my story takes a scary turn.

To continue from the previous post, I shall try and start my story from when it starts getting a bit hazy! 
I’d had the news from Dr Mowat that I may have crohns disease, and was pleasantly surprised that the steroids were beginning to work, but after 3 days of being on them, the stomach pain returned.  I had a very busy week coming up, and was getting worried that I was starting to be sore again.  The day of my brothers 18th birthday and my grandad’s 73rd joint birthday came and I was admitted to hospital for the first time, it was TERRIFYING.  I’d never really been in a hospital before, never mind had to stay in one.  Luckily I was in a bed next to an 18 year old girl, and across from my bed was a lovely chatty older lady.  I was seen by a very attractive doctor called Mike, and a lovely doctor called Dr Jaffaboy.  They made me feel very comfortable, and always explained what was going on.  They told me I needed a CT scan, which I was scared about, as I knew it involved radiation. 
I went for the CT scan, and came back all smiles, I was in a good mood, because something was being done, but I was also in a bad mood, as it was my Mum’s 50th birthday on the 27th of August, and Matthews 21st on the 30th.  I didn’t want to miss any of these, but Dr Jaffaboy sat me down and explained that I needed to stay and have regular antibiotics and steroids through a venflon in my hand because the CT scan had shown an abscess on my bowel, on the terminal ileum, which is the small joining connecting the small intestine to the large intestine.  To be completely honest, I didn’t realize how dangerous this growth was and I didn’t think much of it.  I begged and begged to get discharged from hospital, and I was released on the 3rd of September, and didn’t tell anyone that I was still pretty sore, I was just happy to be out of hospital and back in my own bed. 
Little did I know that I was now a ticking time bomb… 
On the 8th of September, my world changed in a huge way.  It was a normal day, quite sore, but by bedtime, i was tired and looking forward to sleeping.  I’d noticed that I had a pain in my pelvic area, and it was painful to pee, but I didn’t think much of it.  I went to bed at 11ish, and couldn’t get to sleep.  At 2 in the morning I was in a lot of pain, so I went to the kitchen and got myself a hot water bottle and some paracetamol and went back to bed.  But things started to get more and more painful.  At 3.30am I couldn’t take it any longer and screamed out for Mum, she came running down, took one look at me and called an ambulance.  Then it started to get really scary…I was in absolute AGONY, my stomach felt like it was going to fall out of me, and I could barely breathe.  
The ambulance seemed to arrive very quickly, it was a lovely man called Brian, and a lady called June.  The first thing they did was take my blood pressure, which was 70 stolic, my heart rate was 130 and my temperature was 40, very dangerous. Brian managed to get a venflon in my hand, and gave me a tiny bit of morphine (they couldn’t give me a lot because my blood pressure was so low) I immediately threw up, and started to shake uncontrollably. They then strapped me into a chair and started to wheel me out to the ambulance, this was excruciatingly painful, I had to get myself on to the bed in the ambulance and get into a comfortable position, which was impossible.  My mum followed in my car and we rushed to a & e.  The ambulance managed to get there in around 20 minutes and they wheeled me into the department.  The next thing I remember was being surrounded by a sea of blue and green people, all feeling my stomach. I remember crying out and begging them not to touch me, it was just too sore.  Now it was time for them to try and get more venflon’s into my veins so they could get my blood pressure up and give me more morphine, but because my blood pressure was so low, my veins were collapsing, and they couldn’t get any in. Whenever they thought they had, they would try and flush the line with saline, and I remember it being absolutely agony.  I was given an abdominal X-ray and a chest X-ray which showed the abscess had burst, I didn’t know this and started to complain of a very sore shoulder, immediately the nurses and surgeons knew this was referred pain, and I was slowly poisoning myself.  They decided I needed emergency surgery, and then proceeded to wheel me up to the surgical ward.  
The next few hours are very hazy.  After they had managed to get my fluids in, they gave me a LOT more morphine, i was effectively completely and utterly high. I thought the bed was moving and everything seemed to be going very slowly.  I had surgeons coming in and out for a few hours until they came in to wheel me in to the preparation area for the surgery.  I had a moment of clarity when the surgeon sat down to explain that depending on what condition my insides were like when they opened me up, I may wake up and find that I had a stoma.  I calmly turned to him and said “I’ll expect to wake up with one, and anything else will be a bonus.”  Then I signed the sheets and was wheeled down the corridor.  I don’t remember saying it, but my Dad informed me that when I was being wheeled to the surgery I turned and said to him “am I going to die Dad?” a horrible and scary thing to say to your parents, but I literally felt like death was where I was heading, I was so, so sore.  I remember drifting in and out of sleep, and dreaming of all the things I thought I would never get to experience: I dreamed of the children I might have had, I dreamed of marrying Matthew, and buying a house with him.  I saw myself at our wedding, smiling and being completely and utterly happy.  Then I would wake up in the reality: dressed in a hospital gown with venflons in every vein possible, machines beeping all around me, my eyes were puffy from crying and my throat felt hoarse as I wasn’t allowed to drink anything for 8 hours. 
I was wheeled into the preparation area for the theater, and was told what was going to happen.  It was here that I had to wave goodbye to my parents, and in my doped up head, I believed this was the last time I was going to see them.  I physically couldn’t breathe, my parents looked so worried, so completely and utterly distraught at their daughters distress, but they both looked so beautiful, I was terrified at the thought of losing them both.  It was at this moment that I realized the meaning of love.  I was completely and utterly consumed with this fear that I would never see them, or my brothers, or Matthew again.  Nothing else seemed to matter other than surviving this operation.   I waved to my parents, and then I was taken into the anesthetic room. I remember a mask being put over my face and then blackness. 
Then next time I would wake up, and be SO glad to be alive. 



