Okay so very quick blog post here just to explain why I’m trying to convince everyone to sign a petition for me on change.Org.
I’d love to be able to say please claim your prize at the end and have confidence that you’d continue reading but I can’t say that so I will say is your life won’t be any worse after reading it. It more than likely wont be any better but it won’t be worse. So can I please just ask five minutes.
I was trying to write this on my Instagram post but then it got too long. I also tried to record it on my story so you wouldn’t have to read it. Nah man my voice is way too shaky for that. So then there is this.
Inflammatory bowel disease let me tell you is not the same as irritable bowel syndrome. One ends with disease. The other syndrome. Two very different things. However most people don’t get this and how I explain it when people tell me oh yeah Katie I’ve IBS too. I say nicely through gritted teeth honey an upset stomach after eating too much pizza isn’t going to hospitalise you for 3 months. And that is the difference in a simple format.
Inflammatory bowel disease doesn’t really get much attention. I naively thought the same when knowing of my mother with the disease. It’s hardly that bad. What is it like cramps and diarrohea. That’s not that bad. I admit I was completely uneducated to the whole thing and hope me being diagnosed wasn’t some higher power playing with my ignorance. Thing is though I’m still so uneducated. Why ? Because we don’t have resources or information or any thing really of any help.
Inflammatory bowel disease is a chronic life long illness. While you can go in remission you also can go out of remission back into acute flare up. IBD falls into a category of Crohns disease or ulcerative colitis. Now before I got sick I didn’t even bat an eyelid upon hearing these names.. Upset stomach bit of cramping no big deal right. Much bigger deal than I thought. So my last admission in hospital for this was in july .I spent four days in a&e and five days in surgical. The stay before that was in May. Before that it was March or April. Not much time in between well. Anyway long story short I was extremely sick and they suspected I had toxic megacolon. Don’t really know anything about it other than me refusing to have a colonscopy because I had one in May and the doctors telling me I’d no choice. Apparently my blood levels were really dangerous and if my colon matched my blood levels I would be transferred to st James hospital in Dublin immediately after. I could hear the urgency and concern in their voices but I honestly had no idea that what they suspected I had at that moment could have been a matter of life and death. Toxic megacolon is a complication that can arise with IBD. It’s urgently dangerous. Septis and shock accompy it. Thankfully I didn’t have it. But my health was bad enough for a full medical team to suspect a life or death situation. Obviously I’m glad it wasn’t what they thought. But when I left that hospital the team were very firm and strict in what they said to me.
Inflammatory bowel disease is a chronic and lifelong disease. It is not necessarily life threatening but it is incurable. However Katie the complications you came into us with can very likely be life threatening. So if you feel yourself getting a temperature you come straight back in. If you feel yourself getting dehydrated you come straight back in. If the pain starts again you come straight back in. He then looked at Ciara and said any sort of deterioration whatsoever you bring her straight back in. Strict orders eh.
I think he realised I wasn’t really taking this in and quite frankly thought the consultant was himself being a hypercondriact. He asked me did I know why he was being so strict on me. I said cause you want me to take my medication and you know deep down I’ve absolutely no intention (it’s a phobia not idiocy). I didn’t get the answer right. The answer was something on the lines of No Katie you came into us an extremely sick girl and we were very concerned about your health. The complications are very serious and while you can go home you’ll more than likely be back into us within two weeks. I laughed with nervousness of the fact nobody ever has faith in me that I will be fine. He said Katie more than likely you’ll be in and out of hospital for the next few months but if you come in again in the next two weeks I won’t be letting you go home this time. I told him I was bored in hospital and it was stressing me out. His answer Katie your physical health is my only priority right now. It’s paramount that you are okay and if that means keeping you here with us for as long as it takes that is what is going to happen. We can’t risk the dangers of last time.
So basically I’m twenty years of age being told that things are alot more serious than ever I want to admit. I knew my blood levels were dangerous. I knew my results showing up were causing them concern when there was no talk of going home. When I was barely told any information from one minute to the next only informed five minutes beforehand of my next procedure. I knew my bloods were dangerous when every morning I would wake to the surgeon taking another five bottles of blood. They take bloods regularly in A&E. When it’s everyday they are checking for results they are clearly not happy with. When they are satisfied it won’t be needed. It was needed and I went in without a fear of needles. After being being poked several times a day in several different places I know have a bit of uneasiness when someone mentions needles. Not sure if that’s due to dodgy doctors, weak veins or too much exposure to the whole experience.
Everyday was the same. It went on the lines of something like.. Drip in. Drip out. Steroids. Tablets for the side effects of the steroids. Injections for pain. Two hours later an IV of pain relief while I waited on my next injection for pain again. Antibiotics and then medication to counteract the infection I got from the antibiotics. CT scans. Then back down for more CT scans because they weren’t happy with the results. XRAYS and heart monitors. Then tablets to bring down my heart rate because of what was showing up on the heart monitors. Drip back in again. Prep to drink before surgery. Tea and toast to eat after surgery. Get to bed at 1am after last dose of medications through my drip. Woken up just before six for my first dose of medications through drip. Woke up every two hours to check vital signs. Every hour to check temperature. Kept awake while the doctor on call advises them on how to bring down my temperature. Medication to sweat out your fever than more blankets when your temperature has significantly dropped. Chicken and mash everyday because it’s the only thing your stomach is really able for while they decide whether it’s bad enough to commence a pure liquid diet though an NG tube or nutrional milkshakes packed with vitamins and minerals that your body hasn’t been able to absorb for years. To perform surgery or not preform surgery because they feel you are too young and it will bring greater complications so they try postpone it fearing that one of the days they will have to preform emergency surgery anyway.
