Welcome Home

With another hiatus come and gone, its time to start writing again.

Since my last post, I’ve spent two separate nights in A&E with Crohn’s related pains. Since then, I’ve been without any real help, it has been weeks and weeks of pain and frustration. That was up until the start of September when I was working too much, too hard, and I had a flare up. I struggled on, continued to fulfill my responsibilities at work, but would come home and sleep. I was too tired to make dinner, to wash properly without being in pain, too lazy to be sociable. I was a mess. I finally got to my GI appointment a couple of weeks ago and the decision was made to try biological treatment once more. So, yesterday I spent the afternoon in the Endoscopy Suite having a double scope. Two days after coming home from holiday, I was, and have been whilst away, a wreck.

I’d weaned myself off Tramadol, but was still in constant pain, in some way, shape or form. Amazing how much easier gut ache is after your body finds pain elsewhere. Comparable; I would take my Crohnie gut pains over my toothache or IA (Inflammatory Arthritis) any day. But I know that my body finds pain elsewhere when I am desperately close to flare, or in this case, flaring already. I hasten to add here, I have not ignored my flare up, nor my pain. I’ve shut down the Crohn’s group for a while whilst I was recuperating. I also cancelled a weekend away and took it very easy and slow whilst on holiday last week with the boyfriend. Sadly, that didn’t do much, and if yesterdays evidence is anything to go by, it won’t get better for a while.

Alas, I sat on the gurney in the scoping room, talking to the doctor – who I learnt is my new consultant; what a way to meet him huh? – as he read my folder. I was nervous; I’d never had a Gastroscopy before, and I was pretty sure my Flexi Sigmodoscopy was going to hurt BAD; so I nodded to all his questions, didn’t trust my voice to not crack from emotion:

“Still having uncomfortable movements? Still watery? Still 7 a day? Still bloated and got abdominal pain? Still got the reflux? Still fatigued? How bad is the pain?”

“It’s constant. I can’t go a day without painkillers or without finding a body part that hurts..”

I was close to tears. I knew how much was riding on the procedures outcome. I was unsure if I was sick enough to warrant them to apply for biological funding again. I knew it was alot of money and it would take a while to come back, but I just wanted fixing. Which in itself is a stupid request. They can not fix me in the traditional “You-break-your-leg-I-put-it-back-together-again” , Crohn’s is not like that. That’s what makes it suck so very much, it’s so fickle and unfair, just when things settle down, it never seems to last very long with me. Its been just over two years and here we are again looking at biological treatment. It’s not a long time at all, but in the same breath, it feels like a gut wrenching amount of time.

So, I get throat spray for the Upper GI and he gives me just under half of the full sedation. The camera goes in and I gag as he eases it down further and into my stomach. I cough so much, its hard not to cry at that point. They take some samples and remove the camera. They spin the bed, which at this point, I am very glad of the sedation as I feel as light a feather, before they start the Flexi. My Crohn’s was diagnosed by Flexi two years ago and having had it done since and a full Colonoscopy, it will remain the most painful procedure I’ve had done. And now I know it’s not because of the pain I was in, it was the actual procedure. This was the same, I could feel it all; although it now already feels like ages ago and is a very fuzzy memory, the pain of the camera in my sigmoid made me scream. Or at least, I’m pretty sure I screamed. I’ve got a feeling he made it up to my narrowing and that was when it got tricky and he inflated my gut so much to see, I just yelled.

It’s take almost 24 hrs for all the abdominal pain to subside (without painkillers) and I’m left with just a very sore throat.

I had a hiatus hernia in my esophagus, polyps in my sigmoid and active disease. Once my lab results come back in two weeks, I will attend clinic to find out when I start Infliximab. Until then, I just wait.
Though, I now know for sure I am active once more, I’m going to be careful, without question or hesitation, my health comes first. I need to be as healthy as possible before starting treatment once again. It means going back to the routine blood testing and the precautions of biological treatment: knowing I have a reduced immunity to infections and sickness. It’s like being a newly diagnosed patient again, because this is where I was exactly two years ago. I might not have sky-high CRP and WBC nor dramatic weight loss, but I am sick, as my IBD nurse always likes to remind me. Her solid mantra of “you can go out and have a good life but do not forget you are sick and always will be” seemed strange at first, but once you hear it every conversation you have over the phone or in person (which have been more frequent of late) it becomes the norm. Shame others don’t understand and accept that as easily as they should.

I do know that it will be a long three weeks until my next appointment, but it will also fly. I pray and hope for some good days in that time. I don’t ask for much more, I’ve learnt to be grateful for just that these days.