My Diagnosis Story
On the 27th of December 2020 I was diagnosed with Crohn’s Disease, a form of Inflammatory Bowel Disease. It is an autoimmune condition with no cure and only treatment to help relieve pain. This is my story from how I began noticing symptoms up until I eventually got diagnosed.
(Trigger warning of needles, blood and hospitals.)
In September 2020 I moved to university to start my training in Musical Theatre. I was completely normal, I had loads of energy and was eating normally. The only problem I noticed was that my recurring throat infection had come back again a week prior to moving, and so I was on my 6th set of antibiotics. We just put that down to my low immunity that made me susceptible to throat, chest and sinus infection. Doing a MT Degree is very demanding physically and mentally, it involves very long days and a lot of work. I was coping very well up until around reading week, which was mid to late October. I started to get very fatigued and very sick, I couldn't sleep and was in constant abdominal pain. I blamed it on stress and just carried on.
Throughout November my symptoms worsened, more cramps and spasms in my stomach and back, I noticed it would get worse when I ate so I started to eat less, I became very weak and passed out multiple times when I stood up, I started to lose a lot of my hair and then began throwing up alot in the night, but again I just put this down to stress. I noticed a small amount of blood in my stools, this was when alarm bells started to ring, then I started going to the toilet over 30 times a day, firstly it was just very loose stools and then it turned into nothing but blood. It scared the living daylights out of me because I had never had any problems like that before.
I googled ‘what to do if there's pools of blood in your stool?’ to which the words ‘Cancer’ and ‘Incurable Autoimmune Disease’ popped up.
So I threw down my phone and convinced myself it was just a bad tummy. I had ongoing Blood and painful symptoms through the end of October, the whole of November and December before I even addressed it. By the end of term I was basically a walking ghost, I had missed a lot of lessons because I was so sick, couldn't stand up for more than 5 minutes without losing my vision and needed to sit down and was running to the toilet every 10 minutes.
But as all my friends and family know, Christmas is my absolute favourite time of year, so I didn't tell anyone what was going on, I said I had a bad tummy and a bit of pain. Tom was staying at my house for the first 2 weeks of December so I wanted to just enjoy myself regardless of the pain. I also haven't seen my Nan or Grandad since July so I had been isolated in order to be with them on Christmas Day and I didn't want anything to stop me from seeing them. But the pain when I ate was so bad that I simply stopped eating
throughout December, I had no more than a mouthful a day, the weight started to drop off me very fast and the blood got even worse. After Tom went home on the 16th of December was when I took a turn for the worst, I was up all night crying in pain, refused to eat altogether and became so weak that I couldn't even grip a glass. My bloating got so intense that I looked 6 months pregnant. In an effort to hide it so I could see my Nan and Grandad at Christmas I tried to act normal, I even did BodyCon workouts with my mum and brother every day until Christmas. Looking back I still have no idea how I managed to do any of this whilst I was so sick. Because I hadn't told my mum many of my symptoms her first thought was Gluten Intolerance, but because I reacted badly to all food we ruled that out. I completed an e-consult at least 10 times and each time it told me
‘Call 999 or seek urgent medical attention’
To which, yet again, I threw my phone down and ignored it. Then after a call with my GP when again I lied about symptoms they thought maybe it was IBS (Irritable Bowel System) so told me to take probiotics and Mebeverine.
Christmas day came around and I was holding on by a thread, I didn’t eat Christmas Dinner and wore my PJs all day, we went to my Nan and Grandad’s house and I was completely exhausted, I ended up sleeping on the sofa for most the day but wanted to try and look normal so I ate a few mouthfuls of super, which ended up causing incredibly intense pain and came straight out within 2 minutes. I was in so much pain that I didn't want to walk home, even though it’s only 15 minutes, my mum demanded to take me to the hospital but I refused, and I drove home with my mum in the passenger seat, I have no idea how I managed to drive in the state I was in, I was in so much pain and started to go into shock whilst I was driving, I was shaking uncontrollably, was crying and had a panic attack, a few hours later I was rushed into Hospital.
I walked through the doors and was asked to sit down in a waiting room, I was only there for about 2 minutes before they called me into a room to be checked up on, they took my blood pressure and temperature and seemed very concerned, at this point I hadn't really eaten in weeks and so was incredibly weak. They then asked me to go sit back down, I stood up to walk to the waiting room and that's the last thing I remember, next thing I know I woke up in a room surrounded by nurses and doctors trying to get tubes into my arms and legs. I fainted as I stood up and was rushed into an emergency room in the Major Treatment unit. They took my blood and took 8 attempts to get a cannula in me but because of the dehydration my veins had almost collapsed and they couldn't seem to get anything in them. I was told I was getting so sick and so weak that I was dying. As a result of the blood loss, my organs were stopping functioning and so they needed to get liquids in me urgently. I had such intense abdominal pain that they had to give me a pain reliever but because they couldn't get access to my veins, I had a tube that went up my nose instead and I was essentially given gas and air. I was fitted with a feeding tube to try and get some nutrients in me but when I threw it all backup with blood, immediately they knew I must have a problem with my stomach and so put me on high importance to be seen.
