30 Oct 2016

£10,000 for research in to a cure for Crohn's Disease and Ulcerative Colitis!

Thank you to all of those that have taken part in #fundraising so far!

We've reached the 10K mark!!

#IBDSuperHeroes, fundraising to Cure Crohns and Colitis!

#IBDSuperHeroes – fundraising to CURE Crohn’s and Colitis.
Money raised by #IBDSuperHeroes is solely invested in to finding a cure for Inflammatory Bowel Disease.
You can donate via our JustGiving here
You can donate by text using;
Cure Crohn’s and Colitis: CCSH90 £3 to 70070

1 Oct 2016

Ostomy Awareness Day: Sahara's story

Name: Sahara Fleetwood-Beresford
Age: 28
Location: Derbyshire

I had 6 surgeries within 7 years, 2 of which required ostomies.

I got sick fast. No warning and no long diagnosis period, so in a sense I was lucky. August 2007 I started with frequent toilet trips, cramp that meant I couldn’t get out of bed, blood and mucous. As is very often the case, the GP said I had IBS and I waited for the medication to work for 2 weeks before admitting defeat and going to A&E. By this time, I had lost 11lbs in 14 days and was very weak. I was diagnosed with Ulcerative Colitis within a few hours of being admitted and after one week in hospital and my symptoms not improving with IV steroid treatment, I had emergency surgery to remove the whole of my colon (a subtotal colectomy) and an ileostomy formed.

To say me and my ostomy didn’t get on well would be an understatement. My stoma was pretty flat so I spent most of my time worrying about leaks and it did leak at night more often than it didn’t. I was constantly suffering with burnt skin around my stoma which was itchy and sore. I was ashamed and I didn’t want to go anywhere or see anyone.

I never had the chance to understand what was happening to me. I was 19 years old and have never heard of IBD at the time of diagnosis, and once I had been admitted to hospital and diagnosed I received minimal information, other than a few booklets from Crohn’s and Colitis UK, but theses didn’t prepare me for the seriousness of the disease. The books and the hospital professionals insinuated that I would find the right medication and live a long and happy life, even if it was controlled by medications. Surgery hadn’t been mentioned as an option until I was told I needed it.

Truth be told I hated my life, I hated the disease and I hated the bag. I isolated myself and I felt like I was the only one going through it. I couldn’t wait to have it reversed, but when the time came to discuss have a jpuch built (which was needed for reversal) I was hit the enormous fact that this would have major implications on being able to conceive later. It was a tough decision but just over a year after having the first surgery, I went in for the second – the creation of the jpouch. A year after that, I fiinally had my jpouch connected and my stoma gone! They were the worst 2 years of my life and I couldn’t imagine ever being ok with going through that again.

However, after having my jpouch connected I suffered chronic, recurrent pouchitis and cuffitis (the jpouchers version of proctitis). Discomfort and running to the toilet all of the time and spasms up my bottom… none of which were fun. No medications would work long term and I was told that I may need to have my bag back for a while to give my pouch a rest or the pouch could be classified as a failure and I’d be left with a permanent ostomy.

This was the worst possible outcome for me, and due to the mind altering prednisone medication I was taking and the desperation I felt, I had very calmly decided that if the time came that permanent was the only option then I wouldn’t be sticking around on the planet to live with it.

It was around this time that I took to the internet, to find and speak to other IBDers, and I am thankful for that decision every. single. day.

In 2014, after 2 years of progressively worsening pain, meaning even a liquid diet didn’t help the agony which left me living on some pretty hefty pain meds just to get out of bed, a barium enema showed a really tight and long stricture leading up to my pouch, next to a short and slightly less tight stricture. I was admitted for surgery less than a week later and once in there, the surgeons discovered that the long, narrow stricture was in fact twisted intestine and the shorter one was an abscess. I ended up with an ileostomy once more as my jpouch had been torn whilst they were untwisting my intestine.

This time it was different. This time the stoma was a much better shape and I barely ever had a leak. I could eat whatever I wanted, I could drink alcohol again, I had my life back! After meeting other IBD sufferers and ostomy wearers online, I found I no longer felt like my life ended here. I found ostomy covers and support underwear that meant I could wear normal clothes without being paranoid all of the time that people could see my bag. This time, I wasn’t embarrassed by it, I was proud of it, it was a reminder of all the shitty things I‘d been through and survived.

I have now had stoma reversed once more but I know the likelihood of needing a permanent stoma sometime in the future is a possibility, but that’s OK. I know it doesn’t change who I am.

I am a fucking warrior.

I am an #IBDSuperHero. 

Ostomy Awareness Day: Lisa's story

Name: Lisa Cummins
Age: 29
Location: Dublin

I have indeterminate Crohn's disease, a form of Inflammatory Bowel Disease. I was diagnosed in 2004. May last year, I developed a perianal abscess and a rectal vaginal fistula, i had lost 2stone in six months. I knew something wasn’t right.
I had a check up with my team and I was admitted on the spot. I had numerous amount tests done and I was given an NG tube, as my body wasn’t absorbing the nutrients from the food I was eating.

3 weeks later it’s now June, I’m still in hospital, my doctor came to see me and told me they wanted me to see a colorectal surgeon, that I needed a stoma bag. My heart sank and tears ran down my face, couldn’t believe it.

All that ran through my head was why me? I was blaming myself for all of this, Why is this happening to me? I was told this wasn’t any of my fault and these things happen.

