One thing I know, having lived with Crohn’s disease (diagnosed or not) is that you can’t expect everyone to ‘get’ it. The same can be said for any chronic illness. Some will be incredibly supportive; they will call or text, or visit you in hospital. You will catch up with them and feel genuine kindness and empathy. Some will show compassion and a want to understand. They will offer support and a listening ear, even if it’s once every couple of months. These interactions are just as important. Don’t think that because you haven’t spoken to them in a while that it means any less, because they get it, they understand what you are going through and they care. Others; not so much. You will meet the ignorant, the rude and the petty. These are the individuals that have the ability to make you feel isolated and wrong for having your illness. They will question your illness. They will question your symptoms. They will question your actions. They will nod sweetly and wish you well, all whilst mentally preparing their version of events. Forget them. You will come across them your entire life but all you need to remember; is to forget them. Trying to make them understand won’t ever work because they’ve already made their mind up. Trying to get them to listen won’t work because they’re deaf to anything other than shallow socialisation. They don’t want to know about you or your problems, unless it benefits them in some way and that’s fine. Just forget them. You have you to focus on. Right now, surround yourself with those people we talked about at the beginning. Surround yourself with the people that believe you without question, that listen without judgement and that empathise without sympathy. You are doing great and for those that don’t see it; forget them.
Crohn’s Disease is a lot like a game of Call of Duty. You repeatedly get knocked down, hurt, wounded and bleeding, but it’s all about re-spawning and getting your revenge that counts. When Crohn’s comes running at you with its AK-47 it’s all about dodging it’s relentless rain of bullets, finding your feet and fighting back.
Recently, a few days of irregular bleeding sent my mind into absolute panic mode, so of course I took myself right down to the GP. I had my bloods taken, blood pressure measured and a good old rectal examination. It feels as though I could go to the doctors with a sore head and they’d still need to utter the all-to-familiar words “trousers down. Knee’s up.” All came back clear, which was not the answer I was looking for. I’m now being sent for further investigations which basically means I get to look forward to a colonoscopy! A little off topic here, but if you’re reading this and have regular ‘back passage examinations’ try a little game I like to play. The aim is to make the situation as awkward as humanly possible. For example: a junior doctor once approached me and said “I’ll need to give you a rectal examination” to which I replied ” the least you could do is buy me a drink before asking for something like that!” It makes things a little less awkward for you and a whole lot more awkward for them. Hilarity rating = 10/10. But yes, back to Crohn’s. So I’m being sent for a colonoscopy which I can’t say I’m thrilled about. But I think the worst thing is what it’s doing to my head. Every time I get a sore stomach I wonder if/where the inflammation is going to pop up this time, if my joints are sore I immediately put it down to Crohn’s, or if I can’t sleep I wonder if it’s because of the stress I’m putting myself under by worrying about this disease. Some days it all gets a little too much and I feel like I just want to sleep all day and forget that this is part of me. But I’ve realised this isn’t healthy and it doesn’t help. The only way to ensure my body is at its physical and mental peak is to train hard, eat healthy, sleep well and focus on all the good that is going on around me. So I’m throwing myself into training for Tough Mudder, working extra hours at Markies and eating as best as my body will allow. I need to remind myself that it’s pretty much certain that I’ll have another flare up at some point in my life, but I’m young, all I can do at the moment is make sure I’m happy and healthy. If I have a relapse, then there is absolutely nothing I can do. It’s been extremely difficult excepting that fact, but I’m slowly getting there. I’ve got my camouflage on and I’m ready for war. Give me your best shot Crohn’s…you asshole.
I had my hospital appointment last Tuesday and the results were as I expected. My doctor wished to schedule a colonoscopy to check for any inflammation, or any signs of the Crohns coming back. I had preempted this and decided I’d ask to avoid the colonoscopy. Don’t get me wrong, I understand the importance of a thorough investigation but CT and MRI scans can only see so far, as can a barium meal. A scope gets directly to where the docs want to look. However, after spending a year researching this disease, I understood that you must look after your bowel. You’re advised against spicy foods, alcohol, high dairy intake, excessive fibre, fried foods, high sugar intake; basically EVERYTHING TASTY IN THE WHOLE ENTIRE WORLD EVER! (more on this later) I’d realised you need to treat your insides very gently, and I believed that a colonoscopy, although I know its safe, was something that if i didn’t desperately need, I wasn’t going to have. It takes two days out of your week, you have to drink what I can only describe as liquid hell, and you’re left so full of air that you could cart Felix Baumgartner up into space yourself. So, Dr Groom and I decided I was to get my blood taken and if everything was normal I wouldn’t have the colonoscopy for 6 months. If anything was out of the ordinary, it was a lovely early Christmas present for me back at Ninewells.
