Total Proctocolectomy with J-Pouch Reconstruction

[pzzzzs]

Hello Everyone. I am a 60 year-old male and after approximately 3 years of severe chronic ulcerative colitis and failing on 6 or 7 different drugs, my entire colon was removed. I am now two months post-surgery with my ileostomy which is apparently Stage 1 of a three stage procedure called a Total Proctocolectomy with J-Pouch Reconstruction. I am concerned about the future 2 stages, and I was hoping to talk to someone who has been through the 3 stages of the procedure and can tell me what I might expect.

[sassie]

Maybe this read will help, I know nothing of what your going through but may God bless you..
https://www.pennmedicine.org/for-health ... ve-colitis


sassie

[JackieRose]

I guess I've been through the first 2 stages without the rectal removal and the J-Pouch reconstruction. I had a total colectomy and a stoma revision as a result of ulcerative colitis. My surgery was an emergency as a result of perforation. I don't regret not having my colon removed although management has been an ongoing problem for me. I hope this helps.

[pzzzzs]

Hello sassie and JackieRose and thank you for responding and sorry about my delayed response. I was new to these boards and I made this post about 6 weeks ago now. At that time I had received an email that said that my post had to be reviewed before it was posted, and that I would receive an email telling me when it was posted. I never received an email, so I assumed that it was never posted because of the COVID thing, but I'm glad to see it was.

sassie, thank you for the "pennmedicine" link. By coincidence, my surgeon is a UPenn surgeon and is listed in the article. He's great and he gave me a copy of the article before Stage 1. JackieRose, thank you also for your response.

I would love to hear from anyone out there who has had the "J-Pouch Reconstruction" and has been living with the results for any period of time. I'm hoping to hear experiences or get answers to questions such as:

How many bowel movements a day do you have? Has it decreased over time? Can you control them (ie. get the sensation with enough time to find a toilet)? Or do you have to wear adult diapers? Has that improved over time? Do you feel like your quality of life has improved measurably beyond life with an ileostomy? Things like that.

Thanks anyone for taking the time to respond.

[Roxy]

Hello to all.
I have not posted before but I have many concerns.
I had severe pan-colitis and had my large intestine removed approximately four years ago. I’ve been living with a stoma. without any problems, but recently I’ve had two runs into the ER because of a hernia. I have been able to massage the hernia back into place and use a hernia belt now. My doctors want that hernia repaired as soon as possible. I have put it off for over a year, while exercising to get my abdominal wall muscles in better shape. My doctor now wants me to have my rectum removed because I continue to bleed due to UC in my rectum. My current options are to have the hernia repaired ....the stoma will be moved (the doctors are telling me that’s the “gold standard“), mesh added to stabilize my small intestines and rectum removed.
Another option is to create a J pouch, and go through all the surgery that entails.
I am very frightened that I will end up with permanent pain no matter which surgery I choose.
I understand that a stoma is made through abdominal muscles and that it increases the chances of more hernias.
I am looking for any others experience with all of this. I trust the doctors I’ve been working with it ....took me a long time to find them when I was fighting pan colitis. They’ve given me multiple options but are concerned because I continue to have ulcerative colitis in my rectum and there would be 1 inch of my rectum left if I choose to have a J pouch. I’m going to be 70 soon and I’m also curious about how my age will affect my recovery.
Please let me know your experiences!

[JerryNYC]

I don't understand this, likely because I had my ileostomy and total proctocolectomy long before the J-pouch approach became available. I presume that this "continent surgery" requires the retaining of a functioning anal sphincter. Doesn't a total proctocolectomy remove this sphincter?