I have a crappy choice to make... defeat to ongoing crohns flares or possibly die from medication..

ok, I need you guys here...

I had a hemicolectomy june 7 and I am still somewhat flaring.  Here is the background info:

I was taking Humira and Imuran together for around 9 months, developed numbing of all my right side (started in leg, the torso, arm, hand and then face).  Went to many doctors, they thought it was MS - turns out they believe it's PML (progressive multifocal leukoencephalopathy)... so you don't have to google this, PML is a virus which is activated in your brain (most of us have it) and will essentially kill you very quickly if you continue to take immunosuppressants (6-9 months).  They figure the PML was caused from taking the Humira / Imuran and having this virus.  Also, the virus stays with you your whole life and usually lies dormant in your brain (as long as you have an immune system).  Having said this I stopped the drugs soon enough (I had a 2-3 week window) but in turn, my Crohn's flared.  I ended up going for emergency surgery June 7 where they removed 1/3 of my colon and 1 ft of my small intestine.  After meeting with the surgeon yesterday he says there are still spots of inflammation left and it will only continue to get worse.  He says I would be lucky to make it 12 months without having to have another operation (with an ostomy) and the cycle would go on and on fairly quickly.  My other choice would be to risk taking the Imuran on its own and hope it doesn't activate the virus and kill me.  Crappy choices eh! ... I have researched Imuran more (I took 150mg) and it is also linked to PML.  What would you guys do?????? If I don't take Imuran i'ts surgery and nonstop Crohns flares, or take Imuran and chance dying... I am trying to think of more natural ways to help and supplement whatever choice I make... has anyone tried a Naturopath?? What did they suggest? Gluten free? I am quitting smoking... Thanks!

Specific Carbohydrate Diet is one option. Total Parenteral Nutrition is another method used to induce remission without meds.

Oh that is horrible! Reading stuff like that scares the crap out of me... I am both Immuran and Humira too. I have been on both drugs since Spring and Immuran over a year. I am feeling so off these days - I am worried that the drugs are really affecting me! My Crohn's symptoms are gone but the drug side effects are terrible.

Honestly, I'm thinking the same as you. Get off all this ridiculous medication and go see a naturopath. I don't smoke, drink, or do drugs but my problem is that I am addicted to food. I have changed my diet significantly but I can't imagine completely giving up chocolate or french fries for the rest of my life.

In response to your question, I would not go back on Immuran if it were me. I really am starting to believe that natural healing is the way to go. These drugs just seem to make one it all worse.

Sending blessings and healing your way.... 

Maybe just taking one of the drugs won't trigger the virus? I know the risks go up for most of the side effects when people take two together. From what I've read that's a pretty rare thing to happen with Humira, I've really only read about it happening with Tysabri to be honest. I'm on Humira and I'm not going to worry about that happening, good to know about it, but I wouldn't let it scare anyone away from treatment. Sounds extremely rare.

Perhaps as Ides said, maybe they can start you on low doses and watch you closely. Otherwise you could try the natural routes. Your disease sounds pretty severe though. But it's worth a shot.

I would not go back on the immunosuppressants...try everything else first...anti-MAP, diet, surgery, etc. I'm so sorry you are facing this!!

Hi everyone! Thank you from the bottom of my heart for all your thoughts and advice. Just to clarify some points... I live in Canada so Mayo Clinic etc is out of the question unfortunately :( ... I have anaphylactic response to prednisone and dexamethasone so I cannot take those either (it just keeps getting better doesn't it)... I am awaiting to see my neurologist (he is taking care of the PML side of things) for his view on low doses of Imuran (I was taking 150mg before)..I am going to see a naturopath within a week or two (very excited!!!)... The last thing I want to do is scare people off of Humira / Imuran as it seems I have a very rare case, but it is noted that one or both of these drugs can cause PML (not just Tsyrabi), MS etc. etc. ..... I am going to research the SCD diet today - can anyone recommend a book / website they found most helpful? The more I learn about this disease (Crohn's) the more I realize how complex it can be and I am at the point I am willing to do anything and the most natural ways seem to be most appealing at this point. Thanks everyone!!! Ive had my moments of anger, denial and confusion on this topic recently and now it's time to make some choices...thinking positive!

http://www.breakingtheviciouscycle.info/

This is a link to the book that outlines the diet. I have been on SCD for two and a half months. It ahs helped.

Thx everyone - I am starting SCD on Monday :)

jpnutritionfirst- I assume you do not know what PML is/does... once activated (by being on immunosuppressants) it will kill you within 6-12 months. I would like to live longer than that thank you- I have a 4 year old daughter who needs a mommy. I may have taken your post wrong (and I apologize if I did) but please if you were faced with this decision would you choose a drug that will more than likely kill you (yes, this is rare but without going into a long history just about killed me before) just to have a few good months and the last few horrible as you cripple, loose vision, cognitive ability and cannot even speak? I know I don't want that.... and now I am looking for other answers or options to make my things better somehow...

JP - thank you for your honest outlook on SCD. I too, have mixed feelings but I am willing to give it a try. I am going to a naturopath soon - have you tried that? I just had surgery and I hope that IF you need that, it will get you some relief... I too am already flaring and its not even been 2 months... hang in there :)

You sound like a candidate for alternative treatments. They do work for some people. I guess I am on an alternative treatment since I don't take meds. But I am very lucky to have a mild case of IBD that can be controlled with diet and some supplements especially probiotics.

Official diets weren't that helpful for me but a food diary helped to determine those food triggers that I need to avoid. As Kazbern mentions TPN has been known to be effective.

I would look at the resources section in the Ulcerative Colitis forum for examples of other alternatives that have worked for some people. LDN is mentioned there but I believe it actually is more effective for Crohn's than UC.

If you check out our signatures you will see how each of us tries to manage this disease. Most of our signatures identify meds but you will also see examples of supplements that help and foods that each of us learned to avoid.

For me having an IGG food panel made all the difference in the world for my crohns, SCD did help me a bit before I had the test done but it wasn't 100% but it didn't eliminate all of my problems bc it didn't restrict all off the foods I am intolerant to. It isn't highly studied for CD but there are a couple recent studies that do show a strong correlation. Also one of the biggest for CDers(which has been known since atleast the 80's and not highly disclosed) is yeast intolerance. I think everyone should look into finding a Dr who will do the test, but unfortunately they aren't easy to find.