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Sharon's life so far

After many months of visiting my gp with symptoms of diorhee( I can't spell that word!) no appetite, sores on my legs, exhaustion, mouth ulcers and pain my GP decided that maybe I didn't have gastro and he would refer me to a gastroenterologist. The public health system in Australia being what it is, I had an appointment about 3 months into the future. I was 17 and living with my parents. They were always complaining about my smelly poo, about me not eating and about me sleeping all the time. One day I came home from work and just collapsed on my bed crying. Mum said "That's it I'm taking you to the hospital now".

I had never been to hospital, oh except that time my brother dared me to swallow a bottle of perfume and I had my stomache pumped. The gastroenterolist looked at me for about 3 minutes and said " Looks like Crohns Disease to me" I stayed in the hospital for about 3 weeks during which time I has numerous tests and treatments. I left weighing 45kg (I'm 168cm tall) but feeling heaps better.

I hadn't heard of Crohns Disease before. My parents knew of only 1 other person who had it and they had died. We were all pretty scared and confused.

My I initial treatment was Prednisolone and sulphasalazine. It made me feel better so I took it and asked no questions.

Since then I have had 3 bowel resections in 1990, 1994 and 1997. Each followed a stressful time in my life..the first 2 returning to work after giving birth and the last after my brother died in a car accident.

I have had numerous abscesses around my anus and massive skin tags there too. I would love to have them removed..one day.

I rebelled and stopped my meds many times and my specialist was like a dad to me. He retired about 8 years ago and I was so upset. He referred me to a new guy but he never seemed to care..he was always telling me it was my depression.

Earlier this year my pain became unbearable and I now take oxycodone regularly. I got myself referred to a new specialist and within 2 months I have had a MRI and been scoped. I have strictures so bad that they can't pass a wire so I am now on the waiting list for surgery. In Tasmania, where I live, the public hospital system is stuffed. So it could be anywhere from 4 weeks to 4 months before I have what they refer to as urgent elective surgery.

I have learnt to live with this disease but I hate it. I wish I was normal. I get very depressed and suffer anxiety.

I haven't worked full time for close to 20 years now and have left jobs because of my Crohns. I'm currently on a government pension and do casual work when its available and I feel up to it.

I have a pretty warped sense of humor and try to stay upbeat. I have 3 lovely kids and a pretty wonderful partner although it took me 40 years and 3 husbands to find him!
That's my story so far.....
 

Crohn's 35

Inactive Account
HI Skinnygal! :bigwave: So glad you found us! Whew, your story is alot like mine, minus 2 kids, but same with the marriages. Sorry of the loss of your brother. You are right though stress is so bad for us. Just everyday stuff can be stressful. I have had 2 resections but you have had more and still not in remission. Have you tried Remicade? It is expensive and I hope it is covered but I think it could help bring your life back.

BTW you dont die because of having crohns, maybe they had a reaction or didnt look after themselves. Yes the more problems you have it does elevate to a higher risk but still very minimal. Make sure you are on enough Vitamin D3 and calcium. Your kids should be on Vitamin D too. Glad you joined us, and we also have a warped sense of humour...it is what gets me through my day at times. I am also on a very mild antidepressant. Called Pristiq ..Google it , it doesnt make me feel weirder than I all ready am ;).
 

xJillx

Your Story Forum Monitor
Hi and welcome to the forum! Boy, you've had a really tough go with your Crohn's. I can understand why you get down and wish you were normal. Life can be tough, but it is even more challenging at times with Crohn's. Good thing you now have Mr. Right along with your kids as a support system. Granted, you have us - day or night - someone is here for ya!
 

David

Co-Founder
Location
Naples, Florida
Hi Sharon and welcome!

You poor thing, you've been through so much :( Good for you at least maintaining a good sense of humor!

Couple quick questions :)

1. How often do you get B12 injections and what was your serum level last time it was checked?

2. What dose of Vitamin D do you take and what was your serum level last time it was checked?

All my best to you! I hope you become a regular part of the community here :)
 
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