When I realised how sick I was and how sick I potentially could be I went into a bit of a depression. 32 tablets a day. 10 steroids a day and fear of gaining weight. 16 yellow tablets that make me nauseous but the pain bearable. Nauseous to the point I can’t really eat drink or smoke. The doctor told me I had to quit smoking. I think the doctor forgot to realise my mental health has always been the make or break factor in my life. The stress of all this with out ciggs just ain’t going to work. So that was it 32 tablets a day for this disease. And 10 tablets a day for my mental health. It was too much. Having to leave hospital knowing suddenly everything was on hold. Hospital was going to be something on and off for the next foreseeable. Medication was a everyday for the rest of your life thing. Pain was expected and further deterioration seemed just around the corner. Exercise seemed impossible and food was crippling. The worst part was my thoughts around this. I’d literally just got myself out of hospital after spending 4 years in there struggling with my mind. I’d worked my ass of to get out and now I was going to be spending a lot of time in hospital for my physical health. Irrationally pissed at my mother for fucking up my life through her idiocy at being a first hand mother all the way down to handing me her shitty self inflicted genes. The injust that things had been so difficult. So bloody difficult and now to get ten times harder. Having to bring yogurts with you in the car and to restaurants just to swallow shitty medication and walk normally to the car. Not bent over in pain. It was all shit. And I was stressed to my eyeballs. So I spent two weeks in bed crying and sobbing what could be on every hour. It wasn’t about the hardship to come. It was not knowing. Not having any idea on what all this really was. I’d been told the bare minimum but on the other hand I had the fear drilled into me of severe. Chronic. Untreatable. Very serious. Dangerous. Life threatening. Complications. Very sick girl.
And I was sent home with not even a shitty hospital leaflet to help superfically fill me in. No notes. No education. No resources. No support. Just the fear factor of your latest horror and a head on a spin search for answers. Google tells me there aren’t much answers. The word stress flashes on the screen in every article, blog post or medical journal. Stress is a huge factor in bringing on these detoirations. That fucked me up more. We joke from time to time in my inner circle about my stressors. My stressors aren’t assignments. But safety. Court cases. Criminal charges. Protection. Protocol. The care system. Life or death. Violence and abuse. Jail and walking free. My stressors have never been anything anyone my age could handle and it doesn’t get easier. It’s actually getting more difficult. A new year brings a new age. 18 your an adult. 19 you should have sense. 20 you should be taking responsibility. 25 why didnt you do anything katie ? Every year I face a different responsibility. And every year I feel like I’m handed the codes of a nuclear weapon ready for mass destruction. And I wonder is that putting it lightly. Knowing my stress levels are yet to drop and shock everyone. Knowing my mind and body are completely psychosomatic and knowing the end of the tunnel was quite the maraton away the hopeless resentment just kept on building. Maybe my outlook is entirely pessimistic or maybe there was a better way of easing me into all of this. A support network. For crying out loud even a website with answers or hope. Education or resources. There is many a factor that will contribute but you either get sick or you don’t. You don’t have much of a say either way.
There is very few nurses in Ireland that are qualified in bowel diseases. There is a frightening figure of how little consultants we have specialised in this. There is waiting lists of two years just to get an appointment with the consultants who have some idea but still it’s very unknown area. And to know you have to wait two years in pain or in and out of hospital waiting on a specialist is shocking. This has been my expiernce of inflammatory bowel disease in the last 6 months and it’s been frustrating, frightening and unanswered. Many people suffering may have it under control but I can only imagine how many people have been as sick as me or who have been far sicker and crippled day to day barely getting through it all.
This doesn’t just effect the person with the diagnosis. It puts your whole life on hold. It ruins many an experience and cancels plan after plan. Birthdays are spent running to the bathroom or leaving early. Occasions are spent tip toeing around can I go or will I go. Can I make a two hour car journey and can I afford to keep using the excuse without any understanding or knowledge available for those around me.
Do you want to watch your younger sister afraid to eat because of the pain that follows or do you want to sit with your girlfriend in bed while she cries with fever and frustration. Should you visit your mother or father every day in hospital while they spend 3 months preparing for surgery or should you fear 10 days in intensive care after the surgery like they will have too ?
I know it might not affect you directly but it could really affect someone you love. And it could be you at some stage. Some times we find it hard to view something important if it doesn’t directly effect us. I’m like that too at times. We’ve enough shite to deal with besides worrying about something that has nothing to do with us. I get that. But I also think if you managed to get to the end of this article you’ve done the hard part so please I ask you just take two minutes and sign your name on a really valuable petition. It’ll take two minutes but them two minutes could really improve someone’s health and life. So that’s all I ask. And thank you for making to the end of one of my many book essay type blogs.
Lots of love