I was taken for many different tests, and scans that I won't detail because they were pretty nasty procedures. And eventually at the end of Boxing Day I was told it wasn't Bowel Cancer but they didn't know what it was, all they knew was that it was serious and I wouldn't be leaving the hospital for a week at least. I was relieved it wasn't cancer, but terrified for what it could be. That evening I was in my own room as my blood test results had to clear me of infection before I was moved onto a ward, they brought me some food to try and eat, I had a few mouthfuls of crackers and thought it would be fine, within about 3 minutes I was screaming in pain and had to call the nurses for help. They gave me pain meds but nothing was helping. I ended up getting so exhausted from the pain that I passed out. I was woken up every hour to have my blood pressure checked and at about 8am the doctors came in and told me they wanted to do more scans and I was taken through for an endoscopy. I was asked if I wanted sedition and being the stubborn Harman that I am, I said no thank you, as soon as the procedure started I screamed very loudly and begged for sedation to which they gave me the strongest one through my cannula and then put me on oxygen too. After it was done they took me into a room and diagnosed me with Crohn's disease,
I don't remember much but the words that stuck in my head were ‘incurable’ ‘life long’ and ‘autoimmune’.
I still don't understand why they diagnosed me whilst I was high on sedation, because I then called my boyfriend and my mum laughing my head off saying I had Crohn's Disease, they were obviously heartbroken, and all i could do was laugh. About half an hour later when the sedation wore off I released what had happened and broke down crying.
A few minutes later a bunch of nurses came into my room and started moving my bed, I had no clue what was happening and none of them told me. I was taken into a ward of 70 year old plus bowel patients without warning. I was immediately started on an incredibly strong dosage of steroids to bring down my CRP (inflammation) levels of 132. And was given iron and blood infusions to try and combat by blood less and anaemia. The amount of drugs I was given very much knocked me out for the night. Over the next 6 days I did nothing but lie in my bed and get injected with a lot of drugs and have a lot of blood taken each day.
I struggled on the ward because everyone was so much older then me, but eventually I got chatting to a few of them and found some of them had been living with Crohn's for over 60 years, many of them really helped me to accept my diagnosis but a few of them absolutely terrified me for the struggles I had in store for me. Sleep was especially hard as down the hall in the ward next to me was an elderly man who suffered from dementia, he screamed every single night all night, it was horrifying and heart-breaking.
I have always been very outspoken about my disagreement with the NHS cuts, and for the first time I saw the struggle staff were having first hand. Nurses were clearly overworked and underpaid and communication was a real issue for them. There were multiple times in
the night I had to get up and go to find a nurse because I hadn't been given my meds and no one was answering the emergency button. I was on a bowel unit and there was no toilet paper for 2 days, I had to call my mum and get her to bring some in for me. One nurse in particular was super helpful, he was a similar age to me and came and sat with me every day that he was working, he even helped me get past my level on Super Mario Bros on my switch. Each day was a real struggle as steroid side effects were very strong at 300mg a day, but luckily each day my CRP levels reduced and my blood tests were coming back clearer and clearer
On New Years Eve My CRP levels came back as 8, which meant my markers were at a safe level. However as my blood was still very prominent, they knew that my ulcers were not healing. And so I was asked to stay in for another few days to continue steroids but unfortunately the hospital had a massive outbreak of Covid and so they were going round to
all wards and kicking out everyone who was well enough to leave, my entire ward was cleared. And because it was in such a rush, I was never discharger properly, I was simply injected with my immunosuppressant treatment, given a box of meds, had an iron infusion, told I had to shield and was asked to leave, I wasn't told what was going to happen next or talked through my medication. But I was just happy to be home after being in hospital for a week, I was relieved to see my family and finally have a hug.
It’s safe to say my diagnosis story was definitely an eventful and traumatic one but I am a fighter and none of it makes me weaker, it makes me a much stronger person. My journey since being discharged from hospital the first time has been all over the place, I flared up again, had a Crohn's Attack, stopped responding to steroids, was a primary non responder to my first Immunosuppressant treatment Adalimumab, have been back into hospital multiple times, was rushed into a&e in an ambulance and now cannot eat whatsoever and so am on a liquid diet. But I will keep fighting until I manage to get into remission finally.
Luce :) x