I was marked for my bag by a stoma nurse a few days later and brought down for surgery the next day. I cried As I was wheeled down to theatre and said goodbye to my parents.

I woke up back on the ward a few hours later. I know after you wake up and look down and see this thing stuck to you and your heart just sinks and you can't stop the tears. I Was in hospital for 10 days after surgery. But a total of 5 weeks over all.

I was so nervous now I was home, it took me a while to get used to changing it myself, how to dress with it and learning different things about it. I adapted really quick to it, I think from the support from family and friends, and friends who had bags too, helped a lot.

I’m now 15 months post op. My bag has saved my life, my weight has gone back up, last year I was 7 stone and now I weigh 9stone.

I've decided I want to keep my bag. I know there will be more surgery further down the line to make my bag permanent. But it's what I want and I know I can do it, I've come this far.
For me the pros outweigh the cons,  For others it may be different. But I know it's the right choice for me.

Im 30 this year and after 12 years of this illness dictating my life, I'm taking control now, I'm keeping my bag for a better quality of life, I'm doing this for my future.

I want to be able to enjoy my life with my partner, he also has Crohn's disease and he's been my rock throughout all of this. Even though having this illness is hard, it's the only positive thing to come out of it.

I feel more confident in myself now than I did before my operation. I know it took a few months after my op but I did it with the help of my loved ones.
I've had bad anxiety for years and always looking for bathrooms. I used to avoid going out, I always soiled myself too. I don't want to go back to all that again, My bag has helped me.

I'm apart of a support group on Facebook called #IBDSuperheroes which I help admin. They are an amazing campaign that helps raise awareness about this illness and helps people like me, I no longer feel alone. My life has changed so much for the better since having my bag.

Ostomy Awareness Day: Matt's story

Name: Matt McBride
Age: 45
Location: Baltimore, Maryland USA

The first thing I remember is being 15 years old, and over about two weeks suddenly needing to poop a lot.  Then I recall the blood in the toilet.  When I told my parents, they thought I was exaggerating.  Finally, one afternoon I left the toilet unflushed and bloody smears all over the bathroom.  When I called my mother and father to see it, they were horrified.

By the time I saw the pediatric gastroenterologist a day later, the blood was so heavy that I couldn’t see past the surface of the toilet water.  By that afternoon – June 11, 1987 – they were preparing me for arrival at Johns Hopkins in Baltimore.  I remember being scared when they told me I was going to Hopkins.  For 40 years, Johns Hopkins has been ranked among the top three hospitals in the world.  It’s where they send people who aren’t supposed to live. 

What I remember from my first night in the hospital is staying up until 3 in the morning answering a barrage of questions.  I remember my first physician was Dr. Livingston, and I spent all night trying not to say, “Dr. Livingston, I presume?”  I remember this was the first time I ever heard the word “stool,” and I chuckled as I tried to conjugate the verb “to stool.”  And I remember their telling me I had one of the worst cases of UC they had ever seen.  I didn’t get out for almost three weeks.

By the time I was 18 my colon was too damaged to stay in me.  If I didn’t have the ileostomy, I would develop colon cancer within three years.  Maybe I’d live to be 25.  I opted for the ileostomy.  It wasn’t much of a choice, and for years I hated myself for not being brave enough to die.  I would have terrible accidents.  The stench was awful.  The bag would come undone and empty all over me in my sleep.  It was one humiliation after the next.

In 1990, the internet didn’t exist, and social media was still 20 years away.  I knew nobody my age who was living through what I was.  I had to learn how to have an ostomy on my own.  I remember feeling very, very alone.  I sank myself into music and learning to play the guitar to keep the depression at bay.  After a few years, I learned to accept myself the way I was, but also to never tell anybody I had a bag.

And then one day when I was 35, 17 years after I first got my bag, I discovered an internet message board of people just like me.  Now I’m not afraid to talk about it to “normal” people.  I even wrote a book about my experiences (shameless plug… “The Witch of Washington”).  I am one of the last of the “old school” people with ostomies who once lived in shame and fear, but it is nice to not have to be afraid of it anymore.

Ostomy Awareness Day: AJ Mooney's story

Name: AJ Mooney
Age: 45
Location: Scotland 

Well mine started on 25th February 2014! I went to see Shane Filan in Glasgow and stayed over. I feel a bit off colour after we had eaten and put that down to the meal or just my Crohns. I felt better a short time after and was able to enjoy the concert. Afterwards I stayed over at a hotel and I woke in the middle of the night being sick and this was to continue until the 28th February.

On 28th February I was admitted to hospital where the found a blockage in my bowel. The tried a NG tube (tube down my nose) to remove it as I said I wanted a non-surgical option. I can't remember the exact background on how we got there but eventually it was agreed I would be started on Infliximab and I would be kept in over the weekend of 7-9th March and the all being well go home on the 10th March.

Well my body had other ideas and on 9th March I was rushed to theatre after my bowel had perforated. As I was prepared for surgery they made me agree to consent to a stoma which was always my biggest fear since being diagnosed with Crohns! I was in a whirlwind of doctors and needles & then three days later after being in a coma I woke up to my newest accessory Sulley! 

A year and a bit on after we became acquainted I have grown quite attached to my little monster and waiting to see if we will be friends for life!  So that is my #ostomystory well done for reading ahahaha! Oh and here is my fave pic of me and Sulley!