Bad News

So I just got out of my 2nd colonoscopy of the year. My doctor said my disease has grown from 25 cm to 40 cm this year. I have failed Humira and he now he wants to try Simponi. He said that if that does not work, then I will be a candidate for colon removal. Obviously, I'm freaking out, but based on the past year, I'm not overly surprised. Any suggestions/advice?

Have you tried 6-mp/imuran or Remicade? You could also ask for Entyvio(vedolizumab).

Finally after 9 years of having UC I had my colon removed last year, I only wish that I did it sooner. I feel so much better, it's the first time that I've felt this good since being Dx'd with UC, even while I was in Remission.

Personally I would ask for Entyvio.
B

Thanks, guys. I have not done Remicade. It was given as an option when I started Humira. I opted for Humira because of the convenience. My doctor does not seem to be keen on it anymore, though. Really thinking it might be time to explore other doctors.

We are in the UC forum, not the cancer forum. Here in the UC forum, I think we all consider a worsening of our condition to be "bad news". I sure do.
Sorry to hear your uc has gotten worse Jacket Fan. I hope the Simponi works for you.

Thanks, Gonk. And I appreciate the perspective ewa. I made a deal with myself when I was dx'd that as long as it wasn't cancer I wouldn't complain. It's just been a tough year with only worsening symptoms. I'm still convinced I can get past this, regardless of not having any success thus far. My wife said that's it about time my stubbornness pays off.

Post Edited (jacket fan) : 6/23/2014 2:56:38 PM (GMT-6)

Remicade or Entyvio are my vote- Lots more data on Remicade. At least get tested to see if you are a candidate. Check with your insurance company too. 6mp is worth a shot, but it also has risk factors and takes a long darn time to kick in when you are flaring. Pred might get you thru till it takes effect. Uceris has less systemic side affects but hasn't worked as well for my daughter- some have had good luck.
Your inflammation is refractory-time to address it seriously before it is pancolitis (throughout the colon). Don't mean to sound scarey, as some UC never progresses beyond where it starts. "Ours" went rectum to 20, to 40 to 60 and now throughout. I don't wish that upon you. A world famous IBD doc told me that if the biologis were are cheap as Pred, they WOULD be the first line of defense. I can't answer the Simponi after Humiria question, but I would not have high hopes as the mechanism is the same.

I did Humira before Remicade. Remicade did give me a few months of remission. As others said Entyvio is a great option (the one I'm waiting for insurance to approve).

I have pan colitis so its ALL of it. They offered surgery to me as well.

Meanwhile I continue without surgery or biologics.

Recently turned up the VSL#3DS after travel to California
Recently turned up the qing dai and more pyllium seed and powder.

Just ate canned salmon and canned spinach.

Doing fine.

Jacket Fan,

I would suggest:

I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me in the hopes it might help you too.

Some meds work for some and not for others.
IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by taking certain proactive steps, it put me in full remission.
My steps to remission included: diet modification, various supplements, probiotics, and LDN, low lose naltrexone..

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.