Undiagnosed, unhelpful and unhappy!
2013, 22 years old, flying high in a successful job in London and living the dream! It was the whole reason why I had moved to London from my little hometown. I wanted a career and after hard work I finally could see it happening. I had been in London for about a year and a half and all was going to plan until one day at work I became unwell with a sickness bug. It wiped me out for about 3 days but once it passed I thought it was finally over and I could go back to work and carry on as normal. About a week after I started to get unbearable stomach pains, any thing I ate went straight through me and I was having to run to the toilet every couple of hours. This continued for about 3 months with the urgency getting worse and eventually I started to see blood after going to the toilet. This was when I decided on going to the doctors. At the time I was so embarrassed going to the doctors to talk about having diarrhoea! This was made 100 times worse after being met by a dismissive doctor who rushed me and made me feel stupid. She did however put me forward for blood tests and the dreaded stool sample (which, at the time, I completely freaked out about!). After having both the tests done I went back, she told me nothing was flagged and I probably had IBS so I just needed to get over the counter medicine. She made me feel like I had wasted her time and fso embarrassed to be talking about it I never went back. I spent the next year of my life getting progressively worse, rushing to the toilet, loosing a lot of blood and in some cases ending up in the worst situation possible where a toilet wasn't around - you can probably guess the outcome!
"You're very poorly" - FINALLY!
March 2014, 23 years old, 11 (ish) stone and in a lot of pain! I took a well deserved weeks annual leave just in time for my niece to be born. I went home to visit my sister and her new born perfect little girl but, also, to rest after the year from hell! That week I decided to book into my family doctors I had been going to since I was a baby and ask his advice. He immediately sent me for more blood tests, put me on a waiting list for a sigmoidoscopy and assured me he wouldn't give in until he had got me an answer. I spent the rest of the week in bed, asleep. No matter how much I slept I simply couldn't get up! Any time I ate my stomach was getting worse and I immediately would have to run to the toilet. I was pale, thinner than ever before and simply exhausted. I had my blood tests and in my follow up appointment my doctor simply said to me "You are very poorly Leanne" to which I just sat in his office with tears in my eyes, beyond greatful to him for believing me and for confirming finally that there was actually something wrong! This wasn't normal. Turns out my inflammatory levels were through the roof and he made my sigmoidoscopy urgent which gave me a wait of 4 weeks and not the months and months it probably would have been! After that I struggled my way back to London to hand my notice in to my dream job, left my cosy little studio flat and packed up my things to move back home. That was it, all of my hard work, my ambition to carry on my success, gone. Just like that. It broke my heart.
Diagnosis - Mild (Really?!)
April 2014, 9 (ish) stone and sofa ridden! I say sofa ridden as by this point I was so weak I couldn't even make it up the stairs to my bedroom so I was stuck on the sofa day in and day out unable to move only to drag myself to the toilet around 15-20 times a day which used up the tiny bit of energy I had. My appointment for my sigmoidoscopy came and I finally thought I would get some solutions. Now for those of you who are unaware of what a sigmoidoscopyis, it's a camera inserted into you bowel (basically up your bum!) to see inside and check out what's going on. An experience I'm not sure many (if any!) look forward to! After that I was told by the doctor performing the sigmoidoscopy that I had a mild form of Ulcerative Colitis which was Inflammatory Bowell Disease or also known as IBD. He gave me some medication and told me if they don't work in 2-3 weeks to see my GP.
MILD?! If this was mild then I couldn't bare the thought of even moderate IBD!
I went home and took the medication praying every day I would start to feel better. After 2 weeks, no improvment. Off to the doctors I went where I was moved onto steroids and told to give it a week. After a week of continued weight loss, fainting and yes more time rushing to the toilet, my GP decided the steroids weren't working and sent me to hospital. By this point I was broken, frail and mentally drained with no energy to even talk just again felt an overwhelming amount of gratitude to my GP for again doing everything in his power to help me. With tears streaming down my face my mum carried me to her car and took me into hospital.
Colon or no colon - you decide?
May 2014, 7 stone and hospital bound. I have to say looking back on my hospital time it is quite comical, from the nurse bringing me a commode to go to the toilet in (oh the horror!), having poo charts (note - not the medical term), to every doctor in that hospital having to put something up my bum, I can only look back and laugh!
