This is MY disease

Good morning people! How is everyone doing?

I am absolutely grand, albeit I have had a really rough few weeks. It’s been tough, and I’ve considered coming back home so many times BUT I am still in Australia. I haven’t boarded that plane yet!

This post, I want to talk to you about some comments I have received. No, no, not a “Think before you speak” part II but something a little more serious.

Around January 2012, when all my plans were kicking off for Australia and I had booked flights, my surgeon was unsure as to whether I was going to be able to make it because my pouchitis was so bad.

We had exhausted all antibiotics and he was talking about putting me back on steroids. I freaked out. ERM HELLO!!! I had the operations in the hope that I wouldn’t have to go back on the dreaded prednisolone. I flat out refused to which my surgeon said that it might be our only option.

Cue me going on a massive research binge to see if I could find other alternatives. I found, evidence to suggest that you can dramatically reduce chronic pouchitis with infliximab/remicade infusions. This drug is generally used for crohns patients but I was like “gimme, gimme, gimme” if it meant I didn’t have to have pouchitis.

I suggested this to my surgeon, who rejected it! Saying that we haven’t exhausted all options yet and suggested, once again steroids.

That’s the moment I completely lost faith in my surgeon.

Here I was bringing him evidence, and not evidence in terms of people who had tried it, I had read through many medical journals, articles and had printed off and highlighted the information to show him. He just flat out declined.

I now know its because he is meant to follow a certain kind of protocol and we hadn’t, in his eyes “gone through the system”. But surely your patients care is more important? My quality of life was severely affected and here I was trying to find ways to beat this, to lead a more fulfilling life and he wasn’t having it because we hadn’t “gone through the system”

I struggled for a few months, trying more antibiotics to avoid taking steroids and then in July/August I stopped taking medication.

Why am I going to continue to put chemicals in my body if they are not doing anything to heal me?

And so began my journey of a more natural path to eradicate the pouchitis.

People were like “Saaayyy whaaaaat?” and started to tell me all the reasons why I should stick with the advice from my surgeon. That I should continue taking the medication. That the natural path and diet changes just aren’t going to work and that I was silly for thinking that they would.

WHOA THERE NELLY!

Is this not my body? Is this not my disease? Surely then I have the right to chose how I want to fight it and what works best for me?

Something I was told from the beginning of having Ulcerative colitis was that IBD effects everybody differently.

So why should my treatment be the same as yours?

I write this blog to show how I cope with the disease. I by no means say that if you have IBD you should do what I’m doing. I have read of people who have kept themselves in remission by going on a raw food diet. Hell if I went on a raw food diet I would never leave my bathroom!

Others find that they have to have medications to keep their flares in check and that’s the only thing that works for them. Not a change in diet or health supplements or anything like that.

I have finally found something that works for me. I was antibiotic free for 8 months and I am currently on them now, not because of my IBD but because my wisdom tooth became infected.

I have found that the natural supplements that I take, the reiki healing that I do, (I’ll explain reiki in another post) acupuncture and certain foods that I now avoid, are way better for me than the antibiotics that I used to take.

Since having my reversal, I have never been so healthy and sure, I still have problems here and there but my quality of life has improved dramatically.

I have found the things that work for me, and I will continue to work at this disease the way that I see fit because it’s my body, its my disease.

 

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