Life Update – My Crohn’s Diagnosis Story

I wasn’t quite sure what to title this blog post so I’m hoping I’ll write it and it will come to me by the end. Full upfront disclosure this is going to be a long one, I’ve been absent from blogging for a good few months and a lot has happened.

Firstly my endometriosis, so many questions right now which I will touch on later but overall my great advice (bragging rights as I need some self love right now) in previous posts all went out the window in about September. I am sure that there is a huge amount of people who have the willpower and strength to take control of their health through holistic and natural options but being completely real with you about 3 months ago shit hit the fan and it all went a bit tits up.

I went away to Ibiza at the end of August and it became evident over the holiday that my pain was every single day without fail. I was taking painkillers a lot (codeine & ibuprofen) plus anti nausea medication. My stomach was playing up, a constant uneasiness considering the amount of anti nausea medication I was taking and I also got this weird leg issue with red raised lumps that felt like bruises, it got to the point where it hurt to walk. I went to my GP when I got back to the UK and they put it down to my mini pill and said to stop taking it, I did and the symptoms on my legs went away.

The next 2 months in all honesty are a bit of a blur… its not my fault I am unwell but I do feel for the people around me who’ve dealt with me the last few months, gone was the happy Abi who has the occasional mood swing and I was full on miserable, more miserable than I have been ever before. The pain in my pelvis and stomach could only be controlled by medication, I was missing so much work and I had to agree against all of my strength to work from home a few days a week to take the pressure off my increasingly declining health.

TMI ALERT About the start of October I had my period and it was horrific, I lay on my bathroom floor crying for 2 hours with no pain relief doing anything, I could have eaten skittles and it would have probably done more as at least they taste nice. Food was an absolute no unless it was pizza, my sleep was completely screwed as when I did get the pain under control it would just wake me up 3 hours later, a constant reminder that my abdomen was on fire (Not really on fire but I had some dark thoughts about how I could get a hysterectomy). The real shocker came when I went to the bathroom for a number 2 to discover it was burgundy red…. Queue a heart attack, google search and a panic attack. Don’t google blood in stool or burgundy stool, google will diagnose you as dying, just don’t do it. Go to a&e or go to your Dr. I opted to call NHS direct who advised to get myself down to a&e which I did.

The Dr in a&e who I’m sure had the best intentions, checked me over advised I was constipated, and told me I needed to relax because I seemed very anxious. Of course I am  anxious there is blood in my poop and I’m in agony for 20 hours of the day.

Anyway, my period went, pain returned back from demonic to just evil and I went about my ever decreasing life. November arrives and its period time again, this time shit really hit the fan, my weight dropped by 7lbs in 1 week, I got diarrhoea so bad it gave me a haemorrhoid, I was so tired I was falling asleep working from home and I wasn’t eating more than about a sandwich a day. I decided after a GP phone consultation on the Friday where I was prescribed extended release morphine (Horrible horrible tablet will discuss in another post) that I would go in on the Monday and see a Dr in my GP.

The Dr I saw is my new best friend, literally… I went in to see her and I saw the colour drain from her face. She immediately booked me for blood tests the next day, gave me a prescription for some surprisingly tasty nutrition drinks and told me if I got any worse go to the hospital. She insisted on signing me off sick from work for 2 weeks to rest which I felt awful about as I work in e-commerce and this went over Black Friday but adamantly said I had to rest as I was not well and for the first time ever in the last 6 months said she didn’t think this was endometriosis.

I stayed off work for 2 weeks, taking my painkillers, laying in bed or on my sofa, trying to eat and hoping I just had a virus that would clear up and I could go back to normal waiting for my laparoscopy (booked for December) to sort out the daily pain. I had my blood tests and they came back with high levels of CRP and ESR which are markers for inflammation. It also came back that my globulin was really low meaning I wasn’t absorbing nutrients and was essentially malnourished. I was re-booked in for another test on the 5th December to retest and see if they had gone back to normal.

5th December 2018 – I wake up and feel like absolute death, I don’t think I have ever felt so unwell in my whole life. I could barely move, was dizzy, exhausted, in agony and felt super nauseous. I did my usual had my nutrition drink and my pain relief then proceeded to throw it all back up followed by diarrhoea fun times!! I phone my GP to say I can’t make it to the surgery for the test and they suggest I go to a&e as I sounded in a bad way and needed urgent help. I go to a&e wait 2 hours in the waiting room, go into the little triage bit and they did all of my obs (HR, BP, TEMP) at this point the women called a nurse who brought me a wheelchair where I was immediately taken to a room with a comfortable chair surrounded by equally as unwell looking people as me and told to hold tight someone would be with me quickly. Normal Abi would be panicking but this Abi did not care I just wanted to sleep and be heavily medicated so I did not feel how I felt right then.

The next couple of hours I had blood tests, an X-ray, samples of bodily fluids and a CT scan, I mentioned endometriosis which was shut down on every occasion. Appendicitis was mentioned and I had swollen lymph nodes (pretty scary). The surgeons did all of their checks on me, blood tests for inflammation came back just as high as in the GP (20 times higher than normal) and it was determined that I was not in immediate need of surgery which was a relief in a way. What they did say however that on my CT scan I had high levels of inflammation in my digestive tract specifically my small bowel and that it was pretty certain I had an inflammatory bowel disease and was in a severe flare up. I was being admitted and they were just waiting on a bed for me.

I spent a week in the hospital on heavy IV steroids and antibiotics as this is what I am told is normal treatment for IBD. My inflammation levels returned to normal but my bloods are still low on globulin so I’m still not absorbing nutrients properly. They did further tests and I have now officially been diagnosed with Crohn’s disease… An autoimmune disease where my body attacks my digestive tract and chronic so incurable.

I finally got discharged with an 8 week course of the steroid prednisone, vitamin d3 and calcium tablets and a potassium supplement and feeling significantly better than I have done in about 6 months. Still far for normal but feeling so much better. I have to go back in 4-6 weeks for a colonoscopy so they can see the extent of my illness, am armed with a new IBD friendly diet (another post) and will be going to the IBD clinic for a check up but that is pretty much it at the moment until they see how I do on the medications.

I’m still in a bit of shock, I think being so unwell is really eye opening and it wasn’t till I started feeling better that it all hit me just how unwell I’ve been these last 3-6 months. I’m feeling positive as I’m feeling better and well looked after by the NHS but I’m also adjusting mentally to having a chronic illness, I won’t go into more detail on that on this post but my emotions are a bit up and down right now.

If you take anything from this post take that if you don’t feel well keep pushing, my situation could have been so much worse and I know that its not great what’s come out of it but how much longer could I have kept pushing through? What could have happened?

Thanks for reading! A x

One thought on “Life Update – My Crohn’s Diagnosis Story

  1. Cory Whitfield says:

    Hate to hear about your diagnosis, but welcome to the Chron’s and UC crew. I’ve had it for 20 years so I know how rough it can be. If you ever have any questions don’t hesitate to give me a shout.


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