Hi All,

I'm about ready to call the Cleveland Clinic in Weston, FL and schedule to have my j-pouch removed after 15 years because of problems with incontinence. My questions to all you folks are how long was the recovery time for the removal of the j-pouch, sphincters, etc.? Was it a painful recovery? Was it impossible to sit? How soon before your ileostomy settled down and you were able to eat normally and got your appetite back? What does it look like down below now that you've healed up? Do you get phantom spasms and urges to move your bowels since you've had everything removed.

Thanks for all your answers and comments. They are much appreciated as I make this transition to a permanent ileostomy.

Regards,

Caty

Caty,

I know how hard you have tried to hang on...I hope this decision will bring you some peace.

My recovery from pouch removal was faster than from any other surgery. I think because they finally got the problem and because I did the mind body program. I would say I was really healed and back to my usual life within 2 months (that includes everything).

The worst part for me was the stitches in the tush - very hard to find a comfortable way to sit or sleep. ONce those were out, things were great. By the time I got out of the hospital, I was walking around my neighborhood with no problems. Within 3 weeks I was doing it alone.

My ostomy took about 2 months to settle - for skin to adapt and for food to work itself out. I took it slowly in the beginning, but by the end of the 2nd month I was back to my regular diet.

I don't get phantom spasm, but I sometimes feel some pressure in that area. Nothing uncomfortable or painful, just light pressure and it is very uncommon.

The sewn area looks basically like a skin tag - a small flap (not large enough to move around or get irritated) that runs lengthwise.

The surgery is a long one, but I will bet you have an easier time recovering from it than from your graciloplacty. You know what to expect - abdominal soreness, careful coughing or laughing the first weeks, etc...

Let me know if you have more questions and how your meeting with CC goes.

Hi Caty,
Sorry your having troubles and considering having the jpouch out.
I gave up on the jpouch after 9 yrs. I elected to get a kock pouch in july/06 and jpouch removed. When I awoke I had a permanent ileostomy. My Dr. told me if he found crohns during the op that he wouldn't give me a k pouch, pathology later confirmed the dx of crohns. (All my pre op testing showed the origional dx of UC, no crohns.)
I was off work 9 wks. I can't lie, it hurt and was a major op. My ileostomy works good, sure I had a few accidents but with time its not a problem.
I don't get any urges to have a bowel movement, the rear healed up with hardly any pain. My incision and guts hurt, my butt very little. I still get some very mild rectal pain once in awhile,not enough to even think about.What does it look like down there now? If you mean the rectum area, I don't know, I never looked.
I started to eat normally about 2 to 3 wks out of surgery, I just didn't have much of an appetite. I now eat anything and everything I want.
Hope this helped, anything else just ask.
Good luck and the best to you.

Caty - I was going to say what Jill said - that after going through gracioplasty you're probably prepared for this surgery. I'm so sorry that you have to have another surgery. I'm not sorry you're going to be all healthy and perfect again. I'm positive you'll go through this next surgery with all the grace you've displayed with all of your former surgeries. I'm just sure you're going to do just fine. I absolutely demand it!!

Let us know how it's going as you go through everything.

kathy

Dear Caty,

I hope that you don't mind that I'm chiming in, since I don't have any personal knowledge on the subject, but I just want to give you my support and encouragement, because this is major surgery you're considering, but you have obviously fought the good fight and are making a well-informed and well-prepared decision.

I am happy that you are facing a future of good health and happiness!

Caty:
I'd say a good month and a half till I had no pain at all. This recovery has been easier than any of the other surgeries. That being said, I just had my j-pouch removed on Jan. 4th of this year, as a result of chronic pouchitis. I feel REALLY good. No problems or anything. So far so good.
I have no phantom feelings for bowel movements, or any spasms at all. I do have a little pressure now and then, when I stand up quickly, but it's getting to occur less and less.
I've gone from 117 lbs to 137 just since the surgery. I feel great, back to work. I love life again.
Things down below don't look all that different, not as much as I thought it would, anyway. Kinda' like Jill said, just a little skin flap. It's sore at first, but I could sit without unbearable pain just a few days after coming home from the hospital.
Wishing you all the best!
Paul

Hi Caty,

Having fought 8 long years to save my j-pouch I know what you must be going through right now!

My recovery was a little different to most people's because it was complicated by my contracting the MRSA bug so I won't offer you advice on the timescale side of my recovery.

However, as far as the anal wound was concerned I don't really remember it being particularly more painful than any of my other wounds in fact I think it was the wound that gave me the least problems. Sure it was irritating while I still had my stitches, but once they were out I had none of the leakage or pain I had been warned about.

I adapted really quickly to Wee Willie and his little quirks and never really had problems with any serious leaks, though I did have some awful peristomal ulcers early on due to the MRSA infection which caused me a lot of problems. But once they were healed I was fine! Again, that is something that you won't have to worry about.

As for phantom spasms and stuff, well I did get (and sometimes still do) some really strange phantom fart sensations! It feels like there is some gas bubbling up ready to let rip but of course it never quite makes it which feels sort of tickly and really weird! However, I know some people who get really bad urges to go to the loo and the way they deal with it is to sit on the toilet and just go through the motions. Sounds weird but it does work I believe!

My anal wound is amazing! In spite of the MRSA infection I only have a very thin silver line where the incision was and where my anus used to be there is a little dimple. At first glance you would never know that I didn't still have a bum! It's really quite neat! In fact I have made a mental note to remind doctors that I don't have an anus in case they want to do any probing! Perhaps I should get a tattoo there warning them?

I think everyone else has covered the initial recovery stuff, so there isn't much more that I can add except that I wish you a speedy recovery and good luck with your surgery.

Take care and let us know how it goes as soon as you can update.

Shell

Thanks everyone for all your wonderful posts. If anyone else wants to chime in, please do.

I called the Cleveland Clinic this morning and spoke with a wonderful young woman who does the surgery scheduling. Boy, does she have the perfect job for her personality. It was quite an emotional phone call for me and she helped me through it. She also had wonderfully, positive things to say about Dr. Juan Nogueras, the surgeon who will do the procedure. You see, I've never seen him for anything other than check ups.

My surgery is tentatively set for Thursday, July 19th and I will probably be in the hospital for eight to ten days.

You all have helped me so very much. I know it sounds silly, but I just can't get past the fact that I will have to look at that stoma on my tummy for the rest of my life. I really like looking at my tummy after a shower, etc., and it's just going to be real hard, that's all.

Caty

Caty
Dr. Fazio recommended him to me to see down here if I needed so that being said he is mostly likely a VERY good choice.