My Name is Gem and I've had Crohn's disease for 12 years
Go back them 12 years and I felt so alone, scared, frightened. I had a condition id never heard of. Internet was not as rife back then, and I knew no one who has Crohn’s disease, brief looking for more information on it ‘chronic’ ‘disease’ ‘bleeding’ ‘surgery’ we’re just a few words spinning around in my head. Wow will I be okay, what will happen now. More importantly when will this 20-30 toilet trips stop!
I was diagnosed aged 25 and for years before that I’d been a keen squash player, winning various competitions and travelling to various countries to compete. I was always fit and healthy and I think I hadn’t seen a Dr for about 5 years prior to my Crohn’s. I had a good job and was working all hours godsend between two jobs.
Fast forward a few years and many, many medication tried, infusions, steroids galore. So many tests I’d had over the years to, to many hospital stays to mention.
Over the years I met fellow IBD warriors who were local and I was surprised how many people had Crohn’s disease or ulcerative colitis. But as little was talked about it then, I didn’t know! I joined the charity Crohn’s & Colitis UK and this helped me so much to. Fast forward a few more years and I am co founder of a global awareness campaign #GetYourBellyOut that has raised over £65,000 for Crohn’s & Colitis UK and help run a group on Facebook which has helped me no end. I know I have gained many friendship in the IBD community , some friendship so strong I’m proud to call them family. Without these people I dread to think what dark place I would be in today. I’ve also had counselling and this has helped me on my journey to.
Now that’s a few years suffering in a nutshell, fast forward to 2016, Monday 11th April 2016, I noticed today I was passing some blood from the bowel, enough to notice but not enough to write home about, I’ll keep an eye on it and see how it goes may of over done things at the weekend (we had #GetYourBellyOut 2nd Birthday party in Birmingham) . The days passed and the bleeding continued and each day it was getting worse in denial I kept saying it wasn’t, deep down I knew it was. Again I’ve no idea why I do this but I kept it all to myself , dad had a stroke a few years ago and lost his speech and suffers with heart problems a terrible time for us all, maybe this is my reason To ‘protect’ my parents. What’s the saying a problem shared is a problem halved. I’d also had micro fracture surgery on my knee in March 2016 so was still on crutches recovering from this surgery. So we all had enough on our plate.
By Thursday of that week the bleeding was so bad I told my mum what was occurring. I think she had an incline, I mean I was living in the bathroom. Friday I called my Gp surgery up and explained the situation and could I leave a stool sample but needed the forms, this was done thankfully but had to wait the results which would take 3-4 days being a Friday it meant they’d be back next week!
The weekend came and I was getting worse I was living in the bath as I had terrible pains and backache and felt ‘dirty’ from all the loo trips so the bath was my comfort zone and I was close To the toilet. That weekend I stood up off the toilet and was leaking blood from the bowel on The bathroom floor, I had to get mum to clean it due to the knee, mums face when she saw it said it all, a few stern words off mum made me realise how poorly I was. I visited the dr on the Tuesday who examined me and looked at the pictures I took of the blood filled toilet bowel. and said she would contact my consultant asap, I also had bloods took, the following Wednesday I saw my consultant – again another examination and he said it could be a fissure I showed him the blood in the toilet pictures and he said he would arrange for me to have the camera test. That evening I passed so much blood I felt rotten and went straight to bed to the loo to bed to loo the whole night, while on crutches, I was drained and was fed up of it all.
Thursday afternoon I was asleep and mum comes in waking me – it’s the endoscopy unit for you Gem, in a daze I answered and they wanted me to go in for 8:30am the next day! Shocked at how quick the appointment was, was an understatement. Friday arrives and I spent more time in the toilet than I did in the endoscopy unit. I have my sigmoidoscopy and chose no sedation, brave or stupid but on my mind as I was passing so much blood from the bowel I was worried of any accidents after and if I was drowsy I wouldn’t make the bathroom, the test itself is bad enough let alone any accidents, the test showed I was flaring although the staffs faces said how extent it was.
