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Hey all, I'm new to the site. Actually I found the site shortly before going in for my surgery in December 2007, but I'm just now checking out the forums.
I've had UC for almost 20 years. None of the medicines we tried worked for me, but I was able to get on with my life by really watching what I ate and following some strict rules. About 4 months ago I was diagnosed with PSC, and a month later they found colon cancer. I had my colon removed and a j-pouch built and I'm just waiting for it to heal now so they can do the reconnection surgery. So far things have been really smooth sailing, surgery went great and recovery is going great too. Anyway, it's nice to have found a forum for this. This message has been edited. Last edited by: JimK, |
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Hi Jim, Welcome to the family.
Sounds like you are doing really well, though sorry to hear about the PSC. You couldn't have found a better place for support, advice and friendship. If you need any help with any aspect of this journey then just yell, that's what we are all here for. Take care One glass of red wine per day is good for the heart..... it's just that mine's a big heart so I need a very big glass!!!! D-| Cheers! |
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Welcome aboard; this is an awesome place for information and support.
Lori "...all things work together for the good of those that love Him..." Romans 8:28 |
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Hi Jim--
I checked out your blog... it all sounds so familiar. I also worked in software engineering for many years while I suffered with UC and then had my stoma (for 1 1/2 years) and then my j-pouch. I was a project leader, though, not a developer. But I hear what you were saying about the job and all of the long meetings... ugh. My experience is that it was much harder with active UC than with my stoma or my j-pouch. I hope that becomes your experience, too. Welcome! -Nicole |
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Thanks a lot everybody. It's nice to feel so welcome.
Nicole: Yeah, is there any other industry that has the quantity of meetings like software engineers do? It's amazing we get anything done. I'm actually doing less programming these days and more managing of the programmers, which has been cool. I guess it's about half and half now, which isn't too bad. Anyway, I'm glad to hear that the stoma and j-pouch were easier to deal with than UC and hope that is the case with me. I will say though that the "gurgling" of my stoma on occasion is likely to be embarassing. I know "everybody farts" and all that, but somehow having that happen while sitting in a meeting with a bunch of people that don't "get it" somehow isn't very appealing. |
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Jim, I feel your "pain" there with the noisy stoma, LOL! I had it happen to me many a time in meetings, but I learned the art of coverint it with my hand (and some pressure), and people just thought it was my stomach growling and churning really loudly! Then again, my technical team leader had a huge habit of farting in our room, as did one other really gassy guy... so too bad for them, they can deal with my noise!
-Nicole |
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I was in a crowded elevator showing property in a luxury high rise in Chicago one Saturday morning. It was dead quiet, half the people looked hung over, then my stoma started up. One person piped up and said looks like someone forgot to eat breakfast!
Erica |
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HEY JIM, IT'S HEDKANDIGIRL. I AM A NEW MEMBER TOO. I AM 39 AND HAD UC FOR 14 MONTHS AND IN DEC 89 HAD MY J-POUCH OP IN MANCHESTER, ENGLAND. I AM DOING GREAT AND ROO (MY POUCH) HAS JUST COME OF AGE!! SHE IS 18 AND STILL GOING STRONG. WOULD LOVE TO CHAT WITH YOU AND SHARE OUR EXPERIENCES.
X |
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Hi Jim
I read your blog and applaud you for actually writing it all down. I have played with a blog for along time and actaully your writing has inspired me to try again. I had UC for 25 year and finally realized that I had to make a change. Yes the gurgles and farting are part of my life now...but a whole lot better than the all too frequent accidents in all the wrong places with UC. People are much more forgiving of the "one man band" syndrome than the dirty diaper effect. As Erica wrote above the noise can be asily passed off as hungry tummy....you can always work it for a free lunch! Best medicine is to find some humor in it cause there is no running away from it. I have had my pouch for over 2 years now...never know what to expect the next day but thats life! I am curious though about the PSC. I was told by an MD that when you had your colon removed the PSC would go away - does that sound right to you? Nancy Nancy Pancolitis / UC DX:1980 Surgery: J Pouch Stage 1: June 2005 Stage 2 Sept. 2005 |
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Hi Nancy,
Thanks, I'm glad my blog has encouraged you. Another friend of mine said reading my blog encouraged her as well. I'm starting a trend... granted an already well established trend maybe, but still. LOL. There are so many times I think of some stuff I really want to blog about and then never get to it.... it's something I need to work on more. Anyway, good luck with it and send me a link when you get it going. I totally hear you about the noises being a lot better than the accidents... or living in a prison for fear of the accidents. About the PSC, that's a good question. I was told by my GI doctor that removing the colon would NOT make the PSC go away. But then my colorectal surgeon disagreed. Actually, he didn't say it would go away, but he did say that the effects that lead to the PSC diagnosis may have been enhanced by the cancer and once that and the colon are gone, PSC might not be a problem for me. At this point, I tend to believe my colorectal surgeon more, in part because I think he has more experience and in part because I like his answer better. |
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