Tuesday, January 6, 2009

Monthly Follow-up Day

Ohhhh folks, I am a little depressed today. You know that big silence that happens after the holidays are over and the coming months of clouds and snow are staring you in the face? (well if you're from New England anyway...) I'm so there. There are lots of things happening in my life right now that are weighing heavily on my shoulders, fortunately my diet is not part of that pile. I'm feeling good, eating very well and sticking to the plan. Today is my next monthly followup with The Doc. I'm going to go in, say everything's fine, I feel good, and hopefully he'll say great, come back in three months and you can switch to monthly bloodwork. And then tomorrow I will call and make an appointment with one of the other docs I've been wanting to switch to. All I want is a doctor that understands gluten intolerance and supports me in my efforts to heal myself as naturally as possible. Simple, right? Unfortunately there aren't that many of those kinds of docs out there. But I'm determined to find one! I think I have a few good ones in mind.

I've been reading some Crohn's blogs lately and I have to tell you that I find it very difficult. Even though my doctor says my Crohn's is in the moderate to severe category, I don't feel like my symptoms are anywhere near as bad as a lot of other people out there. I don't go to the bathroom 15 times a day. I don't experience pain so bad that I can't move or wake up from it at night. I don't need surgery, I'm off steroids, I generally feel very well compared to others I've read about. I am very fortunate yes, but then I read these other peoples' stories and then all of a sudden that sharp pain that I get just to the side of my belly button is now an indication of a stricture and what if I might need surgery? And my gas is surely a sign of a blockage... you can die from those! You wouldn't believe some of the thoughts that pop into my head. I'm all about supporting others but I have to admit that I can't read these other blogs. It scares me. It causese me to feel worse than I actually am. And I also find myself wondering what on earth these people are eating?? I know I shouldn't be like that, but I also know that there are a lot of people out there with Crohn's that are following a "low residue diet" which essentially means, eat nothing but white toast and white rice. White toast. Also known as "plaster of paris for the intestines." I always want to ask them "have you ever tried a gluten free diet? I mean really tried it? It takes a while to feel better" but I can't because that would be rude and obnoxious of me and most of them will say that the doctor says it won't work. Of course the doctor says it won't work. But your meds aren't working either are they? So I say nothing and read on as they continue to suffer and maybe I'm wrong. Maybe gluten is not the root of all evil. Maybe Crohn's is really just one of those crazy diseases that doesn't care what you eat and will ruin your body no matter what you put into it... but I'm sorry, I just don't believe that. There are hundreds, if not thousands of people out there that are living proof that the right diet can control or even eliminate Crohn's. I intend to be one of those people.

6 comments:

Liz said...

Jenny, I don't think leaving a comment regarding a gluten free diet would be obnoxious at all on those blogs. Just asking the question, and perhaps linking to some article, or the gluten connection book may turn on a lightbulb. There's no harm in trying to help (says the girl who often tries to get her mother to eat gluten-free with little results...)

Lynn Barry said...

WOW I am so glad to find your sites...thanks for leaving that nice note on my blog...HUGS

Mike said...

My doctor pretty strongly discourages her patients from doing too much internet research for exactly the reasons you're describing (though from my presence here you can see how well that's working). It's really hard to keep things in perspective, and especially with matters of the gut it's very easy to think yourself into feeling worse than you should. Call it Internet Intolerance.

The same logic applies to medical message boards as product review sites: the happier you are the less likely you are to post. So aside from the group of regulars that hang out in a given community the majority of the posts are probably coming from the people having the most trouble -- the sample doesn't match the general population very well. They are to Crohn's what Michael Phelps is to swimming. Just because you can swim too doesn't mean you should expect to win 8 gold medals for it.

That said, it also works the other way -- feeling well can be contagious too. I guess that's what we're doing here.

Jenny said...

Mike you're so right on. The first time I went onto crohnsforum.com I was horrified at what I read, but it's so true that those that feel well don't waste the time on forums talking about their symptoms. That's why I like the gluten free community so much, it's generally a very positive atmosphere with a lot of support, not to mention endless delicious recipes!!!

Thanks Liz, I think you're right but I'm still not going to interfere, just try to focus on my own health for now.

Hi Lynn!! It never crossed my mind that I read your blog all the time but you didn't even know of mine haha, glad we connected!

Diana said...

In general, people are way more apt to share a negative experience than a positive one. The same holds for this wacky series of tubes we call the net only more so because you are exposed to a vast array of people's stories rather than the one or two you would normally find. Know what I mean?

gfcfmom said...

I so relate to your not being able to find a doctor that understands the importance of a gluten free diet. Unfortunately, there is no drug rep for a gluten free diet so there is no one to pay for a double blind placebo controlled study. Plus, double blind placebo controlled studies really only work for drugs. Congratulations on healing yourself through diet--despite lack of support from the medical community. Research on the internet can drive one crazy, but it has saved my life and my son's life so I am okay with too much info. But it is amazing how many people won't even try dietary intervention but will do almost anything a doctor recommends. I know it is terrible to say, but I have come to believe people are just lazy and brainwashed to believe a prescription is the answer to everything.