5 thoughts on “my story takes a scary turn.

  1. hey It’s Maddie I was in the bed next you in your september visit. Sorry things have gone so badly but I’m pleased you are getting through it.

    I too have been in and out since we last saw each other and was told i needed a stoma bag but refused the operation so I’m now on methotrexate and yes still on our fat face friend tablets steroids to avoid thiis op.

    It’s great to see you have a blog I had been thinking of keeping video diaries of my progress and posting them like you do on your blog.

    It would be great to hear from you take care

    Maddie xx

    1. Aw Maddie, I’m so glad you got in touch! After I was back in ward 2 I asked Scott for your second name as I couldn’t find you on Facebook, but things got a tad crazy after that and ice always forgotten! I also tried to find you through the guide dogs, but your difficult woman to track down! Haha 🙂 how is the crohns now? What are your fears about having a stoma bag? For me it changed my life, for the better! I can put you in touch with some fantastic support groups on Facebook if you’d like?
      Aw thank you so much for getting in touch! Let me know how you are! Xxx

  2. Yeah I know I tried finding you on Facebook but had no luck. It was Mike (Miller) that helped me find you. Well I am learning to ride a Motorbike atm and I have only fallen off once. I have a guide dog just now who is younger than most so she is keeping me busy :). I am studying from home for my Int 2’s then my Highers as it’s not possible for me to go to college. Plus I don’t have a job and it’s not easy to get one so I have free time at home to study. I go every friday for treatment at the hospital so i’m about half way through just wish the steroids would finish I hate looking like a whale lol. I really love acting and I am in the amature dramatics but my main goal is to go to edunburgh or rsamd and study acting I already did a course at college but they didn’t get the whole crohn’s thing and I wasn’t able to go back and I feel a stoma would stom me persuing my tv career and I do want to get better but it’s a big sacrafice and there is no guarantee it wont flare up in other parts of my body. I don’t have a botfriend either and the thought of having to explain it all to a guy that i could trust to understand just freaks me out. There is lots of pros and cons and i’m sure you would have the same thoughts as me about it just the stuff like how far could i go about changing it where the nearest toilet is ect. I’ts quite selfish all the reasons I don’t want one I know it is but I just feel I my life would be over interms of the career i want to persue. My back up plan is a nurse and I know i could be one with a stoma but I just dont want to let go of that yet. You have had a lot to deal with so very quickly but it’s remarkable how positive you have remained and how well your coping. See i’m a really strong person and Through my life have had a lot of trauma but never anything I thought I couldn’t jandle but rescently I havebeen put on anti depressents and I feel a failure because I needed help and I never neede help with derpression I always managed to pull myself through so my pride and self asteem has gone down a bit but I won’t be on them for ever just until things pick up but i think it’s mainly because it’s a side affect of the steroids and i’ve been on them at a high dose for quite a while. I find you very insperational and strong and Karma will give you one hell of a nice payback for all the rubbish you have put up with. You keep smiling and taking care of yourself and I’m always around if you need to talk. Always! 🙂

