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Newbie: my story so far

Hello,

I've stumbled upon this forum after trying to do some research.

I've had bowel troubles from ever since I can remember, I first went to see a go ten years ago when I was 16 about tummy pains and problems but they just misdiagnosed this as period pains.

Over the last ten years my gp just says this is IBS and there is nothing you can do. About 3 years ago my pains/cramps/diarrhoea were getting so bad it was basically ruining my life, after being told there was nothing wrong with me I kept going back and finally saw a specialist they ran multiple tests and I also had a colonoscopy last year.

After tests and the colonoscopy they found nothing and told me there was nothing wrong with me. Over the last couple of months my symptoms have got so bad I'm taking immodium everyday weather I have diarrhoea or not, I find this is the only thing that seems to help prevent cramps. The drs won't help me anymore but I'm still in agonising pain every day. I've accepted that this will probably be my quality of life from now on as drs won't/can't do anything to help.

I thought I'd join to see if anyone has experienced anything similar with doctors giving up on them.

I'm female, 26 and live in the uk.

Thanks guys!
 

nogutsnoglory

Moderator
Glad you found us and I'm sorry you are struggling. There are posts here from users who found their doctors were condescending and unhelpful. It's always good to seek out a doctor you are comfortable with and who is working with and for you.

Check out our undiagnosed club, you will find many with similar pains but no diagnosis or clue as to what their ailment is. http://www.crohnsforum.com/forumdisplay.php?f=75
 

rygon

Moderator
you may find the food and diet section of this forum of great help as well.

There are a fair few people on this forum who do not take any medicine and rely on diet alone to regulate their disease. Even the people who do have to take medicine do find their diet plays an important on their health
 
Thank you,

I'm going to trawl through all the threads tomorrow at some point and have a good read.

I've been on the FODMAPs diet before which is supposed to help but think I need to do more research or try it longer.

Thanks guys
 
You'll find a lot of people here who got dismissed by their doctors, many who were later diagnosed with IBD (it took years for me to get diagnosed), but there are also many more who have to go a long time with no diagnosis - and I know this can sometimes seem like the worst situation, as with no diagnosis some doctors are reluctant to try treatments and are more likely to dismiss your symptoms - as if the lack of diagnosis somehow means your symptoms cannot be that bad! If you ever get frustrated with your situation, do post for support in the Undiagnosed thread or start a thread of your own. Even those of us who are diagnosed now often spent a long time without a diagnosis and understand what you're going through.


If you can't get any further with a diagnosis, the best thing you can probably do is try to find a doctor who takes your symptoms seriously, no matter what the cause, and who will work with you to get your symptoms under control. There are doctors out there who will help you, they seem to be a minority though, so don't be put off if you have to endure a few visits to unhelpful doctors before you manage to find one who's any good.

While most medications used for Crohn's have such severe side effects that it's not really ok to use them in cases where Crohn's has not been diagnosed, you might find some advice in the treatment section of this forum on things like pain relief medications. You may well already have tried them, but there are a few options besides Immodium for helping with diarrhoea if the Immodium's not working well - I find Lomotil (co-phenotrope) to be stronger than Immodium and it's not got too many side effects and can be used to treat IBS or diarrhoea from other causes besides Crohn's.

I hope you'll get some answers eventually and find ways to relieve your symptoms.
 
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