Another hospital stay

I’ve just come home after another 2 weeks in hospital. To say I’m fed up and drained would be an understatement. 

I started feeling poorly again about 3 weeks before I was admitted, around the middle of April. I was getting more pain, feeling more fatigued than usual and inside nothing was working quite right. Because I’m on the adalimumab injections I have to go for routine blood tests every few weeks but after my most recent one I got a phone call from the IBD nurse the next day. She said that all my liver results were elevated, that they needed repeating in a few days time and I couldn’t have my next injection until they had reviewed the results as if they stayed high I might need to stop taking them. But it wasn’t a huge surprise as my liver hasn’t been 100% for some time. Unfortunately being on TPN can cause liver disease/damage and a side effect of the adalimumab is also liver damage so I figured the two combined probably wasn’t good news.

 It was around this time that I was starting to feel pretty bad with my bowel disease so I had gotten in touch with the specialist nurses from F22 and they agreed to do some other blood tests to check if I needed a iron/blood transfusion or to see if there was anything else going on that could be making me feel rubbish. It was only 2 days after the adalimumab blood tests that they did theirs but when they rang and told me my liver results has climbed just in those 2 days it wasn’t great news.

I repeated my adalimumab blood tests again a few days later and although they weren’t great the consultant agreed that he was happy for me to have that weeks injection and that they would monitor me. But little did I know that it would be as an inpatient! 

The blood were done on the Monday but all that week I was too poorly to get out of bed. I was in touch again with the specialist nurses later in the week to see if they could ask the doctor to prescribe me some antibiotics incase I had an infection in my bowel, which they did. To be honest I knew I was getting really poorly but was clutching at straws of anything I could do to stay at home and not need to be admitted into hospital. I even went to the GP and got them to change my morphine tablets for liquid as I find it’s more easily absorbed when my bowels are not doing so well. 

The specialist nurses on F22 had ‘put my name on the board’ which is the board in the Sisters office that shows who is likely to need to be admitted to the ward. Someone from the ward rang me every day over the bank holiday weekend to see how I was and every day I said I was ok at home. But things got worse on Sunday when I started vomiting and although I hadn’t been eating for days I was struggling to even manage water to take my medication. Sunday night was pretty awful so on Monday morning I rang the ward and just broke down and cried. I couldn’t cope with the pain, the exhaustion and the demands of doing my TPN myself when I was feeling so poorly and I pretty much begged them to admit me. They didn’t have a bed on Monday but would have one the next day so I just needed to survive another 24 hours at home. However during Monday night the pain was so awful that I seriously considered going to A&E but the thought of lying for hours and hours on an uncomfortable trolley put me off. And previous experiences of being in A&E have been so awful that I now avoid going in at all costs. Thank God the ward will now admit me directly if they have a bed. 

So Hubby took me in to F22 on Tuesday afternoon and the relief was immediate. Knowing there are doctors and nurses there to look after you when you are feeling so, so poorly is so reassuring and everyone on F22 is like an extended family. At this point the nausea was overwhelming so they started me on IV antisickness meds along with morphine injections and ketamine for the pain. I had a CT scan which showed there was inflammation in my bowel again. The consultant said he wanted to have a look inside which would involve a scope being done but he didn’t want to do it until everything settled down a bit. He said that if he could see the inflammation on the inside then it was likely caused by crohns and that would suggest that the adalimumab injections weren’t working and we would have to consider stopping them and starting a new biologic drug. Or if he couldn’t see the inflammation then it would point to it being caused by adhesions. These are internal scar tissue caused from surgery that can almost strangle the bowel and cause pain, inflammation and other problems. 

It was bank holiday weekend for the Kings Coronation so the consultant told his registrar that if my inflammatory markers went up over the weekend that I needed to be put on IV steroids. I really didn’t want to go back on steroids as I had only very recently managed to wean off them after being on them for over 6 months. During that time my weight had ballooned and I had had the ‘steroid face’ and just felt rubbish about how I looked. I know that’s pretty shallow when you know the steroids are making you better but it’s no fun being ill all the time and feeling like crap and then looking in the mirror and not recognising the person looking back at you. 

Luckily I dodged that bullet though as my inflammatory markers started to go down spontaneously which, consultant told me, told him it was adhesions causing all the problems. If it was a crohns flare up they wouldn’t go down on their own so quickly without the aid of steroids. So he didn’t think there was any point in having a scope done either so I avoided that too! And the one good thing about not being able to eat and drink at all in hospital though was that I was losing some of the steroid weight I had put on. Got to take the wins where you can in my life! 

