Seriously considering skipping the “big guns” and going straight to surgery. Am I crazy?

I’ve been lurking around here for years, but I never had a reason to post because of the wealth of useful information.  Basically every question I have ever wanted to ask has already been covered.  Pretty sure this has been covered too, but I’m thinking – Hey why not get some personal responses for once?

 

Background:  I’ve had colitis for about 15 years (I am 33 now), and had a good run with the 5-ASAs.  Yep I’ll always remember the good ol’ days when I was at like half of the max dosage and that kept me in remission splendidly for over a decade. Anyway…all that changed in October 2010 when I was hospitalized for a week for a nasty flare and then again 2 months later in December of 2010 I was hospitalized for two more weeks due to a nasty UC flare/Cdiff combo (I picked up the Cdiff during my October hospitalization).  Since that time I have struggled with a couple of mini-flares that I have been able to get back under control bringing me to February of this year when I started having bloody craps about 8 times a day and my doc put me on a prednisone taper.  Feeling pretty good right now although I had a flexsig today and I still have ulceration/inflammation and I can feel the disease ramping back up since I am now down to 10mg of pred.

 

My doc said the words I have been dreading to hear – basically it’s time to get me on 6mp/Imuran or Remicade.   To me this is a whole other league of drugs that I really want nothing to do with.  I am concerned about the long term side effects of using either immunosuppressants or biologics, not to mention that – isn’t this basically staving off the inevitable as for many folks these drugs eventually fail just as my 5-ASAs did, and wouldn’t it be better to have the surgery while I am young and otherwise healthy?  I’d heal a heck of a lot quicker today than I would in 20 years when I am in my early 50’s.  I would hate to otherwise damage my health for the sake of prolonging the life of my diseased, uncooperative colon.  I recognize that having a jpouch isn’t all sunshine and unicorns  and it’s major surgery but I think I’d rather poo 5-6 times a day than wear out my liver, end up with cancer due to my UC meds, etc. 

 

The idea of being drug free for the first time in 15 years is quite appealing.  Plus I already have to have a colonoscopy every two years.  At this rate I’ll have had nearly 20 of them by the time I am 50 year old.  Oh yeah… and then there’s the whole cancer risk thing.  No colon = no colon cancer.

 

I would love some feedback on my thoughts.  Is this crazy talk?  I know we all have our own preferred ways of dealing with this disease and many of you prefer to exhaust all drug combinations before going under the knife.  I feel like I am in the minority here and am trying to figure out if I am missing something or if my concerns on the “big gun” meds are simply misinformed/overblown.

I had surgery for UC before the big gun drugs were approved by the FDA, and I have never regretted my decision. These past 12 years without UC have been some of the best years of my life. Life is predictable post UC, no meds, no diets, no restrictions. I can plan international travel and follow thru. I can take 11 day hikes in the Sierras, backpack, and do all those things I couldn't count on with UC. Basically it's up to you. From those who did Remicade; many felt it just bought them time from surgery. Bye Bye UC is one of those; I'm sure she will respond to your post.

Sue

There are definitely some people floating around (here, and even more in real life ) who skipped the big guns and went straight for surgery. Some people can't tolerate those meds due to other health issues, some people can't mentally/emotionally tolerate the potential side effects, and others due to lifestyle issues (e.g. I believe there was a former member here who was a surgeon herself, and opted for surgery immediately because she knew she couldn't have her career if she was flaring and needed to run out of the OR).

That said: surgery is not easy and you need to be realistic with yourself before you go under the knife about what you can and cannot get out of it. A lot of people who have had surgery will tell you to be very cautious about undergoing surgery to avoid taking meds because the sad truth (the truth in my opinion -- others disagree with me, even some surgeons) is that colectomy is not a cure for ulcerative colitis. Especially in the case of j-pouch surgery where a small amount of the rectum is spared, but even if the entire business is removed from rectum to cecum, problems can still arise down the line. And that's not even taking into account patients who are re-diagnosed with Crohn's after surgery, which can be up to 10% of patients whose diagnoses were considered "definitely UC" at the time of surgery.

Only you can decide if the risk profiles of the "big guns" are acceptable to you or not. I always recommend this CCFA talk because I think it does a good job of honestly breaking down what the risks are and explaining them in a way that makes them easy to conceptualize: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf.

I told myself that I would get a second opinion from a higher profile, IBD specialist GI before I tried the "big guns," which I did, and then I did try them. In retrospect of course I wish I had gone straight to surgery (because they didn't work!), but if I could have had a 15 year remission on 6-MP, which my cousin has and is still on-going, I'll honestly say I would have preferred that.