So, a week later I sat eagerly awaiting the doctor calling me with my blood results. They were fine. Which I had expected. My vitamin B12 levels were okay, inflammatory markers were super duper, everything looked good. Which meant no colonoscopy, WOOHOO! After getting these results it got me thinking, I haven’t actually written a post to give you an idea of what to expect after a reversal. I’d spoken to a few people about it, but neglected my wonderful followers on wordpress. So here goes; My experience of life after an ileostomy reversal.
First of all, it was painful. hospital was painful, going for a poo for the first time was painful, realising I was jobless again, out of education and house bound was painful. Emotionally and physically draining. I knew what to expect when in hospital which was easier than the first time round, venflons were a doddle. Catheters? no problem! An endless amount of painkillers? If I must. As you know, my epidural failed, which made my recover feel twice as long, but the real challenge was once I was home. No doctors, no nurses, just my family and I. They’d removed my terminal ilium which acts as a gate in your bowel, stopping food and allowing the nutrients and salts to be absorbed. As you can imagine, not having this gate meant food literally ran straight through me. I’d heard horror stories that people end up going to the loo up to 50 times a day. To begin with the made me incredibly nervous, I always needed to know where the closest toilet was, how long it would take me to get there, and if they’re were private toilets or the horrible public free for all when you have to poo knowing someone is silently judging you in the next cubicle, giggling at every fart, anticipating the splash landing, staring into your soul as you wash your hands afterwards. But I was pleasantly surprised to find I was only using the loo three to four times a day. I did realise, however, that when I needed the toilet, I only get a few minutes warning and then I HAVE to go. This is one of my biggest let downs after my reversal. I expected everything to be normal, but this urgency is persistent. I’m starting a new drug next week which is hopefully going to help, so I shall keep you posted.
Another thing that has changed after my reversal is my eating habits. I find certain foods don’t sit very well, either making me feel sick, or sending me to the toilet even more frequently than usual. First of all, sweetcorn. My beloved sweetcorn. I absolutely, positively adore sweetcorn. If I could I’d eat it for every meal, every day. But I find its high fibre content makes my stomach bloat and ups my toilet count to around 6 times a day. I’ve found this with most fruits and vegetables. Apples, grapes and salad being among the worst. To combat this, I drink a 250ml glass of Innocent Smoothie every morning, which is the equivalent to two of your five a day. I also eat soups, or add peppers and carrots to meals. I think at the moment I’d struggle to eat a very high fibre diet, as I just couldn’t cope with the urgency to go to the loo.
What I’ve also found is I am much more aware of how different foods effect my body. If I’m lacking in anything, I get lethargic, crabby and sleepy. Which I suppose in a way is a great thing, because it makes me eat healthier.
I think one of the hardest things once you’ve had your reversal is coming to terms with it psychologically. Every stomach cramp leaves you wondering whats going on, you panic, wondering when or if the Crohns will come back, how it will effect you in later life. Will it affect your fertility? Will you need more surgery? Will you need a stoma again? It’s always on your mind, and probably always will be. But according to my blood results, everything is fine! So for now, my mind is at ease. We’ll see how I am in six months time!
Overall, life after a reversal is as it was before hand. I have a new found respect for my body, I eat healthier, I go to the toilet more often, and I’m thankful every day that medicine and surgery has come as far as it has.
If anyone has any questions about stoma surgery or reversal surgery, please feel free to ask!
Two men looked out from prison bars. One saw mud, the other saw stars.
