Friday, December 07, 2018

As it's the last day of Crohn’s & Colitis Awareness Week, I’ve decided to momentarily put my pride to one side, and my story of blood, shit and tears onto the internet for the world (and nosey old friends or twitter followers) to read.

To give you a brief overview, I'll start off with a couple of statistics.

As of right now, at least 300,000 people throughout the UK suffer from Ulcerative Colitis or Crohn's Disease; the two main types of Inflammatory Bowel Disease. Despite these conditions becoming increasingly more common in recent years—especially amongst young people—Inflammatory Bowel Diseases are still widely unheard of, and quite often misunderstood. Crohn's and Colitis are invisible illnesses, and each person suffering from IBD can experience varying degrees of severity, symptoms or form of treatment, sometimes with severe or life threatening results. Due to the occasional stigma surrounding the diseases, it's thought that some people with IBD go undiagnosed and instead suffer in silence.

This is my (possibly slightly too) personal experience of being diagnosed, and living with Ulcerative Colitis.

When you’re eighteen years old, the last thing you want to be told is that you might have Colon Cancer. Or in my case—after a lot of pokes, prods and cameras up the bum—told that it’s not in fact Colon Cancer, just a long-term incurable disease called Ulcerative Colitis (that will maybe, probably, most likely increase my risk of Colon Cancer a bit).

I was seventeen when it first started. I went to the toilet one evening, and noticed afterwards that there was quite a bit of blood when I wiped. I tried not to think too much of it, until it happened again...and again...and again, after which I finally decided that I should probably go and see a doctor. The doctor told me that because I had an anxiety disorder, the blood in my shit was definitely in my head, and upped my antidepressant. You know, like any good doctor would.

I went home, stumbled about my life, shat blood, lost a stone in weight, couldn’t eat properly, felt like an empty shell of a person. But it's okay, my doctor had upped my antidepressants. At least I wasn't having panic attacks.

After a few blood tests, a lot more GP trips, and a threat of an admittance to a psychiatric unit for the eating disorder I clearly had because I was ‘wasn’t eating and losing so much weight’, I took an extremely gross photo of what was coming out of me and showed it to the doctor.

“Oh, oh—that’s quite bad isn’t it? I’ll refer you to the Emergency Assessment Unit right away.”

After an immediate admittance to hospital and a couple of days worth of tests, I was finally diagnosed with acute Ulcerative Colitis and put straight onto IV steroids and fluids. I remember the wait for the results so clearly; the worried looks on my parents faces, the sympathetic half smiles off of the ward nurses, the anxiety of not knowing what was going to happen to me, the stuff that the NHS tries to pass off as food, and above all—how happy I was for the lie down.

As I mentioned before, Ulcerative Colitis is a form of Inflammatory Bowel Disease (IBD—not to be confused with IBS) which causes inflammation and ulceration of the colon (large bowel) and rectum. UC is a chronic, incurable and lifelong condition. Depending on the patient, it’s possible to maintain periods of good health (also known as remission), as well as relapses or flare-ups when the disease is active. Symptoms are quite individual, but for me include; Passing blood/mucous when going to the toilet, extreme fatigue, dizziness, weight loss, feeling feverish/flu-like, loss of appetite, nausea, anaemia, osteoporosis, sore joints, urgently needing the toilet, and a load of pain and suffering. Glamorous, innit?

UC is an autoimmune disease which—simply put—means that my immune system is an idiot and can’t tell the difference between healthy cells and unhealthy cells,  and so attacks my Colon as if it shouldn’t be there. It had one job and it can't even do that right.

The reality of my ‘new normal’ didn’t fully hit me until I was discharged from hospital three weeks later. I was at rock bottom with no way up. I felt like I’d been completely stripped of my dignity and self identity and left to flounder about, navigating my way through a life I didn’t recognise as my own. My face and body were round and puffy from the steroids, my muscles were weak (which meant being pushed around in a wheelchair), and I was so suicidal that I couldn’t be left alone for even minutes at a time.

“We’ll see you in clinic in a month.”

What was I supposed to do until then? How did I explain all of this to my manager at work? How could I go out in public looking like I did? How was I possibly going to live a normal life now?

Like the 21st century teenager I was, I turned to the internet. I watched videos about IBD on YouTube, read articles and research papers, discovered that Darren Fletcher—a footballer that I spent my childhood watching play—had the same disease. The deeper I delved into videos, forums, online support groups, blog posts and Reddit threads, the less alone I felt in my brand new world. 

My health has been a bumpy road since then. I’ve had some periods of remission, during which I’ve had some of the most incredible times of my life. I’ve been to theatres, shows, concerts and gigs, made memories with friends and also regained my confidence in doing things alone. I’ve travelled, road-tripped in Australia (also known as running away from your problems for a bit) and have learnt to drive. I’ve managed to do things that I always struggled to do, either incase there wasn’t a bathroom, or simply just because I was too unwell to try.
During that time I’ve also experienced some of the lowest points of my life.

