In Doubt

I have had UC for 17 years off and on. I was diagnosed at age 16 and immediately put on predisone, sulfasalizine, and asacol.  From ages 19-26, I experienced slight remission (formed stool w/ some mucous but zero blood & pain).  I cannot seem to get back to "that place"- I was a smoker and took herbalife products back then.  I am now 33 years old.  I have been on 6mp (mercaptopurine) and Lialda for the past 7 years along with Cortenemas and Canasa/ Rowasa off and on as needed. I was on cort enemas last August and again last March but once I got off the corts my symptions came back fully.  I am at the point right now where I am taking my meds (6mp & Lialda) and trying to keep a good diet and get pleny of rest as I am very fatigued and achy.  I tried Aloe, Align/ Probiotics, and Vitamin D but stopped since I have been in a real real bad bloody flare.  I am very doubtful I can turn this beast around and am contemplating surgery.  I was wondering if anyone out there has had the surgery, when, and where, and how are you doing now?

6mp 75mg

Lialda 1.2 GM

Canasa daily

TrueJoy said...
I was wondering if anyone out there has had the surgery, when, and where, and how are you doing now?

Welcome on board,TrueJoy,

Plenty of people here have experienced the surgery, and I'm certain they'll soon jump in and share their success stories.

Check these out:

http://www.j-pouch.org/

http://www.mayoclinic.org/colorectalsurgery-rst/

Good luck to you

Hi !

I had a really severe case of UC that was through out my entire colon. I tried all the meds and diets and nothing worked so last June I had J pouch surgery. Best decision I ever made!! I love my j pouch and I am 100% healthy now. Everyone has a different expeirence with this surgery but it has a 95% success/satisfaction rate. There are a minority of folks who will have problems afterwards. Also some of the people who do have problems were mis-diagnosed and actually had Crohns. Surgery doesn't work if you have Crohns desease.

The sugery(s) are tough...I won't sugar coat it...but SO worth it in the end. I was really really sick so anything was better than going on like I was.

It also all depends on how bad your UC is and what your quality of life is and only you know that. If your UC is really bad and you are tired of all the endless meds that don't work, then surgery may be for you. Have a consult with a really good, reputable colorectal surgeon to get the facts.

I had surgery last November after a severe UC flare landed me in the hospital, prednisone stopped working and the infusion of Remicade I tried caused me horrible joint pain. I said enough is enough with meds. Along with being on Asacol and Rowasa for over five years, I also tried some diet modifications and probiotics to no avail. You have to look at your personal values and goals and the quality of life you long for, and choose the treatment type that you feel will best get you there. It is an incredibly personal decision and is going to be different for each person. I didn't have the aversion to the thought of living with an appliance that some people seem to. I chose a permanent ileo as I personally felt that it would most successfully get me back to the active life I wanted to live where I am out hiking, rock climbing or snowboarding frequently... sometimes in some pretty remote places. I have not been disappointed with my choice and life is really great for me post surgery so far. My surgery has allowed me to do all the things I love again. There were hard times in the first four months, but once I healed and learned how to deal with my appliance, things got so much better. No more pain from UC or medications! No more exhaustion and fatigue. Here is a link to my story: http://ostomyoutdoors.wordpress.com/2011/05/10/welcome-the-story-of-my-outdoor-adventures-as-an-ileostomate/

Best Wishes with whatever route you choose.

-Heidi

Thank you all for your replies. I really do appreciate you taking the time to get back to me. 

quincy, I had a scope last March 2011, it indicated left sided ulcerative colitis though scopes in the past showed full especially in my teen years and late twenties.  However current day it is manisfested in the sigmoid region- 15 inches. I am fully inflammed right through to my rectum- my GI doc refers to that as proctitis.  I am going to the bathroom about 15 times a day- blood and mucous only, barely can I pass any formed stool and if my colon allows a tiny formed stool (sorry to be so descriptive) to pass it practically kills me.  I am severely fatigued and my knees, shins, and thighs ache as well.  I take canasa (like rowasa but suppository form) once per day in addition to the lialda and 6mp.  Typically I quit the canasa cold turkey but the Cortenemas I taper. The past 3 days I have not eaten much, just fluids. I am hoping to slow things down.  I feel my body is changing. The things I use to do to get through a flare (a lot of rest, low food intake/ bowel rest, additional medicine) are not working.  This is the longest flare I have experienced in years. It started in January 2010, I was on vacaction, I had been drinking aloe vera (which I had done in past and it worked) for a few weeks before my trip but when i was away I became severely bloated, constipated, and only mucous and blood passed.  I have been struggling since then. 

I am so glad I found this forum and appreciate the feedback and help.  Thank you so much for listening.