A year ago today I was taken to Ninewells hospital in an ambulance by two wonderful paramedics. I was met by a fantastic team of nurses who worked quickly, efficiently and professionally. They couldn’t find any of my veins as my blood pressure was too low, my heart rate too high, and I was in two much pain. I was experiencing referred pain in my shoulder tips, repeatedly saying “it hurts up here, it hurts up here!” whilst clutching my shoulders. I was taken for x-rays, I heard the words “nil by mouth” being thrown around and I remember the look of absolute terror on my poor Mums face, she was petrified. I remember a wash of blue scrubs as more and more nurses surrounded me, the occasional green scrub peeking in, standing calmly at the doorway: assessing the situation. I remember the morphine, and then slipping in and out of consciousness. I remember signing forms, being told I needed surgery, there would be a possibility of a bag. I remember phoning Matthew and wondering if it would be the last time I’d speak to him, the last time I’d hear his beautiful voice, I remember the tears, nothing hurt anymore when the fear took over. I remember thinking if I would be able to look down on my family if I did die, if I could make sure they were all okay, I remember questioning my atheism, my distrust in religion, was I really about to find out if it were all true or not? I remember praying, to every and any God there were out there: save me. I remember my parents face through the surgical doors, I felt tiny, as though I were shrinking into the bed, it wasn’t happening to me, it couldn’t be happening to me, surely? I remember the tubes, the beeping, the injections, the soft scent of vanilla as they placed the mask over my face. One last look before the cool liquid penetrated my veins, swimming around my body, blackening my senses and drowning out reality, I remember choking on my tears, then darkness.
I woke up. Awake. I was alive. It hadn’t happened to me though, it was a nightmare, right? I tenderly touched my stomach, it felt hard, wrapped in bandages. I felt my gagging reflexes respond as the tube draining my stomach content hit against the back of my throat, irritating the inside of my nose. I remember the main line, feeding drugs under my rib cage and straight to my heart. My beating heart. The monitor lines pressed onto my chest were itchy and I couldn’t verbalise my annoyance. Then I slept. I slept a lot.
I awoke in The High Dependency Unit, confused, sore and upset. I couldn’t do anything myself. A tube fed me, a different tube let me urinate, a nurse bathed me, drugs kept me sedated. I lay there for what felt like months. I remember sleeping again, there was a lot of sleeping.
Then I remember my Dads hand gripping mine as I had my wound changed, I remember looking at my stomach and feeling repulsed by what I saw, disgusted and terrified. I didn’t look again, I just cried, not caring who heard my sobs. I remember my first steps, like a child, just to the window and back. I remember my first meal; clear soup and jelly, it was delicious. I remember learning and trying to understand what had happened to my body. I remember my wonderful surgeons, my doctors, my heroes.
Then months of pain. Three more surgeries, countless journeys to the hospital, phone calls to NHS 24, A&E, hundreds of tablets, sleepless nights. I remember a lot. Sometimes, too much. Other times I wish I could forget it all ever happened, forget I have this illness for life. But then I remember how grateful I am. Everything that has happened has taught me a new lesson. I may not have loved every minute, but I wouldn’t change it for the world.
Here’s to the many, many years to come!
So my boyfriend, two of my friends and I have decided to go to Turkey for a weeks holiday. We leave on Tuesday, “how fantastic!” you say? Well, first there are a few points I, and probably every other IBD sufferer must consider:
1. What if the authentic Turkish food sets my bowel into spasm?
2. I can’t drink the Turkish water, it may have chemicals in it. What if my delicate stomach decides to play up if I drink some? Wash my salad leaves in it? Have a cup of tea? Open my mouth during a shower (see Charlotte during Sex and The City 2)
3. What if I need the loo quickly? Many loos in Turkey are apparently a simple hole in the ground with no toilet paper…IBD hell.
I also must consider that I struggle with dehydration as my ilium has been removed. (the part of the bowel that absorbs salts and nutrients) add this to the fact that last week in Turkey the temperature was reaching 40 degrees and I must consider that we might have a problem. I drink roughly four litres of water here in Scotland every day, where 101% of the times it is raining, what am I going to be like with that big old yellow thing in the sky beaming down on me?
If I need a hospital, will they understand English? Do they have have the right things to treat a flareup? Will it by hygienic? Will they give me water!?!?!? Oh dear lord. How do you say “bowel” in Turkish?!
Not to mention my health insurance, which is, of course, more expensive as I have a chronic illness, will it be okay? Will they rob me in my naive state?
