Well, what a month! For anyone not following me over on social media, I am now out of hospital, yay!
I was released on Monday 16th March after three weeks in hospital. Although my symptoms haven’t all been rectified, they are a lot better than they were.
So, there was a part of the testing that was going on that I didn’t want to discuss at the time as it was pretty scary. I was told that on the CT, they had seen some enlarged lymph nodes on my stomach. Obviously, the worry was cancer but they did some blood tests, including for lymphoma and they all came back fine which was a relief. There was some talk of getting them removed and biopsied but when the surgeons had a look, they were happy that they weren’t overly large and that where they were was pretty close to the active disease which is currently still in my remaining large bowel, so this was probably reactionary to that.
The MRI showed two parts of my small intestine which are quite narrowed, and between those and the adhesions I have from previous surgeries, the doctors think I am experiencing intermittent blockages which is what is causing my symptoms. The narrowing right behind my stoma has definitely been relieved from the ‘manipulating’ the doctor did during my stoma camera test. I am now booked in for another stoma camera test in a couple of weeks, as because there was such a backlog of output behind that first narrowing, the doctor couldn’t see a lot in the first one. They are going to use a special scope that will hopefully go further along my small intestine so they can check more of it out and they are also going to have a go at dilating the narrowings if they can. The surgeon told me he doesn’t think surgery is the best option for them at the moment – they aren’t overly closed up and further surgery will only add to the adhesions around my bowel, but he said he is unfortunately pretty sure I will need further surgery on them eventually. Having Crohn’s Disease this is sadly a reality we face so doesn’t overly shock me, although we will hopefully be able to put it off as long as possible.
I am also going to see a dietitian next week. Due to these intermittent blockages I get very bloated, food backs up and this can cause a lot of pain. To help with this I have been given information on a liquid diet and I am meeting with them to see about getting some meal replacement shakes. This will be good for when I am struggling to eat as I will be able to have one of these instead. It will still provide me with the calories and nutrients I need, without having to take on more food which will exacerbate the stomach and bowel issues. Before being admitted I was often resorting to soup and Lucozade but this wasn’t providing me with all I needed and with malabsorption also being an issue, meant I have been low in potassium, magnesium and phosphates. Hopefully, these shakes will be a god alternative and keep me healthy even when I am struggling. I am trying to eat little and often and also sticking to a mostly low residue diet to try and prevent any issues as much as I can.
I can’t even remember how many cannulas and cannula attempts I had now, it was over twenty in the first week alone! I was offered a mid-line but by the time the team got to me, I was getting off IV meds and I knew I wasn’t having surgery so I didn’t need it anymore. I also had around 8 sub-cut cannulas in during my stay which weren’t as bad, although the morphine stings like hell going into them! The bruises are still visible but are much better than they were now!
I posted this up on my Instagram after I left hospital. The first picture was taken two days before I was admitted and the second was the night I came home. This just shows the physical effect the high dose steroids can have. I find this one of the hardest things to deal with. Although it is difficult having an invisible illness, which people struggle to understand, having the visible symptoms just means that I see a reminder every day of my illness when I look in a mirror. I am now reducing my steroid dose back to the dose I was on prior to being admitted so hopefully, my face will start to deflate a bit soon as well!
Lastly, I just want to thank all those who have messaged me during my time in hospital. It really has meant such a lot and helped me immensely. Not only is it a physical struggle, bring stuck in hospital for extended periods. it can really affect your mental health but the amazing support from my family, friends and the people I have met online was so phenomenal and gave me so much strength.
I also wanted to mention that I am currently running a giveaway on my Instagram page and would love you to pop over and enter! The prize is one of these amazing ‘Spoonie Mummy Strong’ tees, made by A & J Designs which I absolutely love!
I hope you are all having a good week so far, let me know in the comments below if you enter the giveaway and good luck to you all,