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 that you've gone through so much crap before being diagnosed. I didn't get any help at all from dietians when I left hospital. Someone suggested that I keep a diary and note my reaction to foods/drinks/situations etc. That was how I found that I couldn't eat onions (in any way shape or form) and various other foods including fizzy drinks. The strange thing is before I was diagnosed I ate very little bread but now it's my main food source. I hope you have some more positive days in the future but please be aware there will be days that you feel very down and we will be here for you. Dawn x

Hi Jo, Sounds like you have had a horrendous time of it.  I have been diagnosed 5 years now, cant believe its been that long.

I had surgery pretty much straight after being diagnosed basically beacuse it took them 10 years to diagnose me.
I have been on budesonide in the past it did absolutely nothing for me, I always required the strong stuff (prednisolone). I believe the budesonide doesnt have such severe side effects which is a bonus for you it basically targets where the ulcers are.  I am surprised your medical team havent spoken to you about the disease modifying medications although they may do this at your next consultation.
As for diet, this is very personal and what effects one may not upset anothers stomach.

Crohn's is a very individualised disease and effects everyone completely differently, for 2 years after my surgery and trying different things i.e medication I am now on Infliximab 8 weekly which I have to say works wonders but this is generally for moderate to severe crohn's.  I still work and lead a normal life and go on holiday.
Try and not let the disease get you down because it can be very manageable.
They dont know what causes crohn's it is an autoimmune disease and they are still doing research into it, there are many autoimmune diseases out there and although it can be bad it can also be managed.
I have also heard that people go into remission whilst pregnant then once they've delivered they flare up.
Good luck and if you need to know anything dont hesitate to ask.

Gayle x

Jo,

I'v also taken Budesonide and did not noticed any side effects, apparently it is more gentle on the system, but one point I also put on weight, it made me feel better so I ate more!!!!

Gayle,

Your answer was very interesting as I seem to have followed the same path, late diagnosis, followed swiftly by surgery, and budesonide, and also now infliximab, having recently started.  Due another dose tomorrow, and have noticed the symptoms creeping back. It has caused a rash over my face and neck and I'm being refered to a dermatologist.  Crazy I know but looking forward to tomorrow and on a good note England arn't playing until the evening, so Hubby is coming to sit with me - lol

Best wishes

Julie

Thanks for your reply, I hope you get on ok tomorrow. Nothing worse than sitting around waiting.
Good luck. x