Will my scar be okay in the sun? Will it pop open like a scene from Alien? ahhhhhhh
Breathe Roisin, breathe.
And as I lay here in the foetal position, rocking back and forth, I realise I’ll be in Turkey, most likely with a cocktail in hand, in the sun, in a gorgeous White dress my Mum bought me. That thought calms my mind a little, until I take a sip and my chilled bottled Highland Spring water and slowly I feel the panic rising again…
Fear [feer] noun – a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid.
To feel fear, I believe, is to feel alive. When one is faced with a situation of flight or flight, what is the immediate response? To feel that surge of adrenaline coursing through your veins, the throb of your blood pulsating at your temples, the cold sweat beginning to slide down your body, gravity pulling it downward. Do I run? Do I hide? Fear is an unrequited love, smothering you with it’s greasy hands. Raping your senses. You can smell fear, you can hear it ringing in your ears, taste it on your tongue, but most of all, you can feel it. In that one moment, you realise your wildest nightmares don’t compare. The little things no longer matter, the anger you felt when you couldn’t find your keys, or the frustration at hearing something someone had said about you become irrelevant. In this moment you and your instincts run hand in hand. Your body will do everything for you; breathe, bleed, cry. You’ll have no control.
When I really think, I fear many things. I fear that Crohn’s Disease will come back, I fear it comes back more determined and does it’s job properly next time. I fear it spreads to the whole of my digestive system. I wonder how many times in my life I’ll be admitted to hospital. I fear for my future children, will they suffer with Crohn’s? Or maybe the Crohn’s gets my reproductive system and I can’t have those children? I will always have those fears, but that’s all they are just now, and I hope that’s all they’ll stay. Tucked away in a not too far corner of my mind.
Last week was a terribly sad week. Alison Atkins, a beautiful ambassador for IBD and ostomy bags passed away. She had an extremely hard battle with IBD and everyone is devastated to hear she had passed away. At only 16 she had a very tough life battling bowel disease. She always had a smile on her face, and helped many people come to terms with having an ostomy bag. She will never be forgotten. Rest in Peace Alison. x
As she trod carefully, avoiding all obstacles in her path; the sudden realisation of the choice she was about to make hit her like an empty ship abandoned at sea, crashing upon her with its almighty strength. Holding herself tight, she struggled to breathe, the air abandoning her lungs; she was suffocating. Tears began to pool in the corners of those blue, blue eyes, wide with fear. Suddenly she felt young again, naive and terrified, she needed to be held. Clutched safely to someone’s chest, she longed to hear the rhythmic beat of their heart, nothing could slow hers as it pounded in her ears, forcing her skull to pulsate to accommodate the blood gushing through her veins. She felt it thud deep in her stomach, her arms instinctively wrapped around herself, clutched protectively around her small, fragile frame. The hair on the back of her neck stood tall, stalling the sweat slithering slowly down the curve in her neck. She was drowning, consumed with fear. Which way should she go? Both directions were painfully dark, rigged with everything she had ever avoided, one was undoubtably going to end her, crush her in an agonisingly slow manner. Thieving the light from her eyes, the flesh from her bones. Feeding forever on her strength, her sanity, until one day her mind and her beating heart seize. Frozen in a realm of mirrored walls. unable to escape she’d sit, glaring at who she had become. Forever haunted by the fear of what could be. This diseased ridden beast had torn through her like an animal possessed, robbed her of her adulthood, memories tainted with it’s constant torment. She was pissed. Furious that things had come this far. She glanced nervously down the remaining path, her heart drilling through her chest. It was dark, uncertain and she knew to take that one fatal step would mean catapulting herself into the unknown. Somehow she knew it would be painful, she understood that she was going to suffer immensely. This thought, although terrifying, calmed her mind. Something was urging her to move, to make a choice. Silencing her mind she released her body, unaware she had been gripping herself so tightly. Her pulse was slowing, reassuring her that she still had some control over her own body. Tentatively she tested her legs. Yes, she was still in control. Flexing her fingers, she moved them through the cool air. Closing her eyes she took one final breath and slowly released her feet from their firm stance, she took a step and smiled. This was it, the journey begins.
– R. x