Surgery vs no surgery

I was diagnosed with UC in October 2014 and have pretty much been trying to get into remission ever since. It's been a long, rough ride. Along with being on various dosages of prednisone, I've also been on azathioprine and apriso. I was on remicade infusion for a few months, and humira for about a month. Neither provided enough relief or got me into remission. I'm currently on the Entyvio infusion. about to get my third infusion, but I'm still going to the bathroom 8-10 times a day with a lot of urgency (though barely any blood). My doctor is starting to make references that if the Entyvio doesn't kick in in the next couple weeks, he is going to start pushing surgery a lot more. Really not sure how I feel about this and was wondering if there are any other treatments out there that are worth trying before seriously considering surgery. I just want to see some sort of end in site, and in the past 6 months, it's just seemed like one setback after the next. Should I be considering surgery just to put an end to the craziness that my life has been? I'm so tired of being sick. Any help/info would be great!

I agree that humira I was on for a short period of time (that was because I had to try it before my insurance would approve Entyvio, which my doctor really wanted me on). But remicade I was on for about 3.5 months, and there wasn't much of a difference. Should I have tried it for longer?

I'm also stunned by the number of drugs you've been prescribed in such a short time. It makes me skeptical of your management to be honest. Is there more to the story? Have you required hospitalizations? Have you been on prednisone long enough to get relief while waiting for other meds to work? Have you been tested for c-diff? So many thoughts swirling in my mind. Entyvio isn't a sprint, it's a marathon drug. You need more time to see results.

On the other side, I was a nonresponder to TNF Blockers so I can understand blowing through things quickly. If you don't see results and you've tried 2 different blockers, it's unlikely you're going to respond in 6 months or a year of the same thing. As for entyvio, it's very new and i don't think people usually have quick results (like with remicade) so i don't think 3infusions is long enough to tell... I would definitely give it 5 or 6 infusions or more. I think there are people who just get this illness (or a form of it - because i am not convinced we all have the same thing and since this is a diagnosis of elimination, who knows..) some have cases that are unresponsive to everything available. In those cases, surgery can be a great option. Until you know what's going on, you should try everything possible. I would try fecal trasplant if possible, antibiotics, probiotics, RECTAL meds.. if TNF blockers don't work for you, it puts you in this awful 30% category of people who don't have a standard case and the options become very limited. it's awful. All these people who fit into that category of responders don't get it and they think you should keep going with remicade or humira, they can't imagine that it doesn't do anything for you. I get it. I think you should give entyvio more time. Get stool test to see if there is a pathogen, if so, treat it. On the other hand, perhaps try antibiotics if you havent. Lots of probiotics, rectal meds religiously... 8-10x a day could be a lot worse but it doesn't sound fun. Don't get rushed into surgery but keep an open mind, research, fine a surgeon you're comfortable with, that way if you NEED surgery, you have a great option. They say the #1 factor in a good surgical outcome is the surgeon. Try not to stress you will get through this.

I never responded to any meds (except prednisone at high doses) but you've been thru so many in a short time I wonder if any one of them needed more time. I don't normally recommend this but you could try cyclosporine. It's an IV treatment administered over a week hospital stay. Then the oral form. I did the treatment before I had surgery. It stopped my flare right away but for me it only lasted a few months. It may be an option for you to stop the flare if nothing else is working. That aside, I had j pouch surgery 5 years ago and it's been a life saver. Really happy I did it. Good luck....

Well when your battling both c-diff and UC you're not going to get better overnight. You can't even work on the UC until the c-diff is completely gone and that can be a bear all by itself. If you're not taking mega dose probiotics (such as VSL) of at least 100 billion cfu's per day then you are making a big mistake right there. They will fight both UC and c-diff. Surgery should not even be discussed until the c-diff is completely gone and you are dealing with UC only. It would be ridiculous to take out the colon because of c-diff.

Ahhh c diff and flares are hard to deal with at once. Now it makes sense why you feel so bad. First off, it is so bad to treat c diff when you are taking medication that kills your inmune system. My gi doc said entyvio causes the highest c diff risk out of all the higher drugs because it is so gut specific in how it works. That is why i can never take it. Im just getting over my fourth round of antibiotics for c diff and i always have to delay my simponi (biologic) until it resolves.

