I’ve been MIA since New Year, and I’m sorry about that. My New Year’s Resolution was to stay on top of my blog and focus on me more rather than other people, and so far I feel like I’m not doing either very well.
I feel like I’ve not had much to post about in all honesty and I don’t really know what to type, so I haven’t. But I’ve noticed that not writing stuff and not reflecting on things isn’t helping my mental state and I’m now starting to feel stuck in a rut.
So here’s a mini breakdown of my 2018 so far…
18TH JANUARY – I had a review with my surgeon and the first thing she said to me was that I looked like a new woman. I last saw her in July and she said that I looked completely different, more relaxed within myself and just generally happier. Which is kind of ironic because I hate having a bag, but at the same time, it means that my “fake it till you make it” approach must be working because people are starting to think I’m happier and more content with bag life.
We decided that I’m still not ready for surgery, and instead of having a review in 6 months time, I won’t see her again for another year. However 2019 / 2020 are my “deadlines” so to speak where I need to make a decision about removing my lovely, ulcerated rectal stump. Whether that entails becoming a lady with a pouch, or a barbie butt.
We touched on the fact I am still in a flare and my rectal stump is causing my issues, and she said I should see one of the IBD nurses to discuss my options.
So after that appointment I saw an IBD nurse, FOR THE FIRST TIME! Since being diagnosed in November 2016, it took until January 2018 for me to see a nurse, despite being in a constant flare. I mentioned to the nurse the flare was getting worse and she told me my options are enemas, suppositories or immunosuppressants. I’ve tried enemas, and I can’t do it. It seems like medical professionals seem to assume that because I have IBD that I should be okay with having to shove something up my bum, but I’m not. I can’t do it. But she said immunosuppressants will affect my whole body so it’s better to treat the flare directly. But the thought of having to shove something up my bum is just no. She said she’d write to my consultant about potentially starting me on immunosuppressants to help control the flare, but due to the sulphasalazine I’m taking for the arthritis, to see how that works in the mean time.
23RD JANUARY – My birthday! I’d been away for the weekend to Leeds with two of my best friends. There was meant to be another girl with us, but she couldn’t make it and in the lead up to the weekend I was stressing about finding money to pay for her share of the room, as it was too late to amend the booking because there were no single rooms available, whether she was actually going to come or not, and my daily bag leaks. I know that stress makes my flare worse, and unfortunately I wanted to spend all weekend stuck to the toilet. We went out both Friday and Saturday nights though, but we were back in our rooms by 1am because I couldn’t leave the toilet, and my joints were giving up on me.
On Saturday, after a day of shopping I went to have a nap so I’d be okay for the evening and then the girls called me into the room next door (we had connecting rooms) and they surprised me with a cake, balloons, confetti and presents. I wanted to cry I was that happy. They know me so well and everything was rose gold and matching (slight OCD about stuff all looking neat and matching) and they bought me a sash to wear which said “birthday babe” which was handy later on when I got free entry into the bars because it was my birthday!
On a side note though Naomi and Hannah were amazing all weekend. They didn’t once make me feel guilty about not being able to stay out later and were making sure I was eating regularly and staying hydrated throughout the weekend. It was a shame that my other friend couldn’t make it, but I still had a blast.
6TH FEBRUARY – I got a delightful letter through the post from the IBD nurse to my surgeon, consultant, therapist, nurses, GP and dietician explaining that she has spoken to my consultant and he won’t start me on medication to control the proctitis.
He’s said all along it’s not worth treating and that I need it removed, but I would have thought that having 3 different members of my medical team saying that the proctitis needs to be bought under control would help my case. But apparently not.
One positive though was that I saw my nurses again about the ulcer under my stoma and the daily bag leaks. I was given a paste and some convex rings to try to see if that helped things at all so fingers crossed…
16Th FEBRUARY – I’ve redecorated my room! It took a week, lots of naps and lots of tea and coffee (decaf obviously) bone are the white and turquoise walls, and in are the pale greys. I also adulted and bought a new carpet which is so fluffy and lush – I love it! I’m currently living out of boxes which is kind of stressful because my new wardrobe isn’t expected to arrive till middle of March but when it does arrive I can unpack and my room will be complete. I can’t wait!
25TH FEBRUARY – So that leads us to now. I’m currently laying in bed, ever so slightly hungover from having an absolute blast last night. It was my first night out since Leeds, but this time I didn’t let the toilet visits or arthritis rule my evening.
I’ve been feeling kind of down recently and I don’t know why. I’ve been started on sertraline for anxiety and depression but in all honesty I don’t think it’s helping but I have an appointment this week to review that.
In reality, I don’t do much, which is why I’ve not posted much. I’m really suffering from fatigue at the moment and all I do is go to work, then come home and sleep. I’ve barely been to the gym because sometimes I can’t get out of bed. After most shifts, I’m hobbling. Mum helps me up the stairs most nights as I don’t feel stable on my feet. She helps me get undressed and into bed, and helps me with my bag changes too because I don’t have the energy to stand up in the bathroom and do it so I lay in bed.
Socially, I feel like I’ve lost one of my closest friends recently. I’ve not seen them since October, and we barely talk and I miss her a lot. It’s annoying being ignored, because it’s making me second guess stuff and just bleurgh. I’ll keep her christmas present though, just in case I do see her.
When I do have the energy I do my best to go out though, although it isn’t very often. I want to be adventurous, or even just feel like a “normal” 24 year old who doesn’t have to plan her life around naps but right now I think I need to accept that I can’t and that’s not me at all. The friends that I do see, never moan if I have to cancel, or rearrange, or I sit there yawning because I’m exhausted, and I’m so grateful to have them in my life.
Then there’s food. I love food, but apparently it doesn’t love me. I’ve seen a dietician recently and her exact words were “wow I’m stumped, I don’t know what to suggest to beat the fatigue because you’re doing everything you can” B R I L L I A N T. Always good when you confuse the medical professionals.
The adhesions along my small bowel are starting to cause havoc again and I’ve found that red meant and vegetables are just big no’s at the moment. Annoying because I’m constantly craving salad, a nice steak and stir fry. But they leave me bloated and in pain so it is back to a diet of pure carbs. Thankfully, I’m still okay with avocados so I’m going to eat them until my body rejects them as well.
So what was originally was going to be a short post has actually turned out to be longer than anticipated, but I’ll do my best to keep you all updated with anything else that’s going on.
Hope all my fellow IBDers are keeping as well as possible – they call us warriors for a reason, so just keep fighting.