Hi, for those that don't know me, I'm Lucy. I'm 31 years young and in January 2020 I was diagnosed with Crohn's Disease. If you want to put a face to the name, here's me (second from right) with my amazing siblings about a month before my illness began...
I wanted to create this blog for two reasons. Firstly, to educate people on Crohn's Disease and secondly, to vent my frustrations about living with the disease on a daily basis. You don't have to read it but please share it as it may help someone you know!
So, what exactly is Crohn's Disease?
Crohn’s Disease is a condition that causes inflammation of the digestive system. Crohn’s Disease is one of the two main forms of Inflammatory Bowel Disease (IBD). The other main form of IBD is a condition known as Ulcerative Colitis. Crohn’s is sometimes described as a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission) as well as times when symptoms are more active (relapses or flare-ups).
At present there is no cure for Crohn’s, but drugs, and sometimes surgery, can give long periods of relief from symptoms.
And how did I end up with it?
Although there has been much research, we still do not know exactly what causes Crohn’s Disease. Researchers now believe that Crohn's is caused by a combination of factors: viruses, bacteria, diet, smoking, certain medications, and stress have all been suggested as environmental triggers, but there is no definite evidence that any one of these is the cause of Crohn’s.
For me, I was happily plodding along in life. I had just ran the Paris marathon, bought my first house and was about to turn 30 when the symptoms started. And here is where I made my first error...I did not tell the doctor about my symptoms straight away.
What were the symptoms?
It started with a bad back, and I mean a VERY bad back. I was in so much pain so I went to the physio and they thought I had slipped a disc so gave me traction and exercises but it did not touch the sides.
Then came the bowel issues - yes sorry to be so graphic - but anything I ate came out immediately one way or the other. I was being sick, suffering from diarrhoea or sometimes both - let me tell you it isn't pleasant having to sit on the toilet whilst you're throwing up in the bath! Not the most dignified! At first I naively put it down to food poisoning...because, you know, that lasts for weeks (*hint* it doesn't!).
And with the bowel issues came the weight loss and I mean rapid weight loss! In addition to this I was having fevers, fatigue and couldn't walk! That's when my family stepped in and ensured I booked myself a doctors appointment.
How was I diagnosed?
Laying on the doctors bed with my pants round my ankles whilst she examined my rear was not how I expected to start my 30th year...but that's how I started on my way to being diagnosed.
The doctor examined me and referred me immediately to a Gastroenterologist (I am very lucky to have BUPA through work) and I was seen within weeks. I had blood tests and a Flexible Sigmoidoscopy (like a Colonoscopy but doesn't go as far) which showed a large abscess in my bowel and an anal fistula (DELIGHTFUL). Turns out it was this that was causing my back pain...who knew! I was referred to a Surgeon.
In the meantime it was my beautiful sister's hen do in Dublin and I HOBBLED round. I couldn't enjoy some of the activities due to the pain I was in and to this day I do not know (and I am pretty sure the girls agree with me here) how they got me back home. We commandeered a wheelchair at Dublin airport!
Once home, I saw the Surgeon the next day who took one look at me and rang the hospital to get me a bed that night. I was admitted and underwent surgery 2 days later where they removed the abscess and, unfortunately for me, a big chunk of my left arse cheek! Oh the pain...! They also inserted a seton into the fistula to keep it open and prevent the abscess reforming.
You'd think that would be the end of it but OH NO more was to come, I then underwent a full Colonoscopy in January 2020 which showed the extent of the inflammation in my bowel and I was diagnosed then with severe Crohn's Disease in the terminal ileal and small bowel with perianal disease.
So then what?
Well then they had to decide what treatment to give me and we settled on Biologics. Biologics targets a protein in the body called tumour necrosis factor-alpha (TNF-alpha). TNF-alpha is naturally produced by your body. It plays an important role in helping your immune system fight infections. But too much TNF-alpha can damage the cells lining the gut. This is thought to partly cause the gut inflammation of people with Crohn’s or Colitis. Biologics bind to TNF-alpha, blocking its harmful effects and reducing inflammation. This helps to relieve symptoms.
I tried one, Adalimumab, which I had to inject myself every two weeks but tests showed that wasn't working and my symptoms were still severe. I had further bloods which showed my HB levels were dangerously low and I needed an iron infusion and it was then decided that I should go onto dual therapy - one biologic (Infliximab) and one immunosuppressant (Azathioprine). I take Azathiorpine daily and have infusions of infliximab every 8 weeks. My symptoms have improved greatly, I have put on weight and I feel so much better in myself. However, I am not yet 100%. I still run to the bathroom 4/5 times a day on a bad day, 3/4 on a good day. My medication is under review and (hopefully) with some adjustments I can achieve remission.
And finally...
Receiving the diagnosis of Crohn's is the hardest thing I have ever had to deal with. I just wish I had gone to the doctors that bit sooner and perhaps the abscess wouldn't have taken hold as much as it did. They say you should always trust your gut...and believe me you really should!! I am on the road to remission and I am so thankful for my life and those people in it. What I didn't mention above is that my family took so much time out of their own lives to care for me, take me to appointments and support me and without them I really would have struggled. I am so grateful to them, more than they know.
If you have reached this far and are still reading, wow! Thank you. My next blog won't be as boring...I promise!!
I hope I have given you an insight into what Crohn's is and hopefully this will go some way to raising awareness. Until next time....L xx
You really are an inspiration Lucy ✨
Great read!!