The scan showed there was severe inflammation in my small bowel so as well as having IV steroids it was decided to start the adalimumab injections again. I had originally started this immunosuppressant treatment back in May/June but had to stop when I got a line infection and Covid. So I was given the 4 loading doses again and we crossed our fingers that it would help.
Things appeared to get a bit better and back onto oral steroids I went. I even managed to escape from the hospital to go and watch England play netball at the arena with Big Girl.
It was so nice to do something ‘normal’ and forgot for an evening that I had been poorly. But having to go ‘home’ to hospital soon reminds you.
But the following day things took a bit of a turn for the worse and back onto IV steroids I went. When I spoke to the consultant on the ward round he decided he wanted to me to have an endoscopy to see what was going on inside my bowel which I had the following day. Endoscopies aren’t much fun- before having one they give you an enema to clear you out. Because I’d been going to the loo so much my poor bottom was very sore which made having the enema inserted even more unpleasant but needs must! Luckily the doctor doing the procedure gave me plenty of sedation so it wasn’t too painful but still something you’d rather give a wide berth to if at all possible.
Even though I wasn’t feel great I was really looking forward to going to Goose Fair that Saturday night with Hubby and both kids. Being stuck in hospital so often I feel guilty that I don’t get to spend as much time with the kids as I would like. I know they’re getting older and naturally choosing to spend more time with their friends but I still want to make memories with them and I was determined to make it to the fair.
So after resting all day on the Saturday Hubby came and picked me up from the hospital and we drove to the fair where we were able to park in the blue badge section. Although this year we were charged £7 for the privilege when in previous years it had been free. We had a lovely time wandering round the fair with my sister-in-law and niece and nephew too. The kids went on rides, played on the hoopla stall, had burgers and donuts and crepes and it was just wonderful to be there with them, soaking up the atmosphere.
However, after a couple of hours I started to feel poorly and then the pain kicked in. It got so bad I was struggling to walk and so we headed back to the car. Thank goodness we didn’t have far to walk otherwise I don’t think I would have made it. Hubby drove me straight back to the hospital but by the time we got there the pain was so intense he had to put me in a wheelchair to get me back to the ward. Once on the ward Hubby undressed me and got me into my pjs while the nurses rallied round to dose me up with pain relief and other meds.
That night was one of the worst nights I’ve had in a long time. I was going to the toilet every 30 minutes and was losing a lot of blood from my back passage. I got no sleep and was in absolute agony. On Sunday the on call gastro doctor came to see me and decided to start me on IV antibiotics in case there was an infection in my bowel. My blood tests also showed that my phosphate levels were very, very low so they needed to give me some infusions to top that up.
By Monday things had started to settle down again so the doctors made the decision to move me onto oral steroids and antibiotics to see how I would do on them. And so far, so good. My bowels seem to have settled down and the pain has reduced; it feels like I’ve finally turned a corner. But my phosphate levels continue to be extremely low despite getting daily infusions to top them up. To begin with the doctors wondered if it was an anomaly but daily blood tests show that my levels aren’t improving. They’re now saying that there could be an issue with my thyroid causing the levels to be low, which the endocrinologists will need to look into.
I don’t know if it’s the result of having such low phosphate levels or if it’s the cumulative effect of the last few weeks but I am exhausted. Exhausted to the point of struggling to take the 2 steps to my bathroom from my bed. Yesterday I was in bed all day and asleep for most of it. The times I got up to go to the loo I had to get a nurse to help me back to bed afterwards. Today has been a little better but even just walking around the ward for a couple of minutes has left me so physically drained it’s ridiculous. That’s one of the reasons I’ve not blogged much during this stay- I’ve either felt too poorly or been too wiped out to do anything.
The plan for now is to reduce the dose of ketamine I’m on and then stop it as I can’t be discharged home on it, while also gradually reducing the dose of oral steroids. I’m going to continue to have the adalimumab injections at home and I’ve got a delivery of them due next week. If they can sort out the issue of my phosphate levels then the plan is to try and get me home at some point next week and I can’t wait. It’s half term so it will be really nice to be able to get home to spend some time with the kids and maybe try and do some stuff together as a family.
This stay has turned out to be longer than I expected- I had thought I would probably be here for a fortnight and instead it’s fast approaching a month. I’m so fed up of spending so much time in hospital but know that there’s nothing I can do about it so I just feel helpless. I hate how much my health impacts my family and how Hubby is constantly left to pick up the pieces and hold everything together when I’m in hospital. But I also know how lucky I am to have him and I would be lost without his constant love and support.
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