The Chronic Diaries: Katie’s Journey with IBD

Where are you based?

I am based in a small town in Greater Manchester, UK.

What chronic condition(s) do you have? Please briefly describe what they are?

My main chronic illness is IBD, specifically Ulcerative Colitis which is where your colon becomes inflamed and ulcerated. But having one autoimmune disease is like playing Pokémon – you gotta catch em all. Since suffering from IBD, I have also bagged myself: Hidradenitis Suppurativa (abscesses around sweat glands – I suffer quite bad under my arms), Erythema Nodosum (inflammation of the fat cells in skin – extremely painful lumps on my shins), real bad Psoriasis (scaly, itchy scalp), scleritis (inflammation of the white part of your eye), many fistulas (abnormal connections between two parts of your body), hernias (organ is pushed through weak spots), anaemia (iron deficient because of all the blood loss) etc. etc. 

What symptoms did you deal with before you were diagnosed?

It all started with just feeling a bit off, a bit sick – particularly after eating. Then I started seeing a little blood in the toilet, as well as loose stools, paired with bad urgency. The most excruciating abdominal cramps EVER – I was crawled up like a prawn hugging my belly on the landing, the worst pain. But I ignored these for weeeeks because I just put it down to grieving the loss of my grandad on the 17th August (I believe the stress of his death triggered the onset of my IBD – cheers grandpa). Then I started throwing up and suffered major fatigue alongside.

How were you diagnosed? What was your journey to diagnosis?

Well, after suffering with the above symptoms for a few weeks/a month I FINALLY went to the doctor – I put this off because I hate the doctors (oh the irony), it was my 18th birthday on the 28th August and I was meant to be starting university very soon. But I literally felt like death so I dragged myself there. The doctor was an angel, I explained everything and she said she suspects severe Ulcerative Colitis and rushed me straight off to hospital (This was at the end of August). I was very scared.

So, during my admission I was managed as an IBD patient, I had all the tests, scans and procedures and trialled every type of drug and treatment they had. Nothing was working at all. I managed to escape hell on a day release type thing to go to my grandad’s funeral on the 9th September. I even tried biological treatments but there was no improvement, things were getting progressively worse very quicky. Until one night, after yet another urgent CT scan the surgical team came bursting through the door and told me I needed to go down to theatre right now to remove all of my large intestine. I was like haha what?? Apparently, I felt like death because I was literally on death’s door – my colon had perforated twice and was at major sepsis risk due to severe toxic mega colon. So, in the very early morning of the 13th September I had an emergency subtotal colectomy which left me with an ileostomy bag and a mucus fistula bag.

An ileostomy is where the end of your small intestine pokes out of your belly (also known as a stoma) and then a bag is stuck over to collect your poo. The mucus fistula is where they connect the top of your rectum out onto your belly as well so that all the blood and mucus can escape to avoid even more nasty symptoms down the line – I will just add that most patients do not have a mucus fistula, they only have the ostomies. Mucus fistulas are mostly for the really sick patients with severe disease. So yeah, I had major emergency surgery less than two weeks after diagnosis, love that for me.

I was discharged a week after (26th September). She removed my staples. But jokes on me, I was back in the next night because my scar had opened up into a huge, gaping 12x4x4cm hole in the middle of my belly – not cute. Panic over, apparently its common and I was fine – I just had to spend over a year visiting my district nurse to get it packed and changed every day. The wound also developed a fistula from my rectum to my belly (called ‘enterocutaneous’ I think) which was the most annoying, inconvenient thing but I’m so glad its healed now.

I was back in hospital for a month from the end of November up until Christmas due to really bad bleeding again, which I thought would stop when they removed the organ but hey ho. Found out I now have ‘florid haemorrhaging proctitis’ – lovely. Basically, now my rectum is severely inflamed and I’m awaiting a proctectomy which is where they will remove it and stich my bum closed like a little barbie doll. In this surgery she is also going to excise all of my big nasty scar, fix my fistulas, repair the hernias and reconstruct my abdomen to bring all my muscles back together and stich me up all neatly (fingers crossed). I had my pre-op in February but Covid 19 came along and pressed cancel.

Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? Etc

My entire health journey has had a gigantic impact on my life. I was supposed to be starting university on the 17th September 2018 but I’d just had my organs removed instead. I had to defer starting my degree for a year which seriously upset me, watching all your friends go off to uni, having fun at freshers and living their best life doesn’t really do well for your mental health when you’re stuck in hospital that’s all I’ll say. I was unable to work as well due to being really ill – majorrrr cabin fever being stuck home all the time, but I guess we can all resonate with that now we’re all on lockdown huh?

Are you on any medications?

I am currently on a biologic treatment called Amgevita, which is a biosimilar of the main drug adalimumab. These are pre-filled injection pens that I administer every 2 weeks. I absolutely DESPISE doing them. I started these in November 2019 so I’ve been on them for a year now and if I’m being completely honest, they haven’t really worked much. This drug is made from a synthetic antibody. It targets a protein in the body called TNF-alpha which is naturally produced by your immune system to help fight off nasty stuff. But obviously because IBD is an autoimmune disease, our immune system attacks us instead of the nasty stuff, so this medicine binds to that protein to stop it from hurting us – suppresses my immune system to stop it fighting me.

I have been on many medications prior to this as previously mentioned. I tried all the antibiotics, steroids, infliximab infusions (another immunosuppressive biologic) lots of courses of prednisolone, omeprazole, gabapentin and of course all the morphine and fentanyl one could ever need to cope with chronic pain. I can’t remember them all but you get the idea.

What side effects do you encounter, if any?

