I’m a new member. I was diagnosed with celiac and UC in 2003. They watched my liver enzymes for years. I had a liver biopsy and several ultrasounds over the years. I was diagnosed with PSC in 2016. Overall, I’ve been incredibly fortunate and virtually symptom free.
However, recently, after a routine colonoscopy (SIDENOTE: don’t do medical procedures on Friday the 13th), I have been referred to a surgeon at Swedish Medical in Seattle for a probable colectomy.
I’ve never had major surgery. I keep Google researching and spiraling into anxiety.
I would love to hear from anyone who has had a colectomy (any type) with PSC. Any advice for surviving the hospital or improving recovery? What should I be asking my surgeon when I meet him in a couple of weeks? How long should I expect recovery to be?
Autumn
Hi Gary here. Yes I was treated fro crohns for a fews years then got a toxic mega colon (infected colon) which required emergency removal. So the entire colon was removed and a temp colostomy bags put on the tummy. I opted for the J pouch reversal operation at 3 moths where they take your small colon make a pouch (storeage vessel) and then re connect this to your backside. after another 3 months they allow stools to flow through what was your normal route. I chose this option as I was young and very outdoor and water active (43yrs). Recently I had another total bowel blockage due to the scare tissue from the first op catching some fibre which eventually built up and blocked my bowel so no on a low fibre diet.
Would I do it again. Yes the j pouch gave me certain freedoms but if I was having it now at my age (50yrs) I may now just opt for the external bag.
My advice- get a surgery that just does colectomies not a general surgeon. My second op was just done by the oncall general surgeon and I got an infection and a secondarday blockage after surgury, which thankfully has cleared. Secondly be aware that any time they touch your intestines the bodies natural reaction is to stop the organ. This paralysis lasts a different amount of time for each person. Some people who have keyhole surgery are in and out in 4-5 days. On all my operations my paralysis last 11+ days. This is significant as during that time you often vomit a lot of bile and its nil by mouth. The general rule is you must be handling solid foods before they release you from hospital so my stays were always around the 20-30days in hospital. (Please note I was opened up fully not keyhole and I was considered unlucky by the staff who say I am good example of worst case- so please now breath and dont stress you will follow me)
Now the relationship to PSC- well looks like I might have had some symptoms of PSC during this but it wasn’t picked up until about 6 months after my surgeries so cant really comment.
So when I was diagnosed with psc in 2013, UC was way behind me. Pun intended.
I really feel for people who have to juggle psc with UC/ chrons…
My recovery kicked my butt. It was 50% physical, 50% getting used to the bag. It took me 3-4 weeks to start feeling normal, and by the time I started to get used to the bag, it was time for my jpouch to be hooked up.
If you get a pouch, it will take like;y a long adjustment to get used to it. My chief complaint is still too many trips to the bathroom.
I don’t have anything to add to the colectomy topic or advice for you (My partner has PSC & UC. The procedure was discussed with us at high level but never went passed that).
I simply wanted to reach out and say I hope and pray your anxiety and worry settle. Stress can become a dangerous toxin for your body, as I’m sure you know.
