I’ve had a couple of hospital appointments this week – pretty standard for me though really!
My first one was counselling, on Wednesday. I’m having sessions every four weeks, because I’ve not dealt with everything very well psychologically. As grateful as I am for my bag as it saved my life, I still hate it. And as much as I hate to say it, there are still days where I hate it so much I find myself questioning why I put up with it. I know the answer, because I don’t have another option other than dying. But then I find myself in a vicious cycle of thoughts till I tell myself to stop being so stupid. I cry a lot. Then redo my make up and go about with whatever I was doing.
The lady I see is absolutely lovely though, so it’s really easy to talk to her about everything and anything to do with my life as an ostomate.
My second appointment was yesterday, and it was with a consultant rheumatologist.
For a few years now I’ve had trouble with my knees and the cold. And thinking about it, for a few years now I’ve had trouble with my gut and what foods I can / cannot eat.
When I went to the doctors about it in April / May, my GP referred me to a rheumatologist as he was worried about the fact I said that I didn’t think I could support my own weight. When my knees and hips are bad, it feels like they’ll give way underneath me.
At first, I thought it was just because I’d been so ill and that I was still building up my muscles again. But it’s now a year since surgery, and it’s still bad. In fact, as the weather gets colder, my joints get worse. Just the other day at work, I couldn’t stop my right hand from shaking. I was trying to cut toasties and pick up a ketchup sachet but I couldn’t because my hand was shaking so much which confused and worried me equally.
I was in the appointment for less than five minutes before he mentioned putting me on medication. And it was less than another five minutes before I started crying.
I was told I have arthritis, anxiety and depression and they all need medicating.
I never thought I’d be told I have arthritis at the age of 23, but then again I never thought I’d be told I have an incurable disease so I’m not quite sure why I was surprised to hear that. At the same time though, it was nice to have a label as to what’s causing me so many issues.
No one says it, but I can tell some people get annoyed at work when I say my knees and hips hurt when I get asked why I’m hobbling. I’m sure they just assume I’m making it up because it happens so frequently. But they don’t see me get straight into bed as soon as I get home because my joints are so painful. They don’t see me struggle to get out of bed some days because my knees have literally seized up and don’t want to work – thinking about it, no one sees that because I can’t get out of bed to see anyone!! (Humour again to compensate for feeling crappy about stuff…)
So this new diagnosis of arthritis means I will be on medication for the rest of my life. As for the anxiety and depression, medication may only be a short term thing whilst I’m still going through the motions of hating Sally and accepting myself.
I’ve been prescribed a drug called sulfalazine for the arthritis. It’s in the same group of drugs as one that I was on whilst I was in hospital last year ( I was on mesalazine) however I’ve been told this one is “safer” to use as it has fewer side effects and you can still breastfeed whilst you’re on it. Don’t panic guys – I’m not pregnant. But one day I hope to be and as this medication is a long term thing, i.e. for the rest of my life, I now have to think about things like that. Even if they are in the distant future.
Sulfalazine has a number of uses, the main ones being to treat IBD and arthritis. For a while now the flare in my rectum has been getting worse. Any lengthy periods of sitting down leave me feeling incredibly uncomfortable and visits to the toilets regularly last more than 10 minutes because my body doesn’t know what it’s doing. I’m hoping, that by taking the sulfalazine for my joints, it will also help the flare in my rectal stump. Which means there could be a flare free life for me on the horizon. That’s the dream anyway! I’d love to be able to go to the toilet and not be in pain, or see blood several times a day. Although it happens several times a day and has been happening for a couple of years now, I’m still surprised when I wipe and see blood. I’m not sure why because I know it will be there from how much it hurts whilst I’m sat down, but it still catches me off guard.
I’m not entirely sure what the side effects of sulfalazine include, but I know it can do damage to your liver and kidneys, so for that reason I had a blood test yesterday, and will have one a week for the next month as my dose increases.
I’m starting on one tablet (500mg) a day for a week, then two tablets a day for a week, then three, then finally four. I’ll stay on four tablets a day for the following three months until I have another review with my consultant and then he’ll look back over my bloods, discuss my symptoms again with me and see if there’s been any improvement. Unfortunately, it takes a few months for the drugs to be completely in my system which is why my review won’t be for another four months, but providing everything is okay then I’ll stay on four of these a day for the rest of my life. If thinkgs aren’t okay, then I’ll be prescribed a new drug to try. Kind of a scary thought when you think about it, medication for the rest of my life, however long that may be… Thank goodness I don’t pay for my prescriptions anymore!
My only worry is absorbing them properly. The tablets are fairly large (they also smell like nail varnish remover when you undo the bottle!) and the last time I was taking larger tablets they were coming out my stoma whole, a whole week after I took them. My digestive system is only 4-5 hours now, so for the tablets to struggle through for a whole week was slightly concerning, and painful too!
Update to follow as to whether I absorb them or they come out looking like they do when they go in…