Hello, welcome to the forum. Im sorry you've had such a rough time. You've come to the right place for some help and support though, everyone here is friendly and supportive and will always help as much as we can with anything.
I started getting symptoms when I was 15 but wasnt diagnosed until just before I turned 20. I had cramps every time I ate, poor appetite, nausea and I was really skinny and underweight, as well as having periods of very sharp, intense stomach pain. I had ultrasounds, a barium meal x-ray, blood tests for everything you can think of, but nothing showed up. I was then just given meds for IBS and/or painkillers and told they didnt know what else to do. I finally got my MRI in august last year, then a colonoscopy last December.
Meds wise I had steroids too, Prednisolone followed by entocort and then surgery 6 weeks ago. This was because the prolonged diagnosis meant that the disease had caused scarring they couldnt treat with medication.
Are you getting any side effects from the prednisolone? I know you said you dont have a plan in place yet but have they given you a follow up appointment yet? In this appointment I would ask about more long term medications. Some of them like Asacol can take time to build up to a level that will help you so the sooner you start them the sooner they can start to have an effect.
Dont be embarrassed to talk about your symptoms here. Everyone is here to help and support you. We are all in the same boat and understand how horrid the disease and its symptoms can be. No one here will judge you or think any less of you for what you tell us, so please feel free to share as much as you feel comfortable with, even if sometimes you just need to have a big long rant. This can all be a lot to handle and sometimes the pressure is just too much on your own. In these times know that we are here to make it at least a little easier.
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