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I am 26 years old and I had ulcerative colitis for 8 years. There had been times when I did very well - I have always stayed in excellent shape and running long distance helped to control the stress and anxiety that manifested itself in colitis flareups. I studied languages in college, and therefore studied abroad 4 times in and out of college. Each time I had a flareup, but I didn't let it get the best of me. I started thinking about surgery 3 years ago, with the last flare and more complications. Steroids make me crazy... really really awful. I went into remission finally, and things went back to normal. I started flaring again in October of '07. By early March I knew I was in trouble. I had been on asacol, cipro, Imuran, had several remecaid infusions. Tried everything. I refused steroids and made the decision to have my colon removed. I had a total colectomy in early April. I was a complete train wreck when I had the surgery. I was very sick.  I have no regrets whatsoever. My colon was ulcerated from the inside out. If I hadn't had the surgery, my colon would have perforated. There have been complications. I went septic a few days after the surgery. That was very scary. I also have blood clots. Right now, I do have an illeostomy bag- my surgeon doesn't do the one-step procedure because there can be more complications. The bag is really hard. I am very petite, so it's huge on me. But it's better than being so tired and in pain. I have my reversal in 4 weeks. I am terrified and I cry.  I have an incredible support system in my family and friends. If you are considering having the surgery: Talk to as many people as you can and do as much research as possible. Having a colectomy is a very personal decision. You don't know how hard it is until you do it. Find people who have bags - it helps to hear their stories. If your colitis is absolutely ruining your life - it'sbetter to make the decision on your own. The decision that I made saved my life. 

 Reply posted for lbunch.

Hi,

 Reply posted for Misseireann.

Thank you to all of you who have responded. I had my reversal surgery 10 days ago and everything is going very well.  I started pooping much sooner than they expected and I know that my body is truly starting to heal from this brutal mess. The only thing holding me back is my mind, and I'm going to go see a psychiatrist and therapist to help me thru some of these feelings and emotions that I have regarding all of this mess. Surprised I'm a worry freak? Well, obviously it's common for UC patients to be scared all the frickin time and worried. It has to stop for me. Anxiety really gets me. It has been a horror - but I still know that having my colon out was the only option in the end for me. I was so terribly sick, Im surprised I havent had nightmares over it. I hope to return to work in August (I am a high school French teacher) and running soon too. Ill be running for the CCFA in Cali next year if I can... I have always loved running, and Ive been blessed to have been able to maintain a strong, healthy body for so long. I dont know if I would have made it through all of this had I not worked out so much a nd tried hard for so long. Now its my turn to not have to try so hard. And yours too!

 Reply posted for kawilson918.

i have had crohn's disease for 20 yrs. and had to have a small bowel re-section a month ago to remove an 8" section of my ilium due to an obstruction.  having surgery has given me a new lease on life.  i had suffered with the obstruction for over 3 months unable to eat much, losing over 25 lbs, vomiting constantly and in excruciating pain!  i now can eat whatever i want, have gained back most of my weight and am symptom free!  surgery is not a cure for cd but it's sure choice over the alternative which in my case would be death!  i am healing well and will return to work in a few weeks.  best wishes to everyone who suffers with cd or ibd, it can truly be *** on earth!

 Reply posted for Misseireann.

I am a j pouch survivor.I suffered with UC for 2 years ending Dec 2006 with total colectomy j pouch formation and ileostomy(surgery was my only option, I was toxic/infected).  Reversal 4 months later.  I had some obstructions and kidney stones b/w the 2 surgeries.  The ostomy reversal took about 1 hour.  I was out of the hospital in one day.  I had some minor complications after mostly pouch pain requiring 1 er visit but overall the reversal was a piece of cake. With the pouch the I have 5-8 movements per day and 2-5 times at night without pain blood or incontinence.I compete in triathlons and I am 14 months after 2nd surgery.  Life is great for me, my wife and 2 girls.  You have so much to look foward to.I am sure you will not look back.  Good luck with your second surgery, you will be fine. Keep smiliong. 

Kevin

 Reply posted for Misseireann.

