Hey Derek.
I’m really sorry to hear that you're going through a tough time. I’ll try to help in any way I can by sharing my ideas, experience and knowledge, and you can take what you will from it.
First off, is that I have a “flare-up diet” and a “normal diet”. As I’m sure you already know, your gut is in a hyper-sensitive state during this "flare" time, so treat it with love. Everything you put into your mouth you have to ask “is this going to make me stronger or weaker?” and make the best decision for yourself. I also like my “if it’s white, don’t bite” rule. When I’m in a flare I’m pretty much a Paleo, but I do still eat probiotic yogurts in this flare state. DO NOT eat heavily processed, heavily sweetened yogurts (I prefer Noosa). I found that cutting out all dairy weakened my brain state and I was even more forgetful, stressed and couldn’t concentrate; adding a bit of healthy dairy back in solved this. Also, NO ALCOHOL. That is a major bonus to your gut that it will thank you for. So it goes like this: no processed foods, no alcohol, no grains, limited dairy, very limited sugars, avoid cruciferous veggies as they cause bloat and pain. Yeast is also a trigger. You CAN do this!
My normal diet, when not experiencing a flare or any form of symptoms is gluten-free. Gluten is an inflammatory agent in the gut so I always steer far clear of gluten, although I know sometimes it sneaks in there in places I haven’t noticed it.
When you make changes to your diet it can become quite stressful mentally and emotionally. I got jealous of everyone always eating and drinking whatever they wanted, without thought, all around me; while I had to read every label, and put careful thought into every little thing that I put in my body; it was a hard road at times and I definitely had a couple mental meltdowns. Over time, you will realize that you feel so much stronger and healthier, and you’ll be glad that you are taking care of your body and treating it with love, and wishing everyone else around you could feel the benefit of eating like this too.
Second, get a therapist, one that is familiar with your disease and has helped other patients. You know how hard this journey is at times; you feel weak, exhausted, alone, like no one understands how difficult it is just to get out of bed for 4 hours each day; and how terrible those 4 hours can be. I’ve been there. I’ve hardly been able to work this year, lost my job because for the past 2 years I had hepatitis, whooping cough, pneumonia, and the worst Crohn’s flare of my life lasting several months. Seeing a therapist will give you resources and coping skills so that even on your worst day, you still have support and skills to cope. I know some people think that seeing a therapist has a stigmatism, but honestly, you really gotta try it before you knock it; and realize that you might need to try a few therapists until you find the right fit. A lot of therapists are offering Skype sessions now too, so you don’t have to get out of bed or off the couch if you can’t be there in person.
Third, I’m all about finding natural ways to heal the body, BUT be careful what you choose for supplements/vitamins etc. Those items are not governed by the FDA so manufacturers are allowed to put ingredients in there and don’t have to list them. I was taking all kinds of supplements and finally realized that that they were not helping me, and in fact, perhaps harming. Like I said I’m all about natural healing, but for me personally, with my hyper-active system, it wasn’t a good plan for me. Research your brands carefully and be sure that they are operating with integrity and have many recommendations behind them. Be careful with fish oils, as they can actually promote gut inflammation. Always buy supplements/vitamins that are GF, preservative free, minimal fillers. Talk to your doctor before adding anything new to your regimen. Also ask them about the VSL3 probiotic; it’s one thing that without a doubt works for me, is clinically tested and proven to benefit IBD patients.
Fourth, you need a GI doctor that is supportive, caring and will spend as much time as you need with you. I found the most wonderful care team @ University of Colorado Hospital. It’s not close to home, but it’s worth the drive to see a comprehensive team specialized in bowel disease. It took a lot of trial and error to find the right doctor team and meds. I’m relieved to have found the doctors at UCH, they are my saving grace.
Last, find healing and support in body work and energy work like massage, cranial sacral therapy and reiki. Once again, don’t knock it until you’ve tried it. It can help you integrate your talk therapy, work through emotions, relieve stress, increase energy and strength and heal your body, mind and soul. Start meditation or join a meditation class, try a gentle yoga style. All 3 parts of you (M/B/S) need to be working towards the same goal.
It will get better. I know it feels like your journey has been so long and painful and its hard to imagine that it can go on any longer, but YOU CAN DO THIS!
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Severe CD dx 2012
Working: Cimzia, VSL3, B-vitamins – YIPEEEEE! Doing good!
Failed: azathioprine, mesalamine, entocort
Unfortunately, I don't have any advice but I'm sure there are others here who have been in similar situations and can help you. We're all eager to provide any support for you we can!
