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Ulcerative Colitis
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Posted 9/3/2015 8:47 PM (GMT 0)
In the blink of an eye the other day, I hit my breaking point with my UC. It's been 15 long years and the countless bathroom accidents over the last few months have taken my quality of life from me. Next friday I'll be seeing the Surgeon for the 3rd time and scheduling my JPouch procedure. I know I'm at a high risk due to my previous surgery but with the point I'm at now, how much worse can it actually get. I know my pouchitis test shows high (55) but I have to do something. I can't sit and keep asking myself "what if". I'm out of meds and a prisoner to my home wearing depends day in and day out. I know I'm in for one hell of a rough time but I've been knocked down before by this disease only to stand back up. I'll post updates as I get them.
Posted 9/3/2015 8:59 PM (GMT 0)
Good luck!
Posted 9/3/2015 9:25 PM (GMT 0)
It's gotta improve
Posted 9/3/2015 9:28 PM (GMT 0)
You have to do what you feel is right for you...the way you've been living is no way to live and I totally get where you're coming from...best of luck with it all!
Posted 9/3/2015 9:29 PM (GMT 0)
Good for you!! Fifteen years is a long time to put up with this disease.
Posted 9/3/2015 11:50 PM (GMT 0)
Good luck. I hope things end up being easier than you anticipate. I think your making the right choice.
Posted 9/4/2015 12:47 AM (GMT 0)
Happy that you were able to get up the nerve to do something :) I know you've been struggling for a long time. I think I would be better off with this pouch permanently than with accidents and unpredictability. I am not all gung-ho about it like some people, but it has freed me from the house. Definitely improvement in QOL. It's also temporary so that's important to remember. I don't think I was going to be one of the lucky ones to end up with long-term remission. I never had more than a year, and even in the LONG year remission, it was bumpy at times.
Posted 9/4/2015 11:15 AM (GMT 0)
Good luck, and a big good riddance to uc and all of the troubles uc has given you over the years. I hope everything goes well and you're quickly on your way to freedom. Keep us posted :-)
Posted 9/4/2015 12:23 PM (GMT 0)
That's kind of how I arrived at my decision; one day it just became clear that I had no quality of life. Good luck with your consultation and keep us posted.

Sue
Posted 9/4/2015 1:24 PM (GMT 0)
I had one of those moments too. I woke up one morning and said that's it I'm done with this disease! I couldn't live another day feeling like road kill. Best decision I ever made! Best of luck!
Posted 9/4/2015 2:05 PM (GMT 0)
I am happy with my decision to have surgery, I was basically begging for surgery near the end.

Don't worry too much about Pouchitis, I've never heard of a test that could predict it unless they thought that you had CD. I have chronic pouchitis and even when it is not being treated it is nothing compared to UC. I've heard people refer to pouchitis as "UC-lite". When I properly treat it with antibiotics I don't even notice the pouchitis.
Posted 9/4/2015 3:09 PM (GMT 0)

ks1905 said...
I am happy with my decision to have surgery, I was basically begging for surgery near the end.

Don't worry too much about Pouchitis, I've never heard of a test that could predict it unless they thought that you had CD. I have chronic pouchitis and even when it is not being treated it is nothing compared to UC. I've heard people refer to pouchitis as "UC-lite". When I properly treat it with antibiotics I don't even notice the pouchitis.

I can't remember the name if the test, I'll need to check with the surgeon. It shows if you're more prone to developing pouchitis. I was told the optimal number is below 19 and mine was 55. I don't necessarily mean I'll get it but makes me more prone to it.
Posted 9/4/2015 3:29 PM (GMT 0)
Sounds like the best decisionmconsidering all you went through with your last surgery.

I look forward to your updates and your continued healing towards a new life without UC.

q
Posted 9/4/2015 8:26 PM (GMT 0)
It's that PANCA test. Mine had terrible results too. My surgeon did say the overall failure rate is 2%, pouchitis issues and all. I mean 2% end up making the decision to go back to an ileo. Not sure what the rate of "Happy, inflammation-free people" is.
Posted 9/4/2015 11:34 PM (GMT 0)
I don't think we even had the test, but no pouchitis so far. Only good, solid, day by day, month by month improvements.. Some times you just have to take a leap of faith. Get with the best surgical team you can access, do your work- do what they say to-in other words, and let your mind focus on healing. Have a forward thinking goal, plan your future, visualize success. You deserve the peace that comes with healing.
Posted 9/10/2015 10:38 PM (GMT 0)
Tomorrow is my appointment with my surgeon to schedule the surgery, I'll post updates as I get them
Posted 9/11/2015 12:01 AM (GMT 0)
Good luck!
Posted 9/11/2015 12:45 AM (GMT 0)
Heading in that direction too. Best of luck and keep us apprised.
Posted 9/11/2015 5:03 AM (GMT 0)
I myself will also be heading in that direction, what hospital you getting it done at? Local or traveling? I'll be heading out to cleaveland soon for my consultation on surgery. I want this disease out of me!
Posted 9/11/2015 5:18 AM (GMT 0)
You-See. I just noticed in your signature that you take a high dose of melatonin. Not sure how long you've been on it, but I had UC problems after increasing my melatonin from 1 mg to 3 mg. Have you tried stopping it to see if it helps? It is a hormone and hormones mess a few of us up.
Posted 9/11/2015 11:58 AM (GMT 0)

You-See said...
I myself will also be heading in that direction, what hospital you getting it done at? Local or traveling? I'll be heading out to cleaveland soon for my consultation on surgery. I want this disease out of me!

I live in South Florida and I'll be staying local. My surgeon works out of Boca Regional. This is the link to his bio from the surgery site...

http://www.sapbc.net/our-doctors/andrew-s.-ross/
Posted 9/11/2015 3:19 PM (GMT 0)
Is this the surgeon who did your sister's pouch? Please let us know how it goes :) Good luck!
Posted 9/11/2015 6:31 PM (GMT 0)

notsosicklygirl said...
Is this the surgeon who did your sister's pouch? Please let us know how it goes :) Good luck!

Yup the very same :)
Posted 9/11/2015 6:33 PM (GMT 0)
I met with the surgeon today and scheduled my JPouch procedure for October 14. He mentioned that due to my previous surgery, he may not be able to do a pouch and I'll end up with a permanent bag. At this point, anything is better than what I'm dealing with. He went over all the risks associated with surgery, possible impotence etc. He's having a urologist come in and put stents in so he can see the nerves better. I have 33 days to build up my body to prepare for the surgery. I lost so much weight and muscle mass the last time and i want my lungs as good as possible. I had horrible fluid buildup the last time
Posted 9/11/2015 7:09 PM (GMT 0)
Best of luck
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