Inflammatory Bowel Disease: My Story

 

The story of my health is an extremely lengthy one (14 years to be exact) but i’m going to attempt to share the, suitably named, “Trials and Tribulations” of the past 14 years leading up to right now. If you manage to reach the end of this blog post then i actually applaud you.

I don’t actually remember when the issues began but i know as a baby i was always a little shite with food and being sick alot more than the average child. I was extremely skinny and the always lovely midwife my mom had referred to me as ‘a scrawny little thing’ which is ironic because she should’ve seen me on steroids last year, i could’ve crushed her with my huge waterballoon arms. Anyway, i was 6 weeks premature due to my mom having a placenta abruption and so an emergency C-Section brought me into the world. There is no solid evidence although there are many speculations on whether IBD can be caused by premature birth and the gut not being able to form completely. I for one think this is a very possible reason as a lot of people i know who suffer with IBD were premature babies, and the earlier they were born, the worse they seem to have it (Disclaimer:This is my opinion and not fact. There is no concrete scientific proof, just hypothesis’).

The earliest incident i can recall was when i was 7 years old, i burst out crying after dropping my biscuits in excruciating abdominal pain (I was probably more upset i dropped food than the pain tbh) when my friend helped me to ‘sick bay’ and sat waiting until my parents picked me up, thinking it was just a standard sickness bug that had been going round, Laura still won’t let me forget my pained face as the custard creams fell to the floor, she seems to find it remarkably amusing. But so began a whirlwind of hospital visits, scans, blood tests, fingers up my arsehole, need i go on? As i lay on the children’s ward in bed with the promise of a nintendo Ds and Nintendogs, the Doctor told me i was going to need to go into surgery as they could not understand why i was in so much pain, (i really wasn’t fussed because i was getting a Nintendo out of it). Instead, the doctor came back and still to this day i do not know what changed their minds but they had decided to give me a phosphorous enema instead, to those who don’t know what one is it, there’s no nice way to explain it, it is a pouch that gets shoved up your arse and lets out a chemical that literally strips out everything that is inside you. Now, let’s paint a picture here, the last time i’d been to the toilet for a shit was February, it was now October and i was that blocked up i was vomming up everything, you can imagine the carnage. To my now 21 year old self i still fucking hate these things, so to my 7 year old self, it was literally the worst , most painful thing i’d ever had, it came out every single exit available (Sorry for the graphic images) and quite frankly was like world war three was going on inside my stomach. However the most painful part of the experience was my dad was not allowed to be beside me, i have always been a daddy’s girl and 7 year old me who genuinely thought this pain meant she was dying, couldn’t have her dad with her because the doctors thought it would be inappropriate for a male to be in the room, so he stood crying outside the door, my dad never cries so remembering this image literally makes me both angry and wanna cry. The following months were of the same things,  more doctors saying they didn’t know what was causing the pain and the extremely severe constipation. After years of the pain coming and going they finally decided to shut up the moaning family of the girl with the stomach ache and tell me (Now 10) i had IBS, irritable bowel syndrome. To anybody reading this who has IBD, that diagnosis is probably all too familiar and frustrating, i know.

Irritable bowel syndrome is not a real thing, it is not a solitary illness, it is an umbrella term for something wrong in that department. Let me break it down, irritable – something that is irritable (obviously), bowel – any place within the bowel area, syndrome – a group of symptoms which consistently occur together. So yes, irritable bowel syndrome (IBS) is not a real thing, doctors just do not know exactly what the issue is.

Lucky for me i have a very stubborn, sometimes crazy and extremely caring mom who literally pissed off every single person in the NHS until they refused to ignore us any longer. By now hospital visits were extremely frequent and my symptoms and flare ups were becoming worse.  To cut things short i developed various other illnesses and ailments caused from my undiagnosed stomach problem. I missed out on months of school at a time and even studied for my exams from home. By the time i was 16 and beginning sixth form my symptoms were the worse they had ever been, i was vomiting every single day and crying in pain, as well as shitting myself every day. But you know, apparently that’s normal? I began to develop extreme anxiety to the point i could not even leave the house in fear of being sick or shitting myself, for 6 months i was house bound until i finally received counselling.

Still, the years continued and despite having more intrusive tests done i was still stuck in the same place, sleeping, vomiting, not eating or drinking because of the pain it would cause, having anxiety attacks and hardly ever going out and eventually developed severe depression, but my mental health is a whole different story that i shan’t go into today.

