At what point did you decide to have surgery?

I'm 6 weeks into Xeljanz and am feeling exactly as I was before. I have been flaring constantly for over 3 years. Prednisone, Remicade, 6MP, Humira, Entyvio, and now it seems Xeljanz have not given me even the slightest improvement. I have an appointment with my GI in a few weeks where I think I will start the discussion about surgery (while continuing Xeljanz just in case it's just taking longer for me).

At what point did you accept that surgery was the right option for you? Were you still nervous even after you made the decision to have surgery? I have done a ton of research into it and feel like it is the best option for me logically and I so very badly want my life back and to be able to be healthy and start a family, but emotionally, it just feels so severe to "elect" to lose a colon.

Also, how long did it take from you deciding that you wanted the surgery to actually having the surgery? I'm guessing that there will be surgical consults, pre-approval requests to insurance, and surgeries might have wait lists.

I am at the same weight as I was before flaring. My GI even commented that I was in good weight and health for how severe my colon looked (other than the whole running to the bathroom 10-15 times a day).

I knew surgery was a possibility years ago. My GI put me on Imuran which put me in remission and I told him if I flare again I want surgery. Five years later I flared again and I gave simponi and xeljanz a try. At this point I kept bringing up surgery to my GI while he kept pushing pred. Which is refused. I had my surgery a week ago.

After having the UC monster for 32 years it was time.I did not want to go on Remi or Humira bc they lower your immunity.I don't have a spleen[football injury] and I'm 59 yo.The older u get the weaker your immune system gets.Early last fall i knew it was time.I had done my homework seeing 2 surgeons.KS1905 had his surgery at New York Presbeterian and said good things about it and he was correct.Great place and great staff.This time last year prednisone wasn't doing the usual getting me back to normal plus I'm getting divorced and wife has health insurance so it was a no brainer.It was time to Rock n Roll.Jan 9-April 9 and Aug 21.Life is good.No more anxiety,toilet radar needed etc etc

I was in an 18 month flare up and there was no sign of it improving even though I was trying all of the medication available to me. The reality was, i felt like crap all the time, and the meds weren't helping. I was tired of needing to have expensive insurance plans, spending on drugs and procedures, and I was tired of taking time off from work to go to doctors, but the icing on the cake was the septic shock I experienced from being on a bevy of immune suppressing drugs at the same time. The drugs nearly killed me. That was an awakening. I am so much better off without UC in my life.

After i decided, it wasn't easy to keep my mind off the possibility of not going through with it. Actually I didn't post about it here until after it happened because I didn't want to be swayed with any "try black cherry" or "how about cactus leaves". I just wanted to move forward and get my life back. It took about a month to get in for my first step. I kept having good and bad days, and of course on the good ones, I wondered if maybe my colon would suddenly start to behave and I could put the brakes on surgery. The reality is, it never got THAT good. I also realized that there was a good chance that regardless of whether I had surgery at that moment, I would have to have it at some point in the future. I was out of medical options, and my UC was so severe. I also had a precancerous polyp once, so I always kind of felt like cancer was in the future of my colon. I know that's not how it works, but it was in the back of my head... My QoL was terrible, and I felt like my colon maybe could have been saved right then, but for how long, maybe a year, maybe two, but probably not 5. I figured if i was going to do it, better to do it younger.

Same for me as many of the previous people have astated. I had tried two biologics, immunosuppressants, and a Drug trial and no change/improvement. I was prednisone resistant and every time stuff got bad, I’d end up in the hospital for a week or more. It was just a matter of time before they’d have to take it out as an emergency. I figured it was time to put it on the books and plan it, so I’d have some level of control. I was crapping my pants at age 35 and about to get married that year- it wasn’t the life I wanted to live- strapped to the bathroom. I couldn’t even walk my dog around in our yard without having to run into the house to use the bathroom.

I felt better after meeting with the surgeon. I got a lot of my questions answered and by the time of the surgery, I was itching to get rid of my colon!

I was in a very similar situation to you. At some point you just have to make the decision to move forward if nothing is working. It sounds to me like you're mentally ready to do it and get your life back. You could try Stelara, Simponi (any others I'm missing?) and be certain you tried everything possible, but figure that's another six months potentially wasted for solutions that are statistically unlikely to work at this point.

