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Ulcerative Colitis
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Posted 4/29/2016 4:19 PM (GMT 0)
I have been diagnosed with moderate ulcerative colitis for about a year now and I am currently on 80mg of Humira every two weeks and I am also on a taper of prednisone which ends in a couple weeks. Shortly after I finish a taper I flare again. Mesalamines did not work and resulted in a bad flare back in October. Based on my most recent blood work I am beginning to build anti bodies against the humira.

Anyways I am a 20 year old male and I am looking for advice on whether or not to keep trying new drugs or to have surgery. Any opinions would be greatly appreciated. Thank you
Posted 4/29/2016 4:34 PM (GMT 0)
If you're only a year into this, then there's always additional treatments to try. Have you tried immunomodulators (Imuran, 6mp, or aza)? There are other biologics to try: remicade, simponi, or entvyio. It's generally preferable to keep your large intestine, if your uc can be managed by medications. Often, immunomodulators and biologics are taken simultaneously.
Posted 4/29/2016 5:06 PM (GMT 0)
I'd try Remicade or Entyvio. I felt great on Remicade for almost 5 years until I developed antibodies to it.

Almost everyone who has had surgery for UC is happy with it but it doesn't come without its own risks. Many of us (i had surgery) either failed medications or were really sick when we had our colectomies.

You're 20's old and don't want to be sick, I get it. I got sick when I was 25 and it sucked, I missed out on a lot and I do wish that when I first got sick that I went for surgery when I was hospitalized for UC, I think things would have been easier. With that being said, I was very happy on Remicade when I was in Remission and was able to live a normal life when I wasn't flaring.

Surgery is tough but for me living with UC was tougher. Maybe you want to have a consultation with a surgeon or at least talk with your GI about it.
Posted 4/29/2016 7:46 PM (GMT 0)
I accept that i have UC and I understand its soon and all to consider surgery but from what I read it seems like people just try new drugs until theres nothing else left and then they end up getting surgery anyways. I havent tried any immunomodulators. Id like to keep my large intestine if i could but ive been on prednisone for the past eight months and I know that isnt healthy either. I see my gastro doctor in a few weeks so I will get his opinion.

Another thing is I am going to school for mechanical engineering which is stressful and when I get out I will always have a stressful lifestyle which I enjoy. The UC just makes everything more inconvenient. Thanks for the advice.
Posted 4/29/2016 8:08 PM (GMT 0)
Some people (like myself) are refractory and that's why the meds don't work. It's a smaller percentage of us. But it happens. You still have options to try.....if you're willing. I had surgery and I'm happy I did but again, I was out of options

That's good you're coming off the prednisone. That stuff is so bad for the body. Best of luck.
Posted 4/29/2016 8:12 PM (GMT 0)
1/4 to 1/3 of UC patients will eventually have surgery due to various reasons, like severe flares, QOL or dysplasia. That is on the CCFA's website.

If you are healthy going into surgery then you can skip one of the steps saving you several months of healing and time off. It depends on the surgeon and the meds that you are on; being on Prednisone might require you to need that extra step.

If you've been on Humira and Prednisone for 8 months then it's not working, you probably should have switched a few months ago to another med like Remicade. You probably should have started with Remicade first, it is a little more effective for UC than Humira.

I had surgery but I still flare because I have chronic pouchitis, it's much easier to live with chronic pouchitis than it was with UC. I still have to take medication. Stress doesn't bother my pouchitis. I am much better off now that I had surgery but it wasn't easy.
Posted 4/29/2016 8:25 PM (GMT 0)
The disease is stressful in and of itself, as is the treatment strategy of trying out various meds until you hopefully land on the one that works. Remicade works for lots of people, and entyvio is working for lots as well. For some people, the 6MP or Imuran works on its own too.

Often, the people on the websites are the ones for whom the "traditional" medical treatments are not working so you don't always hear the success stories.
Posted 4/29/2016 9:02 PM (GMT 0)
I'm in remission on remicade and that means I'm free of uc symptoms. I currently have 1 normal bm a day without urgency. It's 1.5 years so far in remission, some go 8 years or more.

I would ask about combination of an immunomodulator (6mp or Imuran) plus a different biologic of either remicade or entvyio. You'd likely need steroids for a few more months, while you wait for those medications to work. I did a continuous year on prednisone, it sucked.
Posted 4/29/2016 11:28 PM (GMT 0)
i have no clue what the percentages are, but definitely there are a certain amount of us who manage our UC symptoms with lifestyle/diet changes - some find remission, others greatly reduced symptoms, enough so that with the addition of meds, reach a happy colon place -

if you haven't tried diet mods, it may be worth considering -

FMT is also a non-med option -
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