Going back to stoma and bags. Too early?

I had emergeny surgery recently due to my pouch gone bad and am having a very hard time with the Ileo. IDK maybe cause my inflamed pouch is still there? The thought of another surgery to take it out is making me sick to my stomach. 

So sorry to read about your situation. The challenges and questions seem to never end. I, too, am considering going back to a bag and wonder what the pros and cons of keeping the pouch in (or taking it out) are. Hopefully, someone(s) can address this.

To be honest you will have a life make sure that they give you a good stoma ask for it , My husbands pouch is still in tact it just has to be checked yearly, it would be way to big of an op to take out we were told, Honestly the change in his life since not having the puch is almost normal, he eats anything now, he makes sure he chews everything , even nuts,Speak up don't put up with what you don't have to.

read my view further down, get rid of the pouch get a life back, one that you can share with your wife ,a pouch is not a life if it is not working properly, you will be able to eat anything do anything, you have all your life a head of you, to be happy and healthy. there are good stomas, once your head space is right in accepting the stoma, you will be so much happier.

Yikes! I was unclear in my last post, so let me rephrase my question: For those who did go from J-pouch back to bag, did you leave pouch in or have it removed when you had surgery? What are the pros and cons? And thanks to all who have posted thus far. It has been very helpful to me.

My pouch is out.  I begged to be just diverted and leave the pouch, but my surgeon was not willing.  He knew that my pouch/cuff (and a 4 cm mass next to the pouch) were a hornet's nest in my pelvis...it all had to come out.  Also my GI always mentioned a cancer threat since I had chronic inflammation in the cuff (and fistulas).  I didn't have cancer.  I had no option of reconnect, therefore the pouch was to be taken out.  Yes, it's a very difficult surgery, so go with the best surgeon possible if you must have it out.  Again, without the pouch and cuff, my fistula holes and gnarly perianal skin completely healed!  No pain or soreness!  Amazing grace!

My surgeon also said that with pouch excision, 60% heal well.  What?!  I didn't even want to know what that meant, but I would guess it's because some need follow up surgery or something.  Thankfully, my fistulas all healed without the pouch in there, so I didn't need additional surgery for that to heal.  It's a major decision to have the pouch back out.

I will also add that I HATED my temporary ileostomy.  I NEVER wanted to return to that horrible bag.  I think I remained very vain or very hopeful that I would never need it again  And yet at 34 years old and for the rest of my life, I have one.  And you know what?  God gave me an incredible new attitude about it all- finally, peace that this will be ok.  It's just fine!  I look and feel amazing.  My husband still loves me...and maybe a little more because I'm never sick anymore!  This site and especially Jill, Marcene, Liz and others with successful perm. ileostomies have been such an inspiration to me and helped give me hope.  I did love my pouch and was sad to say good bye.  It was a very difficult decision for me, but I tried everything I could before pouch excision.   I have no regrets.

Laura 

Why does everyone say the pouch removal is so difficult as opposed to leaving it there when going back to the ileostomy??  Judy K

It's most certainly not quitting. I had my reversal four months after my takedown. That was over 2 years ago and I've never looked back. I haven't taken any medication either since then and I've completely rebuilt my body and my life. 6 months ago I gave birth to a baby boy. I would never have been able to do that unless I'd had the reversal. If your life is miserable you shouldn't have to suffer. 

Judy, there are a few reasons pouch excision can be particularly difficult (though it isn't always). The pouch can become quite thoroughly attached to the surrounding tissues, making it hard to separate it cleanly without doing damage. The "barbie butt" closure is quite uncomfortable for some, a difficult recovery. Pouch failure is sometimes from what turns out to be Crohn's Disease, and CD sometimes can behave badly when given any excuse.

Scott (and others) - If I may: How likely is it to have problems with a left-in, non-working pouch? Is cancer of the old pouch a specific concern? Many thanks.

Your surgeon might be the best person to ask about pouches left in place. In any case, make sure you and he are using the same definition of "problems." Would occasional leakage frome the anus be considered a "problem?" How about daily leakage?

I don't have an opinion here, I just want to make sure you get an answer to the question you think you are asking.

