Dd 12, possible inflammable bowel disease/Chrohns

[chickydee]

Hi, My daughter has been ill since nov last year, symptoms are bloody diarrhoea, severe cramps, constant sickness, bad taste in moouth, extreme tiredness, weight loss...
So far she has been seen by 4 gp's at the surgery, and 2 hospital specialists, currently we are waiting to have a barium x ray (wednesday this week), and still waitning for app's for colonoscopy and endoscopy.
I am so worried, altho the gp seems sure it's inflammable bowel disease, i am so cross we have to wait such a long time for the tests, and she is suffering so much,EVERY day is the same, she is in the loo for half an hour every morning, feels sick, wont eat, and is losing so much weight.

Does anyone have any experience of a child with this?
She is only 12, first yr at high school, and i fear she is losing out on so much, socially as well as educationallly, and i am terrified she will end up with chronic fatigue syndrome due to the sheer exhaustion.
I have to keep her spirits up, she is very down, but i am desperately worried.
Any one have any thoughts?

I should add, she DOES go to school, but it takes so much out of her that she MIGHT manage 2 days, then has a day off. I have to take her and pick her up as she cant walk far.

Hi there.

My DH suffered for many years with ulcerative colitis. He now does voluntary work for the IA.

I have messengered him at work with the thread (I hope you don't mind) and he has said when he gets home (has to take DS1 to guitar lesson first before tea) he will let you have some info on forums etc and hopefully can put you in touch with the right people to speak who are in similar circumstances.

For your DD

DS1 will be 12 in June and is in his first year at high school so I can see where you are coming from, it must be so hard for her.

Your poor DD, and poor you. No experience as a child but I know exactly what she's going through

What she really needs is a fast diagnosis. Can you kick up a fuss and get her endoscopy faster?

If it is inflammatory (not inflammable) bowel disease she will probably be put on steroids to deal with the immediate flare-up. Then once it is under control she will have medication to keep it that way. In my case, as soon as the steroids kicked in I felt normal again.

So make a fuss, get her seen as soon as you can.

Hi chikydee. What a terrible shame for your daughter. My DH was diagnosed with Chrons last year. Pretty much the same symptoms you are describing. So I really feel for you all and you have my sympathy.
I know its hard waiting for all of these appointments which take forever, but it sounds like things are progressing. Hopefully the Barium meal results will be through quite quickly and she'll be started on some treatment. I would contact your GP and ask them to phone the hospital to try and hurry things up though. (An urgent referal I think it's called). Failing that you could call the relevant department yourself and let the secretary now that you would be happy to accept a short notice appointment ie if someone further up the list cancels the secretary might phone you to take their place at short notice.
I know it's not much but i hope this helps. Hopefully once she is on treatment you will see a big improvement. Good luck and i will be thinking of you.

Thank you all for your kind words and thoughts, it means alot.
bellavita thanks, tell your hubby thanks too, all help greatfully recieved!
She has had an ok day today, stayed at school all day so thats a positive!!
I have rung and rung the secretary of the consultant dealing with her saying we need to be seen, but i have been ignored, but we are seeing her again tomorrow so i will not leave her office til the app's are sorted!

Thanks all xx

Hope everything goes ok tomorrow

Chickydee,
One of the frustrating things about these sorts of illnesses is that many things can cause these symptoms, that's why it can take so long to get a diagnosis. The drugs used to treat IBD are very powerful and do have some pretty nasty side effects if taken for too long so its always a good idea to confirm IBD is the cause. Push to get these tests done as soon as you can, the earlier treatment starts the sooner your daughters symptoms will improve.

The good news is that if IBD is confirmed it can usually be brought into remission with corticosteroids and kept that way with 5-ASA drugs. Treatments for IBD are improving all the time and there are lots of other medications that can be used these days too, they had just started to be used and were still experimental when I had my surgery, but they are in fairly common usage now. There is a lot of support available should it turn out to be IBD and you might find these useful now to gather some information, NACC is an organization that provides support for sufferers of IBD and CICRA is a charity aimed at providing support for children with IBD (and, importantly, their parents too), both have lots of info on their websites.

Hope you get some answers soon and your daughter gets the treatment she needs.

Bellavita's other/better half

thanks very much bellavita's oh!! I am so thankful for the help and support, it means alot. I will def check out those sites.
I am worried that she will have irrepairable damage done by now, but wont know that til they do the tests.

Thanks all so very much xx

well we had an appointment today with the consulatant at the hospital, and she has given my daughter some anti inflammatry tablets, to go with the pain killers she is on, that now makes 10 tablets a day and she is going to chase up the appointmants for the colonoscopy and endoscopy, we have a barium x ray tomorro.
sigh so we just carry on, being tired, and totally fed up,
I am going to look at those sites bellavita's oh put on.
Thanks to all of you xx

Blimey, I bet she feels like she is rattling with all those tablets

At least the consultant is going to chase up the appointments for you - keep chasing her though if nothing forthcoming.

Good luck with the x-ray tomorrow.

Chicky, has she been tested for celiac/gluten intolerance?

