Medications failed, Now What?

[Dixiedoll23]

So I've failed Remicade. I recently found out I built up antibodies after being on it for just a short year.I only missed 1 infusion that whole time and that was due to moving to a new state and not having insurance yet.
I've also failed Humira. I asked My GI about Cimzia and he said since I had already failed Humira he didn't see any point in trying.I live right next to 2 great teaching hospitals that include Duke and UNC.So I asked him if I could try a trial study and he told me I wasn't reliable enough.(Makes no sense, like I said I've only missed 1 infusion)
I am the one who decided to stop the remicade.After getting it switched to an infusion every 4 weeks, I noticed it was helping less and less to the point where I was only getting a few days of relief.My Doctor was NOT happy that I made this decision without talking to him first saying it didn't matter if I was still going to the bathroom 15+ times day and still having extreme pain as long as it was keeping the inflammation down.
To me, alot of what he said that day didn't make a whole lot of sense , like when I asked him if he could reccomend a probiotic he said I didn't need one (can anyone else recommend one, please?)
He also said it was very important for me to be on some kind of medication since I have a history of bowel obstruction (13 inches removed) but at the same time he stated there weren't any options left.

So now my question is now what? My basic plan of action is start making some life-style changes.I haven't tried changing my diet yet. (another thing Doc shot down saying it wouldn't work) Become better at taking vitamins (Funny I don't forget to take pain meds everyday) and start exercise.

I'd really love to hear some stories of how making some life style changes worked for someone! Any other advice is appreciated.
Thanks in advance.
P.S. - I forgot to mention since being off the Remicade I'm not doing that bad.I'm basically only going to the bathroom in the morning a few times a day.I just hope I can continue doing well.oo:

 

[nogutsnoglory]

I wouldn't hesitate to get another opinion. Just because one doesn't succeed on Humira or Remicade doesn't mean that Cimzia won't work. Yes, they are all similar but they have different biochemistry and some work even when others failed. I think after that clinical trials or an immunomodulator may be options.

 

[durwardian]

Oh the changes, forced or voluntary, always hard to do. Stepping back and resting. Exercise when you are exhausted. Drinking the broth when you feel like vomiting. Not eating bad stuff, even when you crave it very badly. Keeping a fanny pack with toilet supplies, meds, spare undies, pants. All of it is hard.

 

[durwardian]

Your doctor should give you a reason for things like probiotics being not needed. I also think another doc is in order.

 

[darster]

My doctor recommended Culturelle for a probiotic. Also, selectively choosing what fibers you can tolerate without getting obstructed (a fiber powder vs. eating roughage), is a challenge. I too failed Remicade after years, am now on Humira with limited success, and if I need to I can try Cimzia next. Not sure why you wouldn't be a candidate for it too. I had 20 inches of small intestine removed 15 years ago, several laparoscopic surgeries as well for adhesions and strictureplasty.

 

[Dixiedoll23]

Thanks Everyone.I believe a second opinion is in order.

@ darster- How long were you on Remicade before failing? I was on it for a short year.Bummer really bc it worked so well at first.

I was on Humira first but never really noticed a difference in my crohns.It helped a little with the arthritis however.

 

[darster]

I was on remicade for 6 years, and it was a slow fail over the course of 1-2 years. Humira was going great, till I had a problem with my insurance and had to go 2 months without it. Now I can't seem to get back to a stable place. Currently I have been on prednisone since October 2013.

Did you see the clinical trial info listed here in the treatment forum, very interesting!

 

[Dixiedoll23]

That's terrible being on prednisone for so long!

So I went to the urgent care because of a terrible pain I was having and he sent me to the ER immediately as he thought it may be my appendix.I went to the ER and got a real quack of a doctor.When I told him I had a history of crohns that's immediately where all of his attention went and was focused on nothing but the crohns, even though I told him I thought this pain had nothing to do with crohns.You can't blame crohns for everything.I admit crohns has alot to do with why I'm sick alot and I even have most of the complications like arthritis.I told him I really thought I needed a CT scan and he went on about the danger of too much radiation.I've only had just a few ct scans.
He also looked right at my husband and said "With crohns it's not a matter of if she gets colon cancer, but when she gets colon cancer."
Wow! Seriously? This guy was a real winner.I was sent home with pain meds and prednisone that I don't even need.Needless to say I'm back at square 1 again.:yrolleyes:
I really feel like I'm not getting the help I so desperately need and am not being taken care of at all.I really miss my doctors in South Dakota.....

 

[Rishi]

Your doctor should give you a reason for things like probiotics being not needed. I also think another doc is in order.

Durwardian! I agree with you. The doctor must give the reason.