Permanent Ostomy

I had to have my J pouch removed for medical reasons, but opted for a procedure referred to as a continent ileostomy.  This procedure (K pouch or similar BCIR) does not require having an external bag and is easily emptied at the person’s convenience 3-5 times a day with a small plastic catheter.  This procedure has a high success rate as well as a high user satisfaction.  Unfortunately, many gastroenterologists and surgeons do not mention this option to their patients for a variety of reasons.

I published an article in UOAA’s magazine, The Phoenix, entitled “Researching My Options”, that could help with decision you need to make.  This article can be found in the Quality Life Association’s web page (www.qla-ostomy.org) under the “Ostomy Options and Education” tab. The Quality Life Association is hosting its annual conference in Phoenix, AZ between September 27 and October.  You don’t have to be a QLA member to attend.  This conference will include presentations by noted continent ileostomy doctors who will be available to answer questions that you might have.  In addition, there will be many people with continent pouches who you could talk to.  Information about the conference is also on the Quality Life Association web page.  Please feel free to message me with any questions.

Hello KR,

Yes, I feel so much healthier with an ostomy.  It gave me back my life!

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.  In 2007 after 16 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent end ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband.  The ET nurse and I found the perfect spot together.

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 69 now and life couldn't be better.  My husband and I are finally able to travel and have had lots of fun in our retirement.  He was my rock while I was ill.  Our lives are no longer on hold.  My ileostomy is 15 years old.

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.

Caty

"suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy. Why did I wait so long.."

Human nature. I did the exact same thing. Working and suffering.

One decision I made for my self and others that has and will never be regretted.  It's not an easy one. Once done I had to come to terms with it and have accepted it totally. Sure is alot better than before.

You mentioned sleep. Omgoodness. I had the same experience and continue to get good sleep most nights  and the nights I don't sleep well it has nothing to do with my ileo.

Bill.

I discussed the k pouch before removal of my J. My surgeon wouldn't do it because she aid a pouch is a pouch. And I'd most likely have the same problems. So I'm not and never would diss your decision to get one. It seems to work well with you. It's still an option for some who do not want the end ileo.

Richard.

In no way am I criticising  Richard's decision.  For him, it was the better way to go and it worked out well.  Undoubtedly, others who are faced with the removal of their J pouch will read these posts.   Since there are many doctors who are not supportive of K pouches. those who are seriously considering that option or do not want to have an external bag, should consult with a surgeon who has done many of them and can advise whether the person is a good candidate.  With this information in hand, they can decide what option is best for them

Bill.

I never thought that way.

I hope that you thought the same of me.

We all make decisions on a personal basis.

My surgeon said no because she. I don't think she did them. And she knew more than I did about them and that I would not be a good candidate for one.  And she was probably right .  I'm not a good patient . Lol.

Richard.

KR,

I just had an appointment with my surgeon to plan next steps if one last attempt to deal with my sinus tract doesn’t work. It is a very difficult decision. In many ways much harder then the original surgery as I’m not critically ill. The original surgery wasn’t really a choice. Now, I can still work full time, yada yada, so it feels like “should I just stick it out for one more procedure, and another?” Where does it end? You’re tough for putting up with it for so long. I’m only 14 months in and plotting an exit strategy. I will say, it helps that my surgeon is very supportive. He saw me at my healthiest with the end ileo so he knows what that looks like for me. Can you find a surgeon that may be a bit more supportive?

Caty,

Thanks so much for sharing. I’ve been agonizing over this and it’s helpful to hear the positive experiences.

Hello KR

I'm at a point after 33 yrs as a j poucher to go ahead and get as much info from surgeon at Cleveland clinic to get the facts on how removing the j pouch will be done. I just don't think I can keep on being a j poucher the struggles are exhausting me. Being a current breast cancer patient biologics are too risky right now for me. I was on entyvio for 2 yrs after my mastectomy but eventually body wasn't responding to it & pouchitis & 5 chronic bleeding ulcers on pouch are back along with severe rectal & anal pain. Nights are hard..I don't like to think about dinner hour because I know by 6 30 p.m. the rest of my evening & night will be in tge bathroom even while on immodium.  Cramping & butt burns are intense. I'm going to be 62 so I am scared about more surgery.  I've had 13 surgeries so I know how they can ho wrong too!! But I too am at a point of enough...33 yrs..but the last 10 yrs have been way too complicated.  I wish you the very best. Praying for wisdom & the best surgeon that is available to you..& me if & when the time comes to make the decision to go to permanent ileostomy.  God Blessings...

Fight like a girl

I believe it is possible to remove the leftover rectum, as a pouch redo surgery. It could be that they left too much of the rectum, which UC can continue to attack. You would again have to have 2 surgeries. Remzi at NYU is the best surgeon for a pouch redo. At least he can give you a consultation.