People's Stories!

What’s Your Story? Meet Joanne!

 

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My name is Joanne and i was diagnosed with Crohn’s Disease at fourteen, two days before i was to turn fifteen. From then i was tried on various medication to suppress my immune system to try and get my disease under control, this failed. At fifteen i had to get my large bowel removed and an ileostomy formed and of course my dad and i agreed we had to name it! So we gave my stoma his name ‘Whinnie the Pooh” so it had a positive joke towards it! (ha ha.) I was left what is called my rectal stump which is your rectum and it sewed inside at the part where your large bowel had originally joined it, in hope that in a few years time when the condition had settled that i could have a reversal (where you are reconnected from the small bowel to the top of the rectum.) By the age of 20, i had another operation to remove my rectal stump and sew me up (like a barbie!) due to my crohn’s affecting that part too.At this point i was in hospital for so long that i spent my 21st in there and I was close to death at one point too, and had to have several other operations done. Since then i have been OK but still suffering from time to time at home and recently just had a hospital admission as my the crohn’s has now spread to my pelvis and reproductive region. It has been decided that endure more surgery (hysterectomy) at some point to try and rectify this and make my symptoms less severe and also due to the damage that it has done.

 

Because of my journey and the things that I have endured, i have decided to raise money for CCUK. Many others suffer not only the same as i have but in cases many have died. I also don’t want anyone else to have suffered like i have due to this horrible disease! To go to my donations page for CCUK  and support me please click here

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People's Stories!

What’s Your Story? Meet Melly!

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My name is Melanie McLaughlin, and I was diagnosed with Crohn’s Disease 25 years ago in August of 1991. I’d had problems way before this time and i’d been experiencing symptoms since I was 14 years old. Doctors fobbed me off for a long time suggesting it was tummy bug after tummy bug. I was informed I wouldn’t be able to get pregnant. In 1998 I had an emergency operation to remove 25 cm of my large intestines and small intestines. I had been rushed into hospital not long before this, as they thought my appendix was the issue. During the operation they opened me up to get to my appendix and discovered that it was fine. They then cut a further 12 inches down into my stomach and there they found 25 cm of my large and small intestines were twisted and black in colour which was caused by crohn’s disease, it had rotted right through the walls of my intestines. After the operation i was in remission for 5 years, due to Pentasa managing the crohn’s disease.

So I carried on as normal with my life as best as i could and then discovered I was expecting a child, yay! I had a lot of complications though, and was in and out of hospital all the time, due to the scar tissue developing from the previous surgery attaching to my uterus. After my first child was born the symptoms returned, and I started flaring up again and continued to be in and out of hospital, taking medication after medication, until they finally got it controlled. Distressingly, the flare up’s continued over the years, and one particular consultant even suggested that my flares and symptoms where psychosomatic – all in my head! How I wish..I somehow got myself into remission again and fell pregnant for the second time in June 1999! As with the previous pregnancy, I was in and out of hospital due to the complications with the scar tissue on my left side. Shortly after I delivered my daughter, I was in remission straight away and it was great. I then fell pregnant again when my daughter was just 4 months old! With this pregnancy, it was plain sailing until I was 32 weeks and problems with my Crohn’s started to reappear and i was in another flare. I went into premature labour and my son was born 8 weeks early due to Crohn’s being so active. It seemed that giving birth that early didn’t agree with my body, and the flares continued, as did the doctors who continued to prescribe painkillers and fob me off. It was a constant struggle, day and night but I carried on with positive thinking and attitude.

My most recent operation was back in July 2013, and had more of my large and small intestines out. I was very poorly after the operation and had to be in ITU/ICU ward for 3-4 days due to a collapsed left lung and pneumonia. The operation itself hasn’t put me into remission, and i still have active disease. I saw my consultant on the 15th July 2014 and at that time I asked him why I was waiting so long to get into rheumatology, i then had a colonoscopy and it showed that I wasn’t in remission (as i had presumed), with a lot of ulceration, along with extensive scarring (also known as adhesions.) Aphthous ulcers, confluent ulceration, mucosa, patchy ulceration in erythema. I have been on Pentasa, Humira, Colesevelam, Loperamide, Folic Acid, B12 every 6 weeks, Vitamin D and a steroid called Budesonide since. At this point, I was still waiting for my rheumatology appointment to be confirmed, and I had been on the NHS waiting list since May of 2014. Eventually I was referred and was sent for a bone density scan and it showed that on top of the Crohn’s disease i’ve got osteoporosis. I had a total break down the week after, on and off for a few weeks due to Crohn’s pains and the nasty side affects of medication used to control it with bugs and infections I kept coming down with! Sometimes it gets the better of you and i’ve grown tired of being ill all the time and I don’t get invited out any more from people close by. The mental and emotional side of the Crohn’s gets to me on a daily basis. Day in day, I am scared and worried that if I do go out i have an accident or collapse because of the pain and some days I truly don’t know how much more of it I can take.

I have met some amazing people through a support group via Facebook and i have so much thanks Get Your Belly out and Crohns & Colitis UK , #GETYOURBELLYOU is a fantastic group and i am going to their 3rd Charity Ball this year where i get to meet the friends i have made, that support me on a daily basis! I also have other support groups such as Chronic Superstars and The Insomnia Lounge giving me all their love and support means the world.

I would like to say that my message to you all is this: FIGHT ON.,BE POSITIVE.,DON’T WORRY and BE HAPPY!

People's Stories!

What’s Your Story? Meet Kyle!

Hey everyone, my names kyle I’m 22!  I have crohns disease and this is how my journey began…

Over a year ago, I had terrible stomach pains, diorrea, sickness, weight loss and blood in my stools. It was so sore and I was so worried that i went to my doctor several times and was diagnosed wrongly that i faught for a long time till I finally got an appointment at the peter brunt centre in Aberdeen for a colonoscopy. I didn’t have a clue what was wrong with me,  then after the colonoscopy results i was admitted to hospital with severe pain, bleeding, high temperature and i was so weak. Ater the endless months of fighting with doctors i finally got a diagnosis of crohns disease in October 2015! My fighting days were finally over and i now knew why i was so ill. Constant flare ups and severe pain means I struggle to work in a job that I love doing which is really frustrating. I’m currently on treatment of azathioprine, pentasa, ferrous sulphate and steroids. I don’t normally speak about having crohns  as I know people have it a lot worse than me and im embarassed about it. I wouldn’t have wrote this if it wasn’t for an amazing inspirational person, who I really thank for helping me to see crohns in a different light. I also lost my confidence and have hid away for a long time, but thanks to you Alannah I am going to look at my disease different and hopefully get my confidence back and I would just really like to say thanks to her and to stay strong!

I am a great man united and Aberdeen football fan and although times have been hard, football has kept me going. I used to go to all the Aberdeen games in the past and i had a season ticket for 7 years! Crohns has put that on hold just now but i really want to get back to it without worrying i will flare at a game!

Heres a picture of my favourite football tshirt!

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Thankyou Kyle for your story! I am glad you found me through my blog posts  and i am so glad that i have helped you! Get well soon.