My IBD Story

This is my story with Crohn’s Disease.

I had gone my entire life without any serious medical problems or aliments. I was a happy child, a temperamental and shy teenager and a bubbly young adult. I went through GCSEs, A Levels and then off to university. I spent 3 years in Norwich studying American Studies and a year in Vancouver, Canada studying American History and Politics whilst researching my dissertation. I came back home – Lichfield, Staffordshire – in July of 2010. I started a job in a local bakery and café in October of the same year. Everything was hunky dorky. Until August 2011.

I had spent the first weekend of August back down in Norwich getting my 6th tattoo done and spending time with my university friends. I came back, returned to work and back to my usual social life. I went out about a week later to a restaurant for dinner and everything was okay until I was due to work the next day. I had the most awful gut ache. I couldn’t leave the bathroom for fear of vomiting everywhere. Food poisoning my GP said. He prescribed fluids and bed rest. I took two days off work and then returned, feeling marginally better. I was nervous to get back to work; I despise not being busy. I got in on the Wednesday morning to only last an hour into my shift before needed to throw my guts up again. I got sent home and that was the last I saw of my work place as employee until January 2012.

So, I’m back home, still very ill, not eating and drinking very little. My parents go on holiday – thinking that what I have isn’t more than just a little V&D – and everything is okay for about a day. I return to the GP and see what we call ‘the duty doctor’ – one used for just emergent cases that can’t wait and when appointments are fully booked – and she just told me to eat. Or try to eat, and drink plenty of water. I had my brother in tow, he was very frustrated. I wasn’t getting better. I was getting worse. I was still spending half of my time in the bathroom. I wasn’t having a decent meal and I was still throwing everything up and having (now) chronic diarrhoea.

On August 28th, I noticed my elbows starting to swell. I was becoming quite clumsy and bumping into things with some regularity. I thought it was just a bump and thought no more of it. It started to get painful to touch and really began to get huge. It was keeping me awake. I phone my parents and they advised my brother to take me to the local community hospital. It took all my strength and effort to get into the car and not cry. I plastered a smile on my face, started my little sarcasm routine and got seen by a senior nurse at the facility. She took a history (a small one at the time!) and got my temperature and blood pressure. One look at my temperature and my very low blood pressure lead her to call a doctor in to see me. He said in no uncertain terms was I to leave without going to the hospital. I had a choice – go to Good Hope in Sutton Coldfield or the hospital in Burton-upon-Trent. Both were equal distance from home, but we were more familiar with Sutton. My brother drove to Good Hope (GHH) got me checked into A&E and waited. Four hours. I saw an Orthopaedic surgeon who couldn’t give me a definite answer to why my arms were so swollen or why all my joints now ached. I continued to see more doctors – mostly registrars and consultants –none of who could determine why I was in so much pain. How I managed to go the entire time in A&E without needing a bathroom is beyond my own comprehension. I was admitted and treated for Cellulitis. I was discharged two days later with a week’s worth of Flucloxacillin and told to eat more and to keep hydrated.

My parents were back in the UK the day I was admitted to hospital, just before my mom was due back at work. It was a horrible time. I’d never spent time in hospital before. I was not enjoying all the hospital smells and the constant parade of people coming to see me, to poke me and annoy me incessantly. I was relieved to be discharged.

Sadly, I was back 4 days later. My V&D had not resolved itself, if anything it got alot worse. The Flucloxacillin was making matter worse and I could hardly keep water in my system long enough for it to help. I was taken to A&E, waited another couple hours in minors and was finally seen by a doctor. She was lovely. She was worried my ‘food poisoning’ had lasted this long. She agreed that my discharge last time was far too quick and more tests were needed. What tests exactly, she didn’t know. She admitted me to a ward and they took it from there. I was met by medical students and a very senior consultant. I was hooked up to IV fluids and given medication to resolve my temperature. I sat there in my isolation room – chronic V&D requires a room with private bathroom facilities, or in my case, a commode – listening to these medical people discuss me. They talked possible diagnosis and tests and when someone uttered the words “It’s most likely UC or Crohn’s” my ears pricked up.

