Double Check Up – 22.09.16

We spent the morning traveling across the city to Queen Elizabeth Hospital (QE) for my liver check-up. I’ve been attending this particular clinic for almost three years since some routine blood tests revealed very high liver function results. Given my complicated IBD history, I’ve been seeing the head of the department, a Professor; and had lots more blood work done and specialised testing to give me a diagnosis. Not that I’ve ever needed one; my blood work has never shown any more elevated LFTs beyond what my IBD team expect at the given time. That being said, I last attended this clinic in December 2015 because all my follow ups came soon after surgery or hospital admissions in the summer. I could finally update them on what had been happening with my IBD. The outcome of this appointment was still needing to do a liver biopsy; “but no rush, you must recover from your surgery and be comfortable with your ileostomy before we start any more investigations.” Good! They ordered more monitoring blood work – a total of nine vials of blood, wowza – and told if they were abnormal I definitely would need the biopsy. If they were stable, I could be seen in six months’ time to be monitored. I should know next week which way that is going.

I really hope that things remain stable; I’ve just got to a point where my Crohn’s has calmed down – thank you surgery and hopefully the pending Vedolizumab – and I can finally get my confidence up to manage my stoma without problem or panic. I also hope that Good Hope did keep an eye on my liver whist I was in having my subtotal colectomy.

Then it was over to Good Hope for a stoma check-up. I also needed my bloods doing for Vedolizumab on Monday morning. After having such a successful blood draw at the QE, I knew they would have trouble getting more for two more vials for their own needs. Eventually, after going in just a centimeter below the earlier draw, they got it. I’ve now got one huge blue bruise. One less place for my IBD nurse to try on Monday.

It’s over a month since my surgery, so my stoma nurse was going to be ordering my prescription at this appointment. But despite my stitches having dissolved from around my stoma, my skin rash on the left side had gotten worse. I’m on antibiotics for an infection in my surgical wound, so my output has been watery for a couple days, meaning I’m emptied my bag quite a few times more than usual. The most common side effect of said antibiotics is diarrhea so it’s to be expected and the movement of the bag has caused a motion burn. It’s not from the baseplate being cut to the wrong size or not using enough barrier powder. It’s just bad skin and my medication. It made me quite sad actually; I was hoping to have healthy and happy skin by now. I’ve had a small skin rash for three weeks out of the four I’ve had my stoma. It’s frustrating because last time it was because I didn’t resize my bag and I burnt my skin. This isn’t my fault. But my wound is healed and my antibiotics finish today, so hopefully by Monday things have settled down and my skin can heal. I’m back next week to have things checked again and to order my prescription. As I’ve had to try a few different types of convex bags, it wasn’t worth doing and risk it being changed. The good news is that now the stitches are all gone, my stoma is looking really good – pink, healthy, functioning like it should and is a good size and shape.

Having an ileostomy is still such a big thing to get used to. And with every different bag I try, I get used to it all over again. This current bag has a harder baseplate which forces my stoma away from my abdomen and up into the air, hopefully letting the skin heal. I still stare at my stoma as its being changed – yesterday by the nurse and even when I do it – because its moving. Obviously, it’s a part of my bowel and always moves, but it’s just fascinating and kind of hypnotic. It doesn’t make me nervous like it first did in hospital. It’s just part of me.

Which begs the question why am I so scared to shower? Is it because I’m scared the bag will come off and I’ll have to do an unplanned bag change? Yes, probably. But it’s also because I miss just standing under the hot water. I also miss sitting in the bath and reading, completely covered in water. I’ve got a spa day booked for the end of next month and I want to swim, I’ll be submerged then, I need to get over my fear by then. I’m anxious; what if the bag does leak or loosen, I don’t want an accident whist I’m out, that will be mortifying and embarrassing and will put me off doing it again. I don’t want anything to go wrong and give me a complex. I want to return to swimming eventually… and this is all baby steps towards a bigger goal.