After a few hours at the hospital, I was allowed home and the IBD nurse and my consultant would call me with a plan of action, as I’d recently had some big surgery on my knee steroids were a no go but due to the extent of my disease I needed steroids so my consultant had to talk to my orthopaedic surgeon to weigh out the pros and cons of steroids. To me , just give me the steroids for some relief I was prepared to try anything to prevent the blood Loss and the 30-40 toilet trips a day. I get home and my consultant calls for me to go to our minor injuries department for an X Ray and pick up some medication, so off I go and have these done and get my meds. My consultant kept in constant contact with me that day and had no joy getting in touch with the orthopaedic surgeon so we’d have to wait till Tuesday (was bank holiday coming up).
The weekend passed with a blur I was so weak and in agony, I couldn’t curl in a ball due to my knee , I spent my time in the bathroom in the bath, toilet, bath toilet I was so weak I could hardly walk and everything was an effort, I almost gave In and got medical help but my stubborn side said ‘I’ll be okay!’ How wrong was I. By the bank holiday Monday 2nd may I was in such a mess and at 5am after a bath well 22 baths as the warm water helped the pain and after having an accident in the bath, on the floor and toilet I woke mum up and said I need extra help I couldn’t carry on so we called the out of hours GP for advice. They arranged an appointment to see the GP at the hospital.
Mum got me dressed and we packed the bag knowing how poorly I felt I knew I’d be kept it. Mum dropped me at the door and she went to park the car, I checked in and went straight to the toilet I heard my name being called but was stuck in the bathroom and mum was parking up. I eventually came out and was so weak each step on my crutches were an effort, I made it to the room and zonked out on the chair. The dr took one look and knew how poorly I was my heart rate was through the roof I was dehydrated, looked grey, was sweating and couldn’t even get on to the examination bed. Even talking was an effort and those who know me, know I have no problem talking normally!! I was being admitted but no beds to be had in the hospital. As the hospital was full and I was pretty poorly at this stage and my heart rate 189 BPM I was took through to A&E to be monitored. Here I spent 2 nights on a black hospital trolley in a cubicle hooked up to IV fluids and heart monitor, my worst nightmare as I couldn’t run free for the toilet as I was wired up. I had to call the nurse and we know how busy they can be, I became that desperate I unhooked myself from the heart monitor and muted my IV drip and took it with me to the bathroom with one crutch in hand, not ideal but needs must. Then went back and hooked myself back up, I explained to the nurses and they fully understood. Then came the sickness poor mum couldn’t get me enough bowls quick enough. I saw that many Drs and was to weak to explain things so just showed them my report from my sigmoidoscopy the rest they could see from just looking at me. I was waiting for a bed and was down as urgent, mum left late that night and as the hospital is being refurbished we had no signal but my phone was the last thing on my mind. All night someone checked on me as my temperature was spiking. But some good news I could start IV steroids as my current health with my bowel was in such a state more so than my knee so it was agreed to start the steroids. I do believe a gastro consultant came to see me but I was stuck in the toilet for to long so they left, they asked the nurse for a stool sample from me, so I gave one, to be told by a shocked nurse ‘no stool to examine just blood so we can’t send it off!’
Late Tuesday afternoon I get wheeled off to a ward, finally a proper bed it felt so good to be on a bed rather than a trolley, here I get assessed again to decide what ward I need to go on, although we know gastro or surgery they needed to decided. Here we have 5 patients to a bay a toilet and a nurses station in your bay. 5 people needing one loo….. Here I saw a lovely gastro consultant who sat down and explained everything with me, he explained about the drug vedolizumab & a brief chat about surgery, we agreed I’d try the drug. He also wanted to book me in for the camera down my throat.
