Proctocolectomy Surgery: Seeking Advice and Experiences

May 19, 2024 4:45 am

Hi folks. I have had an ileostomy now coming up for two years in August, after emergency surgery for ulcerative colitis. I have just been given a date for proctocolectomy surgery. I opted out of a J-pouch after hearing some horror stories. I have a million questions, but the surgeon who is doing my surgery was difficult to understand and hear properly when he rang to give me the date.

I have done about 12 months of Infliximab infusions, which I asked to have stopped as I felt they were not helping; in fact, they made things a whole lot worse. Finally, my gastroenterologists stopped them four months after I initially asked for them to be stopped. In the past year, I have developed a hernia in my lower abdomen, which a locum I saw about a month ago told me would be fixed when I have the proctocolectomy surgery done. I still have UC in the remaining colon, which has moderate to severe flare-ups, but for the most part, I deal with this at home, given that getting a GP appointment is sometimes a 4-6 week wait.

Has anyone who has had this proctocolectomy surgery experienced any bladder problems prior to surgery or indeed even after surgery? I seem to have developed over the last few months the inability to wait to pass urine, as in as soon as I feel the need, I need to move quickly or... well, you get the drift.

Is anyone here able to tell me what to expect after the proctocolectomy surgery, as I have no idea?

May 19, 2024 9:26 am

Hi Jenny,

I underwent laparoscopic surgery to remove cancer from my lower colon. My scans after radiation and chemo showed my tumor had responded but did not disappear. My surgeon is the head of the gastrointestinal department. He told me he thought I would be able to have my tumor removed and keep some of my rectum and sphincter muscles. My body has openly shown me it does not like to be opened up. A minor lung tumor microwave ablation put me in the hospital for more than two weeks. Anyway, I was informed that I would suffer from LARS and having had a past with LARS had me concerned. The day of the surgery I told him that at 60 years old my goal was to be cancer-free, and if that meant an ostomy, so be it. I want to spend some of the money we have saved for retirement and not leave it all to my bride and her future boyfriend... lol.

Sorry, long post. Anyway, come to find out I had 2 cancers and 2 tumors, one right behind the other. The operation would affect my sphincter muscle, so I ended up with a permanent colostomy and my butt hole sewn up.

Who would have guessed that closing a hole would be such a pain in the ass, or well where the ass used to be. Haha. I ended up having an ileus that kept me in the hospital for 18 days, sent home being fed TPN via a PICC line.

Honestly, I thought... this is not what I signed up for. But now I am getting better. PICC line gone. Colostomy working and I'm eating. My bum is still sore, but not worth taking aspirin.

Oh yeah, bladder. My urination is improving but still weird. At first, I felt like I could not hold my urine. Also, I had no pressure, it just sorta fell out. Well, now I have pressure again. I'm not passing for length, but pressure. I still have a small interlude between the beginning and ending. Seems like I go, then 5 minutes later I go again to finish. But it's all getting better.

Sorry to ramble.

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May 19, 2024 10:04 am

Hello Jen

I have had a subtotal colectomy, which then became a J-pouch, which was a disaster because of pouchitis and cuffitis, then went back to the ileo. The J-pouch is now disconnected. The only trouble I had was the cuffitis/pouchitis continued in the J-pouch for about two years periodically after being disconnected, which confounded everyone but eventually subsided. This is the only issue I have had.

May 19, 2024 10:13 am
Reply to luvram13

That was pretty much me 3 years ago.

May 19, 2024 11:44 am
Reply to AlexT

You've come a long way, baby! Or so it seems with your helpful input, humor, positive attitude, and insight… many kudos to you… JB

Living with Your Ostomy | Hollister
ron in mich
May 19, 2024 12:30 pm

Hi Jenny, welcome to the site. Each time I had surgery, I had a catheter in, and when it was removed, I didn't have much control of my bladder, which would last for a couple of weeks, and I would slowly get control of it. As for the surgery, get a very soft pillow to sit on.

May 19, 2024 4:20 pm
Reply to Justbreathe

Thank you