You've tried harder than most to keep you jpouch and I think you're smart for now looking at other options. The difference between an ileostomy and a colostomy is the intestine it's attached to. Colostomies come off of the colon. Since we don't have a colon any longer, our only choice of ostomies is the ileostomy. Have you thought about a k-pouch?

I can't answer your questions about life with an ostomy, but there are several on this board that can. JillM comes to mind. She ditched her jpouch and is extremely happy with her ostomy. All my best to you.

Sue

Manchester, Why aren't they treating your anal canal disease? I have the exact same issues you have and I am almost three years post takedown, but mine have been ongoing for almost two years.
My pouch has never worked the way it should due to my anal canal issues.

You do have some options you may be able to try if you have not already exhausted these such as:

canasa supppositories
anucort suppositories
Cipro (I am on this continually and it helps with my anal pain when I take it consistently)
6 mp
other biologics
rectiv (cream by prescription for anal pain) licodaine (cream by prescription for anal pain)
NOTE the last two do not treat active disease, just ease pain.


If all medical options fail, and your anal canal is not so diseased that you are unable to have additional surgery, there is pouch advancement surgery. They perform a mucosectomy and remove all the remaining diseased tissue in the anal canal and the rectal cuff is also removed. They detach your pouch and drop it down and hand sew it. The purpose of this is to remove any remaining disease in the rectal cuff and anal canal.

I am certain your inflammation is causing your emptying issues and you may also have a stricture at the anastomosis connection that gets further aggravated by inflammation in many cases or can even be caused by it.

As far as an ostomy goes....you do not know when you have 'to go' per say as it empties all the
time. You will learn by how full the bag feels as to when it is best for you to empty. You no longer have a colon, hence you are unable to have a colostomy. You have the option with this surgery to just disconnect the pouch and leave it in tact, or remove it completely and they will sew up your anus. With the anal issues you are experiencing, I would probably opt for total removal of the pouch as if I have to go that route, that is most likely what I will do (or look into the BCIR). I am not fond of having to empty a bag on my side and also having to use the toilet a few times a day to release mucous the pouch will still create that needs to be passed.

Good luck with your decision, but do not sign up for surgery without checking into your medical options first. If you have only been struggling this past year, I see no reason why they cannot try and treat you medically first.

So I saw my gastro who is now convinced my current problems have been caused by my doctor giving me metformin for my diabetes.

Any thoughts?

Metformin is known for causing major diarrhea and gas issues in those with normal digestive tracts. For some people who take this, it is a big enough problem as to cause them to have accidents. In the medical community, this is a very well know side effect of this drug, I am surprised that your doc did not take it account that you have NO colon....Oh, no, wait, that's right ...unless you have an ostomy bag, it seems many docs "forget" that our j-pouch does not work exactly as a large intestine would. Yeah, your pouch will be much happier not being on metformin. That would be a pretty sure bet!!!

I had an iliostomy for 1 1/2 years before I had my j-pouch formed. Once my colon was removed during the first surgery I felt like I had entered a totally new way of living. I was pain free, worry free, and not so depressed. I felt like my ileostomy had given me my life back. I worked full-time, played in a pipe band, participated in all kinds of fun activities and never had a blowout or leak in public.

I opted for a j-pouch because during the initial urgent surgery my colon had been removed. Although it is early days yet and I am still getting used to my pouch I'm glad that I have done this. If the pouch does not last very long I know that going back to life with an ileostomy will be an adjustment but not the end of the world.

I would like to suggest another support site that I use daily. It is "Inspire.com" and they have groups that offer support for all kinds of health problems. I use the "ostomy group" which is full of support, empathy, and answers.

Merry Christmas

I hope all works out well. I am on the cusp of having a pouch excision, as well, with what I consider chronic issues with abscess and pouch leaks, etc. I have been progressively tired and weak, taking antibiotics and my surgeon and I have pretty much resolved (but for one more visit to Dr. Remzi and Dr. Shen at CC) to go back to the ostomy.

When I had the ostomy I felt perfectly normal and healthy. I didn't go to bed at 9:00 and wake up four times a night to go to the bathroom.

I am very grateful for the option of having a pouch, but I think I'm just not cut out for it. If I can keep the pouch I will, but after giving it my best shot, pouch revision surgeries (four total hospital visits) CT scans, blood work, MRIs, sonograms ... it's about time for me.

I know having an Ostomy is an issue for my wife and it's not optimal, but she also recognizes the qualify of life aspect and is supportive.

Knklhead, quality of life issues were very significant in my option selection when confronted with the medical necessity to have my J pouch removed. I had the bag between pouch operations and was greatly relieved when it became history. The prospects of an ostomy was an issue for both my wife and I and presented distinct limitations on intimacy, among others. We were thankful that I had the BCIR procedure which made life close to what I had prior to my first surgery. She has been very supportive and much relieved when I did not have to be concerned where the nearest bathroom was located and that I could get a full night’s sleep.