I finally get a bed on a Gastro ward and see a nurse who I knew from a previous hospital, we chatted and I felt more relaxed after the chat. Here I was back and forth to the shared bathroom, one patient even asked me if I was contagious due to the amount of toilet trips. I’d often wake up in a confused state, I blame the medication! Here I had the infusion vedolizumab and fair play although she wasn’t my dedicated nurse but the nurse I knew she administered it to me and sat with me the whole half hour of infusion to monitor me and after, as i had a reaction previously to Infliximab. I had the infusion and all was good regarding the infusion, until the next morning I woke to be told by the nurse you have chicken pox! What followed was some banter and laughter with the nurses and fellow patients! Much needed laughter to.
We had a laugh and my drip stand had a danger sign on it! A dr was called and I didn’t actually have chicken pox but it was a reaction to the infusion! Next A day later it was Sunday and I felt so poorly I remember using my hospital table to rest my head on as I was in so much pain – a Dr was called yet again and they stuck a needle into my main artery on my wrist to check my blood gases. Results back and they ‘think’ I have a blood clot on my lung and needed a large does of Clexane to try disperse it. Baring in mind my whole hospital stay I’d refused Clexane previously as I was bleeding so badly from the bowel I was concerned this would make matters even worse and I told the Drs and nurses this! Of course they couldn’t agree or disagree – it was my choice a risky choice but no way could I of coped if I started bleeding even more from the bowel. I stupidly declined the clexane until I had the CT scan to determine 100% I remember getting up to go to the bathroom again and blood was everywhere I had no choice but to call the nurse as i was so lightheaded from the loss and no food, no way could I have got to the floor to clear this up and my bad knee to. Embarrassment crossed me and I called a nurse to the bathroom. She was very professional and it was noted in my notes the loss and cleared up.
I was then took for this CT scan to look for a blood clot, I remember being in the lift and needing the toilet it was horrendous and the porter was kindly talking to me and asking about my unusual tattoo baring in mind I don’t have one tattoo! He meant the dots on my arm from when I came out in a rash and they were monitoring me!
Toilet done and CT scan done, result NO blood clot. I was after this moved to a side ward with my own toilet it was heaven having had to share a toilet for the past week. Bed to Toilet was now easier than ever but more importantly it was closer . But sadly I was getting weaker and weaker by the day. Next thing I knew a surgeon came in shook my hand and said its surgery for you, what followed was a blur but deep down I knew we’d exhausted all avenues of treatment and surgery was the only option left, any questions – ‘yes dr can you take me now I can’t cope any longer’. I’d be took down to theatre the following morning and a stoma nurse would come see me and mark me up. I remember asking the nurse to shut the blinds in my en suite room and Open all the windows wide and I just sprawled on the bed in a world of blur. I didn’t even tell my parents until hours later. When they came that night with my best friend they didn’t recognise me, I can honestly say I’ve never in my life felt so poorly and had no fight me. I was to weak to even speak at this point.
I was in the toilet again and the door knocked, it was the stoma nurse, I won’t be a minute I shouted, more like 20 minutes! I almost crawled out of the bathroom to the bed, your bad aren’t you Gemma. She marked me up , gave me a booklet and her talking was going in one ear and out the other. Any questions – no just get it over and done with please.
Nil by mouth, that’s a joke I’d been this for weeks. I spent the night clock watching and bathroom attending. I was due to fly to Greece the day of surgery a holiday I had bought for me for my birthday, first all inclusive holiday and first holiday abroad for years. I was so looking forward to this break. Morning came a sea of Drs drifted in and out, anaesthetist, collectol surgeon , pharmacist , nurses the lot. Surgeon said they were waiting to hear if a bed was available on intensive care and it was between me & another lady having surgery, sprawled on my bed withered in pain I begged the surgeon to please take me – I had run out of fight & feared if I’d had to wait any longer how my mental state would be and my physical state. He went outside and came back in and shook my hand and said we will be operating on you in the next hour!
