UC versus Ileostomy???

     Hi db!  I will be glad to answer your questions from my standpoint. 

     I suffered with UP (proctitis) for twelve years.  I was 52 yrs old when diagnosed in 1998.  In the beginning years, I did enjoy a few remissions, but, with time my disease got progressively worse.  I ran the gamut of meds...6MP, Remicade and then Humira...all failed.  Colazal was a "maintenance" drug for ten years.  I became prednisone dependent and my health was deteriorating rapidly.  So, at the age of 63, I found a colorectal surgeon online.  Yes, online because my GI doctor refused to refer me to one.

     I had surgery, total colectomy with end ileostomy, on June 28, 2010 by Dr. Robert Fry at Pennsylvania Hospital in Philly.  I was not a candidate for j-pouch because of my failing health.  The surgery, I am told, lasted an hour and a half.  I was hospitalized for 11 days because I had a few setbacks...for one, I ate too soon, at the suggestion of a resident surgeon who wanted her patients out by the 4th of July.  Big mistake, everything came up and I had to have that nasty ng tube placed back in.  about five days later, my blood pressure dropped, I had an elevated temp and rapid heart beat.  Sounds like sepsis, but I had exceptional care and all was well the next morning.  That being said.....I am now two years post op and even with those post surgery setbacks, I would do it all over again.

     Yes, I have my life back.  Where pre-surgery I took anywhere from 17-25 pills daily, had uncontrollable high BP and type 2 diabetes from the prednisone....I now take only 1 pill a day and that is for my BP which is very well controlled.

     Since I am quite a bit older than you, it took me about 6 months to feel 100%.  However, I was out and about only a few weeks post op.   The best of luck to you!!!

If I could go back I would have had surgery 8 years sooner!
Surgery is not fun, you said you knew that already. It hurts, it takes a while to recover and it does have risks. But its worth it to have a life free of UC! Having a bad isn't bad, after a while you will forget it is even there. It won't affect anything you wear, eat or do.
It certainly gave me my life back! My surgery was over 5 years ago and I've gotten to do so many great things since then, ones I could never do with UC. I've been on cruises, to Disney, to the beach to bars and clubs with my friends. The little things each day are just as important though, I can sit in car line, jump out of bed and leave the house in 10th minutes, I can take my kid places. Not only did I get my life back, my family got a new life too!
As for the healing, I was in the hospital for a week, came home and was useless for another week, then slowly started getting back to things. My surgery was in April, in June we went to the beach. I wasnt back to preuc health but I was way better than the way I felt with uc!
I'm sure you know its possible to have adhesions and obstructions, I had one a few months ago. Had to have an additional surgery, and even with that I'm still glad I had surgery!
Good luck!

I have had a lot of complications since my surgery, and it wasn't easy emotionally for a while. Now that I have gotten over those hurdles, I am feeling better than I have in years. I didn't realize how exhausted I had really been until now.

Would I go back if I could?
Absolutely not. I was in denial about how much UC had damaged my life. Looking back I think I was a fool for not doing it decades ago.
Is an ostomy really ALL that bad?
My temp ostomy was great. Due to the circumstances of my first surgery it took six months before I felt somewat normal. Once I got my strength back I was kayaking, canoeing and swimming. Getting back to a good sex life was not a problem. The loop ileo was horrible. I spent three months at home because I could not get any bag to stay on reliably. The temp ostomy was placed too close to my navel for a good wafer seal. Be sure to choose your stoma location! Do not assume your surgeon will put it in an easy to seal place.
Do you believe the ostomy gave you your life back? If I had stayed with the temp ileo or if I had an end ileo the answer would be yes but I just had my ileostomy reversed. So far, the j-
pouch is better than I imagined. Recovery time has been two weeks. I probably need one more week before I will be able to pick up the pieces of my life and start to rebuild it.
I hope this helps your decision. Good luck!

db

I have a permanent ileo. Would I go back to being sick? NO. Would I go back to being scared to go anywhere? NO. Would I go back to knowing where every public restroom is? NO Would I go back to stopping at every rest stop on the freeway? NO. My ileo saves 1/2 a day going from Michigan to Florida.

You mentioned complications from surgery. At home 7 days after my colectomy I developed peritonitis. I live in a small town. The hospital could not handle it and I was flown by helicopter to a hospital in the Detroit area. One foot in a grave and the other on a banana peel.....but I made it. The only thing I remember is the surgeon saying "We haven't lost anybody yet and you are not going to spoil our record".

Had the first surgery November 7, 2007, and drove to Florida end of January 2008.

Was the colectomy the right decision? Absolutely!!!!!!!!

Dan

 

I would take an ostomy any day over my UC days. But I would take my UC days anyday over my jpouch days. I felt better just 2 days after my first UC surgery. And was back to work in about 8 weeks. I had been extremely sick, hospitalized on on IV steroids, malnourished, and anemic prior to that first surgery. It was an emergency surgery. Some of the later surgeries (think I'm up to 9) I healed even faster because my body was in better condition going in. I agree with summer, strengthen up - both core and upper body prior to surgery if you can.
I have done almost anything with my various ileostomies than you can imagine - hiked, ran half marathons, swim regularly, pilates, lift weights, travel, and best thing yet.. eat nearly every single thing I want. NO limitations - unlike UC and unlike the jpouch.

Hi, My son had his colectomy almost three years ago. He was very sick going into surgery and it was a long hard road with numerous complications but it the end it was so worth while. The difference boils down to being sick with UC or healthy with an ileostomy or J pouch. It is not until you have regained your health that you will realize really how sick you were and how UC had impacted your life.

Best of luck

Had UC and suffered for WAY too long! I had an emergency ileostomy, recovery was long, but no pain after surgery because of all the medcations. I had no complications, well at least I don't remember.  Best Thing I ever Did in my life.  You sound like a young person, don't live your life on all the UC medications, I have permanent side effects from all the prednisone.  I may have a different life now, but I can live my life without being sick!  Go For it and don't look back!

Renee