More than just a bag lady

 It’s been a while since I wrote a blog post and during that time I’ve been back in hospital. Over Christmas and the New Year I had that awful flu type bug that seemed to be doing the rounds and then just as I was getting over that my bowel disease thought it would be a good time to kick off. So I’ve basically spent the last 5 weeks in bed.  I’ve been on a reducing dose course of steroids for months now but whenever I’ve dropped below a certain dose all my symptoms return with a vengeance. So in early January I got in touch with the specialist IBD nurses who in turn got in touch with the gastroenterology consultant who said that they wanted to see my in clinic. The next day.  So off I went to the clinic where the Dr put me back up to the maximum dose in the hope that it would control the flare up I was experiencing and I would start to feel better. Sadly, this didn’t happen and I just felt worse and worse so I rang the IBD nurses again almost a week later who said that I ...

I’m so fed up. I’m still feeling so poorly and have barely made it out of bed for almost 2 weeks now. I should be used to prolonged periods of time feeling ill and stuck in bed but since being discharged in November I’d felt the most well I had for years and I really quite enjoyed it. So to be back to this, well it’s hit me pretty hard. It’s not just feeling crap from this bug that’s got me down; my bowel has gone crazy. I’m in a lot of pain, going to the loo 20+ times a day and I think it’s because my steroid dose has reduced so I’m going to have to get in touch with the hospital and see if I can put the dose up. Again. According to my original discharge plan I should have been off the steroids weeks ago but whenever the dose gets below 30mg it all just kicks off. I don’t know how long I can stay on the steroids and I know that one of the side effects of long term use is that it affects your bones which is worrying as I already have osteopenia, the precursor to osteoporosis. ...

Looking back on my New Years Eve Facebook memories I spot a recurring theme. Each year I reflect on the shit time I’ve had with my health and hope that the coming new year will be better. But they never are. Every year my health seems to deteriorate and brings me a set of new challenges to deal with. But every single New Years Eve I hope that this will be the year where my luck will finally change. I continue to have hope because I honestly have to believe that one day things will get better. Things cannot always be this hard. But I’ve been thinking that for almost 14 years now and sometimes it’s tough to stay optimistic.  So what do I wish for in 2023? I would like to spend more time at home than in hospital this coming year- something I’ve not managed to do in the last 2 years. I want the immunosuppressant medication to work; for it to keep my bowel disease in remission and ultimately remove the need for any surgery. But if it doesn’t and I do need surgery then I hope that this w...

I’m currently in bed with a temperature, hacking cough and feeling like I’ve done 10 rounds with Mike Tyson. It would appear that I’ve succumbed to one of the many winter bugs doing the rounds which isn’t surprising given that 1) I’m immunocompromised and 2) both the kids have been poorly recently. To be honest it’s been a bit of a miracle that I’ve not been sick sooner. But despite knowing that the germs would eventually get me I’m still feeling rubbish and very, very sorry for myself!  The thing that does concern me is that if I get an infection then I cannot have my weekly injection and I’m worried that if I miss a dose then I will end up suffering with my bowels as a consequence. This comes on the back of my appointment earlier in the week with the community pain team where I sat there and told them I was the most well I had been for years! I obviously spoke too soon! I had a MDT (multi disciplinary team) meeting with their lead pharmacist and their occupational health/CBT spec...

What have I been up to the last couple of weeks? Living is the answer! I’ve been able to take the kids to school, do the food shop, have family dinners, see family and go out with friends. And it’s been bloody brilliant!  That’s not to say that everything has been hunky dory. I’m on a reducing dose of steroids and 10 days ago my dose reduced from 30mg to 25mg. Within 2 days I was in agony, going to the toilet all the time and passing blood. So I rang the IBD nurse, who spoke to my consultant and back up to 30mg I went. The plan now is to taper off the steroids really slowly so instead of reducing by 5mg every week the reduction will be every 3 weeks. Hopefully that will give my body time to adjust to being less reliant on the steroids and stop me from flaring when the doses get lower.  I think the adalimumab injections are definitely helping. Since being on these weekly I have felt soooo much better. But to get 5 good days a week I have to have 2 crap ones. I inject every Mond...

I’ve been home now for by almost 2 weeks and I’m loving it! Since getting out of hospital I’ve been able to start doing all the things that I wanted to do with Hubby and the kids; just boring, mundane, everyday things but things that make me really happy. I’ve been able to do the school runs, help the kids with their homework, get their rooms tidy and even managed to help them set up online banking. We’ve been able to sit down as a family each evening for dinner which is really lovely as now the kids are older it’s pretty much the only time we get together as a family.  Big Girl has been poorly this last week with really bad tonsillitis and a cold and has been off school. She is the worst patient! She’s been extremely demanding and has had me up and down to her every 5 minutes! But she’s hardly ever ill so I can’t really complain and it’s actually nice to be needed. Although it has wore me out! Big Fella has had mock exams so a lot of my time in the evenings  has been spent t...

Last Thursday I had an outpatient appointment with the Community Pain Team (CPT). Believe it or not there is no long term, chronic pain management service within the hospital, which to me is crazy, but probably a result of them not having the budgets for one. As a result when I came out of hospital in the summer I had to go and see my GP and get a referral into the CPT.  While in hospital I am visited a couple of times a week by the pain nurses from the chronic pain team so they can keep an eye on my ketamine and morphine doses. They advised me to attend the outpatient appointment if I possibly could so that when I went home there would be some provisions in place to help manage my pain. One of the things I’ve been looking into and talking about with the doctors and pain nurses is Narcotic Bowel Syndrome. This is a relatively newly recognised condition where the bowel can be damaged due to long term opiate use. It’s becoming more widely recognised and studied as a result of the opi...