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I would like to know if anyone has done elctive surgery for UC.  I was diagnosed 3 years ago and I'm starting to think I can't fight this disease to much longer.  I have tried medication, diet, holistic teas and acupuncture.  If you can share your stories I would appreicaite it. Thank you.

 Reply posted for bzmarty.

HI, I WAS WONDERING HOW YOUR DAUGHTER WAS FEELING POST SURGERY? AND HOW  YOU ARE DOING POST YOUR DAUGHTERS SURGERY?

 Reply posted for Alex7.

HEY ALEX7, HAVE U TRIED A PRODUCT CALLED VSL#3(GOOGLE VSL#3) IT IS A PROBIOTIC IN A POWDER FORM WHICH AIDES IN DIGESTIION AND HAS HELPED MANY INCLUDING MYSELF , WITH UC ,IBS, AND ILEO POUCHES. I AM  POST SURGERY BUT WISH IT WAS INTRODUCED TO ME LONG BEFORE THAT. IT IS WORTH A TRY BUT IF NOT SURGERY HAS BROUGHT ME BACK TO GIRL I NEW BEFORE THE UC TOOK OVER.

 Reply posted for Alex7.

 Hello.  I underwent might you say elective surgery for Ulcerative Colitis on May 7th, 2008.  I had Ulcerative Colitis for 5 years and have had 2-3 flare ups of the Ulcerative Colitis always treated with IV steroids and hospitalization until March of this year when I was hospitalized for 2 weeks with diarrhea(blood and mucous) 15-20 times/day unresolved with IV steroids the only thing that stopped the diarrhea was IV Remicaid I read the side affects after recieving this medication and it can cause TB, Lymphoma, MS, decreased immunity  all these side affects really scaird me.  I talked to the doctors at the Cleveland Clinic and decided to have the surgery for a JPouch, I had the first of 3 surgeries in May and I am scheduled for November 7th for formation of the Jpouch then in Feb for the take down.  I have to have 3 surgeries instead of 2 due to recieving the Remicaide.  This was a surgery that was scheduled so many people have to have this surgery in an emergency I look at it like I did it on my terms approximately 25-40 percenct of Ulcerative Colitis patients eventually have to have surgery why not do it on your terms, also this risk of Colon Cancer goes up each year after having Ulcerative Colitis for 7 or more years why have this in the back of your mind.  My energy level is finally returning to normal.  Please email me if you have any questions.

                               Holly

 Reply posted for Alex7.

what have been your serious side effects from medication?  After taking steroids for almost a year now I still can't seem to get off of them.  I've gotten a reacion to Imuran and personally, I don't want to try what my dr wants me to do next, Remicade.  I am ready for surgery because I just want my life back like last summer before diagnosis of UC.  I was told that I have a very severe case of UC and need to get off steroids NOW.

Any advice?

Do they actually take out the WHOLE colon or just the bottom portion that's affective with UC? 

 Reply posted for stspaeth.

Thank you for your response.  Between the pain, bleeding, loss of weight (25 lbs)  and going to the bathroom up to 15 times a day I feel surgery will be my next step. I have tried every medication-only to have seriuos side effects.  I'm going to meet with 2 surgeons in the near future.

 Reply posted for Alex7.

I've been dealing with UC for 21+ years now and am thinking of elective surgery as well.  I've had some awful times, losing 60 lbs in the beginning and a lot "normal" times as is the case today. With proper medication and monitoring I've had no serious problems/bleeding for about 3 years.  Drugs, you name it, I've tried it.  I've never tried the unconventional medicine or therapy route..not a believer.  Currently I am on a low dose of 6-MP and Asacol, have a colonoscopy with tons of biopsies once per year, and things are great.  I've met with the surgeon - who of course says do it now.  I spoke with my Dr. last week and he says that I may not be as happy with the decision as folks are that are sick going into the procedure.  It's a huge decision to make, several weeks of downtime, and a lifetime of different problems/adjustments. Things impacting my decision are going from 1 normal BM a day to averaging 5 (runny/watery) a day post surgery. If I had some dysplasia, was not in "remission", then I would go for it.   I've had/been through all the ups and downs of this disease enough now.  I'm in a wait mode to see if I get "sick" again or if my test results come back positive.  My advice is to find the best of the best surgeon in your area, someone who has done hundreds/thousands of these, I'll be getting the ileoanal anastomosis.  Have a face to face with them and get the straight facts.  Talk to as many people as you can who have had the procedure, a forum like this is helpful. Bottom line is that it is a tough decision, the known vs. the unknown.  If you are truly miserable and have had to alter your life to a point where it your disease is controlling you then the decision might be easier. I've been waiting for a "cure" or a safer regime of meds for 2 decades and haven't seen any progress to speak of. I'm one flare up away from taking the plunge myself.

 Reply posted for Alex7.

I had ulcerative colitis for 8 years - I had really good times and really awful times. I've always been in awesome shape, and so that hasn't ever come up as something to try - because it's something I love to do. I've tried almost every med on the block, I've done natural therapy, I've done accupuncture - some of it was awhile ago - because I was too tired to go anywhere to do anything. 

 Reply posted for Alex7.

My daughter was diagnosed 12 years ago when she was 12. She has had pretty much all the medical treatments known and has slowly become refractory or allergic.  She will have a colectomy next week. As her Mom I am heart-broken. As a nurse, I know she will have a better life even if it will be a different life - living with an ostomy perhaps for life.

I will try to post what happens to give you a better idea.  3 years is  a long time, but then again, my daughter was in remission for 7 years and has been battling this since 2005 with only 6 - 8 months reprieve. I know it may not help you make up your mind, but, if I were you, surgery would have to be my last option - and I would try tea, aloe, diet as well as my prescribed medicine.  But like my daughter points out - I am not the one living with the disease. 

Good luck and may God bless you and give you strength and courage.