How far do I go, with hanging on? Until I’m on the floor, unconscious, perfed bowel and all? Or do I advocate the hell out of my GI clinic appointment this afternoon?

This is the old age question I’ve been asking myself for the last couple months.

Do I stop taking the Humira? I’m in the process of doing what is necessary to examine what is really going on inside. If it is nothing, I’d like to try a med free life for a while. But I doubt that will be the outcome. The symptoms I’m experiencing aren’t exactly cause for major concern but its still worrisome that Humira might be the only thing keeping me going.

The other options, I’m pretty sure, aren’t much different. To my mind, they are Infliximab, Azathoprine or LDN (Low Dose Notroxate) all of which are powerful drugs. Hell, all Crohn’s Disease medications do something that can’t be done by our bodies, hence the title: INFLAMATORY BOWEL DISEASE, AUTO IMMUNE DISORDER. I understand that typically a GI would know the risks v benefits of such changes in medication for a Crohn’s sufferer as myself – mine is located in my Colon and commonly called Crohn’s Colitis (if you want to get technical) and is server, hence why I’m on / have been on Humira for a year  – before anything changes. And he is probably thinking why change things if they are working?

But, here comes the anger..

I know my body better than any doctor, nurse or health professional does. Their experience and knowledge does not go unnoticed by my brain and I do make an effort to understand and appreciate those two factors. But sadly, I’m the only one who know my body. I know what hurts it and what causes it pain. I control what I eat to avoid the pains in order to live my life in the best way I see fit at the present time. I’m not asking for the problem to be cut out and thrown away – I am not so naive to know that IBD cannot be cured and surgery is problematic, risky and sometimes not worth the aggro until ABSOUTELY NECESSARY – I am just asking for more options.

I can not live as I am now.

I will stick to a diet, a regime of good foods that my gut enjoys and can easily process. I will take medications on a daily basis. I will trek to the hospital for tests and scans and stabs with a needle if it needs to be done. I am and will be a good patient. But right now, I am a bad patient. Because I am disagreeing with the current treatment regime.

NICE – The National Institute of Clinical Excellence – in the UK set out the treatment guidlines for both Infliximab and Adalimumab for moderate to severe Crohn’s Disease as being “a planned course of treatment until treatment failure (including the need for surgery) or for 12 months, whichever is shorter. Treatment should then only be continued if there is clear evidence of ongoing active disease.”

I’ve achieved clinical remission with Humira since May of this year. I am hoping that these recent symptoms have not upset my disease and made it active once more. That would mean the Humira is now having no controlling effect on my bowels and I need to come off it. Or, if there is no activity, I have reached my 12 months, and should come off it.

Considering this, are these my only two options?

What if they decide to keep me on it, under their guidance? That is technically still allowed, if the patient and medical team treating said patient agree that is the way forward. That would mean another 12 months of injections every two weeks, more weight gain, painful joints and general moaning on my part of how awkward I feel. Preferable, I would like that to not be a factor. I would like my body to be the evidence I need to get moving forward. Yes, I can see that to some degree, finding a treatment that works is sometimes hard and few and far between. And complaining about a treatment that is working isn’t exactly graceful of me, considering how hard it was to get to this point, and the others who suffer besides myself. But this is not healthy. This pain is disturbing my life. The weight gain is beyond the parameters for what I would ever consider ‘okay’, it is becoming a joke.

So, if all this is the case, how do I advocate for change? How do I go into my doctors office and tell him I am unhappy and want something to change? How far will he go to see me going down the right path? What if he considers this the right path? That no change is needed? Then what?

I am going to try and be more aggressive with my approach. Not in the way that makes me grumpy and ignorant and dismissive, but a gentle questioning of why this is happening and what are we going to do about it. Advocating for myself has always difficult; I was in no position the last time they changed my medications, because I was so unwell, I just nodded and had a nap before being admitted. I was very sick, I didn’t know how to advocate for myself with my GI. I just took the pills and prayed for some relief. I was willing to climb the IBD medication pyramid to the near top in order to get better. I moan about Humira but it did help alot. But now, I’ve had enough of the other effects it has on my body. I’m only 24, I would like to not pump my body full of poison every two weeks, ta very much.

So, my reading for this afternoon is the following delightful posts by IBD bloggers and websites alike about SELF ADVOCACY.

The Bright Side of Crohn’s –Advocating for your Medical Care

Healthy Place – Speaking Out for Youself: A Self Help Guide

Self Advocacy

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