So I know today isn’t a usual upload day for me but It’s World IBD Day and I thought with all the usual posts and awareness raising I do on here, it’d feel a little wrong to not upload anything on it. It’d be typical that I’m writing this after having a really rough week with managing it – but then that implies that not every week is rough which to be honest would be a lie. Let’s just say it’s been a particularly challenging week. Pre-warning: this post is going to be long and quite honestly, slightly depressing.
I’ve posted my diagnosis story on here and my experience with Prednisolone but my diagnosis was just over a year ago now and a hell of a lot has changed with my health since then. In all honesty, I’m writing this at a particularly difficult time in my journey. When I was diagnosed last April, it was pancolitis from the beginning. Pancolitis is named as the most severe type of Ulcerative Colitis as it covers the entirety of the large intestine including the rectum, too. Although the disease covered everywhere it possibly could, my consultant said the inflammation and ulcers were only mild.
Over the following months after my diagnosis, things were extremely all over the place leading to me having two more scopes, each time the inflammation and ulcers had gotten worse despite being on Prednisolone alongside trialling long-term treatments. By the time October rolled around, I was diagnosed as having moderate/severe pancolitis. Things just seemed to get worse and worse, no matter what I did.
After this we decided to go to a nutritionist to see if there was anything I could be doing food-wise to help myself. After a consultation, we decided that going gluten and dairy-free for a while alongside taking certain supplements to help restore my gut alongside the diet change would be a suitable course of action. Although there was no guarantee to this helping, it had to be worth a try. After a few months of following the plan with a few slip-ups and realising I had far too much medication to remember to take, this came to an end. A lot of the time when I did have slip-ups and have a piece of normal bread, it actually seemed like I felt better compared to when I was eating the gluten-free stuff.
Since this, I haven’t made any other lifestyle changes outside of doctors orders. My treatments have changed and I’ve still not shown much, if any progress. Some things are better, some things are worse and it changes all the time. It’s definitely a “take each day as it comes” kind of disease. I’ve come to a stage now where if I eat more than one solid meal a day, my body will have a bit of a meltdown. This has led to a little bit of an obsession with chicken cup-a-soup (it’s actually not too bad) and me dropping back down to my diagnosis weight. So to be honest, things really aren’t looking all that great for me right now.
One thing I’ve learnt is that no matter how bad a situation is, you surprisingly learn to adjust and do whatever it is you need to do to keep going. Do I miss eating 3 meals a day? Um YES, food was my life. You wouldn’t believe the amount of dreams I’ve had about eating endless plates of arancini balls and woodfired pizzas. I’m honestly tempted to write a whole post on foods I’ve been craving but haven’t been able to eat because there are A LOT of them.
Do I miss being able to do what I want, when I want and not having to worry about fatigue, nausea, pain, urgently needing the loo at any time? Absolutely. This illness quite honestly ruins every day for me in some way. Do I miss the old Alice? More than you could ever begin to imagine. I’m managing okay though, given the situation I’m in at 21 years old. You don’t realise just how strong you are until you have no other choice.
I know what you’re thinking, “So, what now? You can’t just stay like this for the rest of your life?”. No I most definitely cannot. I’m on a treatment right now that is supposed to be the best and strongest for my illness but I can’t say I’ve seen all that much difference other than my hair falling out and my joints aching (which is just great). So I have an appointment with a surgeon in June to discuss my options there and get answers to anyquestions I may have about it.
As terrifying and life-changing as it will be, I think surgery will be the best option for me in the long run. In all honesty, it seems like my consultant and specialist nurse have ran out of things to advise to help me. They are just trying to help me survive and keep moderately stable until I’m ready for the surgery and in their words “hoping I don’t just collapse” (yay). My life has been put on hold and I’ve been going through an incredible amount of pain and turmoil for what seems like forever.
As it stands, I have an MRI next month just to confirm that the inflammation hasn’t spread any further (otherwise this would mean I have Crohns and therefore may possibly make surgery pointless). I have decided to try some alternative therapies before I go through with surgery. Only safe and legal ones like CBD oil and possibly nicotine therapy because I’ve essentially not got a lot to lose at this point.
So, there you have it. A slightly depressing but extremely real post about my current health situation. Whatever happens next, I just really hope there’s something able to bring me relief as quite frankly I have had enough and I would really like to move forward with every aspect of my life. I’m still working my absolute butt off to try and create a future for myself, no matter what it may be. This post is also a reminder that what you see on social media is never the full story. I may seem like I’m living my best life but 90% of the time I’m curled up in bed reposting pictures of the couple of hours I could stand to leave it from the week before.
If you have any advice for me regarding surgery or alternative health therapies please give me a message as I quite frankly need all the help I can get.