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Posted 8/2/2007 9:52 AM (GMT 0)
Hello. I've recently been diagnosed with ulcerative colitis. I've read a lot about this disease and I also note that about 1 in 3 people with UC eventually need their colon removed either for quality of life purposes or for cancer concerns. I'm very new to all this and the idea of losing my colon initally freaked me out (a lot!). But as I've accepted me disease I think I've mellowed to the fact that such removal could in effect 'give you your life back' and 'free you from heavy heavy med use'.

I was just wondering whether anyone had comments on this? What was it like to have your large intestine removed? Are you happy with the decision? Would you even have done it earlier if you'd kown the benefits or has it not changed your life much.

Any advice for a newbie like me would be so helpful.

D

 

Posted 8/2/2007 1:50 PM (GMT 0)
I have a feeling the 1 in 3 figure might be a little high. All the figures I read tend to read more like between 10% - 15% of people diagnosed with UC ever have to have surgery.

My perspective - having a bag is much better than having UC. I was running to the loo (and sometimes not making it) 20+ times a day, was on 21+ tablets a day plus enemas and basically had no quality of life whatsoever. My bag gave me my life back!

I've spoken to literally thousands of ostomates over the years and the vast majority say to me 'if I'd only known how well I would feel after surgery, I wouldn't have tried to put it off for so many years'.

Surgery is a last resort and only when you have reached the point where no meds help at all and your quality of life is nil do they usually consider it (unless signs of dysplasia show up). Chances are you won't ever need surgery, but it's good to find out about it 'just in case'.

Good luck.
Posted 8/2/2007 3:39 PM (GMT 0)
Thanks for your reply. That's the impression I get from talking to the ostomates who drop by the UC forum. Being on heavy meds for half of my life scares me. Sometimes I kinda wonder that if things did get bad wouldnt it be better to have a pain free, med free life with the surgical technique rather than missing out on the good years or even the later years of life due to some complication with UC or meds. I realise its a personal decision and is blanced on a lof of things.

Thanks for your insight.
Posted 8/2/2007 5:06 PM (GMT 0)
I know now and only now how sick I really was. Suffered for 12 yrs with UC and kept compensating by taking drugs and more drugs and higher doses of drugs only to realize the drugs were causing many side effects that made matters worse for me. I came to this site and read the stories and of course all that stood out to me were the horror stories. I will tell you my surgery was no fun but I did survive and my quality of life is fantastic. You may or may not know when the time is right for you but just remember there is that option of being free of a terrible disease when you are sick and tired of being sick and tired.

Best of luck on making the right choice at the right time.

Posted 8/2/2007 11:07 PM (GMT 0)
My husband just had his colon removed on June 11th.  He had UC for 34 years and managed rather well with medication until a year ago.  He had a severe flare and had to be treated with prednisone and eventually Remicade.  He had an allergic reaction to Remicade so his options were limited.  We went to the Cleveland Clinic and saw Dr. J.P. Ashkar who is a GI doctor and he explained everything to my husband about what the chances were for cancer etc.  He didn't rush the idea of surgery but gave us some booklets to read and spent an hour with us discussing all of the options.  If you are able to travel to the Cleveland Clinic even for a GI visit, I would highly recommend it and I would recommend Dr. J.P. Ashkar (his father is also on staff in the GI department but ask for J.P.)

My husband is learning how to live with an end ileostomy and is progressing nicely.  He is glad to have gotten rid of his very diseased colon.  His colon was far worse than we ever expected and it was just a matter of time before something serious happened.  We believe Dr. Ashkar's advice help save my husband. 

Posted 8/3/2007 2:18 AM (GMT 0)
i had UC for 8 years before i had surgery and I wish now that I had had it the day i first got sick, and then i wouldn't have wasted so much time! I think the number is actually 40% that have to eventually have their colon removed. Life is so much easier now, sure it's kind of annoying to have to empty the thing, but nearly as annoying as having to go to the bathroom 20 times a day!
Posted 8/4/2007 2:36 PM (GMT 0)
Had I known how much better life is with an ileostomy, I would have done it much sooner!
Posted 8/5/2007 3:39 AM (GMT 0)
Yeah. i can never say i " love the bag". But it is a lot better than i was before. Used to plan my days that i'd actually go somewhere around where the bathrooms were. Usually had to go....better yet, run to the bathroom around 20 times a day. Got really painful in early 06. Finally couldn't deal with the pain anymore and went into the hospital. My GI basically said he didn't think there was anything left to do. He found a sugeon to do it, but i ended up in the hospital for almost 2 weeks before they finally took it out.

  As of now i'm glad it was removed.  Early on i really had a hard time thinking of life with this bag. Now it's just part of my routine and it's much better than the pain, sickness, running to the bathroom and sometimes not making it, getting all stressed out because the bathroom you've stalked out is being used and you REALLY need to use it. Whatever.  THe Meds did more of a job on me than any problem the bag could ever come up with.

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