J Pouch vs. Permanent Ileostomy: Seeking Advice

Ok, I have a question. Just got home from the doctor's, trying to set up the final surgery after ileostomy. The pouch, more specifically the pouch-anal anastomosis, sounds wonderful (well, if this type of surgery can be considered wonderful). Who wouldn't want to do away with the bag? But, all along I was thinking to wipe the slate clean, so to speak. After talking to the doctor, the J pouch sounds like a great alternative. I need some clear thoughts and advice. Please. Do I go with the J pouch with all the pluses (and of course negatives), or do I have the behind cleaned out, wiped clean? Thanks for your thoughts. YaYa

Hello,
No advice from here. I never even heard of a "j-pouch"  Is there some reason they cannot do a reversal?  Seems to me that would be the only way to go.  I must admit, although I have had both procedures, I don't really know enough about the malady to intelligently discuss it.  Sorry
Jacksprat

Thanks, Jacksprat... Guess more research will have to be done by me...

Hi ya ya, I can't get a J-pouch because of Crohn's; we are not good candidates. I work with a guy who has one and nearly shits himself a lot, but me being me, go ahead. I tried to get one but can't, so kid, if it doesn't work out, back to ileo, do do do it. Lots of probs I hear, give it a go at least I can say I tried, so YAYA YAYAYAYAYAY yes, I would have had it done in a flash hehehe
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but in the end, up to you, you might think twice, I know lots can be awful but see, oh was getting excited, I thought I was getting one heheheheh YEP YEP DO IT GET EXCITED YES YES XXXXXXXXXXXXXXXXXXX
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MARE MOOZA

Hi Yaya,
I think a lot of your answer will hinge upon what your troubles were in the first place. I also have Crohn's and so am not a candidate for a j-pouch. My Sis-in-Law, however, had UC and so was... and got one. And she happened to be in the 0.5% of people who get inflammation in the pouch... pouchitis. (The pouch being made of small intestine tissue is supposed to remain disease-free... key word being supposed...)

For many, the pouch is a wonderful thing. Obviously not as good as 6 feet of healthy colon, but good. But everyone is different. How well do you trust your surgeon? That would be my advice.

Good luck...

Katman

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

I had a J pouch for over two decades and there were lots of problems (used the toilet a lot!, very limited diet, pouchitis) but it gave me two decades more of sex life which pretty much evaporated after Crohn's and a permanent ileostomy. There are no guarantees with this procedure. I was lucky to make it to 50 without a bag; I say lucky because at least now I am mature enough to cope with the ostomy. At 29, probably not so much. The J pouch, once it settled down (the pouchitis went away and I tamed my diet into nearly-bland), I was able to work, travel, and have a pretty good life.

It is a hard choice, but I would go with the pouch. If it does not work, it can be removed and you can go to the ostomy. It's life philosophy, finally. If you expect the worst, then anything good is a happy surprise!

Good luck and keep us posted.

Froh

My doctor is thinking seriously about doing the ileo reversal. Needless to say, I'm half scared to death to go back into the hospital again for more surgery.

He did send me to the hospital to have a gastrografin enema done. Oh...I might add...that hurt a lot...
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This time, my butt got used again for more tests. One of these days, I'm gonna fool them and be healthy...I hope...
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The doc wants to see just how much of my colon was removed so that he can evaluate the situation. Then there is the OMG again. The main reason for this was because he wasn't the same surgeon that did the first OMG!! After checking the x-rays the previous doc did and what he removed. Hell, I could have told him it was all gone...lol

Ok...so if I decide to do this surgery, it would be about a week in the hospital. And, I might add, that GREAT HOSPITAL FOOD!! Every time I have to go into the hospital, I always put a small container of sugar and my travel salt and pepper. I'll fix them.
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Mystified

Hi Mooza... No disrespect intended, and I thank you for answering my question. I just can't understand what you are saying. I think you said to go ahead and try the takedown, and if it doesn't work, I can always go back to the bag, i.e., appliance... correct? Thanks, Yaya.

