I’ve had a good run! 5 years counting with no flares, very little pain and managed disease on low dosage of Azothioprine, diet and lifestyle but just a little blip in the master plan of conquering Crohns Disease… I’ve found myself back in hospital with a fistula and an abscess. Whilst visiting Matt on the Isle of Harris, a pain I’d had in my lower back got increasingly worse, I started feeling infected, I was hallucinating, throwing up, and the pain was becoming unbearable. Took myself off to the local A&E on Stornaway where my temperature had sky rocketed, I was irritable and in a lot of pain. The nurses and doctors were amazing; they had me assessed and prepped for surgery in less than 3 hours where they made an incision down my left bum cheek to drain the abscess and suture the fistula. The surgery went really well and I’m now in very little pain at all but it very quickly shot me back into a really dark and terrifying place that you can often find yourself falling into with a crohnic illness. It had me thinking about the long term; how is this going to effect my work? how is this going to impact all of the adventures I had planned this year? Will this happen again and is there anything I can do to stop it? Will this leave me incontinent in the future? Will I need an ileostomy bag again? There are to many questions swimming around in my head that, coupled with my body being filled with pain killers, I very quickly ended up in a full blown panic attack. But reading back over some previously blogs I’d written reassured me that I’ve been here before. I’ve been in that place that feels so completely isolated and lonely and as if no one has ever felt how you’re feeling and the thing that re-reading my blogs made me realise? It passes. It passes really quickly when you remember how wonderful the doctors and nurses are, or how quick your family and friends are to rally around you. It passes, and I think that’s the thing to remember to anyone reading these blogs…all of this is temporary. There will be respite from whatever pain you’re feeling or whatever dark place you’re stuck in. Allow all of the negative feelings to happen, share them with someone you trust and let them wash over you because it will get better, it might just take your body a little time. I’ve always found writing cathartic, and a lot of that in the past 5 years has been privately in a blog or a diary but some times it needs to be shared. I know some very close friends who have been stuck in this really shitty, dark place for a while now but believe me, it’s temporary. Crohn’s Disease doesn’t make you, and don’t you dare let it break you. You will be okay.
Eyes flicker, merging darkness with darkness. Entering a world of infinite possibilities you soften to the sound of your own heavy breathing. Chest rising, and falling, inflating your lungs with crisp, cold air. You feel your heart beat in your chest, hear it in your temples. It’s so quiet you can almost hear the blood flooding your veins. Your fingers begin to tingle as you re-position yourself and move them from underneath your head. Flexing each finger individually, smiling at the familiarity of your hand coming back to life. You wiggle your toes, stretching out fully before curving in on yourself, hugging your arms close to your chest for warmth. You exhale, counting sheep…1, 2, 3. You Inhale, role over, flex your toes, move your hair away from your eyes. You turn, inhale, exhale. Sleep is imminent, you wait patiently for it to engulf you entirely, send you into a world all your own, when your eyes suddenly dart open. A pain sears through you, landing in your back and sending your whole body rigid. Your breathing stops, your arms shoot to your stomach instinctively. You ride the tidal wave of pain, remembering the ritual you’d taught yourself. Count to 4, slowly and surely. 1, it radiates outward, circling your belly button, slithering and circling like a beast stalking its prey. 2, it darts inwards, as if wishing to remind you it can claim whichever part of you it wants. 3, it tightens around you, inside and out you feel yourself clench. Your breathing is sharp, your lungs failing to cope with the intensity. 4, it begins to ease off, your vice-like grip around your stomach loosens. You are catapulted back into reality, sleep a distant memory. A pain only lasting a few seconds, but the destruction is obvious. You can’t sleep, can you? Maybe you can. Surely this time you can. You flex your toes, roll over and feel your arm beginning to sleep, the familiar tingle darting up your arm. Your eyes close, you focus on your breathing. You roll over, you smile, you can feel the blood circling your head, reminding you everything is working. You breathe, in and then out, in and then out. You relax. Your body softens, you clutch yourself for warmth. You smile. Everything is okay, everything will be okay. You feel your eyes close and your mouth fall open, sleep is fast approaching. You turn, you stretch, you breathe.
