I've had UC for 20 years and I'm considering surgery. Pros VS Cons..I want advice.

Hello all, I am brand new here and haven't mastered navigating this site yet. So please forgive me if someone recently asked these same questions. I would like to hear from people whom have opted for surgery. I've been reading up, but still have so many questions.

A little background: I was diagnosed with UC, 22 years ago (I was 26 yo). I've mostly been in remission through the years. I've had manageable flareups & only 1 trip to ER so far. But lately I can't seem to get a handle on this flareup. I am seriously considering having surgery to remove my colon and rectum. My disease is mostly in my rectum as my dozen colonoscopies show. My last colonoscopy was 2 years ago, my GI doc called me the next day to check up on me, he told me that he has never seen a colon "as burned out as mine". His office and I have been playing phone tag for weeks to set up an appointment for me to see my doc and for him to renew my Rx. I would like some insight and advance now!, I'm getting impatient while waiting for my appt to be set up 3-4 wks out. So it would be nice to have some research going in. I was on Lialda, but then my insurance was cancelled a few months ago and I couldn't afford the $500/mo Rx, so he switched me to Sulfasalazine ($70/mo). And now that Rx has expired, I have maybe a week left.

I am so sick and tired of being sick and tired. So I am seriously thinking to have surgery. I've heard it IS the cure.

I would like to hear the ugly truth of my options, the pros and cons of having ones colon and rectum removed. Permanent iliostomy w/ a stoma & bag -vs- J-pouch.
Please share everything!! Including the gory details! What to expect from the ostomy bag? Can accidents still happen with the J-pouch? Will I still be able to have anal sex? Experiences from people with UC in the know is very much appreciated!!

Thank you for your time.
Sitting here missing my high school reunion because I feel like crap! ACK.

If you've only been on the mesalamines tgan ask about immunomodulators (6mp/imuran) and biologics (humira/remicade) 1st. As sonetimes proctitis cases do need the much stronger meds.

To answer your surgery inquiry, here's some info from within our resources section.

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If you've struggled and tried many treatments (from mesalamine, to immunomodulators, and multiple biologics) then it's worth considering surgery. There's always a seemingly endless amount of alternatives, clinical trials, and other things that can be tried if you have more fight in you. But if you don't, then that's understandable. As there's a point where you have to get your quality of life back and are just done with uc, which we totally get. Life can pass by quickly many months and years while we fight, fight, and get nowhere. Surgery can be amazing for those in which nothing has worked to control their uc, as suddenly things are predictable and under control. Surgery's tough, but so are you if you've made it this far with uc.

Surgery is a very tough decision to make. Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure -

• www.ncbi.nlm.nih.gov/pubmed/14501509
  
• www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/
  
• www.ncbi.nlm.nih.gov/pmc/articles/PMC2709047/?tool=pubmed
  

There are also some good blogs out there that really helped get a handle on what the process is like -

• ronnilee-fightingforit.blogspot.com/
  
• itslikethisuc.blogspot.com/
  
• fyouuc.blogspot.com/
  
• From Sickly to UC Free
  

Surgery isn't all sunshine and lollipops though is it? Of course not, although the majority have great outcomes there's always risk. We also had a good thread "Reasons not to have surgery?" that covered some downsides to get both perspectives and some potential shortcomings. www.healingwell.com/community/default.aspx?f=38&m=3709466
Some have had trouble. As an example, here's SolomonSeal's story: www.healingwell.com/community/default.aspx?f=38&m=3263001

I think the only good thing about surgery is being free of UC. Everything else is better with a working colon, but unfortunately none of us have working colons. If my UC was mild, I would have loved to take 5ASAs forever and have one poo a day... Unfortunately that wasn't in the cards for me, and it sounds like you're getting to the point where you don't feel it's in the cards for you either. If that's the case, surgery can be a huge relief. No more doctors, no more meds, no more hospital stays... You have to be realistic though, some people have varying results, especially with j-pouches. The end ileo eliminates the chances of pouchitis, but then you're indebted to supplies for the rest of your life. Whatever direction you go, there are considerations. UC presents it's own limitations. I've definitely become more limitless since surgery, but I go to the bathroom much more than people with a working colon. For me surgery has made the difference between being constantly ill and being functional.