Hello Almac,

Most people deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  This is my story.  In 2007 after 15 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, was given a Barbie Doll butt (closing the anus), and now have a permanent ileostomy. 

If a person is working with an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm almost 67 now and life couldn't be better.  My husband and I are finally able to travel and have lots of fun.  Our lives are no longer on hold.  My ileostomy turns 12 years old on July 19th.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.

Good luck! It sucks to be there, I worry about getting to the same point. An ostomy bag was better than the UC condition I was in but I wouldn't want to go back to it.

Best of luck!

@Almac posted:

My GI doctor and surgeon have now conferenced and decided that my pouch is failing. They call it dyssynergy. A MRI showed I have no muscle activity operating down there. It’s all just what pushes from my stomach and moves through on it it’s own to evacuate. Before all the tests, the surgeon originally pushed for pelvic floor therapy. But the GI doctor doesn’t feel confident about it. And the surgeon has agreed.  So my options are 

1. Have the pouch removed and go to an ostomy and bag. 
2. Travel to the Cleveland clinic and try for a pouch redo. 
3. Just put up with it for as long as I can stand provided I can get back to any semblance of a normal diet or lifestyle  

I‘ll be 60 next year. I’ve had a hard battle with this pouch now for 30 years. Especially these last 10. Pouchitis. Sepsis. Major pain from antibiotics and gas. At last count 5 blockages and 17 hospital stays in 30 years. I’m tired and still at this moment on a nearly liquid low fiber diet for 7 weeks. I’m single handed keeping the protein shake business afloat. My anxiety is thru the roof and insomnia is killing me. Not to mention what this is doing to my wife. 

And yet, I still can’t make myself make the call to schedule the removal surgery.  No one can make the decision for me.  Advice appreciated but I think I just wanted to vent to some sympathetic souls.  

 

Your last paragraph says it all. 

But what you mentioned above it says alot too. 

Only you can make the decision for removal. 

I had to do the same thing. It took me two years to do it. Make the decision. But I had some of the same issues you had.  And other people to consider dragging them into the mess I was going through. I was 59 when I had my removal. I'll be 64 next month. I made the right decision. Although a very hard decision it ended all. And I do mean all my suffering. I don't regret it to this day.

Now having an ileo is not for everyone. And it's not where I ever thought I would be. But it works and works well. 

I have no issues with it. Not everyone has this well an outcome but I'm in a place I never thought I would be. And it's a good place. 

I sleep well. I am in no pain. Take no drugs. I'm done. I consider it "my" cure. I haven't seen a Dr regarding my ileo in years. That in itself was worth it. Dr appointments. They seemed neverending. I change twice a week. 

Good luck with your decision. It's not so bad on this side. Believe me. I didn't want it either. But it was the best decision I made. 

Richard. 

Caty,

What is a Barbie Butt? 

Your journey with a J pouch is very similar to mine. After 30 years, my J pouch had to be removed due to recurrent high grade dysplasia and a malignant polyp in the anal canal.  I also had weakened sphincter muscles. I opted to get a BCIR, a procedure that does not require having an external bag.  For this procedure (which is very similar to a Kock pouch), the surgeon creates an internal pouch out of a short section of your small intestine and a valve that holds everything inside until you empty it with a plastic catheter at your convenience 3-5 times a day.  The button hole size stoma is located lower on the abdominal wall than that of a conventional ileostomy, is flush with the skin and is covered with a small absorbent dressing.  There is no leakage of gas or stool.  This procedure has enabled me to have a very good quality of life and eliminated the leakage and skin irritation problems I had with my J pouch.

The two earlier posters have explained how a conventional ileostomy has worked out well for them, and it is not my intent to show that a BCIR or a Kock pouch would work out better for you.  It is just another option that is available to you at this time.  I wrote an article in UOAA’s magazine, The Phoenix, entitled “Researching My Options”.  This article was reprinted on the Quality Life Association’s website (www.qla-ostomy.org) under the Ostomy Options and Education tab.  For me, it was assuring to know that there were options available, especially since I strongly did not want to have an external bag.  Please feel free to send me a PM with any questions that you have.

Bill

I understand your pain and am sorry for your lost pouch. I also understand the emotional results of the long term poor diet and limited lifestyle — it too adds a layer of despair to everything. Please try to find a way to give yourself a break however you can and force yourself to count your blessings. And God bless your wife! Know that, if she’s anything like me (as a wife and mother), she does what she does out of love and appreciates your appreciation!

As for your condition, I have not been given the same diagnosis, but I have been through pouch revision, belly/hernia “revision”, and later j-pouch removal. I also lost count of the ER stays for blockages before a stint in the ICU necessitated further surgery. And like you, I still found it difficult to make the hard choices regarding yet another “elective” surgery.