So for a while now I’ve wanted to do something to raise money for Crohns Disease but I couldn’t decide what to do. At first I thought, what about a sponsored walk? Run? Swim? No. Bike ride? Nah. 12 miles of mud, ice baths, electrocution, monkey bars, 9 foot walls, and blood sweat and tears? Sure, why not. I figured if I was to ask people to sponsor me to do something, why not make it the most difficult challenge I could think of? Hence, Tough Mudder. My friend Robbie and I had been talking about it for a while whilst I was recovering in hospital, and it sounded like a fantastic idea. When it came to signing up, we asked around and it turned out quite a few people fancied it. There are around 14 of us doing it so far, included some of my best friends and my boyfriend. It looks brutal, and to say I’m nervous would be an understatement. But I wanted to do something that would completely push me to my limits, not just physically, but mentally and emotionally also. It’s not until August, so I have a while to prepare myself. Therefore, this blog will now become a page about my progress, my fitness, weight, and everything to show that it is possible to be on your death bed one year and running an S.A.S assault course the next. Wish me luck!
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!
Hello! what a long time it has been. I’m sorry for the lack of posts. A combination of a new job and no internet has meant that I’ve had neither the time nor the facilities to keep you all up dated. But thanks to Sky, we’re now up and running! Let the writing commence!
I’d like to dedicate this post to two people. First of all to my friend, Maddie.
I first met Maddie in August 2011. In Ward 2, Ninewell’s hospital. As I lay there, terrified and shaking waiting for a nurse to place my first ever venflon, Maddie reassured me. She told me what to expect, how it would feel, and not to worry. She was a friend when I needed it most, and calmed me down when I was panicking. Maddie had been struggling with Crohn’s Disease for a long time. She’d tried almost every drug there was, and the disease just wasn’t giving her a break. She recently made the huge decision to have her diseased colon removed and have an ileostomy bag formed. This post is a thank you to Maddie, for your constant support and now to show how proud I am of you. Your immense bravery and courage has astounded me. To have had such a difficult time with such an awful disease, to then take it like an absolute trooper is incredible, you are truly an inspiration.
I’d secondly like to dedicate this post to my boyfriend, Matthew. Today we have been together for five years, and what a five years it has been! He has been right by my side through the good and the bad. When I’ve been in such excruciating agony he was the first to rub my back, buy me paracetamol and hold me while I sobbed. When I was in to much pain to stand in the middle of a shopping centre, he’d sit on the floor with me. He’d fill my water bottle ever night and hold me until I fell asleep. When I was on a drip feed and told not to eat, he’s sneak me chocolate buttons and give me them while the nurse wasn’t looking. When it took me over five minutes to walk up five steps, he’d be standing right behind me, patiently waiting to congratulate my success when I reached the top. He has been my rock, my best friend, and I don’t think I would have survived without him right by my side. Matthew, I love you with all my heart, thank you for standing by me whilst I was a ghost of a human being.
As for my health at the moment, I’m doing great. It has been over a year since my first surgery and I’ve had very little problems. I have an appointment at the hospital next Tuesday to let me know if my Crohn’s is officially in remission, so I will let you know how that goes, although I have a feeling I’m going to get the answer I’m looking for! My scars have healed fantastically, I often forget they are there and smile when I see them in the mirror. I remember my Mum saying to me a year ago “One day, this will all be a memory, and you’ll look back and be thankful because it will remind you how much you’ve overcome and how strong you are.” At the time, I didn’t believe her. I couldn’t believe her. Everything was to raw and intense, I couldn’t imagine a day without pain because I’d been so accustomed to it being there. However, every day is that day now. I don’t take anything for granted because I’m lucky enough to understand how quickly it can all be taken away. How right she was.
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