02/12/2025
TRIGGER WARNING: There are pics on here which might not be for the squeamish!!
It's Crohns & Colitis Awareness week, so thought it would be a perfect time to write this, even though some of you already know my story. This may also explain why I've been quieter than normal on here this year!!
I was diagnosed with Crohns when I was nearly 17yrs old but had already spent a lot of my childhood in pain but was told it was IBS (or my hormones!!)
After my initial diagnosis I was really ill and spent nearly four years on different medications, immune suppressant drugs, steroids etc but I was in so much pain, constantly on the toilet, panic attacks, anxiety, vomiting so hard due to bowel obstructions that I burst blood vessels in my eyes, not going to the toilet fur 10+ days at a time, being able to see the blockages as they popped up in my intestines after eating because by that point I weighed around 6.5 stone. This was my normality and I just lived that way. I really didn't know what to do. So, I took back control at start 1998 and told my GP I wanted off the steroids and would be telling my Crohns consultant the same. They both agreed and started tapering me off them, whilst waiting for an appointment with the surgeon. I was seen by Mr Speakman who operated on me six weeks later, 6th May 1998. He removed approx 5 feet of the small & large intestine. As soon as I was out of surgery, I felt so much better and my recovery went well. I stated on Pentasa and began Vitamin B12 injections every two months. Life changed so much because I wasn't in any further pain and my health went back to normal. I celebrated my 21st birthday two months post op and I never looked back!!
Thankfully, my Crohns has pretty much remained in remission and was under control partly due to remaining on Pentasa from that point in 1998 onwards.
Then, at the start of April 2024 completely out of the blue I was told that the severe pain which I'd experienced for over 18 months wasn't due to an ovarian cyst but was actually a fibrous stricture in my terminal illeum. It was caused due to scar tissue from my 1998 bowel resection and only option was surgery.
This was the beginning of a complete nightmare which showed me how much the NHS has changed. I was ignored by the surgical team after my initial appointment. I'd a serious temporary bowel obstruction end May 2024 but nothing was really taken seriously by the medical teams. Gastro never communicated with surgical and vice versa. I was sent for two urgent MRIs but was still chasing my results after months.....then November 2024 I was admitted to hospital after a horrendous 21hr wait in A&E and again ten days later after a future 18hr wait in A&E. Both times, I was just dismissed and TOLD what medication I must take. No one listened when I referred to the letter advising only surgery would fix the problem. I lost just under a stone in two weeks because I was scared to eat and every time food was put in front of me I'd literally shake and go into panic mode. By the end of November 2024, my mental health had also deteriorated to a point where I really couldn't see any way forward out of this situation as no one in the medical profession was listening to me. Finally, my gastro team read my email and we're "shocked" I'd not been operated on because they'd left me in the hands of the surgeon. So, gastro tried a colonoscopy with balloon dilation on 13th December 2024, which didn't work for long as we expected but this was a tick box exercise....
Start 2025 I emailed my gastro team and demanded an appointment with my consultant which wasn't until mid March. I wrote a timeline of everything that had happened and pointed out the lack of communication and appalling patient treatment from both gastro and surgical. I told my consultant I want surgery, as he'd advised on the letter which was nearly a *year* ago. He apologised and sent an urgent referral back to surgical and within 24hrs I'd an appointment for two weeks later.
When I finally met Mr Shetty, I gave him the timeline too then explained I'd no faith in him or his team due to my experiences in past twelve months including hearing surgical arguing with an A&E consultant as they were refusing to examine me for a bowel obstruction as they said I'd "a bad case of gastroenteritis" which was absolutely unacceptable. No wonder I'd been in such a bad place mentally when these who were meant to look after me were acting in such an unprofessional way. He apologised several times and told me I'd be operated on within the next 2-3 months.
I felt happier but also didn't quite feel that it would happen after all I'd experienced since April 2024.
However, just under 3 months later on 3rd July 2025 finally I'd my fibrous stricture removed, 17cm on total.
I'm not going to lie, recovery was hard and slow (prob as I was 27 years older this time!!) but finally I can start rebuilding my life again. My wounds healed really well and after a month of fragmin injections along with two months antibioticsu recovery was going in the right direction.
Stopping Pentasa after 29yrs was a strange feeling but my consultant advised it was no longer needed. So now, I'm only on a vitamin B12 injections due to the part of my bowel being removed back in 1998.
I'm feeling so much better but have good days and bad.
Who knows if I'll end up having more surgery in the future but right now, I'm well and my disease is in remission.
I get tired, fatigue can be crazy at times!! This is normal.
My stomach might be dodgy or behave....that's the joys of Crohns.
I'll always be checking out where the toilets are when we go out.
I'll always be wary of going places where I don't know in case there's no toilets or they are far away.
I'll always sit on the end of a row in cinema,theatre etc "just in case I need to get to the toilet quickly and don't want to disturb anyone"
I'm working on being able to not automatically looking at where the nearest hospitals are when we go away or travel on motorways.
I'm working on not thinking that every time there's a twinge etc that I'm going into a bowel obstruction scenario again.
I'm working on trusting the NHS and my gastro team again, that's hard!!
I'm thankful that within all of this I started taking HRT which has helped balance my mental health. Along with my wonderful counsellor Linda who helped me through the darkest times in December 2024. I also found the fabulous Jo Robinson-Howarth and her amazing 'Happiness Club' which pulled me through and helped get my mental health back to where it needed and continues to be but I'll explain more about this in due course!!
I feel anxious when having to go into public toilets when my backside is about to explode!!
My farts could sometimes clear the O2 arena!! That's normal!!
This is my life.
This is living with Crohns.
You may see some physical symptoms but the majority of it is invisible but we are living it constantly.
I salute every single one of my who are fighting this horrible and debilitating illness every single day. However I also want to thank those who unwaveringly support us all daily when we are at our lowest.
Sat Deogun has been my rock especially in the past 18 months and looked after me especially at my lowest points when things really felt like they'd never get better this time last year. He really did have the patience of a saint when I came home after the bowel resection surgery. He looked after me for the first 7/8 weeks before I started to get my independence back!!
Let's hope there's no more bowel resections in the future!! 💜
Crohn's & Colitis UK
