Had Surgery

Hey all, I wanted to take a moment to share my experience with UC and surgery. Background: I was diagnosed with UC in December 2013, and have been in a constant flare ever since; having never achieved remission. Obviously I wish I could've been one of the "easy" UC cases, but it wasn't to be. I had my total colectomy three weeks ago.

I realize there's a general fear around surgery. I totally pushed off any consideration of it until this point. I'm only 24 now, so you can imagine my not wanting to go the rest of my life without a colon if there was any possibility of a drug that would work!

Well, I tried the drugs. All of them! I was allergic/intolerant to mesalamine. Azathioprine threw off my liver counts. Then we moved to biologics and none ever induced a response at all. I actually went to Mayo Clinic for a second opinion with a full week of testing/evaluation after the first couple failed biologics to make sure we weren't missing something. The response rates of each biologic individually are pretty good, so to fail all without ANY response seemed sort of unbelievable; but they, too, confirmed UC. In addition to all of the drugs, I also tried various dietary changes and nutritional supplements (probiotics, VSL3, Curcumin, etc) over this time period, though none worked. I admittedly could have tried more as far as exploring different diets (GAPS, SCD, etc), but frankly a) wasn't really interested in throwing away another year of my life suffering with UC while I wait to see if they worked, and b) have never noticed any "trigger foods" or any changes at all to symptoms relative to diet, and c) not psyched about living with hyper-restrictive diet potentially for the rest of my life- how does one travel and eat out?

Anyway, fast forward to July 2018. I just failed Stelara, leaving us with our last available drug option; Xeljanz. In September after two + months on it, it still hadn't provided any improvement. My GI and I agreed it was time to consult with a surgeon as we'd essentially run out of treatment options. At this point, I was totally ready to move on with my life and had a consult with my GI's preferred surgeon that same week, and immediately scheduled the surgery thereafter. Also, for the record- my GI was not pushing for surgery at all prior to this. The first time I met with him (I'd relocated to a new city, and had already tried several biologics at this pt), he said "I know lots of great surgeons if needed, but I hope we don't have to send you to them!"

I had my total colectomy (laparoscopic) three weeks ago. We decided to go the three-step route. I was weirdly/shockingly calm from initially deciding to proceed with surgery to getting put under in the OR three weeks later. Maybe it's because I knew there were no other options left, and/or that my life really couldn't get any worse, but I never had a SINGLE second thought or anxiety about moving forward with the process and was just excited at the prospect of getting my life back.

The surgery and recovery process has been SO much easier than I expected. I was walking around the floor by myself four hours afterward, and was released from the hospital 47 hours after waking up in recovery. I fully realize not everyone does this well and there are sometimes complications, but in my case it was so much easier than I'd anticipated. I also didn't need the opioid/pain button once after surgery! I think having it done laparoscopically makes a big difference; I hope this is the standard today. And waking up the morning after surgery and NOT having to use the restroom for basically the first time in years was an incredible feeling.

The ileostomy has been trouble-free so far and the tiny inconvenience that is the bag, is NOTHING compared to the crap I've been dealing with the past ~five years. I already feel like I can do anything that I could pre-UC... I went out downtown with some friends last weekend and didn't have to think about the bathroom once all evening; amazing! The first week out of the hospital I was out hiking. I'm going on an overnight backpacking trip - something I couldn't have dreamed of doing weeks ago- in the mountains this weekend with zero concern around my colon or bowels. I really couldn't be more happy with the decision (given the circumstances).

Beyond that, I'm drug free for the first time in years. I was on 25mg prednisone for the past three months, and I'm so happy to be done with that, as well as not dealing with the potential side effects of the heavy hitting biologics for the rest of my life (though that's easy to say now- I realize most don't have issues, but the risks from a suppressed immune system do exist)

No date set for the J-Pouch yet, as I haven't decided 100% yet on going that route yet. I'll probably end up giving it a shot (nothing to lose but time, really, given it's reversible back to ileostomy if it doesn't work well), but am aware of all the potential complications/issues people sometimes deal with after it.

That's my story. Happy to talk more if anyone has questions surrounding the same decision!

Thank you SO much for sharing. Sounds as if you paid your 'dues' to this crappy illness and now you can actually begin to LIVE again instead of simply exist. Very best of luck and happiness to you!!

Great story. Mine is different then yours. I got UC at 26,I'm now 59 and I just had my 3 surgeries this year. Like u life is great now. No anxiety. No toilet radar needed wondering where closest bathroom is. Very happy for u at such a young age. U can focus on living a great life without being held hostage by the UC monster. Good luck

Every single word you're saying is exactly my experience and thoughts. I had my surgery today a week ago. Thank you for sharing your story.

Wow, so happy for you! Congrats on now being UC-free. I can't imagine being in a flare with no relief for 5 years. I am surprised you are already able to go on a backpacking trip 3 weeks out from a major surgery!

Happy to hear you're healing and feeling positive. Life is good without UC.

Wow! your story sounds a lot like mine. Suffered nonstop flare for four years. Tried ever drug out there... before finally agreeing to 2 step jpouch surgery. I wish I had a 47 hour hospital stay tho!
I agree about how utterly life-changing this surgery is. It’s certanly not a cake walk but it’s doable and so worth it in the end. Good luck to you!

Surgeon I didn't go with said he doesn't do surgery if patient is over 65. Not sure if that's a standard age