Number two. Get it? Continuing the list of things that suck about being sick/having Crohn's.
Everyone has an opinion.
One of the things that really sucks when you are sick is hearing other people tell you what you should and should not do. With Crohn's in particular, I think the misconceptions far outweigh what people actually know about it. And that's not to say that for the most part the people I come across don't have the best intentions. It just doesn't help that puke and shit and guts aren't exactly the best topics for friendly conversation. I can admit myself that I have downplayed the seriousness of this illness or the grossness of it just because it's not an easy thing to talk about. At all.
I think I can speak for all Crohn's sufferers when I say the most irritating thing is when people try to tell you what you shouldn't be eating. I do believe that diet has an effect on symptoms. It's a no brainer; when you have a digestive disease and you eat something that's harder for your body to break down, it's obviously going to cause more problems. However, I explain to people that I'm damned if I do and damned if I don't. Right now in this in between phase I seem to be in, I've been watching my diet stringently and have definitely felt better. But there are times I just count my losses and enjoy a salad or a beer or two, or ten (ha!), knowing that it might make me miserable.
Another thing I hear a lot is people comparing my situation to some friend of a friend who has Crohn's and tried this or that diet or medication or vitamin and found relief. What people don't understand is that this disease is very different for each person. Crohn's can affect everything from your mouth to your ass. There's a lot of intestine in between there and the differences in symptoms will vary greatly depending on which part of the bowel is involved. Therefore, everyone who suffers is different. Everyone has their own way they handle this and it can be quite frustrating when someone believes that because something worked for someone they know, it's going to work for you, too.
I think when all else fails, the best thing you can do for someone is be supportive. Empathy goes a long way with this thing even if you don't completely understand what you are being empathetic about. Just telling someone you're there for them or you can't imagine what they are going through is sufficient enough.
Tysabri #4 tomorrow. I'll let you know how it goes.
Amen, Sista! In the past year and a half since being dx'd I've collected about 8 different books, each one sent by well intentioned friends and family and all professing to have the key to curing my crohn's. The thing is, each one proposes a diet that completely contradicts everything the one before it says. Many of them suggest you live on foods that I personally can't tolerate and others forbid the few foods that I can almost always handle.
Sometimes I worry that if I hear one more person tell me how they knew someone who cured their crohn's with yoga or macaroons, or how "surprised" they are that I can drink with crohn's, I might actually do something to physically harm them. I know they mean well, but I shouldn't have to explain why it's worth it for me to have a slice of pizza or a beer every once in a while when this disease has already robbed me of so much else; and that the difference it might make in the way I feel is so minimal at this point that it will hardly matter compared to the rare few moments of pleasure and normalcy that this Dogfishhead 90 min. IPA will give me. Rant over.
Thanks for bloggin it. Sounds to me like the Tysabri is doing something given your energy levels even with tapering. For me the energy is usually the first sign of improvement. The bowels are always the last to know... Anne
Thanks for your comments, Anne. I was shaking my head in agreement the whole time and I am glad to hear someone else comes across this issue, too. Sometimes when you have people constantly down your neck watching what you are eating and drinking you start to feel guilty even though you know it's not your fault you are sick. I'm glad another Crohn's person can back me up on this! You hit the nail on the head; when you are "sick" you need those normal things like drinking and eating with friends otherwise you'll lose your mind. Hope you are well!
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