I have a permanent ileo. 

It has freed me and my work has changed for the better. 

I have a very physical job. I work on a freight dock. Lifting. Pushing.. Pulling sitting twisting. It's handles all the movement well. In the three years Ive had it I've never had a problem at work.  Leaks. Or anything. 

I can't speak for any other internal pouch  I did have a j pouch. That was worse than the original problem. Had it removed and no problems since. I eat anything and everything.  I'm older. 62. So I am not worried about vanity or anything like that. It's my body and it works well for me. My surgeon would not do a bcir. She said I would most likely have the same problems I had with the j. And not many surgeons or gastro Dr's know much about them for follow up care and I wanted to be done with all this stuff I was going through 

It was more or less my "cure" it works well.

We all try to avoid the dreaded bag. But to me it's no big deal. Now I feel as though it's been a part of me all my life even though I have only had it a short time.  I avoided it too while suffering for over two years with the pouch. But after a few months it was Seco d nature. If it works well. And mine does. Haven't seen a Dr in like two years. That's a good thing after gli g 3-5 times a month for this or that. So glad to be done. 

Richard. 

Before you go too far down the road of thinking your pouch needs to be removed, why not schedule a consultation with your doctor so you can discuss options while you’re not under anesthesia? This sounds like it may just be a stricture, and there are many folks here who’ve have strictures dilated successfully. If you’re going to ask your doctor for the worst case scenario it would probably be useful to ask for the best case scenario, too.

I am in the process of scheduling a second procedure to see if he is able to dilate the pouch more under full anesthesia as he was unable to do more due to me crying and yelling in pain under general anesthesia.  If that still does not work then I am thinking with the continual yeast infections, leaking, burning, and pain that my option is looking like surgery.  I want to gather all the facts I can to have a good picture at what the options are.  Because if surgery and an ileostomy or bcir pouch are a better choice at this point then I want to be ready so can have it done sooner than later.  I am over all the problems and having to take time off work for appointments and because I'm hurting too much and in the bathroom too much.

Richard, with the ileostomy pouch do you deal with skin irritation from the pouch and adhesive?  Had any problems with yeast infection on the skin around the ileo?  That is my concern as I am going from my experience of having a temporary ileostomy and all the issues I had with that one.  I dont care about the looks of having a pouch just the leaking, gas while at work, and the skin irritations.

My thoughts are to first try the dilation.  If that does not improve your situation, you may want to have a consultation with a doctor who specializes in J pouch problems, such as at the Cleveland Clinic.  My only experience with an ileostomy was when I had my first J pouch operation.  It was not a pleasant experience and I was relieved when the ileostomy was gone.  As I understand it, an end ileo is much better to deal with than a temporary one.

When recurrent high grade dysplasia and a malignant polyp in the anal canal made pouch removal necessary, I opted to get a BCIR since I did not want an ileostomy with its associated issues.  I have had a BCIR for almost 6 years and it has provided me with a very good quality of life.  The internal pouch is emptied 3-5 times a day at my convenience with a small plastic catheter. The button-hole size stoma is located below the belt line and covered with a small absorbent dressing.  There is no leakage of gas or stool and there is no skin irritation around the stoma.  Supplies needed cost about $100-$200 per year, considerably less than for an ileostomy.  I am able to do any physical activity I want and to eat the foods I enjoy with few limitations.  The K pouch functions the same as a BCIR, but is constructed a bit differently.  The success rate for these options is about 90% (less than 10% require reverting to an ileostomy) and they have a very high rate of patient satisfaction.

I had strictures as well, they were miserable.  Had dilations done, but they never seemed to "take" for any length of time, but I also had a lot of additional issues with abscesses, fistulas, cuffitis, pouchitis, and more. I was admitted after an EUA to deal with the abscess/fistula because it was septic, and while in the hospital, the decision was made by both the surgeon and me, to disconnect the jpouch, install an end ileostomy, wait for the abscess/fistula to heal, and then remove the pouch.  (Pouch removal is scheduled for Oct. 29.)  

So I've had the ileostomy for about a year now.  There are still probs due to the jpouch being in me - such as drainage, cuffitis, and the unhealed fistulas - but outside of that, it's been pretty great not dealing with the jpouch output.  The ileostomy bag has been OK, but it was an adjustment.  Took some time to work it all out and solve skin issues, but I think I'm there now.  I haven't had a blow-out/leakage once.  KNOCK ON WOOD.  They've come a long way as far as ostomy supplies - there now are a lot of options regarding adhesives and bags, and all the other accessories.  I test-drove various set-ups by sticking them to my stomach area and testing for a reaction.   Also,  there are so many support groups available today on-line and elsewhere, that have been incredibly helpful. 

