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My question is when did you reach your breaking point and the doc finally conscented to surgery? I have been in an active flare for 5 1/2 years, swollen and inflammed intestine, I've had UC for 15 years, multiple iron infusions and am now on a restricted diet for at least a few days. Most meds have not worked or have stopped working and I am tired of this. I'm ready to get the surgery... scared but ready.

 Reply posted for Sblumcpa.

Sblumcpa,

 Reply posted for tarheelmama.

I reached my point after 3 and 1/2 years of failry constant flair-ups with UC.  I went through the entire medication inventory.  Nothing worked, or did not work very long.  The medications were not good to me. It impacted me personally and professionally.You do not want to wait until your health is at risk.  If you can not lead a normal life and you find yourself unable to do things for fear of sudden urges then it is time to consider the surgery.  The doctors would tell you it is time when you become steroid dependent or pre cancerous.  I'd tell you to do it when you have tried all of the reasonable drug therapies.

2 and one half months after having ostemy reversed things seem to be working fine.  I had wished I had done it a year ago.  Surgery to remove colon and construct J-Pouch was not a walk in the park.  I am 43 and it required some real down time to recover. The younger and healthier you are, the easier it goes.  I did not have any major complications from surgery, but my health was ok.  But, even with the temprary ostemy bag after surgery #1 I felt freedom that I had not known for more than three years.  No more urges.  I got my life back.  With the Ostemy reversed in surgery #2 and all of my plumbing hooked up I now feel terrific.  When you have to go you don't have to run for the bathroom.  I may go on average 5 or 6 times a day.  I make myself get up at night to go once.  Metamucil helps slow things down as well.  It can take your body about a year before it completely adjusts, so you can expect to do even better over time. Don't be afraid to get your life back. 

 Reply posted for Angie99353.

Angie-

I too am considering surgery but am very scared of living w/o my colon despite the misery it gives me. What is life like with the J-Pouch? how often do you go to the bathroom and how hard is it to adjust?

 Reply posted for tarheelmama.

Hi!  Durning my first major flare-up, I knew a colectomy was in my future.  My first major flare was a life-threatening event - my colon was unresponsive to all medication.  I landed in the hospital for two weeks, received six units of blood, and my condition was not improving.  My doctor told me I needed to consider a colectomy.  I was so worn down by the illness I was ready for anything.  Losing my colon had to be better than what I was going through.  Somehow, after being told about a colectomy, my body began to heal.  But I knew, someday a colectomy would be my future.

Four months after leaving the hospital, finally coming off the Prednisone, while taking the maximum dose of Asacol and enema medications, I began to flare again.  This is when I knew it was my time for a colectomy.  I could not live through another round of such flare-ups.  My gastroenterologist and my surgeon both told me they thought I made the right decision.

It has been two years since my ileoanal pullthrough surgery.  I'm so happy I did it!  I have my life back!  I no longer worry about what I will see in the toilet when I go to the bathroom, I no longer worry about when that next flare will come and how bad will it be.

Since my surgery, I do struggle with maintaining hydration. I follow all the rules and suggestions, but I still struggle.  However, I gladly live with that rather than UC and I would opt for surgery again if I had to do it all over again!

From the research I've read online, my struggle with dehydration does not seem to be the norm.  Most people seem to not struggle as much I with dehydration.  I wholeheartedly recommend the surgery.

-Angie

 Reply posted for tarheelmama.

I ended up waiting 8 years...past pharmacy school and working for 2 years..its a decision i made and i will never regret it! its been so long since i knew what it was like to be without UC...

 Reply posted for tarheelmama.

I totally understand tired and scared but ready.  12 years of Crohn's Colitis for me without a quality remission.  Make sure that you get the best option for you and what healthy gut you still have.  Ask and be persistent about every type of surgical option. My brother was able to get a Jpouch and has a very happy life 8 yrs post surgery with no complications after 3 months post surgery.
Best wishes, and make sure to take good care of you & your emotional wellbeing!

 Reply posted for tarheelmama.

My son had crohn's colitis. At 23 he opted to have his colon removed. Nothing he tried had worked for very long and he was tired of feeling sick, missing out on life and always wondering when the next big flare was going to happen. 

While his new reality is not perfect, he has his life back and wishes he had done it sooner.

Since your diagnosis is UC, you might also have the option of J-pouch or another form of internal continent system. Do some research on these.

You will know when you are ready.