I have a not so quite personal history with Crohn’s from my university days and it sent a cold chill down my spine. I knew it wasn’t pleasant and it wasn’t easy. I was just so tired of being sick. It had only been a couple weeks of this unknown, uncertain life I was now leading and I was so over it. I agreed that they do what they needed to do to find out what was wrong with me, and pronto. I was taken to Endoscopy for a Flexi Sigmoidoscopy. They found Crohn’s in my large bowel. I cried with surprise and with relief.

Two days later I was taken to CT for another couple scans to determine the severity of my disease. Luckily, it wasn’t in the bottom end of my large bowel and not in my small bowel. Small favours eh? Four days later, after meeting my consultant and agreeing on a treatment plan, I was discharged. I felt better. Not great, but not as bad as I was. I had been immediately started on IV Hydrocortisone and Pentasa. I was given Adcal too. The IV Hydrocortisone worked like a charm. I ate meals and had snacks and drank everything and anything in sight I could get my hands on. I was given prescriptions for Prednisolone and Pentasa and a follow up appointment for two weeks later. They would see how I was progressing then.

I should note here that this was not my worst admission. In fact, this was the simplest by far. But, it was my worst level of infection –my CRP was 231, ESR of 49 and a WWC of 15.8. I would get better from here, if you only looked at my blood work. But I was still very sick. And I was going to get alot sicker before I could be the person I am today, sat here typing to you.

It was on Sept 19th – the day before a clinic appointment – I began to feel unwell again. I had stopped eating, I was still visiting the bathroom at the same rate as before my diagnosis and I was exhausted from being up most of the night. I was so irritable and emotional I was given a wide berth by parents, despite needed so much help to practically everything. We trundled into clinic the next day – me, my mom and dad – to see my consultant; a new and frequent part of my story with Crohn’s: clinic after clinic of appointments, I would soon become a very regular face in my hospital. We saw the registrar. I wasn’t even bothered, I got to lie down on the bed for an exam, I was just so tired. I fell asleep in the waiting room; it was clear things had got worse. I had tried to push through the pain and tried to make myself believe I was getting better, but clinic was the final straw.

I was admitted again that night to the Gastro ward. I was seen by my consultant on ward rounds. He wanted more tests done. I still had all of the same problems as beforehand, and he decided to start medication from scratch again – IV steroids. I loved them! An 8 hr back of fluid with two loads of steroids and paracetamol. I was doing okay for a couple days. However, I caught C Diff. I was moved to isolation and was considered for transport to a hospital on the other side of the city. Inconvenient is exactly how I would describe C Diff. I had to spend another week in isolation and restoration of normal bowel movements until I could be discharged. It was during this period of time, I got alot more chats with my GI and my IBD nurse. They wanted to see if they could get funding for a drug – Humira. It was explained in very simple terms and I accepted. It was going to be in the future, I wouldn’t have to deal with it just yet, if anything next year, maybe. As luck would have it, it was accepted two days after it was submitted.

I was discharged on this third time with the usual stash of Prednisolone and Adcal. Added in was Metronidazole and Vancomycin – the antibiotics duo that was going to get rid of my C Diff once and for all. I was very optimistic this time around. I was due for a GI appointment a week later to discuss my Crohn’s medication beyond Prednisolone, the wonderful Azathioprine. I started on 1x50mg tablet once a day. My antibiotics had finished and I was only on Prednisolone. Nothing changed. I was still ‘wasting away’ my family told me. My dad was convinced at this point that they C Diff was still in my system and given the type of drug Azathioprine is, my immune system couldn’t fight it.

I went to another clinic appointment two weeks later and got my Azathioprine dosage upped. The next day I was rushed to hospital by ambulance; I couldn’t get out of bed, I was breathless and in agony. It was my guts and joints and nothing we were doing was helping. I was carried down the stairs by a paramedic and taken to GHH. I was readmitted to the Gastro ward and was given an ‘emergency’ Flexible Sigmoidoscopy.  My Crohn’s had got worse. The inflammation was not being touched by my medication. At this point I was just a tiny 47kg. Humira was my next option.

