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Why did you decide to have surgery?


Sat, February 21, 2009 3:47 AM

I have had colitis (fully involved colon length) for almost 14 years. I've been on Sulfazine and briefly on Asacol and am now on Rowassa and Lialda. That and 2-3 imodium every day and being a little careful about what I eat keep it managable (2-3 times a day, unless I stop taking the imodium). When I was first diagnosed, I was going 10-15 times a day, so this isn't so bad, it seems. Problem is, for years I've also battled headaches and migraines (anyone who gets them knows they are different), stiff joints, dry throat and dry, cracked skin, low energy, plantar fasciitis, sore knees, and the like.I'm starting to wonder if it's side effects from the medications.Colonoscopy in January showed it's still fully involved, and Dr. wanted to up Lialda and consider prednisone, humira, and the like until my wife told him how miserable I feel. He immediately suggested surgery ("You're a young guy yet, we need to get your quality of life back.") I'm not afraid of surgery, but am afraid I may be going to far. Is reactions to medications a good reason for surgery? Will it improve my life after? I feel better than I did a decade ago, but not as good as I should, so it's hard to judge. I could really use some advice from some experienced voices. Thanks.

FPO kdznplz
Joined Jan 24, 2009

Thu, March 19, 2009 4:14 PM

 Reply posted for kdznplz.

Hi!  I have a j-pouch and I'm like the other person where surgery was my only option for a life.  My UC wasn't responding to anything...even weekly Humira injections.  My only regret is that I didn't do it so much sooner.  Emergency surgery is so much worse than if it's by choice! 

You should visit a website called jpouch.org.  It will help so much!  It has forums with a TON of information about the surgery, complications and everything else.  Please don't be scared off by all the negative you might see.  I just finished my surgeries and I definately have my life back.  I can eat anything, do anything and I never have to worry about where the bathroom is.  If you do visit...I'm there off and on under the same name.

I wish you all the best.  Surgery is NOT as bad as it seems.  And my husband and I enjoyed our time while I was a "bag lady".  I was one for 6 months.  In fact we became so much closer and he couldn't be happier that I'm well.  I don't have to worry about my next flare or when the drugs are going to stop working.  I'm just glad that I have that diseased thing out of me and off all meds.  YEAH! 

Take Care...Susan

FPO rodshunny
Joined Mar 17, 2009

Thu, March 19, 2009 12:00 AM

 Reply posted for tinkmcd.

Thanks for the feedback. Since I was diagnosed, the "bag" was always my worst fear, since obviously it would mean my life would end. I'm now finding through testimonials on this web site and talking to people that life after can be not only fulfilling, but even better than before. So far, I'm having a fair amount of success with Lialda and watching my diet and Imodium. I'm better to the point of "normal" colon activity now, but it's comforting to know that if and when the day comes, it will NOT be the end of the world I once feared. Surgery is on the back burner for now, but if I get to the point that Dr. would want to put me on some of the other med's, I think I'd rather risk surgery. Hopefully I won't have to choose anytime soon. Thanks again-nothing's more valuable to me than the voice of experience here.

FPO kdznplz
Joined Jan 24, 2009

Wed, March 18, 2009 3:44 PM

 Reply posted for kdznplz.

Surgery decided to have me, after a flareup that wouldn't respond to any meds. 


That said, since I adjusted to being a "bag lady" (permanent ileostomy: I'm not a candidate for reversal), I've enjoyed a quality of life that I hadn't had--at least for significant stretches--for 27 years.

By the time I was just a few months post-op (and really it took that long only b/c I had some unexpected complications), I was able to sign up for dancing lessons, book and revel in a spa retreat (complete w/ soaking in hot tubs, "chilling" in the eucalyptus-scented steam room, swimming in the pool, and getting mud wraps and aromatherapy foot rubs), go to an outdoor folk festival, and throw a couple of parties.

Oh, and I started a romance with a real honey of a fellow. He knows all about the stoma (called FRED for Fantastic [or another F-word, depending on how it behaves] Replacement Elimination Device) and loves me anyway. 

I'm not sure I'd have had the strength of character to choose surgery, but given that life chose it for me, I'm now glad it did.

FPO tinkmcd
Joined Mar 18, 2009

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