One Year On

Ustekinimab Infusion, 24th Jan 2019

On the 5th Feb 2019 it was officially a year since I let some bloodthirsty surgeons knock me out, slice me up, and rip out some of my insides! And while it was not a good experience, (10/10 did not enjoy.) It was the best decision I could have made.

In the year since my surgery I have grown steadily stronger, I have slowly gained weight and gradually felt more and more like myself again. But above all, I have REGAINED THE ABILITY TO CONSUME HUMAN SOLID FOOD.

I am eternally thankful to the doctors, surgeons, nurses and ward staff that looked after me. in order for me to reach this place.

Overall, the progress I have made since having surgery has been invaluable to me. And I do not think it is an exaggeration to say that I got my life back. I’m me again no longer afraid of eating, no longer trapped inside the flat for fear of having an “accident” should I leave it, and able to spend as much time as I like hanging with my friends, walking the dog, or on dates with my husband.

Life is good.

However, on the 24th of Jan this year I had to start my new drug treatment of ustekinimab, an immunosuppressant, with the long term goal of putting my disease in remission. Less than two weeks later, and ironically two days after the anniversary of my surgery, I found myself back in hospital.

I’d noticed a cold coming on in the week up to my hospital stay but I didn’t think too much of it. I’ve been on immunosuppressants before and know that colds are to be expected. I’m old hat at this game after all! Then overnight I started feeling sick, really sick. Barely unable to stand without getting out of breath and woozy. My bag was filling up with liquid too quick, I had to keep emptying it once/twice an hour. And then finally I vomited, but instead of making me feeling better like I hoped it would, I felt worse. By the time morning came I was panicking that for the first time since my surgery, I was back in flare.

I wasn’t. What I had was a virus, probably caused by my immune system being so low and what with it being effin’ freezing this time of year and all. As a result of the vomiting and the bag output, I was severely dehydrated and had to stay in hospital overnight so they could pump some fluid back into me.

Attractive, right? Drip time! 7th Feb 2019

Dehydration is a problem I had been made aware of the moment I had the bag put in. I was told to make sure to drink enough and balance out what I was drinking with foods so as to make sure the fluid was absorbed and didn’t “run through” me. But on the whole I didn’t have to worry about it. The past year I’ve been careful, but not agonising over my food to water ratio. I’ve been lucky in that way, my stoma was doing it’s thing without me having to over analyse about what I was or wasn’t eating/drinking.

Just goes to show how one poxy virus can set you back!

I was discharged after 48 hours, feeling a lot more myself and far more calm knowing I wasn’t in flare. I was given strict instructions to rest up and that’s exactly what I’ve been doing since.

In the end it was nothing serious, and a year on from my surgery it’s pretty impressive that this is the first serious problem I’ve had with the bag since initial recovery. It’s almost alarming how quickly I began to take it all for granted. How much of a shock it was to feel that unwell again. I’m not going to lie, after a year of managing my Crohns it felt like a step back to find myself once again in a hospital bed. But I have to keep reminding myself that my illness is unpredictable.

That I cannot possibly plan for every eventuality.

And that’s okay.

A year on from surgery and I am mostly grateful. There are still some things about my body and my health that infuriate and upset me, and sometimes it’s easy to get hung up on all that I don’t have, rather than what I do. But for the most part I just find myself thinking back to who I was before surgery, and I know that I am lucky. I am lucky to be here, I am lucky to be without pain.

It’s also good to remind myself that what I lack in functioning colons, I make up for in my wonderful husband, my eccentric-crazy friends, my supportive family, my loveable dog, a life full of passions, and my funky, funky self.

There is always a silver lining, even if you have to squint to find it.

Best wishes,

Rachel Writes

3 Comments

  1. Congratulations on a successful post-op year, and hoping the year ahead for you is just as good or better! What a headache to wind up back in the hospital, but I’m glad to see you’re feeling better! πŸ™‚

    Liked by 1 person

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