How is your blood work? Anything low or high?

Holy crap, you have burned through the meds like wildfire. That's actually quite rare; usually I read about people whose GIs are stringing them along on x med and telling them to "give it more time", even though they're long past the point at which x med should have kicked in.

I agree with the c. diff changing everything. You may find the UC much more manageable if you can get the c. diff sorted out. Google FMT and c. diff: that's one option if the antibiotics don't work and will certainly replenish your gut flora.

I'd just like to add that the slow approach doesn't always work. I went about as slow as you could go (not much choice on the NHS), and nothing apart from steroids kicked in for me whatsoever: not Remicade, Humira, etc. (The only med I didn't get a chance to try was Entyvio. I think it's available in the UK now, but wasn't back when I had surgery.)

Wow, that's insane that you tried the biologics for such a short time and your doc pulling you off of them, I'd get a new doc because it seems his method is insane. I flared for 23 years because I was unresponsive to oral meds and I ended up developing a recto-vaginal fistula so my GI put me on Humira and it took 3 months before I started to feel better, he even upped my dose from biweekly to weekly (at my request) and the day he upped it was as I was going in for my C-scope which confirmed I was already in remission (I have IBS issues as well which are still causing me some gut grief) but my GI still upped my Humira dose even though the scope showed my inflammation was all clear (I have crohn's colitis, CD affecting my colon) in both my rectum and colon, rectum has some scaring but other than that my inflammation is cleared up.

pb4 said...
Wow, that's insane that you tried the biologics for such a short time and your doc pulling you off of them, I'd get a new doc because it seems his method is insane. I flared for 23 years because I was unresponsive to oral meds and I ended up developing a recto-vaginal fistula so my GI put me on Humira and it took 3 months before I started to feel better, he even upped my dose from biweekly to weekly (at my request) and the day he upped it was as I was going in for my C-scope which confirmed I was already in remission (I have IBS issues as well which are still causing me some gut grief) but my GI still upped my Humira dose even though the scope showed my inflammation was all clear (I have crohn's colitis, CD affecting my colon) in both my rectum and colon, rectum has some scaring but other than that my inflammation is cleared up.

The TC was on Remicade for 3.5 months before that though. If the first anti-TNF biologic doesn't work (as in, never starts working, not work for a while then stop), then the odds of a second anti-TNF working are extremely low. I was on Remicade for a year and then Humira for 3 months. My GI didn't have much hope for Humira and neither did I, but it was a last ditch resort before surgery.

I think the first anti-TNF biologic (Remicade, Humira, Cimzia, Simponi) that you take should be given 4 months before you can safely declare it's not going to make any difference, but in reality they usually start working much faster than that. Entyvio isn't an anti-TNF so I'm not including that one.

ekl283,
Having C-Diff definitely changes the ball game when it comes to how effective the meds will work more than likely...has your GI tried you any rectal meds?

The treatments have zero chance of working while you have C-Diff. It absolutely must be totally and completely irradicated first before you can judge how any treatment is working. Until then you are just treading water.

Your case sounds somewhat similar to mine. I started flaring about ten months ago, last July, and burned through pred, 6mp (for about four months), Remicade, Humira, and Entyvio. I had antibodies to the Remicade and would have like one good day on it, then lose response. Humira did nothing. Entyvio helped some, but not enough. I had four infusions. I think some docs are just more aggressive--mine didn't want to wait around if it seemed like it wasn't working.

The top doctor I saw at Cedars Sinai for a second opinion said Entyvio needs at least 14 weeks, so you should keep at it. He also suggested cyclosporine, but I think I'm past that.

I think it's dangerous to be constantly inflamed--the other risks to the body are too great. My GI gently pushed surgery because he was worried I'd get really sick--which I did. I got c diff, like you, and then had a pulmonary embolism, which the doctors said I was at greater risk for because of the inflammation.

So I'm having j-pouch surgery in a few days. Can't wait to lose this angry colon of mine. It's a sure cure!