What happened on this admission scared me the most. C Diff was back. I developed shingles. I had what I call ‘The Green Weekend’ – Bonfire weekend 2011 – and I was producing nothing by green. I was forced to endure a NG tube placement before I pulled it out. I didn’t quite believe I was that sick that someone needed to feed me. I was sat outside on my previous admission with some of the other patients and this guy was just walking around with his feeding bag on an IV stand. I was determined that I wasn’t going to be that person. I decided to fight. I was placed on Modulen – a reversed version of Slim Fast, to help me build weight – and began my antibiotic and antiviral cycle. I spent two weeks in isolation before being discharged on October 18th.

Four days later I returned to the hospital to begin my Humira. I sat in my consultant’s office and we talked through the process and risks of Humira. They told me that this was how my life would be for at least a year; bi weekly injections in my thigh. I was in the category of ‘moderate to severe’ Crohn’s, and I was hovering near the top of that scale. I needed this medication bad.

I had two more tests following my last discharge from GHH that year. A Bone Density scan at the end of December and the dreaded MRI bowel scan on January 17th 2012. I returned to work one week after my last scan.

***

Fast forward to December 2012.

I had gotten to a place I thought I would never be, I was done with the Humira injections. I’d faced many battled with the dreaded pen and its intense and always frustrating catch 22 pain, but its risks were now outweighing its benefits and I wanted off. I was fully scoped on the 20th of December, which showed good healing and progress from the year before. I was in a good place, both mentally and clinically, so my GI took me off the Humira in early 2013.

The relief was overwhelming. I was no longer tied to fortnightly needles in my thighs and I could finally feel some let up in my achy and painful joints. This was to very shortly lived as within weeks I was back to the clinic in pain and without control of my bowels. I needed medications, and unfortunately, my first stop was Prednisone, again.

In the months that followed I would find out the true cost of Humira, both the power it had over my body, over my Crohn’s and what exactly it has been masking, and its brilliance. I would go onto countless rounds of antibiotics for three abscesses, one tooth infection treated three times, come on and off steroids three times, take Mercaptopurine – Azathioprine in its pure form – that left me breathless and A&E bound; not once but twice in a four month period, experience three more failed medications, discover two narrowings in my large bowel and become so fatigued I would fall asleep straight from work. I endured all of that for roughly six months before my IBD nurse requested biological treatment funding again.

***

It’s now mid December 2014.

Following a very painful and frustrating 2013, I started Infliximab in the December. That lasted on its own for just over a year and despite my best efforts, its effectiveness started to wear off in February of 2015. The decision was made to add a secondary drug into my treatment plan; a weekly dose of Methotrexate with thrice-weekly folic acid – essential in reducing the toxicity of Methotrexate in my system. I started on a small dose of 10mg which was upped to 20mg after a couple of weeks. It was tough going; Methotrexate is essentially low dose chemotherapy, which works to aid the switching off of my immune system. By using both together, my consultant hoped I could regain some of the loss effectiveness of my biological treatment.

I was tested for my antibody levels and drug trough levels too but it simply wasn’t doing a good enough job. They could give me more – I was losing weight all the time and Infliximab is administered on a strict weight ratio – and they were hesitate to give it more frequently. But they did begrudgingly do so after 3 months on the Methotrexate. It worked for an infusion or two but by that point we were waiting for the go-ahead for Vedolizumab to come through. This came in September 2015.

Within the space of a month, I was off the Methotrexate, then the Infliximab, had a Small Bowel MRI done and put onto Vedolizumab. Of all the biological treatments I’ve had Vedolizumab has been the slowest to work. And now it’s been the most unresponsive too. I’m looking at probably surgery in 2016.

Though I am healthy and happy, my guts aren’t always that. Following a recent MRI my disease is stable but still active. My ileum is twisted and my disease is considered to be potential fistulating. Despite all this new information, I am trying to remain positive.

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