My first week I had a more intense course of steroids through a drip to get into my system quicker to see if that would make a difference. After that failed to work I met with 2 different people. The first being a surgeon to explain to me that a potential next step would be to have a sub-total collectomy and end Ileostomy. In more understandable terms my large intestine removed and a small opening created in my abdomen for my small intestine to come out of. With that I would wear a "bag" over it where all of my "waste" (aka poo) would go into. The second a doctor explained some further medication that would suppress my immune system and potentially ease the symptoms of my IBD. Without boring anyone with the details both came with pros and cons. It was simply for me to decide. A decision that needed to be made quickly as I after I came from my final X-ray I was told my bowel was in danger of rupturing (doesn't sound too mild to me!). Decision made and surgery it was! I made the decision on Tuesday evening and at around 10am the next morning I was curled over on the side of my bed getting an epidural. Counting back from 10 and then the next thing I knew I was waking up surrounded by nurses just asking for my mum! Once I'd called my mum, I believe, I had a chat with one of her nurses however, on so much medication all I can remember is telling her the devil had been removed from me! See! Just comical!
Not over yet!
After surgery I spent just over 24 hours in intensive care and then was moved to a ward after showing signs of improvement. After being moved, there continued the drama where my epidural wasn't plugged back in, so 32 hours out of surgery I had no pain relief and was in excruciating pain. Once that was sorted the next day I all of a sudden started vomiting pretty much every time I ate or drank anything. My heart dropped, after a year of not eating properly I finally thought I was on the road to recovery. Every time I was sick it put strain on my stomach where my scar was which was causing it to re-open. I was instantly made nil by mouth and told in basic terms my small intestine had stopped working and that all we could do was wait until it kick started again. Until then I had to have a tube up my nose down my throat and into my stomach and every couple of hours the nurse had to come and syringe all the the bile out of my stomach to stop me from throwing it up and causing more damage. Day in day out for 2 weeks, breakfast, lunch and dinner would come and go by passing my bed where I would be lying there basically wasting away. Not even enough energy to support my own head on my shoulders, having to be proped up by pillows, far less able to move out of bed! On so much medication and morphine I couldn't concentrate on any book or TV show to entertain my pointless days away. As the days went on I started to suffer from bed sores from not moving despite all the nurses attempts to move me in different positions. There would be times I would vomit on my self and on more than once occasion my catheter had moved out of place and I'd wet the bed. There I was 24 years old, motionless, helpless.
Is that a light I see at the end of the tunnel?
June 2014, 6 stone and very very hungry! After 3 weeks in hospital I was just about ready to give up. I was down to a frail 6 stone and felt like it would never end.
Then one day that pesky little small intestine of mine suddenly came alive! It got its ass into gear and started working! No more throwing up but more importantly no more nil by mouth! I remember the day I could eat I had a yoghurt, a hot chocolate and 5 plain digestive biscuits and I have never been so full in my life! I thought I was about to burst open! The next day I had the energy to get out of bed and stand! The day after that I was able to go to the bathroom by myself, with the help of a Zimmer frame, and actually had a bath! I put plaits in my hair, had conversations with the good looking doctor and felt like I was looking bang on! (Just a note I 100% was NOT bang on as I was 6 stone with a massive football head and was so pale I was almost see through but still at the time it was better than recent encounters!).
My final day in hospital I had to go with the physio to walk up the stairs before I was discharged. Despite the excruciating pain still from my scar and so much muscle deterioration I could barely lift my leg off the floor I forced my self, pushed myself further than I ever have before to walk up those 10 steps just so I could go home! That day my mum picked me up, linking arms we walked to the car and I was finally home! I had a new accessory to add in the form of an ileosotmy bag which comes with a whole other story of how to deal with, literally pooing in a bag daily but long story short - I wear my bag with pride! This bag full of crap literally saved my life! It gave me a completely new outlook on life and inspires me every day to keep going, keep pushing my self!
"Aiming for abs"
So aiming for abs - what is it about? Ok partly it is to get a 6 pack because why not?! Since my illness I value my health and my body. I go to the gym 4-5 times a week and have dipped my toe in everything from MMA to yoga to weight lifting, anything to get me fitter, healthier and in good shape.
The point is having ileosotmy bag doesn't ever stop me.
It doesn't stop me from doing anything and everything at the gym.
It doesn't stop me from wearing a bikini (hell no I don't want no tan lines!).
It doesn't stop me from wearing my favourite skinny jeans or little strap dress.
It certainly isn't going to stop me from getting my career back either. I am back in London and although I might not be exactly where I was prior to my surgery I'm determined to get my career back!
To all of my fellow ostomates, or anyone hiding something that makes you who you are today, I say wear it with pride as a badge of honour! You fought through the battle to get it why not show it off!
First of all thank you to all of you who have taken the time to read this! I appreciate its a little long!
I just want to also say thank you to my incredible mum who never left my side during all of this! My sister who consistently gives me the feel good factor no matter what!
Finally my doctor, Dr. Davies, who believed in me and did everything in his power to help me, my surgeon, Mr Mcilroy and all of the nurses that cared for me. Because of you all I'm here today to share my story and inspire others, for that I am forever greatful!