Yesterday I had my first clinic appointment with the consultant in Nottingham. As much as I love St Marks one thing I won’t miss about their clinics is them running 2-3 hours late (although that did give me the time to spend with my friend Kitty who would always accompany me to the clinic where we would sit catching up, putting the world to rights and discussing our bowel habits without a care in the world!)
The last week I’ve been feeling even worse and eating is becoming more of a challenge again. There’s not a lot I can manage now that doesn’t send me into hours of agony and if I eat any more Quavers I will start to look like one! The fatigue is crippling and I’m pretty much stuck in bed although I am trying really hard to get outside for a little walk with Buddy when I can even if it’s just for 10 minutes.
At the clinic I was greeted by one of the Deputy Sisters from the ward who just so happens to be one of my favourite nurses on F22. She is quite possibly one of the happiest people you could ever meet and you know when she’s working because you hear her laughing from the minute she arrives on the ward at 7am until the minute she goes home. She asked me how I was and I started to say “I’m ok” because it’s my default reply but she took one look at me and knew I was far from ok. She weighed me and tried to take blood but as usual my veins were having none of it but luckily they had the results from the blood tests I had done last week so I didn’t get stabbed repeatedly. Always a bonus!
I then went in to see the consultant who was there with the dietician and the deputy sister came in too. There are two gastro consultants in Nottingham: Dr A worked at St Marks when I was an inpatient there years ago so I knew him prior to being seen in Nottingham and is fairly young and easy to talk to and Dr B, the one that did my endoscopy recently, is a bowtie wearing kind of old school type of consultant who is probably starting to count down the years to retirement! (I’ve called them Dr A & B to protect their names) In clinic today it was Dr A and he spent a long time asking about the symptoms I have, the medications I’m on, getting me to remind him of my IBD journey and also what I was hoping to get out of the appointment. What was I hoping would happen at the appointment or following on from it? I guess it was to get to the bottom of why I feel so unwell and for a plan to be made which would have steps to making me better, even if they were only baby steps forward. And that’s what I got.
He said that he thinks the steroids are having no effect (and I agree) so I need to be weaned off them because stopping them suddenly can make you very unwell. He told me that the team have discussed my case together in great detail and don’t think there’s enough evidence that biological immunosuppressive medications are going to help me and could in fact make me much more unwell. I was hoping that this type of treatment could be an option worth exploring so if I said I wasn't disappointed I would be lying.
My blood tests showed that I need another blood/iron transfusion as my levels are still way too low which will be contributing to my exhaustion. But they’re going to be doing it as an inpatient cause they want to admit me. As the options are becoming whittled down there are less and less alternatives to surgery and going back to a permanent ileostomy (a stoma) so he wants to try weaning me off the opiates to see if that helps my bowel to function better and if it makes any difference. I am on ridiculous doses of fentanyl, morphine and other opiate based medications. It started after my surgeries in 2012 when the post op pain and bowel spasms never really settled so I was prescribed some of these in small doses and then when back at home the GP’s didn’t know how to manage my pain so just kept increasing the doses. The problem is that I got accustomed to the doses I was prescribed and then needed a higher dose to get any kind of pain relief. I’ve been under a pain consultant for years now and we’ve tried to reduce the doses and did have some success but then as my health started to deteriorate over the last 18 months the doses started to creep up again. To be honest we don’t know which of the medications are having any effect, how much my bowel is actually absorbing and which causes which side effects so detoxing from them will be a good thing. But it has to be done as an inpatient as it would be too dangerous to do it at home. Opiate medications often have a constipating effect on the bowel and Dr A is wondering if after years of taking all of these my bowel has finally given up the fight so to speak. So when I stop taking them my bowel could go into overdrive which is quite scary considering the fact I can go to the toilet up to 30 times in a 24 hour period and what comes out is like water already (sorry if that’s too much info!) So this will have to be managed to make sure I don’t dehydrate and that all my electrolytes don’t end up out of whack and make me even more unwell than I currently am.
They think they will have a bed on Monday so long as nobody who is sicker than me needs it. Dr A said he would have liked to have admitted me yesterday if they had a bed, not only to start the detox but because he could see how much I was struggling with all of the other symptoms. I know it’s not going to be a fun and that the next few weeks will be tough but if it gives me some quality of life back I’m willing to give it a go. I want to make sure I’ve exhausted all the options available to me before I have to think seriously of having surgery.
I am worried that Hubby is going to have to manage on his own for 2-4 weeks cause at the moment he’s under so much stress at work. I just hope he will cope ok. My parents have offered to do the ironing for him and help in any other way they can but lockdown does make it harder. In the past when I’ve been in hospital Mum would cook dinner a couple of times a week for Hubby and the kids (cause Hubby hates cooking) or Mum and Dad would take the kids out for dinner to give Hubby a break but obviously none of that is allowed right now. The good thing is that he’s working from home whereas in the past he’s had a 4 hour round trip to work which has meant the kids having to fend for themselves after school (they are teenagers for those who don’t know- we didn’t have little latch key kids coming home from primary school watching CBeebies while home alone!)
I do worry about the effect that another hospital admission will have on the kids. The last 12 months have been tough enough with Covid, lockdown, home schooling etc and this will now be my 6th admission in the last 7 months. But I know that I have to do this to give myself a chance at getting some kind of quality of life back. I can’t spend the rest of my life stuck in bed unable to do even the most basic of tasks for myself. And if this can make even the tiniest difference then that will make me a better Mum and the kids will benefit in the long run. That’s what I have to tell myself.
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