For the past few years (and without many people knowing), I have been back and forth from the hospital regarding my health. I was diagnosed with Crohn’s disease in Oct 2021, and I’m currently undergoing treatment. I will most likely end up having surgery and a change in medication soon that will (hopefully) take away most of the pain I’ve been experiencing for the past several months. What’s going on now, isn’t however, what I want to talk about.
For now, I want to back-track a little bit.
In 2016-2017 (I genuinely don’t know which year this all started), I was back and forth to my GP for a constant issue of boils and cysts. I don’t want to be too graphic about where they were (for privacy reasons), but it hurt to sit down. They were sore and incredibly painful. I could barely walk without aid, I struggled to sit down comfortably, and I could hardly lie down without sobbing because of the pain.
I went to the doctors repeatedly for this same issue and they kept putting me on antibiotics. My issue would clear while I was taking the tablets, but would come straight back almost as soon as the course was finished. So, I’d go back to my GP, where they would put me on more antibiotics. This insufferable and painful cycle went on for years.
It was one nurse who noticed I’d been doing this for years with no changes. So she sent me for tests in my local hospital, wanting me to get checked properly. I was sent briskly to the gyne ward.
I got seen and spent many of my appointments waiting an insanely long time for them to figure out what was happening with me, (the amount of times little lesbian me got asked if I was pregnant was almost comical). They drained the issue; it came back. They gave me different, stronger antibiotics that would supposedly target the source of the “infection”, and it would come back in a different spot. Nothing was working.
One day, I spoke to a surgeon (lovely guy – I’ll call him Dr H). He took a look and theorized that based on all the evidence, it had to be an issue with my bowels. He explained that if there are tears in certain areas, its very easy for things to become infected; hence boils in uncomfortable places, refusing to go away.
Dr H said that so far, everyone I’d seen were trying to fix the cysts themselves, rather than where they were coming from. He recomended day surgery to fix any holes and tears causing issues, to drain the current cysts, and to take a biopsy while I was there because why not (only kidding – that biopsy was what accelerated finding out what was wrong with me).
So I went in for surgery. I overpacked on things I might need, had to take an awful bowel emptying medicine, told I wasn’t allowed to eat anything for 24 hours before, and I waited. They must have been particularly busy that day, because I was supposed to be in for my surgery for about 8am only to have to wait for 5pm before I was seen by the anesthesiologist.
By this time in my medical history, I’m roughly 21 and in the middle of global pandemic. My mum (view her blog HERE) is wheelchair bound and on medication that makes her vulnerable to infection, so she couldn’t come in with me to the near hundreds of apointments I’d been to by then. I was scared and in a lot of pain. Also incredibly hungry, but scared mostly.
None of the waiting and extra hunger mattered though because a few hours later, I woke up to find the pain gone and a seton in place. I was told that this was temporary to allow the newly found fistula to drain, but in short terms; the surgery was a success and with the biopsy, they were starting to understand what was wrong. I was excited that it was finally getting figured out. I then was excited to be able to walk out of the hospital with no issues and no pain.
Some time later, Dr H arranged to see me again, and told me that they were going to run more tests. They wanted me to have a couple MRI scans and an endoscopy. This was among all of the other smaller blood tests and things they were doing to monitor me. He said that he believed I had some form of IBD – Irritable Bowel Disease (IBD is similar but different to IBS). He just needed to know if it was Ulcerative Colitis (UC), or Crohn’s Disease.
The main difference between UC and Crohn’s, is based on what part of the bowels are being affected. UC primarily affects the large intestine in a continous stretch of inflamation, whereas Crohn’s affects both the large and small intestine, in large patchy bits of inflamation and could affect the whole digestive system, including the mouth and stomach.
I did my MRI tests with no issues. They were actually quite calming, and if it werent for the regular breathing I had to do for the hour or so I was there, I honestly could have fallen asleep. They let me listen to music.
I also got my endoscopy done. That was a whole bag of nope wrapped in a WTF blanket. I had to drink tons of this awful laxative that almost made me sick. It tasted so awful that everyime I had to drink it, I gagged and nearly threw it all back up again. I was also under the impression that I would be asleep when they did the procedure, but alas, I was not. It hurt. If I never have to do that again (which is unlikely), it’ll be too soon.
The endoscopy happened in October 2021, and it’s also when and where the nurse told me with a lot of confidence that I had Crohn’s Disease. I got a letter in Jan 2022 from Dr H, confirming what she’d told me.
I was soon talking to a few gastroenterologists. I had several consultations with several doctors, outlining what the next steps were. A lifetime of medication, stoma bags and likely dietry changes were talked about a lot, and I regularly left the hospital in tears due to pure fear. I was now diagnosed and ready to start getting help and treatment, but an incurable chronic condition (manageable, but not curable) is really not what you expect to face in your early twenties. I’m not a huge fan of the unknown or change so this really wasn’t helping.
One gastroenterologist in particular (also nice – we’ll call her Nurse T) is who I talk to regularly now. She got me started on a Biological medicine called Amgevita in April 2022 (that I have to inject, keep in the fridge, and have a sharps box for etc), which as of Jan 2023, I’m still taking. In the past few days, it’s been realised that that might need to change, and due to inflamation and a minor obstruction thats causing me a lot of pain, I might need surgery. I’m going for a consultation with Dr H tomorrow to discuss that, so I’ll write another blog about it when I know more.
Symptoms that I commonly deal with nowadays as a part of my Crohn’s is extreme fatigue, issues with appetite, joint pain, and stomach cramping. I’ve also had to cut dairy, whole nuts, and KFC out of my diet due to me not being able to digest them properly. I end up in loads of pain, sometimes for days. Arguably, not being able to eat cheese and KFC is more painful than the endoscopy was.
On the bright side; while the medication I’m currently on might not be working perfectly for me, the amount of pain I’m in right now is a mere fraction of what it was at the start of all of this.
I haven’t told many people. Aside from my mum and brother, grandparents, one or two family members, and a couple of select friends: nobody knows. My mum and brother were the only ones to know for months before I told literally anyone else. My grandparents weren’t overly happy about being kept out of the loop (sorry and I love you both a lot).
You’re pretty much up to speed. Other than certain things that have happened very recently (as in this week recently), you’re all caught up. I’ll be honest, I don’t really know how to finish this blog.
What I do know is that while it is difficult and scary, it’s not going to stop me. Took me a while to figure out that even though it affects me, I don’t need to let it have any power over me. I will slow down and rest when I need to, but I’m going to have an amazing life. In spite of my Crohn’s.
Here’s to the future.
Cerys, out!