Re: Colectomy Help- reply to Serbina

[Guest guest]

Serbina,

I too was on prednisone for years for my UC...I was dx in 95 with the UC and PSC two months later.

I had my ileostomy done almost two years ago...it is a scary decision to make, butt....I am glad I made it. I had thought for years that the worst thing that could ever happen to me was to have a ileostomy pouch...guess what, it is not the worst thing that could happen to me, it was the colon cancer that was the worst. That God it did not penetrated the colon wall and spread. I didn't have to have any chemo...thank God again. I am seeing an oncologist every 6 months to keep track of everything and get Cat Scans of the area. Let's hope that you have not had to deal with all that.

I had the pouch for 3 months and then I had the reversal where they connected the ileum back to my small intestines. The surgeon created the J-Pouch in the first surgery which acts as a storage tank. Everything seems to be working good....a little too good. I was going at least 10 times a day at first and some days were a little more depending on what I ate. Now I am down to about 5-7 a day and sometimes less...again depending on what I eat. I try to stay away from too much fatty foods.

Are you going for the J-Pouch and get reconnected after all is done? The main thing I would ask the surgeon is how much rectum will he be leaving in tact. Will he leave the inner and outer sphincter muscle. I wish my surgeon would have discussed that more with me. I would have insisted on leaving the inner sphincter. They don't want to leave a lot of the rectum, maybe 5 inches. They are concerned about the possibility of the UC reoccurring in that small section.

I was taking Imodium for a while which didn't help too much so I got a perscription from my surgeon for Lomitol which helps much better. I was taking it 3 times a day now I am down to only one time a day...taking it before bedtime.

If you want to talk more about it you can send me an email or we can chat on the phone.

Good luck and God bless you and keep you safe.

Larry, almost the big 60, Baltimore, UC, PSC 95, Degenerative Disc Disease, 2000, Hypothriod 2008...and who knows what else.

RE: Colectomy Help

I have no personal experience to provide you, but there are numerous Yahoo! groups (http://health.groups.yahoo.com/group/ostomysupport/,http://health.groups.yahoo.com/group/jpouchsupport/ for example). There are also local chapters of www.ostomy.org (http://ostomy.org/ostomychaps.htm). If you elect j-pouch, www.jpouch.org has been favorably mentioned many times. www.CCFA.org (http://www.ccfa.org/info/surgery/surgeryuc) is a great resource for all issues of the GI flavor.

Prednisone rules; it is a POWERFUL drug (and prednisone sucks, too).L

I’m on midnights L, but this is my day off J You’ll hear from many people on this=2

0topic tomorrow.

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

From: [mailto: ] On Behalf Of serbrinamv (AT) sbcglobal (DOT) net

Hi everyone

After a long and hard decision to make, I have elected to have a colectomy. I have exhausted all other options. I have been on predisone for years and it is the only medicine that somewhat controls my UC. I am meeting with a surgeon in a few weeks to discuss this option. I know many of you have had a colectomy and I would appreciate any feedback or questions that I should be asking the surgeon. I feel like I'm making the right decision, especially since I'm still in my early20thirties, but of c

ourse I"m still somewhat scared. Thanks for all your help.

Serbrina UC '01/PSC '04

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