That all being said, I really wish the pouch had worked out, I tried hard to keep it, but it wasn't meant to be.  There were too many other issues, including a new dx. of Crohn's, to think about anything other than pouch removal/permanent ileo.   The guys give good advice above.  Keep us posted - I wish you the best.

Thank you for all the feedback. I have a lot of thinking to do.  When I read everyone’s comments about a j pouch versus an ileostomy or bcir pouch, it doesn’t sound like going to a pouch not attached to the rectum will be a bad thing. Sounds like it might be better. 

In the last six months I have had an increase in bowel movements to going more than 11 times a day and at least two or three times at night. Sometimes I will go every 40 mins to an hour at night. Getting full nights sleep sounds heavenly. 😄 but I don’t want to rush because I know the surgery and healing time is difficult.

I am hoping to get a clear understanding for those who have had a stricture in the jpouch does it feel like constipation?  I keep telling my husband I don’t think it would be constipation. I don’t think it could be constipation cuz I always thought i wouldn’t have constipation.  I guess I am looking for clarification as to what strictures symptoms are like? 

Hi Cari,

I think it depends on where your stricture is. I had strictures in several different locations, chronic cuffitis, chronic pouchitis, IPS and an abdomen full of adhesions.  It would be pretty hard for me to describe what one problem alone felt like.

I went a long time with strictures at the base of my j-pouch and had to give myself enemas at least 4 times a day in order to go.  I had a bidet at home that helped me with this plus I had an enema kit that I took when I had to be gone overnight - like when I was going to Mayo for appointments.  I say this because you mention constipation.  I didn't have constipation but knew I needed to facilitate getting the contents out. There was pressure and I couldn't go.

I was taking hydrocodone 4 times a day because of the pain I experienced. There could have been a side effect of it firming up my stool and I didn't have that problem.

I had several pouch scopes where the doctor dilated the strictures.  The one further up stayed open when dilated but the one at the base didn't. Maybe you need to talk to your GI about a scope to see what is going on.

I just had a scope a week ago, no one ever mentioned having the j pouch scope and I have had the h pouch for 24 years. He attempted to dilate but was only under general anastesia and I was really crying and yelling so I am having it done again in a month under anastesia so he can attempt to dilate more.  He said there was a lot of scar tissuing.  I have had issues but never all that severe until 6 months ago. So much I am ready to throw in the towel and have a different pouch.  

Cari,

Since you had FAP then pouchitis and cuffitis aren't likely. Your problem must be a stricture or scarring.  If you are going under I am assuming you are seeing a surgeon.  Hopefully you will find out something that is fixable.  

Since you are having pain can they move your scope up? Do you have anything for pain relief?  Tylenol or ibuprofen hopefully will help.  Sorry you are going through all of this.

Thank you appreciate your thoughts. Most of pain is external and every few days is it internal. Yes seeing my surgeon so hopefully will get some relief. A lot of the issues I always just thought went with having a pouch so never looked into but these issues within the last 6 months are too much to put up with.

I have no real advice to offer regarding pouch removal, but I have had both end and loop type ileos (I had an end/permanent-type ileo initially when I had an emergency subtotal colectomy and still had my rectum, just that the rectum was unattached. I had the loop when I went through the first stage of j-pouch construction - in total I had the end for a little over 2 years, and the loop about 7 months).  The end ileo was MUCH easier to manage, had firmer stool, a smaller stoma and far fewer leaks.  The loop output was basically liquid all the time no matter what I ate/did and unfortunately I had a number of leaks at night. I also had far more issues with skin irritation with the loop than the end, and I went through more ostomy supplies with the loop because of leakage.   If you end up needing an ileostomy and have a choice, I would highly recommend the end ileo over the loop as you quality of life will likely be better.

Best of luck to you, in whatever you decide to do.

Cari posted:

I am 43, and have had a j pouch for over 24 years now due to FAP.  Everything had been going along mostly ok until about 6 months ago.  I began to have major issues of burning with BM's and when not having BM's, and it was really bad.  Found out it was a yeast infection due to frequent BM's and am now dealing with another.  It is awful, so much that I contacted my surgeon from 24 years ago and went for a consultation to see what is going on.  Without too much detail, he suggested doing a scope of the jpouch which as far as i'm concerned my regular specialist has never done.  He stated there is a lot of scar tissue in the j pouch.  Thru talking to him it appears some of the other symptoms I am having could be from the stricture(scar tissue).  I asked him worst case scenario, am I looking at the possibility of having to have surgery.  He stated yes(mind you i was under anestesia) but i did not ask many other questions I guess I needed to process.  He stated he can attempt to go in under full anastesia and attempt to stretch the area a little more to see if that might help.  Soooo.......my question on here is about whether or not to have the j pouch removed and switch to a permanent ileostomy or bcir.  The idea of surgery is not what I want however the pain and burning and difficulty going to the bathroom and the frequent BM's has taken me well over my threshold of pain.  I have been doing some research into both a permanent ileostomy and a bcir pouch.  I remember how bad it was to have a temporary ileostomy, however I was told by someone and by my doctor they are not really comparible to each other as it is much different to have a permanent ileo.  But, I am not certain I will be able to find any one close to me that will do the bcir pouch and if it is the route I really want to go.  The idea of a pouch on my stomach is bothersome but then is an internal pouch gonna work and will I be able to do the catheder.  How is having a permanent pouch either internal or external going to effect my ability to work.  I am already having a difficult time with my current employer as it is as I had to apply for family medical leave to cover me for my frequency of using the bathroom.  I am really overwhelmed by the idea of surgery and a different type of pouch.  Any advice???