Thank you, Katman. I so appreciate your response. I am doing well with my ileal bag. Getting used to it and really not minding it. Yet, there is a part of me that thinks, "What the heck... what do I have to lose?" (to do the takedown). I have already lost my colon, and there is an alternative if it doesn't work. I am going to go for the gusto, not look back, and take it a day at a time.
Thanks again... YAYA

UC, emergency surgery, ileo in October 2010

Hi Mystified...I'm in the same boat you are in...scared. My feeling is... we can't look back and we need to forge ahead...if the takedown works, whoopee. If not, you'll be back on the bag. You can handle it and so will I. Let me know how things work out...hugs...yaya

Yaya, go to the forum and look for the topic REVERSAL STORIES PLEASE POST GOOD AND BAD. You will see many stories. For now, I will refrain from my opinions. Please go read. Love, Michael

... and I need to make the same decision too ......
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HIYAYA... thought I would throw a few thoughts in here... I'm 2 weeks from finishing my ileostomy journey that started in July of 2009... after much thought and discussion, I decided against the j-pouch. There is a lot to consider. Here are some things to consider.



1. The success of your surgery will depend much on the expertise of your surgeon, get one that specializes in this area, not a general surgeon.
2. Do you want control over your day-to-day activities, or are you going to be dependent on being close to the flush.
3. Do you want to work uninterrupted by the numerous possible inconveniences that can come along with a j-pouch... or does it matter? I want 5 years of uninterrupted work before I retire, a big factor in my decision.
4. Do you live a really active life... or moderate... if you are really busy... how much control over going to the bathroom do you want?
5. Reality check... a j-pouch will require you to watch your diet closely, you will likely go to the washroom 9 to 12 times per day.
6. If it fails... and you use a portion of the small intestine for the j-pouch... where does the surgeon expect the new stoma to be located? With me, it would have been above my belt line... it is now below and very convenient.
7. I wanted to minimize future surgeries and adhesions.
8. WHAT'S THE RUSH... if you are uncertain... give yourself a year on the bag...

Last... while the j-pouch, if it works well, is wonderful, but it is generally speaking a cosmetic option, the 'bag is a drag' but as so many have said in here... it gave me my life back... and comes with relatively few internal risks... search out people who have had ileostomies reversed, understand their experience in relation to their and your lifestyle... talk with a lot of health professionals besides your surgeon... get a good cross-section of opinion... and above all make it YOUR DECISION... !!! Best of luck, Scotiaman

Hi Scotiaman

Thanks for this post - these are some of the questions I have been asking myself too - and I have to say I am leaning towards keeping a stoma. I think there are too many unknowns for me to contemplate reversal, and I have enough trouble with life as it is, without adding more crap to it! However, as I haven't yet met my "men in suits" in London, I'm not sure what they will have to say about it all... but I reckon I will take some persuading to go the other way.

Rach x

Bravo scotiaman ~ excellent post, and from a fellow Bluenoser at that: Dartmouth, Dalhousie, Point Pleasant Park, Public Gardens, Brightwood Golf Course, Waverley Road, Mahone Bay, Citadel Hill, Scotia Square . . .

Great post, Scotiaman. To Yaya and Mystified: also, please do read the post BeyondPar mentioned. When it gets to this point, there is no such thing as too much information, from another Bluenoser, Ed
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G'day Yaya,

My J-pouch has been online now for just over 18 months.

On a good day - of which there are more and more as the pouch gets better at its job - I make 4 or 5 quick pitstops through the day and one at night. I've had 100% continence from day one - my only real issue is some leakage at night. It was pretty demoralizing for the first 12 months, but as the pouch has slowly gotten more used to its new role, things are almost under control. Even when I abuse it by staying out a lot longer and drinking a lot more than I really should.

I'm careful with what I eat - and how close to bedtime I eat - but as an active, sweaty person who likes to take off my shirt at the beach, going with the J-Pouch has so far been one million percent the right decision.

I'm in a little support group here in Aus with about 6 people. Five of us are going very well, with only one having major issues. The one who has issues - I question whether they ever really had the right attitude to the pouch in the first place. In our discussions, it's become clear that they didn't make any effort to give their pouch a chance to work. So much of whether surgery like this works is, of course, about your surgeon but also how you look after yourself.

Anyway, a vote for the J-Pouch from me, but with the disclaimer that it takes a bit of work for the first year or two. Don't hesitate to message me!


Cheers,

Tim.

Scotiaman -

I'm a couple of months away from making the decision.  You really laid out things to think about.  Thank you.

Lalu

This is Zack; 30+ years ileo. Check out "Barnett Continent Ileostomy" before final surgery to get rid of the plastic bag. The Barnett is supposedly a newer internal pouch using one's own small bowel with an improved "valve". Wish I had had that done back when my then insurance approved paying for it in full. They have a website somewhere.

Good luck, plastic or no.