I have had PSC for 8 years now, it is pretty much asymptomatic, I was on urso or the first 7 years and about a year ago they stopped the urso as my liver clinic said there is now not much evidence to say it makes any difference.
I was also diagnosed with UC at the same time, it was pretty much controlled with pentassa, but a annual colonoscopy showed a dalm lesion with on biopsy showed dsyplastic cell and i have recently had an ileostomy and now have a stoma bag. It has not been decided whether or not to make this permanent or to reverse and have a j pouch fitted. Statistics state there is a 75% chance of pouchitis when you have PSC and I was just wondering if anyone has any experience with this.
I had a complete colectomy after being diagnosed with lymphoma in the lining of my colon. I also have PSC. I have custom plumbing with an internal pouch. Pouchitis is a constant problem for me. I have dealt with it by staying on a low dose of antibiotics (Metronidazole and Ciprofloxacin). As long as I stay on the low doses of the antibiotics things are pretty good for me. I still find times when the urgency of needing a bathroom is high and the cramping is painful, but having had an external pouch for 6 months while going through chemo before getting the insides hooked back up, I'd make the same choice again. My advice is to get the custom plumbing and be done with the external pouch.
My 17 year old son is going in on the 5th for the surgery. Everything you mentioned is consistent with what we had heard. If all goes well he will have the reconnect surgery 6-8 weeks after. He also has PSC with the UC. Have any of you tried the Paleo Diet plan? His last blood test showed high cholesterol. I have read reports of other PSC patients with this as well. Stephen did they put you on a special diet after the surgery? They mentioned that to us also.
My 17 year old son is going in on the 5th for the surgery. Everything you mentioned is consistent with what we had heard. If all goes well he will have the reconnect surgery 6-8 weeks after. He also has PSC with the UC. Have any of you tried the Paleo Diet plan? His last blood test showed high cholesterol. I have read reports of other PSC patients with this as well. Stephen did they put you on a special diet after the surgery? They mentioned that to us also.
its been 5 weeks since my surgery and I visit the surgeon next week so I will find out if the pouch is an option for me, if not I will have sugery to have the anus and the rectum removed. I know the liver clinic is not keen for me to have the permanent stoma, because if the liver fails there is a huge problem with varices at the stoma. The colorectal surgeon would rather I have the permanent stoma, because of the pouchitis and potential problems with leakage and frequency. I have had to be on a special "low residue" diet (for 6 weeks after surgery) no whole grains, rice, fruits, veg, seeds or nuts, I have never heard of the paleo diet but will look into it, choloesterol has never been a problem for me.
Hope all goes well for your son, he is so young, I was so surprised at how many young people were in the the hospital having the same operation, they are so brave.
its been 5 weeks since my surgery and I visit the surgeon next week so I will find out if the pouch is an option for me, if not I will have sugery to have the anus and the rectum removed. I know the liver clinic is not keen for me to have the permanent stoma, because if the liver fails there is a huge problem with varices at the stoma. The colorectal surgeon would rather I have the permanent stoma, because of the pouchitis and potential problems with leakage and frequency. I have had to be on a special "low residue" diet (for 6 weeks after surgery) no whole grains, rice, fruits, veg, seeds or nuts, I have never heard of the paleo diet but will look into it, choloesterol has never been a problem for me.
I had a complete colectomy and a J pouch in my 20’s after a horrible bout of food poisoning. I was about the 300th pouch person in Canada and techniques have improved since the 80’s! I was not ready for the body issues associated with the ileostomy. I control the poucitis by watching what I eat carefully… Small amounts of sugar, probiotic yogurt, protein smoothies, no raw veggies and I stay away from other hard to digest things. (I will never be overweight!) I think the ileostomy may require a similar diet, so not much difference there… At night, I slow the digestive track down with 30 mgs. of codein at bedtime. I have never had to increase it. Once in a while, if the pouchitis gets going, I take a course of cipro.
Since my 20’s I have had a high stress career, 2 kids (c-sections) and then a few years ago, I was diagnosed with PSC that was already very advanced. My son was the donor for my liver transplant last year and we are both doing well. They also took out a section of small intestine that was blocked by adhesions… (2 - 10 hour operations) But good grief… Enough already! I have advanced custom insides…
I don’t know what is best for you or others. It is one step and one decision at a time that got me here, and there were days along the way when I agonized around the choices. I am just relating my story to say, make the best choice for you now… If you go with the pouch, it can be removed and the iliostomy put back in later. Both have issues related to them… Do what you feel is most comfortable for you now.
Hope this helps!
I've had my J pouch surgery 3 years ago, lived 1 year with the ileostomy. I also have PSC diagnosed in 2000. From what I can tell, I've not yet had pouchitis...that I know of. Certainly, that has never been a diagnosis for me. I was told that chances that I will get pouchitis in my life time are high, but I can't image it is THAT bad to go thorugh it.