In the meantime, there's no law against having consultations with surgeons simply to explore your options and establish relationships. I did my surgical consults at a time when I thought I was going into remission and my GI said "These surgeons are going to call me up and say 'why did you send me this patient?'". A week later I needed to schedule surgery immediately and was able to get in to see one of the surgeons I had consulted with within 48 hours because he already knew me and I was already comfortable and confident with him and his plan. There's no harm in exploring the options and no one is going to forcibly remove your colon just for visiting a surgeon (though I'll admit they will probably be more encouraging than any GI; my surgeon, when I asked "When is the right time for me to have surgery?" replied "Yesterday").

Well I'd go for Remicade but that's just me. I had the best years of my life after I got diagnosed. You can always get surgery after. And by the way I had very minor side effects, no cancer.

I wish I had gone straight for surgery and skipped all the meds. I was started out on immuran it was all I took for 5 years. Then I went to just asacol, then asacol plus 6mp plus remicade. And steroids on and off. When I started the remicade, I didn't really want to, I wanted surgery. But imy GI talked me into it. It didn't help me, and I had surgery about 8 months later. So I wasted 8 more months of my life.
Anyway, I'm a prosurgery person, because I have had it, and I'm happy with it. I was 21 when I got sick, 29 when I had surgery and that was six years ago. I've been happy with it pretty much the whole time. There are possible complications, but that's up to you to decide if the possible complication from surgery are worse than the ones from the meds.
It is better to have surgery when you are younger and in better shape.

You shouldn't be listening to anyone here. This is your decision, which should not be influenced by others.

I don't think you are crazy. If I had gone straight to surgery when I was in the early stages and very healthy, I would probably have spared myself years of suffering and diminished health.

I am considering surgery now since there are no more drugs to try (maybe I can make it long enough to try vedoluzimab) and I have tried many "alternative" therapies and diets with only limited success.

I would try, before surgery: diet modification; butyrate; Fecal Transplant; and maybe amino acid therapy too. Also, you might have the time to wait and try vedoluzimab which seems less scary than biologics/ immuno suppressants.

But, mostly, I would recommend that you do a LOT of homework about the surgical options. I always figured in the back of my mind that if I HAD TO, I could at least fall back on the J-Pouch surgery. After much research, I concluded, I would opt for permanent ileostomy rather than a J-Pouch despite being told that I am a good candidate for the J-pouch. The J-pouch seems to have way too many problems: cuffitis (which is basically back to square 1, minus you colon; pouchitis; incontinence; anal discomfort, etc. In short, when doctors and surgeons describe the surgery they are describing a best-case-scenario but not saying so.

But it is good that you are not afraid of the surgery. I am always comforted by hearing from those who have had their colons removed since many have been able to get past this hell and get on with life.

Good luck. Carpe Diem!

I don't think you're crazy at all. My son (20) years old, feels the exact same way as you. Asacol and Lialda have both failed and he refuses to take Prednisone. We are going for one last try at LDN and then Vanco. If he doesn't get some sort of remission after trying those, then he has decided to go for surgery. At first, I couldn't stand the thought of surgery and my son walking around with a bag, but after seeing him suffer with this disease, surgery is now a welcome option. He refuses to even discuss Remicade, Imuran or Humira. I cant say I blame him, because I certainly don't think I would consider taking those drugs.

I don't think you are crazy. It's your health and your choices. Try whatever medications/diet/supplements/etc you think you can realistically deal with, potentially for the rest of your life (and that includes the risks of potential side effects).

I haven't had a smooth ride post surgery, but it is definitely smoother than the ride I had with UC.

You are definately not crazy. I tried it all....including the "big guns". I tried many different diets. For me nothing worked. My colon was shot and nothing was going to save it. I had j pouch surgery coming up on 3 years ago and it was the best descison I could have made. But I didn't have much choice left anyway. What I do know now....any many others will say this too.....I wish I didn't wait so darn long! I wasted so much time that I can never get back.

Tough decisions. All the best to you!

"You shouldn't be listening to anyone here. This is your decision, which should not be influenced by others."


that's kind of a ridiculous statement imo - why else would the question be asked if he/she wasn't going to "listen" to what was said ?

I have been encouraged by positive surgery stories on here. Having said that, I am not sure it would be for me because I know my body doesn't do well with wounds. Even when I got my ears pierced as a teen they were constantly infected.

My mother had to be fed with a peg tube in the last years of her life due to MS, her insertion points was continually infected, including with MRSA that never really went away caught after a visit to a hospital.

These sort of things make me suspect that I would not be a good candidate for surgery - many clearly are though and a life without worry about toilet urgency would be amazing. Luckily I have always responded well to meds and not needed to consider it yet.

I am wondering about the fatigue that comes alongside UC, do people find that improves after surgery? I would love to be free of the fatigue.

You's 100% certified organic crazy. ;)

The only time you wouldn't be crazy, is if you end up like Subear. If you end up like Suebear, perhaps your gamble will pay off.

It's a high stakes gamble, do you have the GUTS for it....