Is it safe to say that if you hate: medications, hospitals, tests, surgeries, diet restrictions, pain --- then you should stay with an ileostomy and NOT get a j-pouch?

Kind of a dumb question, but I feel like getting a j-pouch instead of staying with an ileostomy is like playing Russian Roulette. This is the first time in years I finally feel good!

I know there is the "what if" aspect, but I don't know if I'm THAT curious

Love,

You have voiced my EXACT sentiments after my Step 1. I really was reluctant to proceed with the takedown for all the same reasons you mentioned. My son strongly suggested I go ahead and give the J-pouch a chance. He told me that if I didn't like it, I could always go "back" to an ileostomy. That was six years ago. I can't begin to tell you how happy I've been with my J-pouch!!!! The ileostomy was wonderful. The J-pouch I have is even better! My suggestion: Go for it!

Agreed. If you get a perm. ileo, I don't think you can go to a jpouch. But if the pouch doesn't work, you can always go to a perm. ileo. Keep in mind you're hearing more negative than good because this is a site where people seek assistance for problems.

Hi Jenivi,

I don't think its a dumb question at all. I hate all those things you mention too.

Russian Roulette you have a 1 in 6 chance of shooting yourself in the head - dead. I think the odds of a J-pouch going wrong are or not that bad. Going for a J-pouch is reversible if you experience an extreme deterioration in the quality of your life.

I have read loads of successful j-poucher stories of people who are on no medication, no butt burn, can eat whatever they want and go 3 times a day! and they need to bulk up with Psyllium or something else. Okay Pouchitis sounds like it is inevitable at some point but that can be controlled with anti and pro-biotics.

Surgeons and support forums generally focus on all the potential problems. 'this/that terrible thing could happen', but what about the numerous potential benefits over a stoma?

I want to try being continent over controlled incontinence. My stoma was sited really badly as a teenager and got progressively worse as I grew. I had leaks frequently which I found degrading and completely inconvenient.

If you've been unwell for a long time before you had your ileostomy and you only had surgery recently I can completely understand your reservations. It took me 10 years to even think about pursuing further surgery. The clincher was that my rectal stump would have to go at some point so some kind of surgery was inevitable.

Enjoy being well and know that you may still have options.

There is no rush.

Dan

totally felt the same way after about a month and half of having my ileostomy and getting the hang of it all...it was the healthiest i had felt in years...so why risk another surgery...but i knew there would be much more benefits with the jpouch...so i went ahead with the scheduled takedown 3 months after the 1st surgery and things have been great...like people say this site can be a little decieving sometimes because its mostly filled with people with questions about problems they may be having and its a great place for answers...but for some one like me who has not had any problems since my surgery, a year ago, im thankful everyday I had both surgeries down...i had a great surgeon and can't believe how she was able to change my life. But yeah ask all the questions and find out as much as you can it is a big decision but definetly worth it.

I had the temporary ileostomy for 3 months and I thought I would commit suicide if I had to have it any longer. I have had the J Pouch for 16 years and have had a very good life with it. I know in the back of my head there is always the chance I could end up with an ileostomy again, but I try not to think about it because it's generally a good idea to keep suicidal thoughts out of one's head. But I want no part of an ileostomy. I hated it, I found it disgusting, and it was unnatural to me. And this is apart from all of the leakages, blockages, the yeast infections and the oozing skin.

I will do anything in my power to keep the J Pouch and avoid an ileostomy at all costs. No offense folks but it is absolutely unbelievable to me that some posters here would even consider keeping an ileostomy if they have a surgical J Pouch option available to them. Sorry if my brutal honesty offends you.

This message has been edited. Last edited by: DJBHusky,

I believe you should pick the surgery that best suits you. Make a list of pros and cons on each choice. None of our choices are perfect but there is a best choice for you. Many choose to go for a permanent ileostomy and I respect that decision because it's what the patient felt was in their best interest. Talk to people who have had each type of surgery, meet them face to face if you can. Most cities have monthly ostomy meetings where you can meet ostomates. Do your homework so you can be prepared to accept the recovery and lifestyle post surgery.

Sue

If you are happy with the way things are now there is no reason you have to decide one way or another right away. You can keep your loop or end illeo for as long as you want until you are ready to have the j surgery. I know one person here (argh forget her name!) was so happy with her illeo she kept it for two years before having her J surgery. It's not a situation where you have to do it in three months or never. Wait until you are ready and then decide.

All I can say is that I'm almost six months out from take-down and have had none of those things you listed (meds, surgery, pain, etc). Obviously, everyone is different and I had no major problems with my loop ileostomy, but (so far) I much prefer my J pouch. Hope this helps!
Jeff

I always thought that the absolute worst thing that could happen to a person was to be stuck with an ostomy. But after having one it absolutely was NOT the worst thing. Not even close. I think a huge part of dealing with an ostomy - or anything for that matter - is acceptance. If you're doing fine with the ostomy and you think you'd continue doing fine, then that may be the way to go for you.

I know you've been reading on this site so you know that some of our finest members are permanent ostomates. I now understand that it really doesn't matter where one poops from. If you think about it, what's the difference between evacuating out da butt, out da stoma, or out da tube (k-pouch)? We need to get over that. We're too hung up on the poop issues. (I guess I'm saying that it is a little harsh to denigrate people who chose to go with an ostomy even if they are candidates for a j-pouch. Nothing is perfect - including a fully correctly functioning colon.

If you're feeling fine now, don't pressure yourself to make a decision. There have been people on this site who've had their ostomy for years and years before deciding to try a j-pouch. So you have much time to ponder....

kathy

I think you'd be making a terrible rationalization of what your seeing on this support board.

I have NEVER had to have ANY medication due to my J Pouch since Takedown. EVER.

I take medications (natural) due to FAP, but, that has nothing to do with this surgery, a J pouch or whatever.

There is nothing wrong with an Ostomy or having a J Pouch, but, because you see people here who have problems with their J Pouch, I don't think I'd toss in the towel on a Pouch. I'm sure if you look hard enough, there are plenty of people who have issues with their ostomies.

Jenivi,
I had UC and went for the J-pouch. Due to more complications than my body could handle, I lost my pouch after 11 months. I could have gone with a perm. ileo to begin with, but I would have regretted it. Even though my experience wasn't the best, I'm glad I tried. I'd hate to have the "what if's" hanging over my head. We all have unique experiences, and that's what is so great about this board. You have to make the right choice for you, and we are all here for you, whatever choice that may be.