Nerves should hit now…..I was that poorly i had past this stage, I had the cleaner who chatted to me earlier wishing me well, nurses, my phone was going off but I was in a world of my own. Still with the blinds shut and my door closed, windows wide open as I was sweating to the extent the staff were commenting on how cold they were on entering! That Knock on the door ‘my carriage’ awaited me! I was helped into the hospital gown and helped on To the theatre bed. Going through the ward people were saying Good Luck and I’ve no idea if it was the medication or how ill I was but I sensed no fear at all, baring in mind I had big knee surgery in March and they almost had to pin me down to get me to theatre! On my way to theatre I remember staring at the ceiling the hospital is having some major work done and I could see all the silver pipes in the ceiling, next sign I saw was THEATRE, here I was greeted by so many staff but again this didn’t faze me one bit. The surgeon came to check on me, anaesthetist explained again I’d have a needle put into my main artery in my neck for pain relief and one in my main artery in my wrist. The team gathered , one lovely nurse was chatting away to me but I was to weak to even answer, oxygen mask on and that was that, best 8 hour ‘sleep’ I’d had in weeks was during my surgery!
I believe unbeknown to me mum was at the hospital waiting for me to come out of theatre and go into Intensive Care, here I was drugged up it was a strange experience apparently I’d asked the nurse to go to the fish shop at 3am to get me a ice lolly! See I had oral thrush from the surgery so my throat was clearly sore I recall none of This. Mum was with me again I don’t recall this. I spent 2 days here while they adjusted my medication, I started hallucinating when they gave me the ketamine and something else the clock was jumping on the wall. I had a PCA machine to click for pain relief, I’ll be honest the pain was on another level. I’d been cut down the middle and all my colon had been removed and I had a Stoma. I had drips everywhere, one in my neck, wrist, arm, catheter, stoma and pouch, PCA and that many machines all around me, I had a nurse stay at the end of my bed 24/7 to monitor everything as I was in ITU.
Finally I’m stable enough to be moved to a ward, my recovery now begins and I get to meet my new stoma named ‘Snowdon’ trust me i had called it many of name already! Second day on the ward and they got me up to walk around the ward with a member of staff, drugged up, major surgery and feeling as weak as a kitten when all I wanted was to sleep, I got up and did a little walk, half way back I didn’t feel at all well and went all lightheaded. Next thing I knew I woke up in bed attached to a blood drip, my haemoglobin levels had dropped so I needed 2 blood transfusions. My reaction wasn’t great to this and I asked the nurses many questions, ‘who’s blood is it, is it safe, do I know the people’ fear and the medication I blame!
Family & friends came and visited over the coming days but I don’t recall much of this or the days that followed, what I write now is what’s been relayed to me by nursing staff, patients and friends and family.
I became violently sick, not your normal sickness but bright green bile sickness, I flooded my bedside area with sick and to many bowls filled. To many bed changes & to many gowns put on me. Bile sickness the most horrendous thing ever, this made me weaker and being sick while having a large incision on your stomach trying to heal was hell while being in pain. My wound sadly split open and was oozing.
After this I really deteriorated over the coming days, I believe my stoma was very active to the point they put a bag on me then a very long tube to another bag so as it wasn’t being emptied as often this way, I developed a very high temperature and nothing was bringing it down, I was just sleeping I believe as I was so poorly, dad expressed his concerns to the staff as did Claire my best friend, they’d seen a difference in me. I had a tube put down my Nose to aspirate the bile out of my stomach & the staff did everything the could to try get my temperature down even moving my bed from the window to the corner out of the sun, I was completely out of it by now. I’ve been told this by fellow patient, the Drs were shouting my name, rubbing my sternum, trying to open my eyes, I had one pupil dilated and did some hammer tests on my leg and I didn’t move and inch, they took blood gasses which is painful procedure placing a needle into the artery in your wrist, I didn’t flinch . I was now in a coma and reaching a Glasgow coma scale of 3, the lowest scale possible not many patients recover from this. My parents were called at 11pm and I was taken for an emergency CT scan of my head and stomach then I’d be back to intensive care. I was critically ill, I could of gone either way. I’ve no recollection of this or the days that followed. Hearing all this back when I entered the ward a few days later, a patient I hadn’t met said ‘hello your Gemma, I just looked as I didn’t recognise her and she was telling me all that happened to me a few days earlier as she had just come on to the ward and heard/saw it all and was praying for me.
