Possible k pouch

Hi Ashley – I can relate to your exact situation. I had UC, created the J-Pouch, developed a fistula and then had a ‘temporary’ ileostomy while my fistula ‘healed’. I left my J-pouch in until 2013; I would never be able to go back to the J-pouch because of the fistula, j-pouch pain and incontinence. So I had it removed knowing I had a permanent ileostomy. However, I had heard about the K-pouch from Dr. Shen at Cleveland Clinic well before my ileostomy, and kept exploring it. I knew I wanted it more than anything. I was not able to have it until 2015, but it was worth it! I think for you, you should ask yourself some hard questions: will ever go back to the j-pouch? Can live with your ileostomy permanently? Do you accept this will be your way of life? The K-pouch is a commitment, in a different way. You should read all you can about the K-pouch and understand this commitment as far as surgery, recovery, diet, intubating your pouch and caring for it (with mostly diet and emptying). It is an exceptional option and your health care facility (surgeon and stoma nurses) will be your best resources – as well as this forum. Intubating is difficult at first and it takes some time to get adjust, but that is what your stoma nurses are there to do – help you adjust. I felt like fainting the first time I did it (with the stoma nurse beside me) but she assured me it was normal and I will get better as I advance with my new pouch….and I did! Read, ask questions and ensure you include your loved ones. The K-pouch isn’t for everyone but I know for me, it is the best thing I ever did. All the best to you!

 I agree with what Kara wrote. There is very much information  on this  forum.  I read it and reread it and also asked questions.Also, you might consider going to Cleveland clinic for a consult.  You can speak with the ostomy nurse then and find out more about the intubation process.

Read on this forum about others who have the ileostomy. They have adjusted very well and are satisfied.  The K  pouch isn't for everybody and you will read that there are some problems with  it.  I'm a happy K poucher

Ashley, I agree with what both Kara and JLH have written.  I have a BCIR which is similar to the k pouch in function, but constructed a bit differently.  Both procedures have a high success rate and high user satisfaction. Most people with well-functioning pouches do not visit these forums, so don’t be discouraged by those with problems who come here for suggestions and support.

I have had excellent results with my BCIR during its 3 year life.  I found it easy to insert the catheter after the initial few times and the procedure is painless since there are no nerve endings in the stoma and valve.  I can eat almost anything I want (some things in moderation), participate in strenuous activities, empty the pouch 3-5 times daily at my convenience, and have no leakage of gas or stool at any time.  The stoma is flush with the skin, small and located below the belt line.  With either of these procedures, you will not have to have replacement bags and a change of clothing with you in case of a leak or “blow out”.  I spend under $200 per year for catheters and dressings to cover the stoma.  By all means, research these procedures and ask questions before making your decision.  There is an excellent web page for the BCIR at: www.bcir.com.  Be sure that the surgery is performed by a surgeon with lots of experience, since it is a complex operation.  Best of luck with whatever you decide to do.

Bill

Hi Ashley,

I have had my k pouch for 36+yrs...it has had excellent years, some speed bumps due to other health problems, a few mechanical difficulties due to my own personal stupidity (always, I repeat, always use lube!) and a couple of age related issues. But I am a special case.

That said, I Have Lived!

I lived as a shut-in pre-kpouch...incontinent, sick, miserable and unable to imagine a life outside of a bathroom.

The k pouch gave me back me. Freedom, life, liberty and the ability to forget that I was sick. I have used and abused it over the years and it is still hanging in.

You have about a 3 month learning curve where everything is new, different, scary...Then you learn. And suddenly things become easy.

I cover my stoma with a folded up mini kleenex to catch the mucus that dribbles sometimes, I also use a 1/2 panty liner on the inside of my unddies...you may not need both...some people use a large bandaid...I reserve those for those intimate moments...makes it practically invisible.

The most wonderful thing about a k pouch is that you forget that it is there.

Intubating...I no longer even think about it...no more than putting a straw in my mouth...no fear.

Read, ask questions, get the brochures...we are all here to help you. I hope that you come to an easy decision and get healthy.

Sharon

Had J Pouch Initially, was always a problem...had it removed...could not live way  was/am used to with the ileo, went for K pouch surgery...it was done and I loved it so much better than a j pouch, imo.   It is a major operation, you have to adjust and take care of it, but if all goes well, in time you will be happy you had it..then again, many people love  the j pouch and the standard ileostomy...for me personally, a well functioning, well built k pouch was a great option. Just try and do a lot of research and get the best possible med center/surgeon to help..Only a few surgeons still create  k pouches...nyc, cleveland, los angeles, toronto canada, a  center in florida that does a type of k pouch with modifications, BCIR....Once you recover from surgery and such, things are great....again, some people just go for the least complicated option, a standard ileostomy and are totally fine....Best Wishes...  R.