My process took about three weeks after the initial consult to the surgery date. I'm sure they could expedite that if necessary.

I had a horrible non-stop flare for basically 5 years. Failed all meds. Surgery was the last option, but I didn't end up doing it. My refractory case was one of the worst they'd seen. Through research and resilience I found alternative treatment options and now I'm in remission.

I'm not trying to say "I did it so you can too." It depends on how long you feel like you can live with this condition while you search for answers. Some people have time but no money; some people have money but no human support; some people just can't bear the pain and isolation.

I was not willing to part with my colon. Because of how severe my case is, chances are a j-pouch wouldn't have worked or I would've had chronic pouchitis. I wasn't willing to live with an ostomy bag at age 32. I'm a young single man with my whole life ahead of me and I'm going to need my colon. But that's my choice, I respect that others don't look at it the same way.

It really comes down to your values and choices. I've met people who are so grateful they had surgery and I've met others who regretted it forever. Whatever you decide, make sure it's 100% what you want with zero regrets. That's what my colorectal surgeon told me. He told me to not get the surgery unless I was totally sure. If there was any doubt I should've waited. I really respected him for that. Because of him, I waited and found other answers.

A lot of doctors who scared me by telling me I was going to die without surgery were wrong. They were just scared about losing a patient and projected that on me. The human body can survive a lot, if it gets the right things eventually.

Hi partlycloudy,

Your story reminds me much like mine!

I had gone through the whole gambit of drugs (as in my signature), including 3 different biologics. By the third (Humira), nothing got worse, but nothing improved. I was using the washroom, on average, 12-15 times a day. There wasn't any blood per se, but the urgency is what got to me. I lost almost all control of my bowels; I was within 5 seconds of a washroom and at times, still couldn't make it. That and the lovely anxiety that comes with not being able to ever leave the sight of a washroom! Anyways, I figured after putting up with this for nearly 2 years, and with biologics/steroids not doing much for me anymore, it was time to seriously consider surgery.

I opted for having a proctocolectomy with permanent ileostomy, and my life is honestly close to what it was prior to my diagnosis. Of course, everyone's body will likely respond to surgery differently. As well, I did have complications for a month after surgery, but in the end, things have been fantastic.

You're already doing the right thing by educating yourself on your available options. Good luck!

Glad you're a healthy weight, that'll make a surgery easier if you ultimately choose to go that route. In the end, I think quality of life is what it all comes down to with UC treatment and whether the next level of treatment (whether a biologic or in this case a surgery) is necessary. For a chronic illness it is rare to have a Trump Card up our sleeve, like a surgery that we can pull to regain a quality of life when other things do not work.

Everyone is scared going into a surgery and it's perfectly healthy to be a bit scared. As there's always a small but present risk during the surgery and in complications thereafter. It's a process involving multiple surgeries and recoveries, each with a bit of pain and downtime. And we certainly fear change, as a generalization.

I had zero quality of life left. And when you cannot leave the house without having an accident, it’s time to take a hard look at what options you have left. I chose j pouch surgery because I wanted to be done with it once and for all. So glad I made that leap! Life has been good these past 8 years without my rotten colon. I LOVE my jpouch.

Thanks for everyone's stories!

Follow up question for you guys: Have you had trouble with family and friends trying to convince you not to have surgery?

I've found that as I've started opening up about the possibility of surgery that a lot of people are strongly pushing me to not move forward with it. My mother believes I should just drop the medications because obviously that's what's making me sick even though I was suffering symptoms for a year before I got diagnosed. Others say I should try the miracle teas that cured cancer in their friend (who was also on chemo). Even some doctors (not GIs) are recommending naturopaths to me. Is this something you just have to grin and bear through?

partlycloudy said...
Have you had trouble with family and friends trying to convince you not to have surgery?

Yes a lot of my friends told me not to do it. When I told them that I already have an appointment for the surgery, a lot of people told me they are sorry. I replied don't be sorry, I'm happy with my decision.

partlycloudy said...
Is this something you just have to grin and bear through?

Remember, it is your body. It's your health. Your decision. If you think you will make the right choice, stick with it. Don't let anyone else convince you otherwise. You don't want any regrets in the future because you listened to someone who doesn't even know what they're talking about.