    Good to hear from you xxxx

    1. Ooh I was thinking of doing my motorbike test! I’ve sat my scooter test, but not the motorbike, how are you finding it? And where are you sitting it.
      Of course it wouldn’t be your first choice, lucky for me I didn’t have a choice, my body was so bad that i needed a stoma, I’m glad it happened that way because if I know something going to happen, I just spiral. I will tell you now, it’s not easy. You’ll probably be like me in that physically having a stoma didn’t really affect me, I’m a strong enough person to just do it. I don’t think about it, I can imagine you’d be strong like that also, especially since you’ve been suffering for years and years. A stoma effected me emotionally, like you said I wondered what my boyfriend would say, but luckily for me he has been my rock. He loved my stoma because it meant I was no longer in pain, I wasn’t constantly at the doctors or in hospital and I finally had a smile on my face. It is a big step accepting that you may need a stoma, but trust me, it doesn’t hinder your life! It gave me my life back, I was able to exercise, go to the pub, go out for huge big meals. I finally starting living again! You are in no way AT ALL a failure, you kept me sane in hospital the first time, knowing I was able to ask you questions and you’d give me a honest response was refreshing and just lovely, please don’t think that you are a failure for being on anti depressants. You’ve had an extremely difficult few years, as I know now, Crohns disease can be catastrophic! It can change your life, but from meeting you once I know you’re a strong, independent woman who will get through this, if you need a little chemical help, then so be it! Doing a vlog or a blog of what you’ve been through can really help, I started writing because it was an outlet for me, but after having almost 16,000 views the response has been overwhelming, I’ve not had one bad thing said about having a stoma, people are incredibly accepting and kind when it comes to others troubles, it’s really made me see the good in human kind!
      You helped me when I was terrified, and I’m so happy you’ve gotten in touch. If you need any information about having a stoma, if it would be something you’d ever consider, then I’d be more than happy to help/give you information/ put you in touch with some amazing people.
      How is your quest to get into the acting world going? I hope you’re getting to where you’d hope to be!
      All my love, Roisin. X

  3. I’m doing mine through Scot rider in dundee but the theory test is at the test centre. It’s great the instructers are lovely and it’s so easy. I’m so small I can only ride on one type of bike but the CBT you can pass in one day. I’ve passed that and have my theory in about two weeks. As i have a driving lisence it’s not so hard to learn. but I really love it and I think you would I can give you scot rider info if you want.

    How did you set up your blog site as I think it’s something i’m keen to do but don’t know how to start.

    Having you to share thoughts and feelings with is great. And it’s a relief to have someone who understands. You are brave and very good at giving advice. I’m proud you have kept going with a smile on your face. I’m so glad I know you because you truly are a special person with a strong determined mind.

    have you ever herd of CICRA their a research charity for children and young adults with crohn’s disease. I’m keen to do some fund raising for them so me and my friend are putting plans in place for that. They have a lot of info and news letters about crohn’s and you can get a pen pal and discuss your disease and cicra keeps you updated with amy new research and what not.

    You might not be well enough but I thought I would ask It’s my birthday in March and I’m going out with some friends and it would be great if you could join us. I fully understand and appreciate it if you are not strong enough to but I thought I would offer. If youre interested I can facebook you the details.

    take care until I hear from you

    Maddie xx

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