Eosinophilic gastroenteritis

[tjb1986]

I suffer with a condition stated above which is rare and at the moment very unwell I am in the uk does anyone else suffer with this rare condition? Or have any tips on medication or remedies that can control te pain im on a lot of medication and steriods which cause lots of side effects.

[bgol01]

Have a look for this charity website, FABED, they are excellent

[pennie FABED]

I also have this condition, it is rare in adults, the FABED site is helpful but deals mainly with children. Don't despair, it takes a while to settle, I wonder what medication you are on and are you under a hospital consultant? The top man is a Prof Stephen Attwood who is Newcastle based. You can go to see him but need a referral, this can be organised. I am on Montelucast tabs twice a day, they are asthma drugs and not licensed for use with our condition so GP's are tricky about prescribing them but hospital consultants are able to and then the GP tend to fall in line. Mine was diagnosed quickly but took months to settle. I only ate soft foods when it was bad and no meat at all. At the moment I am well. If I can help at all please respond. Good luck!

[shellsteve74 FABED in reply to pennie]

Hi Pennie the co founder of FABED has been diagnosed with EGID in the Autumn of last year, we are in the process of having a new website and Forum designed. Over the last year there has been a vast increase in Adults been diagnosed with EGID.

[shellsteve74 FABED]

A tip which have learnt in the last 18years is to take each day as it comes and you control the condition and not let the condition control you.

[pennie FABED]

Hi Shell, great to hear from you. I am so sorry to hear about the founder's diagnosis, I think that the increase in numbers is because it is now because there is more awareness, although very patchy, and therefore more cases diagnosed. The number of consultants who know or are interested in the condition is limited but hopefully this will increase. I will be looking for a consultant soon as the chap I have to thank for finding it, he recognised the condition by the state of my eosophagus, is now only practising privately and is going I to full retirement soon. He is very interested in EGID and I wonder if he may help in an advisory capacity on line, adults only, would this be of interest, I am happy to ask him.

Do you know how Amy is doing last I heard she was greatly improved but that was quite awhile ago?

A register of interested consultants would be great, I wonder if that is possible. Prof Attwood might be up for that. He sent me a piece of text years ago now that was for Fabed, did you ever receive it from him? I haven't seen him for ages as really I am okay, it is the other damage to the eosophagus that gives me more problems!

I hope you and your family are improving

All the best and if I can help in anyway please let me know

Pennie

[bradshawcorinne FABED Volunteer]

Fabed is a great Charity and isn't just children it does have adults aswell. It supports the whole family and it's nice to know your not alone. Our daughter has it and although she got it as a child is an adult now.

She sees consultants in Manchester and London so there are adult Consultants that are now aware of Egid and the way forward to help with symptoms.

It can be very hard when first diagnosed and when you are first finding a doctor who knows of it even but with support from others and support like Fabed you can feel back in control with it.

[jonarnott82]

I am on a concoction of prescribed drugs. All of which were prescribed via my Gastro and Allergy specialists at Ninewells Hospital. Like many of us I am taking Montelukast (5mg) twice a day, I also have Lansoprazole (15mg) in the morning and Fexofenadine (180mg) before going to bed, Mometasone Furoate (Nasonex) nasal spray two squirts per nostril, twice per day (morning and before bed) and finally Gaviscon after eating and before bed. It seems a lot but not overly difficult once you get in to a routine.

As a result of the above continued treatment I have been well and able to eat anything I like for Almost 2 full years now, though I have developed mental issues with eating, especially in public and unfamiliar situations, which I am still learning to cope with. This mental illness just means I am still scared of some foods and can be quite picky about texture and whether the food will "mulch" or not and take quite come time eating compared to "well" people.

I don't think this will ever go away but I am learning / have learnt to deal with it. The thing I find best is to eat small and often. I never used to be a fan of buffet style eating but it works well for me now and means i can maintain and actually put on weight if I really push myself.

Hope that helps or at least gives you a bit of hope that all is not lost and life does go on.

All the best

Jon

P.S. I forgot to mention. I was on a course of steroids for around a year after medical investigations to a) stop me having have my oesophagus stretched b) see if it would resolve the inflamation and enable "normal" eating. It worked, and haven't had to return to steroids since fully coming off them in January 2013. There were no real side effects to speak of, other than greasy skin, and weight loss, and once in a blue moon, stomach cramps. Though i think the cramps were more to do with not eating much solids, as I was on prescribed Ensure Plus Fruit Juice drinks.

[pennie FABED]

I am also on Montelucast which has proved to be fantastic. Re eating, I understand how you feel and little and often is good but I did have CBT to help accept a variety of gastro problems and it has worked brilliantly, I am quite able to manage now re food but am still wary of certain things and just avoid them, the CBT may help you