twisted insides – a treatment rant

One thing that drives me a little insane is the ‘any alternative to medication is better’ attitude that seems so prevalent amongst many IBD forums that I peruse from time to time. It seems that every time someone posts their story, there are a million replies about the Specific Carbohydrate Diet, and about probiotics, and yada yada yada. Sometimes, people even mention visiting homeopathy specialists. Homeopathy. I’m hoping that they are confusing naturopaths (which I suppose have their place, but we’ll get to that) with homeopathy, because seriously… there are actually still people that buy into that?

I just… what??

Okay. Breathe.

Anyway. There always seems to be a plethora of these folks out there, espousing their anti-medication views. They talk about doctors forcing medications on people. Not listening. Refusing to see reason. Claiming that diet has ‘cured’ their colitis.

NO NO NO.

Okay, maybe I’ve just been lucky when it’s come to doctors – and maybe they’ve just been lucky when it comes to natural ‘cures’. But you don’t cure IBD. Crohn’s and UC are chronic conditions for which there is no cure. You can go into remission, with the right circumstances/drugs/luck. But you don’t get cured. Unless you have UC and have your colon taken out. But, you know, that’s not exactly ideal.

Not to mention the doctor issue. The picture some of these people seem to paint of their health professionals is of money-grubbing, white-coat-wearing con-artists who refuse to listen to anyone but their sacred Hippocratic brethren. My experience has been far different. Both gastroenterologists that I deal with are lovely. They listen to me. They don’t push me into taking things that I’m not comfortable with – and when they think that something is going to be the best course of action, they explain why. They tell me details. I held out for quite some time before taking prednisone – but in the end, I agreed to do it. It was, ultimately, my only option. Because no amount of probiotic capsules or SCD-ing is going to fix me.

Sometimes, though, it’s hard not to feel ‘guilty’, almost. Guilty that I haven’t tried harder at these ‘natural’ approaches – though I can’t say dropping money on expensive supplements is that tempting, especially when most of my prescriptions are $5 a pop and infliximab is free – but then that rational part of my brain reminds me of the old adage – ‘you know what they call alternative medicine that works? MEDICINE.’ This obsession with the SCD is also frustrating – and one of the reasons why the CrohnsDisease subreddit is my favourite IBD place online, there are many realistic, severely diseased people who make sure that anyone extolling the benefits of the SCD are aware that it doesn’t work for everyone. It sure won’t work for me.

Trust me, I would rather ‘cure’ my illness with diet than with however many pills I’m currently taking every day. And I’d definitely prefer it to infusions every eight weeks. But it’s not the reality for those of us with severe disease. When you’re twenty two and being told that you might have to have surgery that could, if it doesn’t go quite according to plan, land you with a stoma for the rest of your life… don’t you think I’ve already run the gamut of options available to me? Not to mention the fact that the damn pills that I’m taking are causing a hell of a butterfly effect. Prednisone makes me more depressed. Which means I take anti-depressants. Which make me lethargic. Which means I’m upping my iron tablets, and having caffeine more often. Both of which make me feel unwell. Which mean I’m popping paracetamol and even tramadol when the going gets even more tough. That’s not exactly my ideal dietary plan for the day.

It’s late. I’m losing my train of thought.

But basically, I wish that people would trust their doctors, and/or trust that those of us who trust our doctors are doing so for a reason.

3 thoughts on “twisted insides – a treatment rant

  1. This is very well written.
    My daughter has UC, so I have some (a little) insight into what you’re experiencing. I even retrained as a Cognitive Hypnotherapist so that I might get the opportunity to help others with their pain, (I’m too close to my daughter to be able to help her much).I never try to persuade someone off their medication. As you say, it’s there for a reason.
    I hope you and your doctors find a way of managing your Crohns effectively for you.
    Wishing you all the best
    Tony

    1. I’m actually UC too, though I do live perpetual fear of it turning out to be Crohn’s in the future. Thanks for your kind comment, always great to hear from people with a vested ‘interest’!

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