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ileal pouch in my near future

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Posted 2/23/2009 5:31 AM (GMT 0)
I have been reading posts for several days now, wanting to post but not exactly sure what to ask. There have been so many great questions asked and I thank you all for asking and answering the questions and providing your information so openly. I have pancolitis uc for 5 yrs now diagnosed but it have been longer. I also have primary sclerosing cholangitis affecting my liver, a lovely complication of the uc. It has been recommended to me by pretty much every dr I have ever seen except my dentist that I get this sick colon removed. Now, the transplant surgeons are telling me that when I receive a liver transplant if I don't have the ileal pouch procedure my colitis will "blow up" he actually said that! SO, I guess it is time for me to accept this. I'm wondering if anyone out there has any regrets about having the surgery? I'm still not 100% sure on what to do, I figure this is one of the best places to look for answers. Any help is greatly appreciated! Thank you in advance.

Holly

Posted 2/23/2009 5:39 AM (GMT 0)
nope no regrets!
i mean i'm not gonna say my childhood dream was to grow up and have a bag of poo on my waist, lol. But it sure beats UC like crazy!
Actually i do have a regret, not doing it much much sooner!
Its amazing how the minute the colon is gone you feel better, clean is the only way to describe it. i see that you hace some liver problems and i am sure not beign on all the meds would be a huge plus for that!
Idont know what the liver thingdoes to you with quality of life, but getting this bag gave me back my life, its very convenient also, lol.
make yourself a list of reasons that the surgery will make your life better, and then make a list of things you think you wont like about the surgery I bet your list of pros will be longer. my pro list was about 2 pages, my con list was 3 things and one of them was that i would have to carry some stuff with me, what a stupid thing,lol.
good luck and if you hace any more questions ask away!
Posted 2/23/2009 5:49 AM (GMT 0)
Thanks summerstorm.

I guess I should clarify the PSC. It is a disease affecting the bile ducts in your liver. It scars them so your liver becomes scarred and turns into fibrosis, then cirrhosis, then you need a new one. I am not experiencing many symptoms now except the fatigue but I am hoping that gets better after the surgery. My hemoglobin is so low right now! I hope I don't need another transfusion...but I think I will.
Posted 2/23/2009 5:53 AM (GMT 0)
well getting rid of the UC should help the fatigue and the hemoglobin, that will stop some of the blood loss, nd its amazing how much energy your body uses fighting off that stupid sick colon!
before i had surgery i was sleeping all the time, i just couldnt function. Now i am fine, for instance, got up friday mornign at 10, went to be saturday mornign at 4 (had been out having a little fun, somethingelse i could never do before!) now saturday itself was a little rough,lol.

Thanks for cleaering up the PSC, how do you get it? sorry if thats too nosy
Posted 2/23/2009 6:17 AM (GMT 0)
Of course, I would rather have a healthy colon but that wasn't meant to be.
My UC had become so horrible that my quality of life was getting worse and worse. I had the pain, the bleeding , and the bowels that couldn't be controlled. The surgery has been a real complicated trip but I feel better and the precancerous cells were removed. Free at last of UC is worth all that I had to go through. So I guess my answer is no I don't regret having the surgery. Life is too short to live every day in misery!!
Posted 2/23/2009 11:44 AM (GMT 0)
Holly,
Welcome to the forum. I'm sorry you've had health problems beyond UC, because having a bowel disease is enough to deal with. I have no regrets about the surgery, because it has given me my life back. Please feel free to ask any questions that come to mind, and we'll do our best to answer.
Posted 2/23/2009 2:03 PM (GMT 0)
No regrets here; I wouldn't take my colon back for anything!

Sue
Posted 2/23/2009 4:32 PM (GMT 0)

only regret was I didn't do it SOONER scool

and, welcome to the forum!

Posted 2/23/2009 5:50 PM (GMT 0)
Asking about the PSC isn't too nosy! NEVER! The more people can learn from others the better in my opinion.
about 5% of people with uc will develop psc. It is inflammation in the bile ducts that leads to scarring that progresses to fibrosis then to cirrhosis. Then there is a need for a liver transplant. 70% of people with PSC have uc. Nice statistics I think... It was once thought to be fairly rare but now it is beginning to be more reserached and understood. Walter Payton of the Chicago Bears and Chris LeDoux the country songwriter both died with complications of psc. The main symptoms are itching, jaundice, fatigue, etc and when the disease progresses then fluid will build up in the adbominal cavity. Not fun, but if removing my colon can settle some of this down I am all for it.

