A new year a new start you must be joking!!!!!

Submitted by shell74 on Mon, 03/01/2010 - 08:58.

Well as I sat in my parents house on new years eve with my husband Ste, and our three children and my parents, the clock struck 12 and I raised my glass of champagne and said "the only hospital i'll see in2010 is for appointments only" two days later where was I in hospital.

I woke up on new years day in so much pain,and been violently sick, that we thought i may have a burst appendix but because I did not have a temp I decided to wait to see what happened. By the monday I could not keep anything down and the dr sent me straight to the womens health unit in our village hospital.

I was put on a drip and had xrays and scans to see if my appendix had burst but because it was not clear they decided to use a camera through my tummy button, Thankfully my appendix were ok but my overies were not which I had left after my hystorectomy when i was 28. They sent me home after a week still in pain and still been sick. I went back to the drs who put me on petherdine which was awful.

After a week on that I ended up back in hospital with the same pain, this time I had a ct scan which showed that I have crohns amongst other things. I stayed in for another week and then came home worn out and still on strong pain killers, and on a elemental diet. Luckly the kids egid has been behaving so I have not had to contened with that as well.

Feb started and after a trip to gosh were I met Helen and Ben, I was readmitted to hospital for even more tests,Including scopes and biopsoes,I have also been told now that I also have endometriosis as well as crohns.

The pain is really bad and I can really feel for our children with eosinophilic illness as I feel I truley know the pain they are in.

As of today 1/03/10 we are getting ready for Alexandra_grace to go into gosh for scopes this week, Josh is food trailing but his main diet is still the EO28 extra callum has been on a increased dose of azathoprine which has made him sick. Ste is been a house husband and still doing his job in the army, and I am waiting for my scope results and a readmission into hospital.

So this so far has been the start of my new year, and I am still laughing and smiling and still coping with three children with EE,EC and ED.

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Submitted by Kitty on Tue, 03/02/2010 - 10:00.

hi michelle

what a nightmare you have had. I don't know how you do it - looking after 3 unwell children and being ill yourself. i'm guessing your husband must be away lots too. i hope they can treat you and make you more comfortable soon.

i was just wondering, do you know if you can have more than 1 type of EGID? the doctors have always suggested my son has it in his colon (diarhoea and mucus, pain etc) but he's been having some problems with choking (but this is improving) and food avoidance and they raised a question about EE. I wasn't sure if you can have two types or if it brings into question the original diagnosis?

Does your son with EE ever have problems with choking?

Thanks and I hope you are better soon,

Kitty

Submitted by shell74 on Wed, 03/24/2010 - 12:04.

Hi Kitty, so sorry for delay in my reply I have been back in hospital

Yes you can have more than one type of egid. Callum has ee,ec and ed, josh has ec and ed and alexandra had ec waiting for new scope results. Often children with EE develop ec also it can appear in other organs such as the bladder etc.

Callum has really bad problems with his ee, he says when it is flaring that he has a massive lump in his throat and that it feels like it is on fire, sometimes he says it feels like he is been stranggled.

I hope this helps,

love from,

Michelle.xx

Submitted by Kitty on Thu, 03/25/2010 - 12:41.

Hi Michelle

Thanks for replying. Thanks for letting me know you can have more than 1 type. He hasn't choked for 4 weeks now so i'm hoping things are improving. Will see if it starts happening again or not.

Poor Callum, that must be terrifying. He must be scared to eat. I hope he improves soon. Might he, and your other 2, grow out of their EGID? we were told most grow out of it at 7-9 years but there are lots of older kids with it on FABED?

I can't tell if my son is afraid to eat at times or if he is just being a typical 3 year old that is very tired (he doesn't sleep well). Every mealtime (except breakfast as his fav food is dried cereal) is a battle and he is so fussy, not just about the type of food he has but the way it looks or if bits are broken/smudged etc. I want to help him enjoy mealtimes but I don't know where to begin. Hoping to get appointment with the GOSH feeding team soon.

So sorry you have been in hospital again. I hope you are better soon.

Thanks again and best wishes,

Kitty

Submitted by Anonymous on Mon, 03/29/2010 - 09:04.

Hi Kitty,

We have always been told by DR E that the children will have this condition long term our local consultant has also told us that its a long term illness which can go into remmission, our eldest Josh has been in remmission before for 18months now he has been in the worse flare hes had ,this flare has lasted over a year. Callum only eats when his throat is not blocked thats why he has the G-peg aswell for failing to thrive. We use to let the kids play with the food so that they got use to the different textures we found that it helped callum as some smells of food send him loopy. we never had any help from anybody on the food front as when our children were little gosh did not have a feeding team and we knew more than the dieticians. Try and keep calm at meal times I use leave bowels of dried fruit and crisps, cereals etc around the house so the kids use to touch them and play with them then they would decide to see if they could eat them. I know 18yr olds with this illness who have had it since birth.

All the best,

michelle. xx

Submitted by Kitty on Mon, 03/29/2010 - 19:10.

Thanks Michelle

I will keep putting food out in bowls and hope things get easier.

It's so unfair that your Josh has had a flare up for over a year. I can't imagine what that must be like for him, for all of you. EGID is a really horrible unfair illness.

I hope things improve for you all soon,

Kitty