My IBD Story

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 even slightly by any medication/treatment put into it.

At one of my lowest points, 2009.

Having a blood transfusion, 2010.

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 kept 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 had always been a big deal for me as I battled with trying to eat through the agony for years. I had a strange feeling inside towards the end of the first year of the treatment that things were perhaps not quite right, and this was confirmed by my routine colonoscopy; I had developed 3 severe strictures (narrowings) throughout my colon with deep ulceration and swellings, the treatment had not done any good, or on the other hand made things much worse.

Over the next few months, I had tests such as CT scans, which 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 have resection surgery, but then when it came to meeting with the 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. I was also told that I was not a successful candidate for the J-Pouch procedure (an internal pouch) as my disease was too far advanced, especially in my rectum. 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, 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 time I nearly had my operation as an emergency, May/June 2011.

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 my weight had plummeted to around 5 and a half stone.

The last time I got rushed into A & E, IV fluids.

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 of my surgery arrived, and I went down for my operation, first on the list, after being marked up for my stoma site and prepared 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 I remember just being in and out of pain and even saying that I didn’t want to be here anymore! 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!

The first time I saw my stomach & Stacey Stoma after surgery.

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 amazing 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! My Stoma Nurse and I told the ward Nurses and Doctors etc who Stacey was (my stoma!), just so they knew I hadn’t gone mad! Well, even more mad than usual! I had to have my bottom sewn up as I no longer require the use of it because of my stoma, and have had my rectum taken away, so I had bottom stitches in which were took out around 2 weeks after surgery (all 11 of them!) I call it my Barbie bum! It sounds really disgusting, but to be honest, it’s not as bad as it sounds! More than anything it’s just uncomfortable, but I’m glad that I put up with this discomfort for a few weeks or months than have more of the hell that I was going through before my operation. I also had the stitches from around my stoma taken out. Neither really hurt, just felt a slight pinch. The operation has literally saved my life. Prof said that I had a swelling the size of a baby’s head on my Transverse 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.

The day after surgery, 5 days after in the hospital & a week after, at home. (Left to Right)

I am now 2 years after my operation and wow, it has been a huge learning curve & still is, always learning new things! In these past 24 months I have learnt a lot about having a stoma and what affects mine. Besides a few tiny issues I am doing well and am so proud of how far I have come. Like everybody is entitled to, I still get my down days, but then I just remind myself how far I have come and that I am alive!  I feel I have achieved a lot already in this time and hopefully will continue to come on in leaps and bounds in the future. I have a quality of life that I have never had before and a brilliant appetite! The operation was 100% worth it and I am glad I made the decision to have it. At the moment I am re-studying for my A Levels now that I am well enough to complete them & will hopefully be heading to University in September 2014 to follow my dream that I’ve had since I was first in hospital of working in the medical career. I will also continue to help others that are facing surgery and/or have IBD. I offer support to others on a voluntary basis at present and really enjoy this. If I can help others, even just by a little amount, then that makes me feel very happy and I know that it has been time well spent. 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 ♥

Over 2 years after Surgery :)

Over 2 years after Surgery 🙂

From my 20th Birthday (3 months after surgery) moving on in time a year or so 🙂

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6 Responses to “My IBD Story”

  1. flyingmammal August 29, 2013 at 7:46 pm #

    Thank you. I needed to read someone’s blogs. My newest ostomy is called Doughnut hehe. Anyways, Seeing other peoples photos and writtings helps a lot. Keep Fighting. Keep Smiling and please keep writing. xx

    • staceystoma November 16, 2013 at 1:33 am #

      Thank you! I’m glad you enjoyed reading 🙂

  2. Erin February 1, 2015 at 3:06 am #

    Such an inspiration! Thank you for telling your story, you are a strong young lady

  3. Marciana January 1, 2016 at 6:00 am #

    Are you still on hear or check questions or comments? I’m going to have my surgery on January 27th and just wanted someone to talk to that can help me become more positive. Your story already made me feel alot better, but I know I have another month till surgery and I just want to feel as positive and prepared as I can be

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