Introduction to my story....

Hi I'm new here and not sure where to start. I was rushed to intensive care 2 years ago with problems with duodenal ulcers in my stomach, myself and my family were told I had cancer (twice) and to get my affairs in order, only then to be told it wasn't to cut a long story short 2!years on and practically being bed bound for 2 years that they think it's crohns, I cannot have the camara up my bottom due to the skin around that area being so infected due to the crohns they are trying to treat it with steroids but it's just not happening, I've lost 4 stone in weight in such a short amount of time, but glad to say it's going back on very slowly, I also have copd which is a lung condition so can't breathe when I do anything, I cannot get to grips with the crohns I leave out foods that I think is going to make it worse but it doesn't work doesn't seem to matter what I eat I'm always left running to loo, bloated feeling and even worse like I want to go loo constantly even when I've been. just really struggling at the mo and thought it would help to talk to others in same position as people that don't have this don't understand how horrible it is. I have other health problems but don't want to bore everyone first time on here. Thank you for listening diane

:welcome: Glad you found us! Tons of info on here and personal experiences. Hoping you can get some treatment soon. Sounds horrible what you are going through

what a really awful time you've had.You'll find lots of understanding and support on the forum and we all appreciate you joining us.Every ones symptoms, diagnosis and meds.are different but we are all in this together and we are interested in your input.Please keep us up to date and feel free to have a good old moan anytime you feel like it.I hope you start to feel better soon.

Thank u everyone's so nice here and it's nice to talk to others that now hoe u feel even though everyone's different

Hello and :welcome: sorry you are having such a hard time sending :ghug:your way.

Hi dianebaker1964, sorry to hear about everything you've been going through.

So you're still in the process of being diagnosed since they cannot do a colonoscopy? Have they done an upper endoscopy, CT scan, MRI or even a pill cam to try and find out what all is going on so you can get a diagnosis and then move onto proper treatment? What steroids are they using (Prednisone?) and what dose? Since it doesn't seem to be working, what's your doctor's plan as far as tests and treatment goes?

We welcome, Diane. Sending you (((hugs))).

Jennifer said:

Hi dianebaker1964, sorry to hear about everything you've been going through.

So you're still in the process of being diagnosed since they cannot do a colonoscopy? Have they done an upper endoscopy, CT scan, MRI or even a pill cam to try and find out what all is going on so you can get a diagnosis and then move onto proper treatment? What steroids are they using (Prednisone?) and what dose? Since it doesn't seem to be working, what's your doctor's plan as far as tests and treatment goes?

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Yes I've had ct scans, MRI scans also the camara you have to swallow 4 times, have been on prednosline (sorry about spelling) I was on 40mg per day which I'm now down to 20mg per day, I have had smear tests and biopsys in vaginal area which is where the crohns was first picked up as it's affecting that area very badly, the ski. Doctor I see for that is the one that said it's definitely crohns and got my astro doctore to get me on the steroids, they have eased the problem in vaginal area but my stomach is still bad, diarriaoh, bloating, pain, terrible weight lose. I'm waiting for app to see my doctor but haven't seen him for a while but I've had awful trouble with my hospital over treatment I've had, I was told I had cancer twice before they had got results back, I have 7 duodenal ulcers which caused me to nearly die 2 years ago and since then I have been so ill and where the crohns diagnosis came about as it was showing up on scans and biopsys I'd had

Hope you get an appointment soon. Steroids are only meant for short term and it definitely sounds like you need something for maintenance and that helps to prevent the inflammation rather than just treating it when it comes. Keep us posted. :hug: