So if you have failed cimzia,remicade and humira...what is next?

Do I try tysabri ? Do I have another surgery? I will be asking these questions soon with my GI after the next colonoscopy. He really believes my body does not respond to the biologics unless they have methotrexate mixed in and that made me even sicker. I always knew another surgery was a real possibility but not 4 years later.?...I was hoping for like 8 or more. As usual I am lucky that I don't have daily problems but my stomach is definitely a mess right now. I have pain every day, bloating, then constipation then D with 15 to 20 bm's over a couple of hours. Last scope showed tremendous ulcerations ans inflammation so we tried humira. It seemed to work for first few months but no any more.

So what questions should I ask next week when I see the GI? And btw this will bae my 13th colonoscopy with 6 in the past 3 years......ugh

For me, surgery was next. I was just tired and didn't want to spend any more time on Pred.

If you have small bowel disease, you might respond well to a liquid diet. If you're in the US, enteral nutrition isn't much known about there for Crohn's, but you could follow such a diet by living on nothing but Ensure drinks for 6-8 weeks. There is an elemental version, where the nutrients have been 'predigested' already into their simplest forms, eg proteins into amino acids. However, the drinks taste beyond foul (I am talking from unfondly remembered personal experience here), and are hideously expensive to boot. It used to be though that the elemental diet worked by bowel rest: everything is digested in the upper small bowel. But studies have found that non-elemental liquid diets work almost as well as elemental ones.

Anyway, the idea is that once the liquid diet has got you into remission (hopefully), you then embark on an 'elimination' diet, reintroducing solid foods one at a time, for 2-3 days, keeping them if they don't cause any trouble, eliminating them if they do.

It's not easy, but it might be worth a try?

thanks. both asking about surgery and liquid diet are good questions for the GI. I have done the liquid/soft food diet a few times in the past. I did get more comfort, but nothing really stopped inflammation.. so we went on to surgery. thanks was Jan 12, 2010. I never achieved remission but for about the first 6 weeks after surgery. then the usual symptoms returned. .

yeah, mostly soft foods and soups....mashed potatoes, thin pasta, tomato soup, chicken noodle soup

I will let you know what happens

I would give Tysabri a try, but make sure you get checked for that specific virus that can lead to a brain infection (J virus maybe?  ask your GI) first.  Did you have a resection for your first surgery?  If that didn't work I would be cautious about another surgery.  Have you tried adding 6MP to biologics?

A week long liquid diet tends to quiet things down for me - but you do need to get on something to maintain remission.  Are you willing to do a pred taper?

Good luck!

Hi there,
I have never tried this but many people on this forum take LDN which I think tries to build up your immune system rather than reduce it.
I have tried elemental food which I found very helpful, in fact stopped me from needing surgery. It's not brilliant to taste but I could tolerate it and far preferred it to surgery! I am not sure that just eating mashed and soft foods is enough as there is still work for the bowel in digesting it and e.g. reheated mashed potato is actually quite hard to digest.
Can you get Ensure or E028 on prescription or paid for by your insurance? As you say it's certainly something to ask about. Best of luck!!

Hi There,

I have been on Tysabri since February and have been off Imuran since then. I have no aches and pains which i believe came from Imuran and I have felt the best i ever felt in years. I tested positive for JC virus but decided my quality of life was no life at all. So I went ahead and i still worry about the virus but I exercise at least 4 times a week and am living again.

Its not for everyone and be sure to do your research for me it came before another surgery as I have only enough large bowel to go to bathroom my next surgery would mean a bag. I have suffered with Crohn's since I was 15 and am now 44. It's been ups and downs all the way so for me to finally get some relief is great.

I wish you luck and hope you start to feel better soon.

Have you ever thought about the SCD diet? Since you are on a liquid diet anyway, it would be easy to transistion to the SCD by just eliminating the carbs like potatoes , pasta, rice, etc , and foods with sugar like ensure.  I suggest reading the book "breaking the vicious cycle".  You are at a point where you have nothing to loose by trying it, and all to gain if it works for you.  It is not an overnight fix and might take 2 or 3 months to see improvement, but what do you have to loose at this point.  I have been on the diet for 7 years and have been in remission for all that time.  

of course, skip the surgery if you can. but sometimes, getting all the "bad" stuff out of your system is what you need to do to start over and give your body a chance to heal. suggest a long discussion with the GI.

but once you make this decision, step two is diet. i say this with confidence cos i was in your exact situation a few years ago. i was looking at a colectomy too. i did the maker's diet and added some aspects of the SCD and low and behold i reversed everything and so far have been managing CD with diet and nutrition and supplements for like 6 years and feeling the best ever and i have my life back and people are amazed at how well i look (and i dont even work out).

i know, it sounds too simple but diet can and does work. your GI may say no but i say YES cos i have done it and i have seen others do it. this is not a miracle. you are actually treating the disease instead of treating symptoms. medicines do have their place but from my experience, of taking all the meds at one time or another, they only treated symptoms and caused more problems and i never truly got better on them.

of course diet works to varying degrees depending on your condition when you start and how well you do the diet. it is very important to be hard core and do it a total "T" for several months when you start to make sure it works for you and to get the most benefit out of it. they are hard diets cos you have to break down old habits and learn new ones. you are creating lifestyle changes.

do some research. there is no negative to eating healthy and properly. i think you'll be amazed if you give it a shot!!!