I’m twenty-three years old now and am currently recovering from the worst, longest and most frustrating flare-up that I’ve experienced so far, which started back in October of 2017 as a small amount of blood and pain when I went to the toilet. I immediately called my IBD nurse to explain the situation, requesting blood and stool tests to check if the disease was active...then spent the rest of the week mentally pacing and nervous shitting whilst I waited for the results.

“Things don’t look great, but don’t panic Leanne, we’ll get it under control before it gets worse.”

This is when I started to panic.

I’ve been on a type of immunosuppressant/chemo drug called Azathioprine for four years now, which—thanks to a defective gene passed on by both of my parents—my body can’t process properly. This means that I’m now on a low dose, running the risk of an unstable remission and/or some nasty side effects. If Azathioprine stops working properly, my options when it comes to additional treatments start to run a bit thin. Steroids (in all their varied forms) have helped me reach remission in the past, but make me very mentally unstable and can’t be taken long term. There’s drugs called Biologics (which are not only expensive for the NHS, but under my consultant and area, are only considered as a last resort) and then there’s surgery to remove all or part of my colon—which in my case, is what I’d call the last resort.

I struggled along up until February by using steroid based enemas (the things you squirt up your bum—less side effects that way). Nothing was improving, just getting steadily worse. Despite my slowly worsening blood tests I repeatedly refused oral steroids, based on the fact that I knew I couldn’t cope with wanting to die again on top of how I was already feeling. I begged my Gastroenterologist (GI) to let me try Biologics (which aren’t known to have the same mental side effects as steroids), but he refused, said I wasn’t ill enough and told me to continue the enemas if I wouldn’t take oral steroids.
I could feel myself progressively reaching the point where a happy face and a hastily shouted ‘I’m fine!’ at my co-workers wasn’t really cutting it anymore. I was in so much pain and I knew that things were getting bad.

I thought that if could prove my physical symptoms, my GI might see reason and let me try Biologics—and so I requested a Colonoscopy(*). 

If you’ve ever been unfortunate enough to have taken Colonoscopy prep, you’ll appreciate how bad I must’ve felt in order to request one voluntarily. If not, count yourself lucky. I can only describe it as drinking and then shitting liquid evil. It's nicer with orange squash in it, but that's beside the point. 
Three weeks pass and I drag myself into hospital for the procedure, feeling like hell itself was taking up its physical form in my digestive system. I politely declined sedation (I’m an idiot) so that I’d be fully awake for the results and able to go home straight afterwards—only to be told that apart from a few centimetres of ulceration in the distal portion of my Colon, the rest was all clear.

I’m sorry, what? How could it be clear when I felt that unwell?

Feeling like an idiot, convinced that I was escalating things in my mind, I went home and tried to ignore the fact that I felt 47% of the way towards my bloody mucous-filled death. There’s a picture.
I didn’t understand how my Colonoscopy and test results were only showing mild inflammation when I was struggling so much. It made me feel weak and deflated that that was all it took to bring my life to an almost standstill. And just as I thought I couldn’t feel worse, I did.

I couldn’t cope with the pain, nausea, exhaustion, the fact that I had to go to the toilet 25 times a day and night. I called my IBD nurses again and again, crying down the phone and telling them that there must be something we’ve missed—there’s no way I could be making this up.

“Your GI says that your colonoscopy was mostly clear and that your bloods aren’t too bad. Carry on with the enemas.”

June came around and I was signed off from work. I couldn’t eat, could barely drink and was nearly always sleeping. I was screaming and crying in pain on the toilet and losing so much blood each time that I could barely walk back to bed. My family and friends told me to go to hospital, but despite how ill I felt, I couldn’t think of anything worse than being told again that things weren’t as bad as I was making them out to be, which is what I was being told repeatedly by my doctor over the phone. Nobody was listening, nobody was doing the tests I was demanding, and nobody believed me. 

It wasn’t until two days after my birthday—which I spent on the couch sleeping—when I hadn’t been able to get any liquids down for over 24hrs, that my Dad called my nurse again. He told her how I literally felt and looked like I was dying, and she finally requested an admittance to hospital.

It took a new Gastroenterologist for me to finally be heard. He wanted me to have IV steroids for at least a week. I was reluctant, and he actually listened to and agreed with my reasoning. He stuck me on a drip, and immediately arranged for me to have some x-rays and a sigmoidoscopy (a colonoscopy that isn't quite as invasive). The x-rays showed what looked like quite a bit of ulceration, but they wanted to be sure with the sigmoidoscopy. So again (like the idiot I am), I politely declined sedation so that I could watch my Colon on the screen whilst they put the camera round.