I think I can address some of your question. Whether leaving the pouch intact will be a source of problems is highly individual. Much of it can depend on the reason you are being diverted. If you have chronic pouchitis, cuffitis, Crohn's of the pouch, etc., diversion may or may not improve your situation. You can only know by trying it. You definitely will still have to empty it occasionally, even if you have an end ileostomy. I doubt that is considered a problem unless you have problems with weak sphincters.

Regarding issues of future dysplasia or cancer, the answer is that if you need surveillance now, you still will if diverted. But, it would not increase your risk. 

But, yeah, your surgeon is the one who can answer specific to your specific situation. Each case is different.

Jan

Yes, whatever is still left of your rectum. But you would not be emptying an endless fecal stream, just mucous and cast off cells. It is similar to what happens with a divertting ileostomy, but without any fecal stream. However, you can get diversion pouchitis from the lack of fecal stream. Damned if you do...

Jan

My rectum was removed when I had my colon removed so if I go to an ileostomy and want to leave the pouch alone what is there to "empty"??  Judy K

The pouch itself and the rectal cuff and any attached small bowel will continue to shed mucous and cells. Sort of like the mucous membrane in your mouth. You may not need to empty often, like every few days, but you will. There will be more cast off if there is continued inflammation, much more.

Jan

This was my original post. The diversion pouchitis is starting to cause me issues besides the mucous I'm getting ergency and slight pain/ pressure, and fatigue.  Honestly, I can't even deal with pouch removal. It sounds so awful

Yes very interesting as our surgeon said leave it there, and have it checked yearly

My husband has not had any trouble with the pouch left in, , his surgeon said that the risk of cancer was very very rare ,he only had the jpouch for 8months it was 8months of shear hell. Now it is no drugs ,he has not got any pain as i have said we now have a life together.

The pouch itself is at almost no risk for cancer. The rectal cuff can develop dysplasia or cancer. This is a genuinely low risk for most, but cuff cancers have been seen in the world. Folks with elevated risk (e.g. FAP or prior dysplasia) might be happier on average having it removed so thet can forget about it. For other folks it's really a matter of preference, I think, and the cancer risk barely registers.

Thankyou for explaining all that it is very much appreciated.

I still don't understand emptying it once you go back to an ileostomy. How do you empty it and what does that feel and look like?  Judy K

I am having a drainage and that is different than needing to empty it.  I did have a scary blow out of fecal matter and fresh blood last week. I was told it was ok by one of my surgeon's staff and to let her know if something like that happened again. Since then it has only been mucus like as Jan described above. I thought that far out from my 8/31 surgery meant something was wrong so  I'm all for notifying our surgeons if more than a normal mucus like discharge happens. 

My husband has very little come out of the pouch, not all the time.

Lots of luck Richard be positive, you will get your life back it will be amazing.

I will keep you in my thoughts and prayers, take care. Judy K

Good luck with your removal. You sound like you are mentally in a good place and I think that is what will get you through. I'm not in that place and having a hard time accepting the bag And whatever else will happen. 

Richard,  I hope all goes well and admire your bravery!  I had a difficult time, as usual, after the surgery to divert to a permanent ileo.  I don't plan on having it excised if I can help it. Good Luck! 

my husband has very little discharge out of the jpouch, nothing to worry about, you may have more to start with,

Lori,

It just comes out when I'm urinating.  Not every time or every day either.  It is nothing that makes me wish I'd had it taken out.  I think I mentioned above that I've only had one large discharge.  

Good luck! 

Thanks for asking Hockadoc.  I'm finally getting 2 days in-between changing the wafer and my skin is doing a lot better.  I still get stinging if I need to change the wafer, which means my skin is reacting to the acid like output!  My skin was really nasty before I started going to the stoma NP.  

I had an abdomen full of adhesions. My surgeon spent hours lysing them.  I can feel some knots coming back so am going for A.C.T. treatments. I was undergoing these treatments before this last surgery and they were helping.  I am still experiencing pain.  I think part of it is because I still have the UTI I picked up in the hospital.  

I oversell myself on medications and surgeries - thinking that I will finally be feeling better.  That just sets me up for a let down when they don't "cure" me.  I'm not as optimistic as I use to be.  The best thing that helped was trying a lot of different brands and types of wafers/appliances. I contacted around 5 different companies for samples.  We all have different anatomies.  It's like trying on clothes to see what fits best.