Azathioprine + Remicade/Humira and food tolerance

[Lawrence89]

Hi everyone, my GI wants to start me on Azathioprine + an anti TNF drug and I was hoping someone could tell me their experience with gaining weight and tolerating food while on this drug combination (or failing that on either of the drug types alone).

I've never been on either Aza or a biologic and my doctor seems to think it'll do wonders for my weight (I'm 6'1, 135lbs so definitely underweight). What I'd love to be able to do is eat a wider range of food as I currently don't digest a lot of food very well at all and even in times when I've had very few/no symptoms my diet range was limited. I know it's kind of crazy but my girlfriend who also has Crohn's says she could eat virtually anything after starting Remicade and I'd absolutely love to be able to have a normal pizza again (I don't currently do dairy) for the first time in almost 10 years. I know being on meds isn't an excuse to eat whatever but I'd like to think if I'm going to take these medications that I'll live a bit more normally...

 

[Crohns08]

I have never done a dual therapy, but when I tried biologics (Humira and Remicade), I could eat whatever I wanted as soon as the meds kicked in.

 

[24601]

I want to be able to say wonderful things about the ability of meds to allow you to undoubtedly eat whatever you want but that hasn't been my experience. I haven't ever been able to eat 'normally' since I was diagnosed with Crohn's and couldn't eat all that normally even after having strictures removed or being on high doses of pred (with no strictures) - that one really surprised my doc because he said "you can eat whatever you want now" and I couldn't at all! I guess I'm just one of those people for whom diet will always play a large role. But we're all different and some of us are outliers.

For me the thing that has made the biggest difference to my ability to eat has been having strictures removed. I'm currently eating the most normal diet that I ever have since diagnosis - and it includes raw carrots, cabbage and nuts :ywow:

 

[Lawrence89]

Thank you both.
yeah I fear I'm one of those overly sensitive to food types I do think the narrowing is making it worse though, the increased diarrhea would be linked to that I believe. Raw carrots, cabbage and nuts though....WOAH! I couldn't imagine being able to digest those things!
What things still make you have pain or go to the toilet straight away?

 

[24601]

Well for me the symptoms I most associate with eating are bloating and abdominal distension (to the point where it is seriously painful) and I get serious brain fog (I describe it as feeling like I've been poisoned...I guess it feels a bit like food poisoning but it isn't or at least wouldn't be for anyone else).

I think those symptoms might be mostly a result of SIBO and that's something that waxes and wanes a bit like Crohn's can so I think I have these two effects added together that can vary how I respond to food. I think the SIBO might be the major thing that I notice with respect to diet though because I mainly have to avoid carbs and not have foods containing too much sugar.

My main dietary rule that I stick to is simple fresh food prepared at home - mainly so I know just what's in it and can keep it fairly plain. I have a real problem with anything overly seasoned (or maybe seasoned at all?) and it's not just about avoiding spicy food but also just when food is strongly flavored. I pretty much have a rule that I stick to meals with only a few ingredients...and when I tell people that (you know when they are asking why I don't want to eat their food or I'm carefully choosing something off the menu) they often look disbelieving. Maybe they'd do that if I said I was gluten or lactose intolerant too but I feel like my explanation is too vague for them and they want me to pin it down more for them. I guess they think our digestive systems are so easy to understand...if only they knew.

SIBO first became an issue when I had bad strictures and though it's better now than it was with the strictures I think it still plays a large role in my symptoms and possibly always will (since I'm now missing my ileocecal valve and that tends to pre-dispose to SIBO).

Before SIBO was an issue I still had food sensitivites but it's hard to know how much the strictures influenced those. I tried an elmination diet but I could never really make any progress because I had so many tight strictures that I was always in pain and I really couldn't get any useful feedback from my body because the only thing that agreed with me was no food.

I definitely couldn't eat any raw vegetables in the past as they caused a painful obstruction or two that I didn't want to repeat. I've never really had milk as from childhood that caused stomach aches but I do seem to tolerate SCD 24 hour yogurt well, double cream in moderation and butter and a little cheese - more so these days then before when I had strictures.

I think the only thing that ever seemed like the classic Crohn's increased diarrhea reaction was when I ate a salad in a flare and even though I was on pred that basically came through really quick and totally undigested. It was early days and I was still learning but it definitely put me off trying salad for a while.

Anyway that's my rambling account of my Crohn's and diet. Diet is such an individual thing it seems and though hopefully you will have good luck with eating a wider range of foods on Remicade, I feel like it's good if you are making that choice because it's right for treating the disease and then getting to eat what you want will be a bonus, rather than finding you still can't and being disappointed.