My experience and extensive medical research makes me suggest you consider doing something a.s.a.p. as options and outcomes can get worse the sicker you get. Give yourself a time period and/or a task list then just take your best shot — you only have this one life to live and I’m thinking it sounds like you’re not really living right now. Like I said, I’ve been there. And I’m only writing this suggestion because it’s what I had to tell myself :-)

I gave myself three months, a couple of specific medical test results to consider and one second opinion to decide. I ended up with a k-pouch (a continent ileostomy, like the BCIR.) It’s not perfect (lol) but it’s definitely given me some of my life & health back! (But TBH, a standard INcontinent ileostomy would have been better than my j-pouch... something had to be done.)

I had it done at Cleveland Clinic by Dr. David Dietz after consultation with the great Dr. Bo Shen (also lovingly referred to on this site as J-Pouch Jesus :-) Dr. Shen has since moved to NY and Dr. Dietz is still in Cleveland but has moved to  University Hospital. As I understand the history, Dr. Dietz worked along side Dr. Remzi, who was instrumental in establishing the Clinic as a center of excellence for colorectal surgeries. Dr. Deitz is mentioned with some frequency on this site and is highly recommended! Regarding your other question: When they do permanent pouch removal surgery, most people also get what is colloquially called a “Barbie butt”  —  defined as removal of any remaining rectum and closure of the anal opening. Makes sense, ha!

My sincerest wish for better health and helpful, positive guidance,

Jennifer

Did the doctors give you any feedback on what is causing the dyssynergy?  As I understand it, this term generically refers to any disruption in muscular coordination.  From what you have described this would be indicative of a disruption in peristalsis in this case.  It seems like a pouch redo is only a feasible option if the dyssynergy can be addressed.  If the dyssynergy cannot be addressed or treated with the redo, it would seem like you really only have one option.

I also saw Dr. Dietz and really liked him, just not the idea of having K-pouch. From my understanding you use way more bowel this way and was very concerned with that. I already don't have a lg. intestine and not a complete sm. intestine either. 

Never in a million years that i thought I would have pouch failure. I did go and see Dr. Remzi in NYC. Very nice and helpful. he told me my pouch was a mechanical problem and it had twisted and was very elongated. I was in shock to say the least, but was great to finally figure out what was wrong with the pouch

Currently, I am (trying to wait) for the Pandemic to get under control. Although I'm not 100% sure what to do just thinking about another surgery gives me the chills, I'm not sure if my body can handle 2 more to get another pouch made but then again, i can't imagine the rest of my life with this  external pouch either! That's my problem! Also still have not been given a firm diagnosis is it colitis or the big C! Dr . Dietz told me not to worry if it is C , he explained that there are many people who have the disease and are treated with biologics and for me didn't do much.

Well if anyone has any advice I would certainly appreciate it. 

LJK

I just want to let you know I am currently in the exact_same_ boat! I too have this pouch causing mysterious problems after 20 years. It worked fine for 18, literally problem free. Then, the  past 2 years I’ve been hospitalized over 20 times with every test under the sun for mysterious bowel obstructions that don’t show up like obstructions on ct scans but present like them in every other way. The final decision just last month (after a really bad admission, 2 week admission) was that they think it is functional (like yours?) and not really fixable. It’s like my pouch is failed and the bowel connecting to it doesn’t move properly anymore, so it is like having a permanent ileus. I’m in Canada and I don’t think pouch re-dos are common here like at the big American Centers unfortunately. I am getting a diverting ileostomy first-I have my surgical consult next week and hopefully surgery before the end of June-as they think if it is a functional/peristalsis type issue this should improve my health greatly pretty quick, and help me make a more confident decision to have the pouch taken out and move to a permanent end ileostomy. It does mean an extra surgery, but I really really really need to know with certainty that I’m out of options or something wasn’t missed before I give up my continence in my 40’s. It is such a hard decision, I totally get it. I’ve been trying to convince myself for a year I can live with chronic pain and sickness and it really isn’t “that bad” but have finally come to face facts after this last hospital admission that this is no way to live and it isn’t temporary, and if an ileostomy will give me my quality of life back, I need to accept it. It’s still hard, but I also can’t live sick and in pain anymore, I just can’t, when there is an option not too.

feel free to message me if you need to, no one other than us pouchers  has any idea what it’s like wrestling with these kinds of questions and situations. This site has been a huge support to me the past 2 years. 

to others on this thread-did any of you have your pouch diverted first without taking the pouch out, like in stages, and if so how long was your recovery?

good luck to you.