Since starting the Amgevita injections I have noticed a bunch of skin problems. I feel that adalimumab has started my psoriasis off and I have REAL bad peristomal skin now. I feel like I get headaches a lot more as well and I am more subject to colds and being ill in general due to it supressing my immune system. Of course, wherever I inject absolutely kills after but that’s a given.

What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?

I deal with chronic fatigue daily. It really has a massive impact on my day to day life especially with uni. I get brain fog quite a bit which doesn’t help essay writing. Having all of the chronic illnesses I have does affect my mental health and I have bad days. To battle these, I take iron and B12 supplements, drink a lot of water and try and do a little exercise if I have the energy. I constantly make lists and reminders and try to focus on my work but importantly take needed breaks. I do allllll the self-care, which is an absolute priority. Who doesn’t feel like they’ve got their life together after they’ve done a face mask? Nobody.

What occupation do you have? How does your illness effect your job/employment?

I am a full-time undergraduate LLB Law with Criminology student. My conditions affect me majorly, as mentioned the hardest is fatigue. I find it so hard to do assignments and prep for seminars because I just do not have the energy most of the time.

I am also a member of a patient advisory group for a research fellow at my university. I work with her to co-produce materials, such as pamphlets on how to tell your friends about your Crohn’s or Colitis and how to react if you’re that friend that’s been told and I help advice on any future research studies they are carrying out.

Here are the links to those information sheets if anyone wants to have a look.

So, our research groups contains around 10 young people, ranged from 14-26 years old. We worked together with the Being me with IBD study team – in which two professors from my University are involved in!!

So, here’s the link about how to tell your friends about your Crohn’s and Colitis:

https://sites.edgehill.ac.uk/cc/files/2020/04/How-to-tell-your-friends.pdf

Here’s the animation video about telling your friends:

Here’s the link to support your friend if they’ve just told you they have Crohn’s or Colitis:

https://sites.edgehill.ac.uk/cc/files/2020/04/How-to-support-a-friend.pdf

There is also an information sheet about how schools, colleges, universities etc. can support those with Crohn’s or Colitis:

https://sites.edgehill.ac.uk/cc/files/2020/05/Do-you-work-with-CYP_FINAL.pdf

More recently I am (hopefully) going to be a volunteer at my local court house to work with the Witness Service. I have my interview soon, but the team leader says my application is very promising. If I get it, I will provide emotional support to witnesses testifying for trials, explain all the court procedures and legal terminology, show them around court and sit in with them. I am honestly so excited – it will look absolutely fab on my CV for when I graduate from uni!!

A biiiiig part of my time is taken up with social media. I have an Instagram account solely for IBD (@ibdkatie – https://www.instagram.com/ibdkatie/ ) where I love connecting with fellow spoonies and giving helpful advice – by far the best thing I have ever done! I also have my own blog (IBD101 – https://www.ibd101.net/ ) where I write posts on my experiences, my surgery, university etc. and also have a chronic illness insights series where I share other people’s health journeys. My hope is to raise awareness and advocate for those who have chronic illnesses.

How does your illness impact you mentally?

My illnesses impact me majorly with regards to my mental health. I constantly feel sad due to all my flares and feeling left out like I’m missing out on all of the stuff my friends do because of my health. It is heart-breaking. I really do grieve my old, healthy self quite a bit not going to lie – but that’s perfectly fine! The big one is obviously my surgery. I have a bag stuck on me for the rest of my live and a million scars which has plummeted my self-esteem. All of my other conditions and I lost pretty much all of my hair when they pumped every drug into me in the space of 2 weeks to try and avoid surgery – I now where a wig and have multiple hair pieces/ponytails to try and make myself feel a lil prettier. Also, I regularly compare myself to my able-bodied peers at uni because I can’t study or work as hard as them due to being restricted by my health. But I am working on my mental health, and it has gotten a lot better!!

How do you keep motivated dealing with your chronic condition in your daily life?

I keep motivated by reminding myself how far I have come and what I want to achieve. At one point I was bed ridden, had 3 ostomy bags, couldn’t walk – now I am as healthy as I can be at the moment, with only 1 bag and am in my second year of my law studies. I will get that degree. I am capable. I am strong. Nothing can stop me. I want to make my family proud.

Is there any advice you would like to give to people who are on their chronic illness journey?

My advice would be to go to the frickin’ doctors when something is wrong lmao. I really believe that if I went to the doctors when I first had symptoms, I’d still have my colon. Also, don’t settle. If healthcare professionals aren’t doing much for you, advocate for yourself! You know your body more than anyone. Push for answers!

Chronic illness is a whirlwind of emotions and a compete rollercoaster. Learn that everything you feel is valid. Healing is linear, you will have good days and bad days. But do NOT give up, keep going.

How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?

Honestly there are like two sets of people. The ones that are absolute angels and respectfully ask me questions, give me love and are generally lovely about it. Then there’s others who either don’t give a crap, think its nasty (predominantly my stoma bag) and don’t wanna know. But for the most part I don’t think people actually understand. I suppose they will never fully know unless they go through it themselves.

Is there anything you want to say to these people? Or the general public who do not have a chronic illness? To the general public I would say…educate yourself on invisible disabilities. Be nice. Be open-minded. You would have no idea any of us with chronic illness are sick. You can’t see my stoma bag, or my rotting insides – but that doesn’t mean they aren’t there. Don’t kick off when you see a 20-year-old woman walking out of the disabled toilets. You have absolutely no idea what anybody is going through just from plain sight! Just be respectful and accommodating if sick people have to cancel plans. Importantly, don’t treat us any different! – please still invite your sick friends to go for dinner or see a movie, don’t shut us out all the time, we’re still normal people.

Chronic Exposure Network