I have this liver complication, erythema nodosum, and that crazy eye inflammation associated with my colitis. All will go away except the psc when my colon comes out.

I hope that answers your questions but if you have anymore please ask.
Thank you all for your responses! I appreciate it greatly!
Posted 2/23/2009 7:47 PM (GMT 0)
yes it did thank you, i always like to learn new things, i'ma nerd,lol
Its amazing how many things UC can cause.
Posted 3/2/2009 4:58 AM (GMT 0)
Well it is official. I just wanted to let you all know that I scheduled my surgery. The soonest I could get was April 17. I am counting down the days! Thanks for all the info!

Posted 3/2/2009 5:18 AM (GMT 0)
thats awesome! thats the same day i had my surgery! two years ago, i call it my new birthday cause thats when i got my life back!

YAY for you being healthy again!

Posted 10/14/2013 4:50 PM (GMT 0)
I am 46 and I have had PSC and UC since 2005. On my yearly colonoscopy i was found to have a dohm lesion which after biopsy was found to have dysplastic cells, so the decision was made to have a subtotal ileostomy, I had the surgery on September the 18th. Surgery went well, and I now have a stoma bag which is taking a bit of getting used to. I have my follow-up appointment with my surgeon at the end of the month, then the decision has to be made whether or not to have a pouch system reversal or to have the stoma permanently, its a difficult decision as my colorectal surgeon thinks i am not the best candidate for reversal but the liver clinic is adamant that a stoma is a very bad idea, due to varices that can occur when the liver fails. If anyone has had a reversal that also has PSC I would love to hear their experience.
Posted 10/16/2013 3:29 PM (GMT 0)
emfraesto

I don't have PSC, but I am about your age and had a polyp removed a few years ago in the context of colitis and have had small focus of dysplasia detected since, so am considering this surgery. I have differing opinions on whether the polyp was DALM or not. Differing opinions on how significant the small focus of dysplasia is in the context of 100+ biopsies some targeted, and all triggered by a polyp. Very confusing stuff.

So one thing that is unique about me is that I have a colitis that has been very responsive to antibiotics. Especially Vancomycin. This was discovered sort of by accident... did not have c-diff (atleast never tested positive for it). Vancomycin was extremely effective. As was/is fecal transplant.

So if you have PSC you may have heard people discussing Vancomycin. Perhaps you even considered trying it... I don't know. It's very controverisial. Why is this important for J-Pouch?? I don't know if it is. But it's been in the back of my mind. IE if my colitis has a strong bacterial aspect is there a possibility the bacteria will just move to the pouch???

Pouchitis seems to be somehow related to gut bacteria... at least as far as I know the treatments are antibiotics... and one of the experts (Bo Shen) apparently recommends the Palio diet for J-Pouches.

I have no experience with this at all.. just sort of sharing my thoughts... If I have the surgery I am hoping to find a group that is very knowledgable about Pouchitis, the causes, how it relates to gut bacteria,. So if you suspect at all there is a "micro-biome" aspect to your condition this is an aspect to explore. Whether or not the pouchitis could be controlled with pro-biotic and specific anti-biotic strategies.
Posted 10/16/2013 3:54 PM (GMT 0)
emfraestobo

btw... why do they think you are not a candidate for reversal?? Just because of PSC or something else??
Posted 10/16/2013 7:07 PM (GMT 0)
ole363
thanks for the reply. I have been reading over the vancomycin information as i only first heard of this yesterday on this website. I will definitely mention it to the liver clinic on my next visit. They think i am not a good candidate for the pouch as I had very frequent bowel movements before the operation and that patients with psc has a higher risk of pouchitis. They decided to take my colon out because of the Dalm, it was explained to me that as the dalm is flat they couldnt just remove that as you do a polyp. I have just had the oncology back and their was no cancer.
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