The formation of Stacey.

19 Aug

Hi guys & girls,

I’m Amy & I’m 19 years old, from North East UK.

When I was 7 years old, I was diagnosed with Crohn’s Disease, and after years of tests and uncertainty and not being treated correctly, I was diagnosed with severe Crohn’s Colitis (Crohn’s of the large intestine/colon) in November 2008 when I moved up to the adult clinic. Crohn’s Disease put me through hell; I’ve had every medication, test and treatment going pretty much and my body became reliant upon Prednisolone (Steroids) but never seemed to be healed by anything put into it. In April 2010, I was put onto a treatment via IV infusion called Infliximab (Remicade) and this seemed to work wonders to how I felt, but all was a very different story on the inside! The infusions seemed to keep me on the level and mainly keep my symptoms at bay, apart from side effects from the treatment such as low immunity and fatigue, but most of all, I seemed to be able to eat, which has always been a big deal for me. I had a strange feeling inside towards the end of the first year of the treatment that things were perhaps not quite right inside, and this was confirmed by my routine colonoscopy; I had developed 3 severe strictures (narrowings) throughout my colon with deep ulceration and swelling, the treatment had not done any good, or bad.

Over the next few months, I had tests such as CT scans, which really really hurt because of the narrowing of my rectum and soon, surgery was on the cards. I always knew this was a possiblity in recent years, but had never really thought there was a high chance of it happening! I was originally advised by my Gastroenterologist that I would need surgery to have the bad parts of my colon taken away and resected, but then when it came to meeting with the a top surgeon (Professor/Prof), he gave me the news that this would not be possible because of the extent of my disease and that I would need the whole colon taken away. Even though this was a big shock for me, I had already been telling myself that this may well be a possibility in reality, so had tried to get my head around it, but the truth is, you don’t start to get your head around it until everything happens and surgery has been done, in my point of view.

I was then in and out of hospital with severe pain and dehydration, on lots of IV fluids and medication over the next few months. I was getting desperate to escape 13 years of agony and distress and pure hell with Crohn’s Disease that surgery seemed like the light at the end of the tunnel! After being put on yet more steroids then taken off them only to plunge back into another flare-up, a date for my surgery was made; Tuesday 9th August 2011. I spent the few weeks before not knowing where to put myself or how to deal with what I had to face, but what got me by was the amazing support I received from my family, boyfriend, my amazing stoma nurses & few true friends and the knowledge that this operation was to be done to make me better and get me out of this 13 years of what seemed to be never-ending hell.

The Saturday before my operation, my Dad had to take me into Accident & Emergency as I had not eaten or drank anything for days and was in agony and on the verge of anorexic. I got admitted into hospital after a long over 6-hours in the A & E department in agony where I was finally given something stronger for the pain – morphine! Both good and bad reasons for morphine I’d say, but that’s all another story, at least it took away the pain!

Then the Tuesday arrived, and I went down for my operation, first on the list, after being marked up for my stoma site etc on the Monday evening. The next few days I cannot really remember, they are all a bit of a blur, apart from me remembering my epidural hadn’t worked and me being in agony and wondering if I could pluck up the strength to look down at my stomach! I spent a few days really ill, being constantly sick with bile as my bowel decided to go to sleep for a while and just in general agony and asking to die! I have never felt so horrendous in my life and as helpless and like there was no way out. Every slight bad smell made me heave and I could not seem to escape the smell of my stoma contents no matter where I went, even though there was no smell escaping from my stoma bag! I could not face changing the bag by myself for the first few days as the smell was too vile, but to my pleasant surprise, I soon plucked up the courage with the help of my stoma nurse and had emptied the bag then changed it for the first time. This to me was a massive achievement and I actually said “Hello Stacey!” to my stoma :p My stoma nurse and I told the ward nurses and doctors etc who Stacey was, just so they knew I hadn’t gone mad! Well, even more mad :p hehe! I had to have my bottom sewn up as I no longer require the use of it because of my stoma, and have my rectum taken away, so I have bottom stitches in at the moment, I call in my barbie bum! Hehe. It sounds really disgusting, but to be honest, its not as bad as it sounds! More than anything it’s just uncomfortable, but I’d rather put up with this discomfort for a few weeks or months than have more hell that I was going through before my operation. Hopefully, I will have my stoma and bottom stitches out next week, and the ones in the 5/6 inch scar up my belly are dissolvable. The operation has literally saved my life. Prof said that I had a swelling the size of a baby’s head on my tranverse colon; no wonder I had been in such agony and unable to eat! Had it have been left another few days or weeks, I may not be here to tell the tale. I am so thankful for my operation.

I am now at home from hospital and taking each day of my recovery at a time. It is a slow process and I have my good points and bad points but it is all a learning curve and I am already loving the feeling of not being in constant pain and feeling like I am recovering more and more each day. Every little thing I do I count as an achievement, such as today when I took a shower without a stoma bag on, such as managing to eat a sandwich, such as managing to walk up and downstairs. I am just so thankful for my life & to my surgeons and most of all to the amazing support and love I receive from those around me. They have got me through hell.

I am extremely thankful for Stacey, my stoma. This is just the start of my posts about my life with Stacey, a week and 3 days after my operation.


& this is my belly scar and Stacey a day post-surgery! People may find it disgusting but I am so proud! 🙂

3 Responses to “The formation of Stacey.”

  1. sweetcomice August 21, 2011 at 6:40 am #

    thanks for sharing this.
    I am amazed and grateful to read your story.
    I am glad you are feeling good and all is well.

    • staceystoma August 21, 2011 at 4:29 pm #

      Thank you Georgia! That’s really nice of you!

  2. Gen May 10, 2013 at 6:54 pm #

    Just stumbled on your blog and felt a connection because my 8yo son was just diagnosed with Crohn’s last month. Medication is working so far, no more bloody stools, but his appetite is not back and weight is not coming back up. Your story inspires me to make sure we follow meds and diet in hope his colon doesn’t get as bad as yours once was. I myself had 30cm of colon taken away when I was 19yo and since then never had a second thought about my food and kept eating whatever whenever. I’ve been having diarrhea everyday since and when the Immodium stopped working I went to thick Metamucil which removed the excess water and allow me a normal elimination frequency and urgency. But your story made me realize that if I ever get another bad episode, there won’t be enough left and I’ll probably end up with a stoma of my own. I know you have been off that blog for a few months now, and probably live a healthy happy life and might not ever see that comment, but I just wanted to say thanks!


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