One thing that I was really upset about though was missing the Coronation Concert at Windsor Castle. Somehow I had managed to get tickets in the ballot and Hubby and I were planning on going. I had even bought some royal themed material to make an outfit for the event. The material is still sat on my bedroom floor as I was too poorly to make anything and then as it turns out was too poorly to go. Hubby did come up to the hospital on Sunday evening to drop off some clean pj’s so he ended up staying and we watched it together in bed. I’d like to think he planned that but I think he just fell lucky with the timing of his hospital visit to be honest cause he was planning on coming earlier in the day but had stuff to get done. 

Over the next couple of days I was feeling better so I stopped taking the ketamine and we planned for me to go home on Friday. However on Friday morning I woke up feeling awful and no amount of “I’m fine to go home” would convince my consultant! He said he thought he knew me pretty well by now and could see I wasn’t fine. He suggested I stay another day or two and when I tried to insist on going home he told me that the hospital was on red alert (meaning it was chokka full of sick people) and that if I went home but then needed to come back in over the weekend they would really, really struggle to find me a bed. So I agreed to stay. 

On Saturday I was feeling a bit better and decided I was going home. I figured that if all I was doing was lying in bed taking my usual medication then I could do that just as well at home as in hospital. So I rang Big Girl and she came to pick me up. Hubby and Big Fella had gone down to London to watch the Forest/Chelsea match so it was the first time that Big Girl had picked me up from the hospital to bring me home. However when she pulled up in her little car she seemed to have half of her wardrobe on the back seat having just stayed over at her boyfriends the night before. So squeezing in my suitcase and 10 bags of feed was a bit of a challenge! (The reason I had so much feed was because I was due to have a delivery to home whilst I was in hospital and when the hospital rang to cancel it all the feed had already been made. These bags cost hundreds of pounds each so rather than them go to waste they rerouted the delivery to hospital which meant that the hospital pharmacy didn’t have to make me up any feeds whilst I was in. So everyone was a winner!)

But teenage girls being what they are after a couple of hours at home with me she was off out with her mates so I was home alone watching the Eurovision Song Contest with just the dog for company. 

Since then I’ve really struggled. We are heading into exam season in this house with both kids sitting exams- fun, fun, fun! Not! Big Fella has to be at school for 8am for breakfast revision sessions and the school bus doesn’t get to school until 8.35am which has meant I had to drive him (school is too far away to walk and he would need to take 2 regular buses to get there which would take over an hour). After dropping him at school yesterday I went and did a bit of food shopping as Hubby seems to only do a little shop for what they’re going to eat that day and the next while I’m in hospital and we were running low on everything, including essentials like loo roll. 

But when I got back from the shops I felt awful and had to go to bed. That’s where I am now, with a hot water bottle and double dosing on my painkillers as everything is beginning to really hurt again. I’m so fed up with this cycle of being ok, starting to feel poorly, battling to stay at home, being admitted, being in hospital and then getting back on my feet only for it all to start again. There doesn’t seem to be an end in sight at the minute. My consultant has emailed my surgeon to ask whether we could do an operation to remove the adhesions but he said that his worry would be that they open me up to do just that but find that they can’t or inside is worse than they thought and I end up with a stoma again. Don’t get me wrong, having a stoma isn’t the end of the world and many people live a perfectly normal fulfilling life with a stoma. But my past experience was of having lots of issues with mine, so much so I had surgery to get rid of it and I just don’t know if I can go back to that. Especially now having a Hickman line and TPN to manage. I think a stoma on top of that might break me. 

But something needs to be done soon cause I really need my gallbladder taking out. It’s been giving me serious gip for a while now but nobody seems to want to be the first one to open me up. I do have an appointment at St Marks at the end of June with one of their surgeons but I’m not sure they will tell me anything different to the private surgeon I saw as he works there too. But I figure I have nothing to lose so am going to go and see if they can suggest anything. Maybe they would be a bit more confident in opening me up, getting my gallbladder and ovaries out and snipping away at the adhesions? 

But for now there’s not a lot I can do apart from listen to my body and rest. Hopefully everything will settle down over the coming weeks but if not then I will be having another NHS mini break.