UC: When to Opt for Surgery

Hello all,

I wanted to reach out because I'm still thinking about Joseph aka Chiron who recently lost his battle with UC. May God rest his soul. My story was similar to Joseph's, but I had the fortune to have surgery and recover. I'm guessing that Joseph may have waited too long to opt for surgery. I feel that UC sufferers reach a point of no return where things that may have led to remission will not work once you reach that point. I'm not here to promote surgery. Life after ileostomy surgery is never the same. I personally have adapted quite well and I'm very grateful to be alive.

FWIW, I encourage everyone to:

Regularly keep up with the latest research. Know what's available from conventional medicine, read what folks on this board and others say works for them. If you find something that puts you into remission stick with it religiously until you have a compelling reason not to. For the first 7 years with this disease I often took the oral medication or changed my diet when flaring and then ditched the meds and/or went off the diet that was seamingly working when the flare subsided. That may have been a mistake.

Find a gastro doc who you are comfortable with, is open-minded, and will at least consider options other than meds from big pharma. I had a gastro that was very opposed to anything I had to say with regard to remedies not associated with big pharma. He was actually belligerent. It was beyond annoying and I regret staying with him as long as I did. That may have been a mistake too.

If you're in a constant bad flare for a long period (over a year), become basically disabled because of pain and too many bathroom trips, and your health is getting bad, consider surgery. Research it, talk to folks who have had it, learn all you can about life after surgery. Things seem less scary once you have a really good idea of what to expect. Mentally prepare yourself for that possibility. I suffered constantly for 2.5 years in my last flare. I lost 70lbs, I couldn't work, and my health was getting worse by the day. I held on for that cure that I hoped was just around the corner. I tried everything that I knew to try. I pushed it to the brink. I lost 2.5 years of my life, but I still think I made the right call. No regrets. I had to try. BUT I don't regret having the surgery when I did either. I'm alive and I'm enjoying life again.

So in closing, I wish all of you the very best, and I hope that you can find good health, peace, and happiness.

Notbob aka Nick.

Joseph's story hit pretty close to home because I was pretty much in the same situation as Joseph in 2003 when I first became ill. I had lost about 70 lbs, lost lots of blood, could not eat, could not even drink plain water without throwing up and was passing mostly blood and mucous 25 to 30 times a day. I was also living in Vancouver at the time and had my treatment done at the exact same (crappy) hospital.
I didn't wait on purpose to seek medical help by any means. I was told that there were 8 months worth of people in the queue ahead of me waiting for a consult with a G.I. doc that were even sicker than I was. That wait almost killed me! I finally ended going to the emergency ward and was diagnosed with a scope (with no sedation because there were no staff available for that). I was put in a room with 3 other people, and the guy beside me had active TB and was coughing 24/7.
Looking back, I had no idea how much danger I was in.
What saved me was that I responded well to prednisone. Within a few days I was down to 2 or 3 BMs, and within 2 weeks I had formed stool and was released.
When you are crashing and burning like that, time is of the essence. If I hadn't responded to steroids, I think the only option would have been an emergency colectomy with all the associated risks.
For anyone unlucky enough to get slammed with fulminant pancolitis, getting prompt care is critical. You need to find out quicky what does or does not work for you. The last thing you want to have happen is to get very weak like what happened to Joseph.
Fortunately only a small percentage of U.C. sufferers end up with fulminant pancolitis. I suppose some extreme cases of left-sided colitis could become life threatening if left untreated for too long.

TLDR: If you have extreme symptoms, do whatever you have to do to get treatment because time is not your friend. Go to the ER if you don't have a GI doc to help you in a timely manner. You want to experiment with treatment options BEFORE you lose a tone of weight and become weak.

ks1905 said...

@NSSG, if I remember correctly you ended up in the ICU for some time from a staph infection while on Remicade? Or was it some other infection?
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yes, before I had surgery. I was on a breathing tube with some sort of lung infection that didn't test positive for anything - it was difficult to treat. It got to the point that all my organs were failing. No one knew if I would make it. I was medically sedated so I didn't know what was happening, but I woke up unable to walk on my own. It happened from remicade + mtx + prednisone. I left the hospital very weak, on a high dose of pred, with my colon function seeming fine. My GI said no more remicade. If you read the prescribing info, there is info in there about the potential for deadly infections. It's very rare, but it can happen. I went on entyvio, and things slowly deteriorated. I got off pred, but after a month or two, I could feel things stirring up. I knew it was only a matter of time before i would need to go back on prednisone. While pred can make my colon feel great, it does open you up to infections. I said no way to pred. I think all the stuff I went through with the septic shock made me much more open-minded to surgery. I guess I realized anything would be better than going through what I went through again. I was right about that. This lifestyle without a colon is so much easier than fighting day after day. It's also cheaper and lower maintenance.

I was lucky to be in fairly good health at the time i had surgery, not well enough to get 2 steps, but well enough that my surgery wasn't risky.

Im glad i educated myself as far as my UC. i was very sick when i first got it back in 85 and was never going to get that sick again. I like challenges and this surgery has been a challenge but i am very glad i made decision to get surgery done.This disease wasn't going to control my life.My Dr wanted me to go on Remi and Humira,they both lower your immune system,thats a bad side effect at any age so i decided against it.Was in decent shape for surgery 1 and 2 and can't wait for 3.Bring it on

I believe much like the american health system, that where you live in Canada makes a lot more difference about promptness of care then anything else. There are areas that care is efficient and fast. There are areas that are inefficient and backed up. The procedure itself has a lot of relevance to the speed in some instances.

How odd... I'm in Vancouver and I only had to wait a couple of weeks. It wouldn't have even been that long but I initially downplayed my symptoms to my GP (in hindsight, I have no idea why. Just some dumb instinct to be stoic and not complain).

One more thing, and I hesitate to write this because the last thing I want to do is upset his family, but I showed Joseph's thread to my wife who is a GP herself. She told me they likely refused to do TPN for him because it is very expensive, and they had come to the conclusion that his prognosis wouldn't be improved enough by him regaining some weight and strength to warrant the cost. That blew me away actually, to think that people may be pinching pennies at my expense some day and withholding potentially life saving treatment to save a buck.
Of course we don't know all the facts of Joseph's case, so there may be other factors at play that we don't know about.