had to empty twice in an hour.
I just had the takedown on June 11. I was ecstatic, but within two days I was back in the hospital, the doctors called it illeous or partial blockage. I have not eaten food 10 of the last 12 days. Tomorrow I go home. And I sure hope I don't have all the complications I read so much about. I'm glad that if the jpouch fails I can go back to bag life as it was pretty good far better than UC. but I'm hoping and have faith that my pouch goes better than all the posts on this question. I feel bad for all you who have suffered but I'm praying I am happy with the JPouch.
Eric

Eric you had a loop ileo, the permanent one is an end and requires much less emptying

Hey - No more depressing thoughts! Life without my useless colon is way better than before. I am not depressed at all. I was just wondering if people really stuck it out or went back to the ostomy after a year or so. I plan on giving the j-pouch a very long tryout...like a couple of years. If for some reason I have to go back to the ostomy it will be great...anything is better than my useless colon.
I am going on our first family camping trip since the whole UC thing started next week! It has been 2 years since we have taken the pop up trailer out. We are going for 5 days and I don't care where the nearest toilet is going to be...
Eric - sorry to hear things are not going so well. They do get better after your body adjusts. Don't get down on yourself.
Thanks
David