Hi,

I've a love/hate relationship with surgery and I know just how this feels--gratitude and fear and that sense that you're losing control of your life, that something is stalking you and won't let you be who you are.

 I am now 52 and had my permanent ileostomy done when I was 31 after 12 years of horrors with CD. There'd been three fistulectomies, two bowel resections, and I'd been at death's door twice before that. No regrets about the ileostomy (there was some idea that we might reverse it, but I had the colon and rectum taken out three years later when it was clearly not going to help any). I'm nothing but grateful for my ileostomy, and that feeling arrived soon after it was done.

My ostomy surgery and the aftermath was hardly trouble-free, but life got nothing but better...no more fistulae, a lot less worry about bathrooms (not no worries, but a lot less), and most of all a lot less pain and fatigue.

I've had another resection and a revision on the stoma since then, due to recurrence of CD, but I'm sure I've had more good years than bad. Soon after the ostomy surgery, I had the energy and outlook that I was able to land a job writing and editing for a car magazine, and I've traveled the world--the Australian outback (camping), China, all over Europe, Egypt etc. in that work. I'd not have had that kind of life without the surgery (actually, I probably wouldn't have lived this long).

 For me, surgery was a true blessing.

I remember how hard it was to see this in my 20s, how scary it all was, and I just want to say that there IS life after surgery (even after many surgeries) and when these afflictions get so bad that they ARE your life, you've really little to lose and much to gain.

Kevin

 Reply posted for Misseireann.

Making the choice to have your colon removed is a huge decision, but it sounds as if you made the decision that is right for you.  I had my colon removed after six years of very bad UC.  I had taken steroids for several years as well as Asacol and Imuran.  After the Imuran completely trashed my liver, my doctors told me my only other option was to have jpouch surgery, as my body couldn't handle the drugs anymore.  I had two surgeries instead of three and I did have a very hard time.  I got two major abcesses and had to have all my staples removed and heal from the inside out.  The whole process took three months.  That was three years ago, and I have to say that even though I had so much trouble and pain with the surgeries and following complications, I would not go back to life with my colon and UC.  Adjusting to not having a colon is hard and takes time and patience (my hardest part!) but it is so much better than having UC.  You will make it through this.  Just remember that the problems you may have with your surgeries will go away.  If you hadn't had the surgery, the UC would still be there.  You can only move onward and upward from here. 

Lauren

 Reply posted for slooney.

Hi,

My daughter is 26 years old with CD. After 15 years of suffering with this disease and having been on most of the high risk medications in combination with steroids, she had no choice but to undergo surgery. Five weeks ago, she had an ileostomy and there was a complication during surgery.

The first two weeks were difficult because of the post-op pain and the problems of getting used to a bag. Yesterday, we visited the surgeon and he told her she could start driving, do moderate exercise etc. After trying different brands of pouches and flanges, she finally settled on a brand that works best for her and she tells me that changing the bag has become a routine.

In short, we have seen her smile more in the last 5 weeks than she did in the last 15 years, so I am sure she has no regrets as well.

Stay positive.

Regards.

 Reply posted for Misseireann.

Misseirann- (sorry if I've mangled that)  "...But it's better than being so tired and in pain. I have my reversal in 4 weeks. I am terrified and I cry..."

As you probably know by now, no one person can predict how another person's surgery for, or treatment of, UC or Crohn's will go. It seems there is no "standard case" when it comes to treating IBD's. That said, I have no memory, what-so-ever, of my second surgery, and learned about the "care and feeding" of my pouch in a fairly short period of time (simply put, be proactive about going to the bathroom, and always know what your restroom resources are). Adhesions can be painful, but mine were no worse than the cramping I had from my IBD.

I guess what I'm saying is don't be afraid. Your outcome will be your outcome, and fear will not help you get through this. You have every reason to believe that you'll come throught this well, and back on track to becoming the healthy, strong person you once were. Not to brag, really, but I climbed a 10 pitch rock climb (1 pitch =150', +/-) 4 months after my second surgery, and have run several distance races, including a half marathon, since then as well.