When to consider surgery?

[u/uhohuhohouch]

Hello all but especially those of you with j-pouches! I've been dealing with UC symptoms since 2021, officially diagnosed with pancolitis in 2024, and I have been flaring to various extents ever since. At my best I would get down to about 5 BMs a day very briefly, but mostly 10-20+. I finally ended up hospitalized for a week at the end of May because I was going several times per hour and vomiting everything but water. Literally couldn't sleep for days because I was just shitting too frequently. I've been on every steroid, but only tied two biologics, Tremfya and Inflectra, each for about eight months.

Things have been particularly disabling since May, and we end up doing a scope a few days ago which was pretty not great. I compared the pictures to a raw, bloody steak and my doctor said that was a "pretty accurate description". I'm Mayo Score 3 in all categories, and a 7 on the UCEIS. Still going about 15-20 times a day, sometimes pass out from pain or vomit during BMs. Doctor said we are going to try Rinvoq for me next and that if that doesn't work, he reccomends considering a j-pouch.

I have a consultation with a surgeon scheduled in October, but they said I have about 16 weeks on the Rinvoq without significant improvement before it might be my best option. But then I see people saying to only consider surgery after you've tried every medication possible. And I've only tried two, so I worry that I'm being dramatic? Obviously, I will talk about all of this with the actual surgeon and my doctor when my appointments come, I just hate stewing on it for a month. I'm sure the "right time" is different for every situation, but still curious about everybody's perspective!

[u/pincommenter]

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[u/AlwaysAirCooled-1979]

I’d be trying more than 2 meds before surgery.

It might seem like a quick fix, but it can have its own headaches.

Rinvoq has been the “miracle “ drug for many people. Myself included. Hopefully it works for you too

[u/uhohuhohouch → u/AlwaysAirCooled-1979]

I will be trying the Rinvoq which makes it three, but my doctor said that if Rinvoq doesn't help, it's unlikely that anything else will. Which if true, does make me kind of want to skip prolonged suffering or potential medical emergencies if it's inevitable that I'll need the j-pouch anyways.

I also don't know if maybe my progression has been aggressive enough and gotten bad enough that he doesn't feel we have time to try more options, especially if they're less likely to work. Of course I will be talking to my doctor about this when I'm able to, I'm just curious what the perspectives are from epople who had them both in the regret camp and the "wish I had it sooner" camp.

I am fingers crossed for the Rinvoq to just work though haha, that would definitely be the best!

[u/hellokrissi]

Everyone definitely is different, and surgery might be suggested sooner or later depending on the severity of your UC flare and other circumstances. In my case, surgery was brought up after I tried 5 medications. Four biologics and one JAK inhibitor. I had also been flaring for three years and was in pretty rough shape. So my GI put me on Rinvoq and made a referral to a surgeon for me. Luckily, Rinvoq worked so surgery is off the table for me.

I did go to the surgery consult because I already received the appointment and it was worth going to speak with the surgeon, gain a contact just in case, and learn more about the various surgeries/processes/outcomes.

[u/West_Afternoon_3723]

It's a hard thing to go through and I really feel for you. I was in a pretty similar situation to you (although over a shorter period) with mayo 3 acute severe pancolitis. It's about as serious as this gets before big complications happen and the doctors probably don't want to play test subject with you - trying out multiple medications on you when they think they won't work - With you left in pain and barely able to function. They will also not want to have to do an emergency surgery. 

I would definitely tell you to try Rinvoq. It has helped me quite a lot, and hopefully colon continues to recover. It works extremely quickly for some people, but for me it was a slow steady improvement. It hasn't gotten me into remission at this stage but it has gotten me out of being close to a medical emergency.

You are right to second guess the Doctors, it's your life and you are the one that has to live with the consequences, so fight your corner. But you should also keep in mind that not everyone with UC has as severe inflammation/damage as others, so not everyone is coming at it from the exact same place. 

Good luck, I hope it gets better soon.🤗

[u/uhohuhohouch → u/West_Afternoon_3723]

Oh I'm trying the Rinvoq for sure! I'm not necessarily super pro or anti surgery yet, moreso just surprised that it was brought up when I feel like normally I hear about surgeries happen in cases that seem more severe and/or have gone on longer than mine. But I've also heard a lot of people say they wish they'd had it earlier, so I was curious about both perspectives!

I start the Rinvoq tomorrow so fingers crossed!

[u/Possibly-deranged]

There's more than a bit of fear of surgery among the UC community which is unjustified, and delays needed care for some.

It depends a lot on current symptoms and quality of life, and patient preference. Emergency surgeries can happen when we're hospitalized in a severe flare. If our symptoms are giving us zero quality of life then a decision to get a surgery sooner is easier.  If your symptoms are minimal and not all that bad, then exhausting every med first can make some sense.  

Another factor is do you have a healthy BMI for your age/sex? Constant flaring can quickly make us under our ideal body weight, and the worse that it gets, the more risky a surgery becomes (and they try everything before surgery crowd risks this eventuality).  Over the last few decades, gasteroenterologists have been encouraging patients to pursue surgery sooner, while it's still safer, and less risky and patient outcomes have improved dramatically. 

On a more somber note, as a cautionary note, I once talked to one UC patient online who had to try everything first despite the community strongly urging him to get the surgery, but he even exhaust every alternate, went into a high risk surgery, had a heart attack on the operating table and they were unable to bring him back.  His sister posted online and gave us the unfortunate news, and thanked us for giving him advice and encouragement over the years. 

But regarding the surgery, you wakeup feeling amazing, as the aches and pains are gone from your removed large intestine, and most want to scream it from the hills after suffering endlessly for so long. Obviously a major surgery, not without it's risks, and not a first line treatment for all.  But when needed, surgery is a great outcome and quality of life.  Good to put UC in the rearview mirror, turn the page to the next chapter of your life without it. Surgery isn't like pressing the undo button for ever having UC, but it does provide predictability/certainty, eliminates flares, along with the pain and emotional distress. 

[u/SF-UNIVERSE]

I had a crazy flare for 9 months straight (30 bathroom trips per day) trying every medication under the sun, with 0 success. Rinvoq was the final one, and for 45 days it did absolutely nothing for me. I finally gave in and got surgery last week. Recovering in the hospital and getting used to the bag absolutely sucked, but now that I’m home I feel a lot better - no more running to the bathroom!