When did you consider surgery?

I've been considering surgery since about a month when my dr told me if i had enough of the status quo then i could go for it. I've been in a flare of varying severity for 3 years..most of that time maybe 5 BMs a day, variable urgency and variable abdominal pain. In the periods where i was going 20x a day with only liquid BMs, or having accidents on the way to the toilet, i was willing to try anything to change my situation....but the halfway house i have been in for most of that time makes it really hard to know what to do. I feel if anything the doctors here are pushing me towards surgery (if xeljanz doesn't work out). But i would like to be confident that i tried all.options first. By the way remicade works really fast so that's a positive of trying it.

It should come down to your Quality of Life, if UC is dramatically impacting it then it's time to consider surgery. Most people but not all try two Biologicals before opting for surgery (3TC did not do that for his above stated reason)

I felt so much better after having surgery, you wake up from your colectomy and just feel healthier (albeit sore).

I have the dreaded chronic pouchitis, it doesn't effect my life like the way UC did. I have to treat it but I have a very good QOL. I just had a scope and my pouch looks great.

The surgeries are tough but we've all made it through. Depending on your surgeries it can take 3-12 months to go through all the surgeries and may be an additional month or two to recover. There will be plenty of good times during the surgery time line, you won't be sick or sore the entire time but your life kind of goes on hold for a little bit around each surgery.

So you’ve failed a couple of biologicals already and one of them was an Anti-TNF medication (Humira) similar to Remicade. I would try and find a good surgeon for a consultation.

It took me 3 months to get booked for surgery. I chose to wait for the best surgeon that I could find. I suffered during that time but my GI who scoped me last week said that my pouch was the best that he’s ever seen. My GI said it a couple times that I have the best color, blood flow to my pouch and this time I had zero inflammation (thanks Stelara) in my pouch.

Celeriac where do u live??? Might be good to post here about potential surgery to get a good reference from someone

I feel like the decision sort of happened to me to some extent. I got very ill from the medications and ended up in the hospital for weeks. I never had the correct responses to the meds. Whether it was 6mp, remicade, or entyvio, they just didn't work the way they should have in my case. It was always something. After I got sepsis from the medications, I had been through hell and i knew I couldn't put myself in a position where I would ever go through that again. I only had the option of entyvio left at that time. My UC briefly calmed down, so I started entyvio with no symptoms. Solid stools due to the prednisone I was on for the sepsis. I had tapered off pred and I was somewhat stable, but it was an 18 month flare up and I knew I was threading on thin ice. Slowly but surely, the flare up came back while on entyvio. Luckily I had come to peace with surgery being necessary at that point and I was already consulting surgeons. I was so scared, i literally felt sick. I shed some tears at my consult - that said, my surgeon was so funny, he made me laugh. I scheduled that day and it took a month or two to get a date. I wanted to back out of course, but I knew there wasn't anything that was going to put a stop to my flare, and I knew I wasn't living how I wanted to, nor did i want to suffer the implications of living with the unpredictability of having UC forever. I wasn't one of these people who "felt great" following surgery. I still feel like crap. Tired, don't sleep well, cloudy headed... I can however wait to get to the toilet, and that's all I hoped for. I get up in the night to empty usually. I don't sleep well anyway, never have.

@3time — I’m in the Hampton Roads (VA), but my doctors are in Richmond.

@nssg — that. sounds. awful. But that’s also been, in my mind, what I thought I would need to reasonably consider surgery. It seem somehow premature to be like, “I just want my life back” which is intellectually ridiculous, but really tough to shake, for some reason. Do you think the fatigue and stuff will improve as your body continues to adjust, or is where you are now where you’re expected to remain?

My doctor saved me the trouble of bringing up surgery by bringing it up for me. She was able to get the Remicade approved to start while I’m here, today (just waiting for it to be delivered), but said that if this didn’t seem to work my remaining options would be Entyvio (takes forever, she isn’t optimistic), clinical trials, or surgery, of which—she felt—surgery might be my best option for quality of life.

So I’m keeping everything crossed that the Remi works, but it feels both terrifying and also a little like relief to have someone that’s not me suggest that the current situation is not tenable.

I had tried so many meds and none of them gave me any relief. I had been flaring for three years straight and feel like I lost so much of my life during that time. I've had three GIs whose opinions ranged from I should try alternative methods and diets to I should exhaust every med and trial first to I should have surgery whenever my quality of life is too affected. It really varies so much from doctor to doctor as it is really a personal decision. I'm only a few days out and don't get me wrong, the surgery recovery isn't fun, but the realization that the urgency is gone just hit me and I finally feel free. I feel like I can start my life again. Sure, I wish a med would have worked, but my colon just kept looking worse and worse the more I waited for meds to work. Also, I feel like one thing people don't talk about is how much of the negatives of the disease that you just get used to. I would think "well I'm getting into work ok most days, so maybe it's not too bad", but ignore the occasional accidents, the missed meetings, timing my lunches and water breaks, etc. I'm just starting to realize that there were so many things that I had convinced myself were not "too bad" that no one should have to put up with.

Cloudy now that I'm done with surgeries i see how much of my life was centered around my UC.I was a hostage to this terrible disease.NO MORE HOSTAGE HERE.Life is good

3timechamp said...
Cloudy now that I'm done with surgeries i see how much of my life was centered around my UC.I was a hostage to this terrible disease.NO MORE HOSTAGE HERE.Life is good

I strongly support this statement , as really gets to the grit of it all. And happy you're now set-free.

It's kinda like the frog in a pot with the water slowly brought to a boil with UC symptoms. We don't at first notice how much time and excuses build due to our UC flare, it becomes routine and just part of what we do. It's not until you achieve a remission or are finished with surgery that you realize it. *Insert Braveheart movie (1995) freedom scream*

It’s really heartening to read about so many experiences that weren’t tortured decisions— thank you all so much.

It’s really caught me off guard how ... not bothered ... I am by the prospect of surgery. Not that I’m thrilled about it, either, but I think the frog-in-hot-water analogy is spot on. It’s like I suddenly realized, around Thanksgiving, how many concessions I was making just to do the most basic things. And I’m sure there’s even more that I don’t realize. Add those to the big issues (accidents, lack of sleep, constant pain, inability to really leave the house, etc.) and one day I just kind of realized, without overly much fanfare, that surgery was not the worst thing anymore.

never -

I’m not sure that having a super strong core is going to give you a big advantage. In fact, my surgeon said that thin, fit people often take longer to heal (or at least stop aching after surgery) I’m guessing that it is because there is more muscle they have to cut through? Generally speaking though, I think everyone would agree the healthier you are going into surgery, the better time you will have recovering. I was a mess going into my first surgery. I was 30 lbs underweight, had been on prednisone for months and super weak. I was basically existing, but that was it. After surgery I noticeably began regaining strength, weight, everything. It didn’t happen overnight, but 3 or 4 months later, I was almost back to my pre-UC Weight.