And if I switch to a ileo or bcir what will my diet be like.  Within the past 6 months it does not seem like it matters what I eat, I have issues with going to the bathroom and exteme burning and pain with or without a bm.  Any help would be helpful.

I had my ostomy for three years before I decided to have j-pouch surgery. Things went well at first, but lately I have been having issues with urgency, pain, straining, and burning. I had my takedown in January of this year but I am already considering going back to an ostomy. At least with my ostomy, my quality of life was much better. Having the j-pouch at times feels like I am suffering from ulcerative colitis issues again with the pain and urgency. I have a scope on Monday but more than likely I will go back to a permanent ostomy. I can's sleep because I have numerous accidents and I don't eat late and I am scared to take naps because I am afraid I will have an accident, which I have had several times now. This is not how I intended to live my life.

I sympathize with you. It's a tough decision to make. I thought that the BCIR was ineffective with Crohn's if you have the jpouch but I would check on that. Let me know what you decide as I'm very close to going to the end ileo and I agree this is no way to live a life.

I’ve had 2 surgeries for stricture, adhesions, scarring and in the end they have been 100% worth saving my j-pouch to me! I’m currently back in an end ileostomy and have been for 6mos since the last surgery for stricture,etc.... I’m so ready for a takedown! It has been worth it to me after each surgery because the issues and symptoms your describing subside. I’m truky impressed you’ve made it 24yrs without having to have any additional surgeries!  For me stricture has always felt like labor pains. That’s the best way I can describe it. Almost like when you first are diagnosed and have the awful pains of severe UC or Crohns. I usually have had some nausea, chills, fevers even when the stricture really causes a problem because something hasn’t been chewed well enough to go through the stricture. But, personally, I’d try the “cleanup” surgery before really getting rid of your pouch permanently. There is also always the option of going into an end ileostomy temporarily to see if it helps before removing your pouch. Good luck on your appts and keep us posted.

Cari,

I am 44. I had a bag for 13 years and it worked near perfect. I decided to get a J Pouch as I have young kids and wanted to go to the beach etc and not embarrass them and myself. I wanted to feel human again.

I have had a rough 4 years with the J Pouch, on/off antibiotics/steroids , now humira, nothing is working, site soreness, pouchitis, Fissures , new diagnosis with Crohns , it has been a nightmare for me. 

But , I am so glad I tried J Pouch surgery , and would do it again, as you never know.

Now I need my quality of life back as I am sick of the drugs/side effects and constant pain.

I, too, am thinking of going back to the bag.

I am losing the battle with the pouch, but if the worst thing is "the dreaded bag" then so be it. 

Eat, Drink and Do what I want anytime.

Yeah, that’s a tough decision to have to make but if it gives you back the quality of life then it is worth it. I’m sorry you are going through so much it’s rough.  I had a temp ileostomy when I was 19 for like 6 months and it was fine accept the issues that come with a temporary bag. That is where a lot of anxiety is coming into play is I’m basing it from my experience of a temp loop ileostomy.  I just went back to the doc today he bumped up my procedure for a dilation of the pouch to next week. But his honest opinion, he doesn’t think it’s going to help me at this point. Plus I have dysplasia so he thinks overall it might be the best decision to just remove the j pouch. So I am mentally preparing for surgery at this point. Crazy thing it was 24 years ago next month I had my surgery.

After rereading my text I sounded very self centered and negative.

My 2 cents for you - The End Ileo gave me zero issues for 13 years, the loop ileo was difficult.

I did not love it but I ate,drank and excercised without issue and life was good.

best of luck to you

I didn’t think so. I understood what you were saying.  

adding my 2 cents: the k pouch has been fantastic and i hope it lasts me to my end.  i dragged out the decision to eliminate the j for entirely too long as hadn't liked the ileo, which i had for a year.  j