Gathering info until my next appointment at UCSF, at which time I will have some tough decisions to make. My GI, Uma Mahadevan, thinks I should have my pouch removed. I've had lots of pouchitis, many obstructions with hospitalizations, just as many bouts with severe dehydration, now a rectovaginal fistula since December. Dr. Mahadevan sez that most GI's don't have these reconstructions but opt for ileos even when they're diagnosed in their thirties (I'm 61).

It seems that no choice will free me of the troubling symptoms. Since I've had so many surgeries already, I have very little small bowel remaining, malabsorbtion, bloating, gas, inability to go alternating with perhaps 20x day diarrhea. Additionally, when I had a temporary loop ileo, I had a terrible time with sensitive, eroding skin, leaking reeking appliance, just grim. Mahadevan attributes those problems to poor stoma nursing and perhaps a poor stoma, but my stoma was perfect and the nursing extraordinary, so I"m skeptical. Who's had a bad experience with a loop and then a positive one with an end ileo?

I'm so tired and discouraged, and just want to reclaim my life, but it seems maybe no choice is going to allow that. Anyone with malabsorption and an end ileo? Right now I'm just getting over a bad bout with anemia, and have potassium and vit D deficiencies that do not seem to be resonding to supplementation. Have been warned that because I have so little bowel remaining, I will have high output with an ileo. Sounds tough either way. Anyone with encouragement?

Thanks.

Oh Barb! What a drag. And you've been fighting the fight for so long.... Dang it.

I had a 3-step procedure so I experienced an end, a loop, and a connected j-pouch. The difference between a loop and an end is like night and day. I couldn't function with the loop. Of course, I had doctors (gp AND head) who told me it was all in my mind. It wasn't. I was severely dehydrated while I had the loop. The end wasn't a problem at all although I did experience some reactions to the products. I think that could have been taken care of if I'd had the ileostomy longer and did some experimenting with different things.

I can't answer the question about malabsorption though.

I'm so sorry you're going through this. You might want to email Rae because she's recently gone back to a permanent ileostomy. She's had some challenges with it and maybe she can help you find the best solution for you. She's just found an antiperspirant that really creates a barrier and keeps her skin nice and healthy.

Please let us know how things are going. You know you'll make it through this one since you've made it through all the other ones. I know it's a pisser that you have to go through another procedure, but this one will be the last!!!! I demand it. Take good care of you.

kathy

Dear Barb,

I'm so sorry that you have to make this decision. I, too, have made my decision. I'm having my j-pouch removed July 19th. I'm absolutely miserable these days, but I keep putting my smile on every day. My sphincters and nerves are pretty much gone now (not working properly) and all I do is leak. My skin at the anus is very denuded and there's nothing that I can do to heal it up. The surgeon at the Cleveland Clinic in Weston, FL is just going to have to do his magic and hopefully, he'll be able to remove everything and still have some healthy skin to sew me closed. Thank goodness for my bidet! I think two weeks before surgery I'll switch to a bland diet and try one last time to heal up the skin so he'll have something to work with.

I've tried for 15 years to save my j-pouch and now the day can't come fast enough until my anus is closed up tight and I start to live the rest of my life as a "bag lady" I'm 54.

There are no more options for me and I wouldn't try any of them anyway. I'm finished with all that and ready to live my life again with a new stoma. Wow, I can't wait!

I know this decision is very hard--look how long it took me! You're in my thoughts and prayers always.

Caty

Hi Barbara and Caty,

I'm so sorry that you are both facing this horrible decision in your lives, but I'd just like to say that there IS life after j-pouch removal! I had my j-pouch removed just over 3 years ago after an 8 year (and as many operations) struggle to save it. There is nothing that I can't do with Wee Willie (my perminent end ileo) and can't tell you how glad I am to be free of all those "butt" issues! I'm nearly 51 and my only regret is that I wish I'd made my decision sooner!

If you need any further support or advice then please feel free to PM or email me.

Good luck to both of you with your new plumbing/lives.

Shell

Hi Barbara,
So sorry you're having to face more surgery. I've only had the loop ileo, but it was a swine to deal with and I've read so many posts saying that an end ileo is geneally much easier to deal with. I have a vit. D deficiency too, so I know that just that in itself can make you feel rough. My comiserations! I think with all the problems you're having with the pouch, an end ileo could very well be the start of a much better quality of life for you. I read recently also that end ileos are sometimes put on the left side, and are easier for us right-handers to deal with. Good luck!

Barb,

You know my long story...the short version is, love my ostomy, would do it again in a second. I had trouble with dehydration and not gaining weight with my loop ileo (landed in the hospital 6 times in 7 weeks for fluids between step 1 and 2) but haven't had any of those issues with my end ileo.

It took about 2 months for my skin to adjust to the appliance. But, now I have products that work well for me, as long as I change every 3 days. I know some people try to extend that time, but for me, my skin stays best - perfect really - with every 3 days so why rock the boat.

I'm sorry you are facing this decision, but as Shell said, there IS life after pouch removal and for me it has been so much better!

Barb-
Wishing you the best as you face this adjustment. I'm 32, have an end ileostomy from coplete pouch removal and anal closure, and don't regret it at all! I feel awesome, I'm working, I can live my life how I want, enjoying my 3 kids and wife again, finally.
We live for Virginia for a week and a half this Friday, and I plan on swimming, horseback riding, hiking, spending time in the jacuzzi, etc. I feel better than I have in 4+ years!
So, I hope all goes well for you and you're able to adjust quickly. I'd make the same decision if I had to do it over again, too. (My surgery was this January 2007, and I felt better almost immediately after!)
Take care-
Paul

What wonderful support you all offer! Thanks so much for propping me up at a difficult time. I'd actually welcome the end ileo at this point - just too much time feeling crummy and no focus other than my gut, BUT it appears several things won't change, even with pouch removal. Can any of you address these concerns?

I have Vit D deficiency - lacking the site for absorption, so apparently that will remain with an end ileo. Potassium deficiency is apparently related to being constantly dehydrated: if I have high output, will I still have to deal with regular ER visits for dehydration? What does it MEAN to have high output, other than the inconvenience and potential dehydration? If I have adhesions or strictures now, how does that bode for an ileo? Knowing surgeons, I won't get a thorough airing on these questions at my visit 6/25, so I'd hoped to find more info on these tough questions. Regardless, I'm likely to go ahead with pouch removal because I have so much pain, incontinence, and no time that isn't focused on bodily functions. Both I and my family will so welcome an escape from this prison!

Barbara