Talking a bit about healthcare here so I should start out by saying these are my own opinions and do not necessarily reflect the views of my employer and they do not endorse the view here in any way, etc, etc.
Anyone who doesn’t want to hear about digestive disorders can feel free to skip this post. I wouldn’t blame you. I guess I’ll get this out there for anyone who doesn’t know, I have ulcerative colitis. It’s about as much fun as it sounds like. I don’t usually talk much about it, as it’s not a pleasant to bring up in conversation. I don’t mind doing so in private, if you’re interested, if you’re concerned, feel free to reach out. I’m making an exception and talking about it in public because I read this article on Boing Boing yesterday and it really pissed me off and I need to get this off my chest. I normally enjoy that blog that post is spreading things which are possibly going to be actively harmful to people with serious medical conditions.
The whole thing has a tone like there’s this dark conspiracy among doctors to keep people from curing their IBD. So first of all, my personal experience with my disease. I have my symptoms mostly under control and lead normal life. I’m 25 and I will probably take pills every day for the rest of my life, barring some medical breakthrough. That’s not great but it pretty seriously beats the alternative of not taking the pills though. There’s scene in Firefly where Mal finds out they’ve stolen a town’s medicine. The sheriff, not knowing that Mal was the thief, tells him that if you get the medicine regularly you can “live like a person.” I don’t think many people can appreciate the realitly of that line the way I do. I’ll leave it at that and spare you the unpleasant details of the what it was like between when I got sick and when I was finally diagnosed and got medicine.
So what’s the subject of that article’s experience with medication:
Pentasa barely worked. It gave him a few more seconds to get to the bathroom. Reid saw his doctor a few months after starting it. Doing better? the doctor asked. Yeah, doing better, said Reid. The doctor did not ask for details. He ordered various lab tests but never learned how little Pentasa helped. Reid saw him regularly for several years, but never told him.
After high school, Reid went to college at the Rochester Institute of Technology. During college, he had diarrhea about six times per day.
Is it his doctor’s fault that he wasn’t clear that his medicine wasn’t working? When you’re having diarrhea 6 times a day, you go to your gastroenterolist and you tell him your symptoms, and you ask what your options are. If he doesn’t give you other options, your doctor is an asshole and you find a better doctor. There are lot of different treatment options for IBD, many of which are stronger than Pentasa, though have more serious side effects. I can tell you that steroids are no picnic, but the sure as hell beat diarrhea 6 times a day.
Reid started having extreme abdominal pain. It would be really intense for a few seconds, then die down, then return. He wanted to go to the hospital but was in too much pain to drive.
Important point, when you have IBD and you’re in too much abdominal pain to drive to the hospital, that’s when you should DEFINITELY FIND A WAY TO GET TO THE HOSPITAL. Call an ambulance if you need to. Ignoring that is how you end up dead from a ruptured colon. Have I gotten the point across that this guy wasn’t properly utilizing the western medicine that he seems to write off?
At this point in the article, Reid discovers a diet that’s supposed to help with his condition. I’ve done a lot of research and there are dozens of diets that supposedly help with IBD. They’re all mutually contradictory and none of them are backed by medical science. There is actual medical literature which that you can go read, which tries to find a culprit but doesn’t come up with anything conclusive. I do think the change in diet helped his condition, but not anything specific about the diet he chose.
He had been eating Hungry Man TV dinners, Cookie Crisp cereal, Papa John’s pizza, Mountain Dew soda, potato chips, gummy bears, and so on.
When they say IBD doesn’t have a dietary cause the mean there isn’t a specific thing you should avoid. For instance, with Celiac’s disease you avoid gluten. Just because IBD doesn’t have a dietary cause doesn’t make it a good idea to eat garbage when you have diarrhea 6 times a day. I’m sort of at a loss for how a person wouldn’t realize that. When I’m having a flare up I live off of bland, easy to digest foods. It’s not rocket science. When I’m not having a flare up I take eating healthy very seriously without being on any particular diet for my condition.
His symptoms were gone. A few months later, he saw his gastroenterologist. I’m doing great, he said, and showed the doctor a list of what he was eating. The doctor showed no interest. Reid asked if he could stop taking Pentasa. (He had already stopped Flagyl.) The doctor said no, let’s wait six months. On rare occasions, maybe once every four months, diarrhea returned. It seemed to be caused by eating out, perhaps by bread crumbs in the hamburger. He stopped taking Pentasa. Nothing changed.
IBD can go into remission and come back later on. Generally doctors keep patients on low doses of medication to prevent it from coming back. Also, perhaps his doctor wasn’t interested in the diet because there’s no statistical evidence that it works, while there have been studies that show that the medication works.
IBD is a mysterious disease. The cause remains unknown and for any given person it will flare up and go into remission, throughout their lives, for no apparent reason. Obviously this one guy’s anecdotal case about how he got his into remission is statistically significant and a cure and we should all stop taking our meds and go on the diet that
Listen, western medicine isn’t perfect. It doesn’t always get everything right the first time. Maybe there are legitimately better, simpler ways to treat my illness out there. Maybe there is a bias towards using drugs rather than diet or other more nature things. For thousands of years medicine worked the way this guy wants. People went with their guts, they did things that worked anecdotally or intuitively. As often as those sorts of remedies made things better, they made them worse. Raise your hand if you want to go back to the days when bloodletting was considered a legitimate treatment for all kinds of things. I don’t know about you but I think I’ll trust the professionals and stick with the treatments that have scientific backing.
Should you experiment with your diet or other alternative treatments if you have IBD? Sure, talk to your doctor about it. Make sure they don’t think it will be actively harmful or leave you malnourished or anything. It should definitely not be instead of traditional treatment. Doctors are there to help you. There is no shadowy conspiracy of MDs hiding the well know simple, natural diet based cure for IBD and making us all suffer.