Hospital update

I’ve been in hospital for over 3 weeks. I came in with mega vomiting, (yes, that’s the medical term 😉) which then progressed to another obstructive episode. Although I’m not experiencing a full bowel obstruction it’s clear that my bowels are really misbehaving and to be honest it’s been pretty awful. 

The doctors initially hoped that everything would spontaneously resolve, as it often does, with fairly minimal medical intervention but this time things have really dragged on. So they took the decision to do a CT scan which showed I have inflammation in my J-pouch and the bowel above it (the area I have drawn a red ring around on the picture I nicked from the tinterweb)

To understand how bad the inflammation was last week I had a flexible sigmoidoscopy, aka camera up the bum 📸This time the procedure was very painful, despite having 3 times the ‘normal’ dose of sedative. They did see some ulceration of the lining of my bowel which correlates with the findings of the CT scan. 

The new gastro Consultant on the ward, Dr D has been brilliant. He openly admits that I’m a difficult case and one that he finds intriguing but he also said that he doesn’t to just patch me up, only to have me bounce back in again in a few days or weeks. He’s torn though as my symptoms don’t fit with the classic crohns presentation, though the inflammation suggests that’s what I do have. Although I was diagnosed with colitis many, many moons ago, colitis only affects the colon (large bowel). Because I had mine removed the fact that I’m still getting inflammation and ulcers in my bowel all points to me having crohns (which can affect any part of your gastrointestinal system from your mouth to your bum). But Dr D also thinks that these obstructive episodes could be the result of my pouch not functioning properly. No shit Sherlock!

My pouch has never worked properly. I’ve always had issues with it right back from its creation and over the years a number of things have been tried to make it work better ranging from medication to biofeedback and even trial of a sacral nerve simulator. But despite all these things it still misbehaves. Dr D wants me to reduce the amount of Buscopan I’m taking. This medication helps with the bowel spasms I experience and I find it really helpful, but the way it stops the spasms is by stopping the bowel from constricting. In a nutshell, in order to reduce the pain I could inadvertently be reducing the motility of the bowel and this could be causing or exacerbating the obstructions. But I’ve reduced my medications so much already I’m worried there will be nothing left to take soon!

One of the suggestions St Marks had prior to me undergoing surgery was to start on a biological medication. These types of meds work by suppressing the immune system and because IBD is an autoimmune condition it hopefully this stops your body from attacking itself and causing inflammation. More information can be found on the Crohns and Colitis website . The doctors are not that hopeful that it will work but we agreed to give it a go so that we can say we have tried everything.

Before the doctors could prescribe adalimumab (the biologic medication I will be taking) there were quite a few tests I had to have done. I had to have a chest X-ray to make sure I don’t have TB and also had to have a massive number of blood tests to check for infections and viruses like HIV and hepatitis. Having your immune system suppressed makes it more difficult to fight off any infections or illnesses and they have to make sure there’s nothing there to begin with. I also had to have an ECG to check that my heart is ok as the meds can make pre-existing heart conditions worse. 

After a few days all the tests came back clear so I was able to have my first dose yesterday. When I had infliximab last year it was given as an infusion into my vein. But adalimumab is given as sub-cut injections, meaning it’s injected just under the skin. When the nurse brought the pre-filled syringes yesterday she was a little bit sneaky. She used the white tray to cover up part of the instructions so I couldn’t see the bit that said that it would sting as it goes in. And boy did it sting!!! 

The starting dose is 160mg (40mg per syringe) so that meant 4 injections. I had to have them in different places so had one in the top of each thigh and one either side of my stomach. In two weeks time I will have my next lot but the dose then is 80mg so only two injections! Then it will be a maintenance dose of 40mg every fortnight. The syringes will get delivered as it’s not a medication that can be prescribed by the GP and not something stocked in normal chemists. They have to be kept refrigerated so will go into my medical fridge along with my bags of TPN feeds. 

Whilst I’ve been in hospital they’ve had to increase the amount of nutrition in my feeds as I’m unable to eat or drink anything without it causing me to be in absolute agony. At home I might get away with the odd biscuit or packet of quavers but at the moment I can’t even take my medication orally as the tablets and few sips of water to take them feel like I’ve swallowed razor blades. I’m having most of my medication IV which usually causes a problem as I’m so difficult to cannulate. But they must have found a hidden vein that’s never been used before as this cannula I’ve got in right now has lasted 19 days and counting!

And yes, I’m well aware that guidelines say that a cannula should only be in place for 3 days but in patients like me that are so hard to cannulate they will leave them in situ for longer so long as they’re not sore and don’t show any signs of having become infected. 

Earlier in the week it was my wedding anniversary and I had resigned myself to ‘celebrating’ with Hubby over FaceTime. However I got a massive surprise when at 8pm the door to my room opened and in walked Hubby. He had been to his Uncles funeral that afternoon so was in a suit and tie and I have to say he does look good in a suit. Even after 13 years of marriage and 23 years together I still fancy him when he’s suited and booted. Anyway, he kicked his shoes off, took his jacket and tie off and climbed into bed with me. We snuggled up together and watched Taskmaster and had a lovely hour together. I think it was made even better because I hadn’t expected to see him. 

Hubby and the kids come to visit me every Sunday. I find it easier to deal with being in hospital by not having lots of visitors. I don’t know why, but it’s just my coping mechanism. And it means there’s less pressure on Hubby in the week if he hasn’t got to visit me. He’s busy enough trying to keep everything running smoothly without adding in hospital visits!! So they come on Sundays, bring me clean pjs and a new book to read and take home my dirty laundry. We go to the hospital restaurant, although calling it a restaurant is definitely over a misrepresentation. The food is expensive, often cold and has the nutritional value of a piece of cardboard. But it’s one less meal that Hubby had to cook and it gives us the time and space to spend together as a family. We will often play Uno or cards depending on the mood the kids are in. They might stay for an hour or two but I don’t want them here for ages; it wears me out and I also know that after that length of time the kids are fed up and just want to get home to the Xbox/TV/friends etc. I do message and FaceTime them in the week but am guided by them as to how much contact they want. I try to text at least each night to tell them I love them and then if they want to talk or message more then they can. But they also understand that there are times I may be asleep, with the doctors or nurses or simply too poorly to answer my phone. I know some people reading this would find it really difficult not to see their kids for a week at a time but it’s normal to us. 

I have no idea how much longer I’m going to be in hospital for but we have tickets to the Platinum Party at the Palace on Saturday 4 June and I’m determined to get there. If I’m still in then I will be asking the doctors for home leave cause I really don’t want to miss a once in a lifetime event. There are only 10,000 tickets and I had to apply for them months ago. There was a draw to win them so to get a pair of tickets is nigh on a miracle and I will be damned if my illness makes me miss it. But I’m also realistic and know I need to be having a lot more good days and able to take oral medication before the doctors will sign off on me going out for the day.