I cried. Not because of the pain, which there was a lot of, but because I knew what a healthy colon is supposed to look like. Mine looked so far past healthy that it didn’t even resemble a colon anymore.
I cried because despite my previous GI and test results telling me otherwise, I’d been right all along in knowing my own body and mind. I cried because the trainee nurse holding my hand looked into my eyes with tears in hers, smiled, and stroked my head in a way that told me how bad things were.

“God, I can’t believe you’ve been coping with that,” my new Doctor said.

I agreed to four days of IV steroids, fluids and iron infusions to avoid emergency surgery whilst my new consultant submitted my case to gain funding for Biologics—which was granted. I cried again whilst I had my first infusion of Infliximab. Relieved, happy tears this time.

My old GI visited me two weeks later on the day of my discharge from hospital, to tell me that he was sorry he didn’t listen and that he let my symptoms become life threatening. He said that he’s never seen a case before where a flare-up has progressed and worsened so rapidly. That I was extremely lucky I didn’t have to have surgery or worse. I told him how many times I called begging for his help, that I can’t be the only person with Ulcerative Colitis to have unpredictable symptoms, how disgusting it is that I’ve been left with so much damage to my insides because of his negligence.
He apologised again, said that he hopes Infliximab works, but to prepare myself to have my colon removed considering that my disease 'is unpredictable'. All in all, he’s a bit of a dickhead.

Since coming home, I’ve been back to hospital five times as an outpatient for my Infliximab infusions, which seem to be working. Since coming home I’ve felt exhausted, overwhelmed, scared, alone and uncertain about my present and future. I know that right now surgery seems like the worst possible thing that could happen to me, but I also know that I’ll handle it if and when I’m left with no other choice. I felt like this when I was eighteen and after every flare-up that’s come before this one. Somehow I got myself through it—I know I will again.

Being told that you have a disease is hard. Living with that disease, especially if it’s active, is harder. Nobody can tell you exactly how to deal with your illness or remission, there’s no rule book (how annoying is that?), because everyone is completely different. That’s not necessarily a bad thing. At times it’s scary and isolating, or even debilitating—but every day is a new day. That new day might be brilliant, it might be painful, it might be the lowest of the lows or the highest of the highs. Either way, that day is a learning curve and another chance to prove to yourself how strong you can be.

Most of the time, having UC isn’t generally something that my life revolves around…it’s merely a minor part of me that is sometimes an inconvenience. Sometimes, it’s the end of the world.

I have had to learn my ‘new normal’ over and over again. Each time, I’ve realised that although it does occasionally feel like the end of the world, it isn’t. Everyones lives are constantly evolving and changing, for good or for bad. That’s just life. Worrying about what may or may not happen to me someday won’t cure me, but that doesn’t mean I can’t also feel angry and frustrated at times too.

If you’re in a situation like mine—I’ve learned that you’ve got let people know how you’re feeling—don’t be ashamed of your version of normal. Don’t say things like, ‘I shouldn’t complain, so many people have it worse’. Honestly, what’s that about? You’re allowed to complain that you feel shit, or ask for help if you need it. Surround yourself with people who care about your wellbeing, even if they can only infinitesimally understand the situation that you’re in. Announce loudly that you need a poo and make a joke about things if you need to, but don’t allow yourself to wallow in self pity if you have people around you who you can share it with.

I don’t quite know who I wrote this post for. Maybe in the beginning it was to (hopefully) make a few more people aware of Inflammatory Bowel Diseases and what comes with them. Ultimately I think I wrote it for eighteen year old me, who stumbled across words like these and felt a little bit less alone.

To the people who are in that rock bottom, or shiny new diagnosis phase...I won’t pretend that it’s always easy. I hate having UC. It’s annoying and painful and sometimes embarrassing. But I’ve also grown as a person and have got through situations I didn’t think possible because of this disease. I’ve made friends, become more aware of people with invisible illnesses, and don’t don’t take anyone or anything at face value. I’m extremely grateful for the days where I do feel well, and have a huge appreciation for the privileges I experience because of the NHS and (most of) the staff who come with it. It’s not all great, but it’s not all bad either.

One final note that I wish I'd known at the beginning, and this goes for any illness or disease: When you're Googling things, whether it's other peoples stories and experiences, articles, opinions on new medication or treatments...just remember that people generally only tend to write about the negatives online. The people with positive experiences don't have as much reason to write reviews, they're just living their lives. Try to look for unbiased advice and resources in the right places.

Lastly, especially as it’s Crohn’s and Colitis awareness week—If you’re a person who has or knows someone with IBD—or even someone who doesn’t, I’ll leave some links down below incase you’d like to take a look at some (more coherent) information and resources. You could even donate to Crohns and Colitis UK if you’d like to help fund the research into finding a cure. Help me out lads, I’m so bad at swallowing pills.

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(*) I'd like to reiterate at this point that my previously mentioned GI was exceptionally awful. If you're unhappy with who's handling your treatment, please tell people to fuck off quicker than I did. 

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