Hi there
Im new to this website, and to Crohns. Im a 36 year old mother of a 2 1/2 year old son, and my symptons all showed about 5 months after Id had my son. Up until that point I was very fit and very healthy.

I was 8 months pregnant and still on the squash courts and playing golf, I was 66 kilo's and still in a size 12 and very very happy. About 2 weeks before Ben was born I had routine bloods that showed I was anaemic - on the scale of 1 -16, I was 7, and promptly got taken into hospital for IV Blood transfusion, they managed to get me up to 10 and that enabled me to go through my birth plan as Id hoped.

Ben arrived safe and well, and everything was great, then I slowly started losing weight, I couldnt feed him, I felt rubbish, but more than just baby rubbish there was something else and I couldnt put my finger on it.

Back when I was 16 I had coeliac disease, and had a very unhappy time with it, but by the time I was 21, Id grown out of it, or so I was told by the consultant, and I returned to a normal diet, and my very happy fit lifestyle. I mentioned this to my new GP , who did bloods and It had shown up again, so I started a gluten free diet much to my dismay. One year on I felt no better, although I had gained weight, but the symptons were still the same, bloated, severe cramps, bouts of loose but not diarhoea, but totally uncontrolable. I went private - the consultant did both gastroscopy and endoscopy and it showed coeliac disease, nothing else. He checked for lymphoma - nothing, and then did a dexiscan, and said I had Osteopenia, I had no calcium in my body - another issue!

I was discharged by him and told to get on with it.
Late last year my GP finally got me an NHS Appointment for a colonscopy, and I was then told I had 2 small ulcers in my illeum that were to be biopsied, I got my results confirmed last week!!!! - Crohns disease.

Nobody can tell me how bad it is
Nobody can tell me why this happened or how, what my future holds - Ive been given drugs - Budesonide, which I need to take for the next 3 months and then go for review at the end of July to see if it aleviates the issues I still have
Does anyone else take this drug? - what does it do to you?, Ive read the leaflet that go's with it.

The plus side is before all this kicked off I have put on weight - and actually look a sensible size now, and am a great deal healthier, besides all the tummy trouble.

Anyone out there doing gluten free with crohns, is there anything else I should avoid, the hospital arent interested in looking into further allergies, just give her the drugs and get on with it.

Be good to hear from anyone
Thanks
Jo

Hi Jo

Sorry to hear about the problems you've been having and the 'misdiagnosis' times, but hopefully you can now see some reasoning behind your symptoms.

It is pretty common to be wheat intolerant with colitis, wheat is my main trigger.  It's not easy to follow the usually recommended low residue diet (ie no fruit, little veg) when you also can't eat bread etc!  I find it difficult to find recipes that are free from wheat AND lots of veggies.

Unfortunately there's no definite test to say how bad your Crohn's is, and whether you'll stay with mild symptoms or may even need an operation.  I found that the hardest to take when I was diagnosed in Sep 09.  The first thing I thought was I would need an op, fortunately mine was caught early and should be easily controlled by medication.

They also won't know why you got it, they don't really know why people get Crohn's.  Some of it is classed as hereditary, some the Western lifestyle, some may just be genes.  They're working more on controlling the disease than finding out why people get it.  My dad had Crohn's since his mid 20s and my mum's sister got it a few years ago, but even when I told the specialist this they said it's not guaranteed I would have got it anyway.  My brother hasn't, for example.

Did the hospital do blood tests on you?  If so they will be able to find out about your low calcium and should start you on calcium supplements.  The most common one is Calceos.  If they haven't already put you on it I would ask for it, they put me on it even before doing the blood tests because it's a common deficiency with Crohn's, your body can't absorb certain vitamins and minerals.  

I don't think it's that they're not interested in getting you well, they need to see if the meds work and then see how you do.  I can understand you feeling that way though because I felt the same when I got diagnosed - totally alone and not knowing what was going to happen to me.  

The Budesonide will be to settle your symptoms and try to get you as well as possible.  When you go back they will no doubt put you on a different med to try and control the symptoms long term.  They should regularly review you and if you don't feel well you should be able to call and get an appointment for a review.

I hope this helps and please do keep us updated on your condition.

Debbie

Hi Debbie

Thanks for your reply, I started the budesomide, but 3 days into it felt absolutely appalling, I think I had the worse bout of depression ever, that rendered me completely incapable of looking after Ben, I just dissolved into a gibbering wreck on the sofa, and had absolutely no appetite for a week. (Didnt lose any weight mind!)

I rang the consultant and spoke to his secretary to tell him Id stopped taking it, we played telephone tag for days, and then I gave up, I received a letter from him saying I needed to go to my GP as my blood results were in, and that my iron and folic acid were low - go get a prescription. Nothing about the drugs. And then today I receive a letter saying they've cancelled my follow up in July and moved it to September.

My GP says let the hospital manage the crohns as its more there remit, but how can I manage me when they cancel appointments and dont return calls???? AAAAAGGHHH!!!!

Thing is, I was actually better off pre iron than I am now - talk about bathroom trips!