The most upsetting thing for me is what my parents must of gone through seeing me in a coma hooked up to all sorts being told I could die.
My days back in ITU were a mixed of being in a coma to waking up and being very disorientated to the point I told my friend I was at home and was in the queue at Asda getting some ham! I’d also pulled out my catheter and nasal tube in a state of confusion.
My fight in me and the care and dedication of the hospital team
Got me through this, and the love of family and friends. I was transferred back on to the ward a few days later and now the emotions started, I saw My Stoma for the first time (I was too ill prior) and screamed tears, it looked like an alien , my bowel was sticking out of my stomach and a bag now collected my waste. I threw the bed sheet over it and looked out of the window while my Stoma nurse changed my bag, I couldn’t bare to look at this ‘thing’ on my belly. I spent the next day crying, I sobbed my heart out to my best friend. I was so weak I’d lost my muscle mass so couldn’t walk far only to the end of the bed. I had to use a commode but still couldn’t empty my bag.
The following day after a very fern chat with staff and my best friend Claire giving me a very stern chat . I have no idea we’re but I gained this inner strength! I got up with my Zimmer frame and eventually made the toilet, next came the emptying of the bag wow I did it, weak as a kitten but I did it. I knew changing the bag would come somewhere along that day and you know what, I conquered that. These massive achievements in one day, it felt so good and I felt so proud of myself, baby steps but good steps in the right direction! I also had my first shower, wheeled into the shower by a nurse who helped me to but I felt a whole new person after this shower even if I was sat in the chair, refreshed and cleaner. Few days later I was home bound, weak as a kitten but great to be in my own surroundings, I visited the hospital twice a week as my bloods were wrong and raised and the district nurse visited daily to dress my wound.
It’s been a long bumpy road and my journey is not over yet, yes I have had some teething problems with my Stoma,and life at first hadn’t been a bed of roses, I’ve had a few problems but learnt many of things about life with a Stoma from the #GetYourBellyOut campaign, 15 months on it has certainly made me feel better and given me a better quality of life. I’ve done things I could never do before surgery, I’ve climbed Snowdon, I’ve done a water assault courses for charity and so much more and I’m planning my next fundraiser, I’ve been on all the days out with the family this summer holiday. I’m now living life, loving life. My life has begun and I have 12 years to catch up on!
I’m having problems with my rectal stump so waiting to have that removed in the future.
One thing I’ve learnt from this experience, I didn’t realise how strong I actually am, having a Stoma has completely changed my quality of life for the better, my experience has made me appreciate the little things we take for granted in life, and after my experience I hope I’m able to help others out there and will continue to raise awareness of IBD and money for Crohn’s & Colitis UK.
I’m forever grateful for the love, care, dedication and professionalism I received from the surgeon, Drs, nurses, healthcare staff, chef, cleaner, ward clerk, physiotherapists, phlebotomist and everyone else who helped me along the way, as I know without them I wouldn’t be here today. Also to my amazing friends especially Claire and Yvonne and my family, whom without them I wouldn’t of found the strength to carry on. And last but not least #GetYourBellyOut group without this I certainly wouldn’t of gained a wealth of knowledge, a whole new family gained , and many tips learnt for my new life with my Stoma.
Anyone facing surgery, it’s not the end it’s the beginning of a better quality of life, the beginning of being able to enjoy your life.
It’s been a long journey, a roller coaster of 12 years of fighting IBD. But you know what it’s made me stronger than ever. I’m now living life in the fast lane, loving the life my Stoma has given me. Yes I have some problems like bag leaks or pancaking of the Stoma, but theses are minor considering my journey. Having a colon is so overrated anyway!!
Thank you for reading my journey with IBD 💜