Dear Jan;
I am going thru so much this time arround ,after my take down
I go from diarrea to blockage.I am eating as bland as possible as every thing i eat causes me terrible gut pain and very active bowel .The dr said to triple up my metamucil ,and this justs makes me go a little every 5 min non stop until i get no sleep .So i take imodium and lopermide to slow things down ,than another blockage.
Jan I have been told the reason i am unable to hold back tha violent urges is my spincter is too weak ,based on tests taken.

The reason for my request is to get your input to a decission wheather to just opt for the perm ostomy.I am at my wits end this time arround as going on three years ,and it is starting to effect my mental outlook and this bothers me.


ALSO question is the surgery to a perm stoma as radical as the other surgeries.Do they do more than one surgery to complete the process.
I am just looking for some quality of life as I have not had any since I started this journey.

Jan thank you very much .gary

If you would like to email me hrgwolf@yaho.com

Jan will be able to tell you if there is a way to strengthen your sphincter or some other solution.

You might want to consider a K-pouch. Or a BCIR. There are a couple of surgeons on the west coast who do them. Dr. Schiller in Los Angeles for the BCIR and Dr. Launer in San Diego for the K-pouch. They are both very experienced surgeons.

These continent pouches are one surgery only. About a week or so in the hospital and then a gradual time build-up to let the pouch expand and grow, etc. This takes a month or so...I have had a K-pouch for over 30 years. One valve revision in 1998. First surgery in 1976. Let me know if you have any questions.

Good luck and I am sure Jan will have some ideas for you.

If the larger doses of fiber cause obstructions, then obviously, you need to cut back on this. I think you are on the right track with the loperamide (Imodium is the same). This drug is supposed to improve rectal sphincter tone and increase the water absorption. I also wonder if you have IPS (irritable pouch syndrome) superimposed on your other issues (if pouchitis has been ruled out). In that case, antidepressants and/or antispasmotics could be useful in relieving your symptoms.

Since you have really been through the wringer, surgery-wise, I'd try to avoid any more surgery if you can. But, if conservative treatment does not help restore a reasonable quality of life, you are going to have to consider further surgery.

A continent ileostomy is a good consideration and definitely worth exploring, but be forewarned that it is a major undertaking and not without it's own set of risks. Obviously, an end ileostomy would be a much simpler procedure, particularly if you left the pelvic pouch in place. Pouch removal would not be necessary (for an end ileostomy or continent ileostomy) unless you had active disease in the retained pouch. You would, however, continue to expel mucous from the pouch at intervals.

It all depends on how motivated you are.

Jan

Thank you Jan;
I value your input.gary

Just to jump in here for a sec (Hi Jan :-P )... I just went to a END illeo 7 months ago, cuff removal (dyplasia issues) and kept my rear open. I was having a ton of cuff issues and the cells kept getting worse. With the rear open and my pouch still in, I do pass mucus (2 times a day of that with no urge or pressure)... Recovery wasnt to bad and my quality of life is wonderful. My pouch is perfect the cuff was the issue so my Dr. decided to leave pouch in and take cuff out (I wasnt looking at a pouch advancement and after talking to CC the K pouch wasnt for me at all).
So you can go to a END illeo with your rear still open (will have some mucus) and keep your pouch. Good luck and hope things work out.
Also, most of us here with end illeos now will all agree that care and output with an end illeo is so much easier and so simple when you compare the 2

Thank you jason.

Is there someone out there that had the end ileo and had pouch removed and anal closed.I would like some input as to the recovery and extent of surgery ect.Thanks gary.

There have been quite a few Gary. Shell for one. If you check out the ileostomy forum, you may find many. You may want to post there too asking for input.

Jan