Wednesday, 12 October 2016

My Crohn's Story

I have Crohn's disease and luckily have stayed in remission since my diagnosis 8 years ago.

I thought I would share my story to help any others suffering feel less alone and also to encourage anyone with symptoms to get checked out.  Its not the most glamourous disease and therefore people are a bit embarrassed to discuss it or get checked out.

For those who don't know Crohn's disease is a type of inflammatory bowel disease (IBD) not to be confused with irritable bowel syndrome (IBS).  Symptoms often include abdominal pain, diarrhea (which may be bloody if inflammation is severe), fever, fatigue and weight loss.  It is a chronic inflammatory disorder, in which the body's immune system attacks the gastrointestinal tract causing all the stomach issues. 

I became ill in May 2008 when my daughter was 16 months old.  It started with stomach pains when I was eating. I'd get half way through lunch and bin it feeling full, uncomfortable and sometimes sick.  I visited my G.P who said it likely to be excessive stomach acid and gave me some tablets to try. Two weeks later I felt worse, had lost weight, had terrible stomach pains and had reoccurring diarrhea.

I went back to the G.P and it was then suggested I could be wheat intolerant. A blood test was taken for celiac disease. The test came back positive so I began a wheat free diet.  In 2008 gluten free bread was awful cardboard anyone? Unfortunately I got worse and was signed off work.  I had lost 1 1/2 stone and was weak and felt really low, was now anemic and suffering night sweats.

Another trip to the G.P and this time I took my partner and burst into tears.  Walking anywhere was a mission. Picking up my daughter was getting to be a huge effort and carrying her upstairs nearly impossible. I was tearful, tired and in pain.  My blood pressure was so low the G.P was surprised I hadn't fainted.  This time the G.P called our medical admissions unit at the hospital and I was admitted for tests.  As soon as a consultant read my history he suggested Crohn's. I'd never heard of it and he gave no information.  I had some tests an upper endoscopy, stool sample, blood tests, x ray and scans.  These proved inconclusive but I was told I was 100% not celiac so celebrated with a chicken wrap which instantly made me feel happily and then extremely ill. I was discharged with medication to treat Crohn's and a 2 page leaflet. I had steroids Prednisone and later Budesonide plus iron and calcium supplements. The steroids made me feel sick.  I was supposed to take them on a full stomach but couldn't eat. It was a vicious cycle. I was also totally paranoid about the moon face side effect.  I remember one of the few things I could eat were jelly sweets. Haribo kept me going.

As my tests had been inconclusive although steered me towards Crohn's and the tablets didn't seem to be helping a further test was ordered a Colonoscopy.  I had this on the 29th July 2008. I'd been ill for just under 3 months and lost 2 stone 4lbs in weight.  Thankfully these test gave me answers.  I had Crohn's. It was advanced but could be sorted. I was admitted to hospital again and given intravenous steroids and infliximab.  It was like a miracle.  By day 4 I felt human.  I could sit straighter and I ate my first full meal. The hospital food seemed heavenly. Not rushing to the toilet was amazing.  I stayed in hospital for 8 days and came out 5 lbs heavier and so much healthier.

I went back to work on reduced hours for a couple of weeks and then things went back to normal. For several years I had an infliximab infusions every 8 weeks at the hospital. It really was my wonder drug. About 18 months ago I was moved to azathioprine which is a daily tablet. I see my lovely consultant annually and so far (touch wood) I've been healthy. My last colonoscopy 2 years ago showed some active disease which I was surprised about but it just goes to show that the medication keeps it at bay.

I have very few photos from this time my album skips from 10th May 2008 to 26th July 2008 (A brief but much needed visit to my mum in Devon) and then 25th August 2008. I found the only photo I have of me to share.  It is weird to have no visual reference but camera phones weren't that common and in the grip of illness you don't really stop to take selfies.


I wanted to reassure anyone struggling that things will get better once your diagnosis is confirmed and you get the right medication for you. Things have progressed greatly since 2008 and the health professionals know more about the treatments required. I wish you the very best health and if you have any symptoms do get checked out.  For me my diagnosis was delayed due to my Celiac result.  I still test positive apparently I'm a medical anomaly!!!

For anyone having a colonoscopy I would 100% recommend sedation.  It's not the most pleasant experience but is the best at getting a diagnosis.

Take care

Emma xxx

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11 comments:

  1. Thank you Emma for sharing, I remember talking on the phone and you being in tears, I was too far away to help. An awful ordeal for you and as a Mother so very upsetting, you were so frail. I was so very worried, thank God for your most excellent consultant at the time and the wonder drug. Xxx

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  2. Thank you Emma for sharing, I remember talking on the phone and you being in tears, I was too far away to help. An awful ordeal for you and as a Mother so very upsetting, you were so frail. I was so very worried, thank God for your most excellent consultant at the time and the wonder drug. Xxx

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  3. I'm so sorry you suffered so much before you got an accurate diagnosis and appropriate treatment. It is very generous of you to share your story and it may help someone else who needs it. #kcacols

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  4. Thank you for sharing this. I now nothing about the disease so this has certainly highlighted it to me. Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday

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  5. Thanks for sharing your experiences, a very interesting and informative post! #KCACOLS

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  6. I work with a lot of patients with Chron's and every story is similar in that it takes so long to get diagnosed. My brother in law is a sufferer, he really struggles. It took him years to get a diagnosis, years to get the medication right, only for it to stop working. He had surgery last year and it has got rid of the pain but his symptoms are still awful and he really suffers. It's so hard to watch someone you love suffer. Thanks for sharing #KCACOLS

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  7. Good to hear the medication is keeping it at bay. I don't know much about Chrons but I do know it is an awful thing to live with fingers crossed the medication keeps things settled for you #kcacols

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  8. I wish my brother was alive to read this. He could have been motivated that with Crohn's also you can refine strong and live a life. He had Crohn's for the last 13 years he was under medication and doctors were still deciding as to whether surgery or injection would help him, than a surgery was decided to be held this December but unfortunately he died in his sleep on 16th November.. How can that be? Doctors say maybe cos of cardiac arrest due to crohn's. Can it be true? He was just 31 years.. Everyday I long for an answer.. Was hoping he would live a longer and happy life.

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    1. So very sorry to hear your sad news. I received excellent treatment & have remained well. Take care my lovely.

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    2. So very sorry to hear your sad news. I received excellent treatment & have remained well. Take care my lovely.

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  9. I wish my brother was alive to read this. He could have been motivated that with Crohn's also you can refine strong and live a life. He had Crohn's for the last 13 years he was under medication and doctors were still deciding as to whether surgery or injection would help him, than a surgery was decided to be held this December but unfortunately he died in his sleep on 16th November.. How can that be? Doctors say maybe cos of cardiac arrest due to crohn's. Can it be true? He was just 31 years.. Everyday I long for an answer.. Was hoping he would live a longer and happy life.

    ReplyDelete