@BillV posted:

Your journey with a J pouch is very similar to mine. After 30 years, my J pouch had to be removed due to recurrent high grade dysplasia and a malignant polyp in the anal canal.  I also had weakened sphincter muscles. I opted to get a BCIR, a procedure that does not require having an external bag.  For this procedure (which is very similar to a Kock pouch), the surgeon creates an internal pouch out of a short section of your small intestine and a valve that holds everything inside until you empty it with a plastic catheter at your convenience 3-5 times a day.  The button hole size stoma is located lower on the abdominal wall than that of a conventional ileostomy, is flush with the skin and is covered with a small absorbent dressing.  There is no leakage of gas or stool.  This procedure has enabled me to have a very good quality of life and eliminated the leakage and skin irritation problems I had with my J pouch.

The two earlier posters have explained how a conventional ileostomy has worked out well for them, and it is not my intent to show that a BCIR or a Kock pouch would work out better for you.  It is just another option that is available to you at this time.  I wrote an article in UOAA’s magazine, The Phoenix, entitled “Researching My Options”.  This article was reprinted on the Quality Life Association’s website (www.qla-ostomy.org) under the Ostomy Options and Education tab.  For me, it was assuring to know that there were options available, especially since I strongly did not want to have an external bag.  Please feel free to send me a PM with any questions that you have.

Bill

 

Bill, one of the issues with a BCIR is not many doctors do them. Last I heard only 2 docs in US do them, Tampa and LA maybe is the other one.? A lot of surgeons wont touch them as they don't have training on them unfortunately. I am not sure people would be comfortable getting something that their area docs cannot help with if issues arise. Please correct me if I am wrong.

With the retirement of Dr. Rehnke, there is currently only one BCIR center that is located in Los Angeles with Dr. Schiller and Dr. Benyamini.  However, the K pouch procedure is very similar to the BCIR and functions exactly the same as the BCIR and have similar success rates.  There are a number of surgeons who do K pouches and a list of them can be found on the Quality Life Association’s website (qla-ostomy.com) under the Medical Info tab.  In spite of the limited number of surgeons who perform continent ileostomy procedures, there are many thousands of us who have them and are able to get the support needed when complications happen, even if it means traveling away from home.  For us, the inconvenience of travel far outweighs having the issues associated with having an external bag.

Just to clarify on some previous comments regarding K-Pouch and/or BCIR surgery:

K-pouch surgery does not always require the use of “way more bowel.” Also, the conversion of a j-pouch to a k-pouch can in many cases be performed in one surgery. Each person and case is very different — given disfunction, previous surgeries, other med conditions, etc — and everyone should get their own consultation before eliminating options. Dr. Dietz does not look for excuses to perform surgery and I would absolutely recommend trusting his judgement and surgical recommendation — with the understanding that only you know your own expectations and tolerances. A proper risk/benefit analysis requires an honest self-evaluation.

Personally, I’d give anything to have my two years with a wonky stoma and five years I fought my j-pouch back. I spent most of it stuck in the bathroom, or in the hospital, mostly in pain and miserable, at times suicidal. I lost precious time with my son’s at home, negatively affected their growing up, and missed countless special events and holidays with my daughters and grandchildren out-of-state. As for my marriage, I’ll just leave that at “we survived.” Any other personal life is now virtually non-existent. I can’t talk, think or write about it now without crying for what was lost...and don’t know if I ever will. God bless those on this website who shared their experiences and positivity, they helped me realize I still had other medical options! And those options gave me a life back!

As for getting something that no local doc would touch — yes, sometimes true, but I was in the position like many others where local docs are no longer of any help anyway. Going out-of-state was far better than a barely-living slow death at home. In fact, my not understanding how limited the experience was of my local docs was in many ways to blame for much of my adverse experience and poor care from the start. But they didn’t know what they didn’t know and that’s another story for another day. Keep trying, keep pushing, and keep asking questions, use every breath you have :-)

Lastly, if anyone reading this is new to the site, Bill (see above) is one of this site’s (and communities) very best supporters. I appreciate his frequent and informative contributions and referred to them myself when considering my k-pouch (Thanks Bill!) While these surgeries are not widely available, they are performed by many more than 2 docs in 2 states. The website he references for the non-profit organization “Quality Life Association” (aptly named!) also has a helpful list of doctors who perform continent ostomy surgery or are willing to treat a patient with a continent ostomy. (https://www.qla-ostomy.org/med...-continent-ostomies/) It is always changing and not exhaustive, but it is a good place from which to start making inquiries.

—Jen

Thanks for the compliment, Jen.  Best of health, safety and happiness to you!