Skip to when i was 19 when eventually my health got so severe i was weighing just under 5 stone and was kept on a drip as i had not eaten or drank anything (and kept it down) for 28 consecutive days. The doctors wanted to keep me in a special home as i was so malnourished they were worried if i were to go home i would die (not to be melodramatic or anything) but this lead to a whole new gastroenterologist taking my case, which i can honestly say is the best doctor i have had to date. He actually listened to us and didn’t try to deny the fact that we had been completely let down and shunned off as another IBS patient. Even though he didn’t think it would help at all he sent me for a colonoscopy, endoscopy and further tests to see if i suffered with Crohn’s Disease (Which every single person had said i definitely didn’t have because of my acute vomiting). I have had multiple people ask me about these tests on instagram and what’s the best way to approach them, all i can say is HAVE THE SEDATION! I had no sedation on one of them and it was the most horrendous experience. (A colonoscopy is a camera up the arse and an endoscopy is down the throat for those who didn’t know). But low and behold, the test showed positive for Crohn’s, So after 12 years i finally had my diagnosis. I went through various medications and treatments including immunosuppressants and not to mention steroids. Steroids worked an absolute treat for my Crohn’s, all of a sudden i was eating loads (at one point i was eating 5 meals a day) i wasn’t sleeping every second of the day and i had stopped being sick. But then came the bloatedness and ‘moon face’, i put on so much weight, i had reached a weight i never thought i would have and despite feeling great in my stomach i now felt shit about my appearance. When i say i looked like a sumo wrestler crossed with alvin the chipmunk, i’m not kidding, i was small and chubby and full of water retention, one doctor even called me ‘Shreks wife Princess Fiona when she’s the ogre’ i kid you not. It’s humorous but on christmas day i looked like the christmas turkey with a dress on, so after crying about how fat i felt i just got drunk and then never felt better (Until boxing day). After steroids i tried humira injections, which i had to give myself each week. The injections cost £750 per injection and are known as biologics, they are one of the most powerful drugs prescribed, but they don’t half fucking hurt. It got to the point i would have a tantrum like a toddler every time i had to inject myself so john (my boyfriend) ended up stabbing me in the leg to get it over with. But even all these powerful drugs have their own side effects, i could fill a whole other page with the side effects i endured but this post is already long enough as it is.

Right now i am off my injections (due to the severe side effects) and have gone down from 32 tablets a day to only 8. I’m not going to lie, everyday is a struggle, it feels like you are hungover every morning because the fatigue this disease causes is absolutely overwhelming, i am tired literally every second of every day. My sickness is under control and for those wondering, my toilet habits are currently normal, thanks for asking. Changes and flare ups can happen anytime and there is always a good and a bad day so now i just take everyday as it comes. I am now looking into having surgery and having part of my bowel removed and replaced with a bag, although i haven’t come to a conclusion yet so i’ll keep you guys updated on that. Despite all the bad, i have been able to meet so many amazing people through IBD and wellbeing courses i have done which we stay in touch and are there for eachother which is great.There are alot of other points and things that have happened throughout this ordeal but literally i’m even boring myself now. Like i said previously, if you managed to actually make it all the way to the end of this blog post thank you and i actually applaud you because i couldn’t even be arsed to read back through it myself.

I know a lot of the IBD community converse through instagram and have asked me questions about my illness personally but if you want to know anything i haven’t mentioned feel free to ask me either in this blog post or privately through my instagram dawson.xo .

Thank you.

Chloe

xxx

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14 thoughts on “Inflammatory Bowel Disease: My Story”

  1. I started to read before bed and could not not keep my eyes open, so this morning started again, once again Chloe well done on putting it all out there. I am positive it will help someone somewhere and it will help you. I only wish we were closer so we could have been more help. Love reading your blog keep it up, the detail you miss could be reserved for your book, the horrible truths of the fight against the bus to find the one doctor willing to put his neck out.
    Hope your OK xxxx

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  2. I did not find this boring in the slightest, the fact you have opened up and shared your terrible ordeal with the world is so amazing and brave. This could really help someone who has experienced the same symptoms as you. I found this very interesting and would 100% continue reading if there were more, you’re such an inspiration . Nature is so cruel and only the strongest of people could deal with such life changing obstacles xx

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  3. You’re wonderful! It’s so awesome than you’re so open and honest about this. I’m happy we found each other in this blogosphere! Can’t wait to see your next post and I hope you’re doing well just now xxx

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  4. Even though I basically knew all of this it was nice to read it in chronological order lmao, make sure you keep the blog up because it’s actually good!

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  5. Hi claire bear, just read your blog all the way to the end. It wasn’t boring at all, it made me chuckle in parts and a sad in others. I didn’t realise you suffered so much. I think you’re amazing to come through this and see the funny side. Lots of love Noah xxxx

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