Coz if this is gluten-related, the antinflammatories only cover up the symptoms and will not make her better, and yes, she could acquire irreversible damage to her health.

They are unlikely to see microscopic damage on x-ray, let's hope endo might involve biopsy - if not, then you must ask for it.

Hi Chickydee
My DH was diagnosed with Crohn's about 6 years ago (he was in and out of hospital for quite a bit). He is on steriods and Pentasa. However, by far the absolute best thing we have done in the last 6 years to control the symptoms is going gluten free and (mostly) dairy free. By that i mean, he doesn't have bread and pasta -- though Sainsburys now do the Free From range (white bread, croissants, hot cross buns and pasta) so no real suffering there and instead of "normal" yoghurts, he has the Provamel or Alpro brands (again, sold in Sainsburys) and he also has soya milk instead of normal milk.

The other thing to think about is helping your daughter's immune system because things like steroids are immunosuppresants and you don't want her to run the risk of picking something up because her immune system is low. The one i can recommend whole heartedly on this is JUICING. By this i mean, go on Amazon, look up the Philips Juicer and if you can afford it (i promise you, it is worth it), buy it - it comes free with Jason Vale's juicing book. You can literally chuck in whole fruits/veg) in it (apples, pears, kiwis, carrots)without peeling or chopping them. It is better than eating them because it doesn't put pressure on the gut to break down the food and the live enzymes are absorbed by the body very quickly. I have been truly converted by this - my whole family has not had a cold since juicing in Nov/Dec -- even when all the lurrgies were around us in work and school.

I really sympathise esp. as it is crap at the start/diagnosis phase as you can't see the light at the end of the tunnel. Once you feel you can do things to help your DD, you will feel better about it. (I just baked a whole tray of gluten free brownies last night, which literally my officemates are fighting over - hahaha). DH having been hospitalised 6x in two years between 2001-2003 for Crohn's has not been hospitalised for that since. We have 2 kids, ages 5 and 3. Please take heart that there will be things you can do to make it better. DH has not had surgery for it. He still has outpatients etc. for it though.

Hope that helps.

My sympathy Chickydee.
My sister was 13 when she was disgnosed with Crohns.

Hi all, thanks for all the advice, i will look for that juicer page62, thanks. I am wary of forcing her to give up things at the mo, she likes milk etc, as i dont want her any more miserable than she already is, but will certainly think some more about it.
We went for the barium meal and x ray yesterday, which was horrendous, it took 2 hours for me to persuade her to drink the barium stuff, she was sick, and it was so hard for her. But we got there in the end, so thats over with, she was crying this morning, not wanting to go to school, but she did go cos i feel if she can she should, just to keep up with her freinds and work. but she just wants to be with me, which makes me feel bad because of course i want to keep her safe with me, but i have to think of her all round wellfare.

She is finding it hard to take the tablets, she isn't great with them anywasy, but the new ones altho they do come in liquid form, they are apparently tolerated less well, so i dont know what to do for the best!
These new tablets could kill off some white blood cells so her immune system will suffer there,so i am def gonna look at the juicer idea!

If anyone has any more ideas, suggestions or pearls of wisdon, i am happy to hear them!
Thanks again all of you for the help and support xx

Page62, can i just ask, is the juicer model number HR1861?
I want to be sure to get the right one!

sorry for delayed response, i was out in meetings!
yes, it's the HR1861 and if you buy the one from amazon, it will come with that jason vale book, The Juice Master Keeping it Simple: Over 100 juices etc.
I would also buy SuperJuice: Juicing for Health and Healing book.

Hope you find it as helpful as we have found it.

I would definitely go gluten free though there are loads of things out there now that tastes just as good as normal bread and pasta. I kept giving my husband toast before and it was one of the worst things i could have given him. As i said, he still tolerates the occasional cheese well, so perhaps the dairy free thing is not as bad. If you look at sainsburys and type "free From", you will see the amount of products there so she doesn't feel like she is missing out. As i said, just made the most amazing brownies used a recipe from Nora's Dinners (Jamie oliver's school dinner lady book) but used gluten free flour (sainsburys again) instead of normal flour and perfectly ok.

Best of Luck!

chickydee, if going gluten-free makes her feel better, then she won't be any more miserable, she is likely to be a lot less miserable - don't let that consideration stop you from suggesting it to her.

After all, if she were eating poison, and was being made sick by it but really liked it, you'd have no hesitation in stopping her from eating the poison, would you? Not much difference if she has a severe intolerance.

How is your dd doing chickydee?

Hi, Thanks for asking, she had the colonoscopy and endoscopy yesterday, and she does have ulcerative colitis.
She is now on 10 steroids a day for a week, then 9 a day, then 8 etc etc, for the next 10 weeks or so to get it settled down.
Seeing consultant tomorro, so she will hopefully give me more advice and info.
Thanks to you all for you help and advice!
xx

Am glad she has actually been diagnosed now so at least you can move forward.

DH has just asked me to point you in the direction of NACC.

There is also CICRA.

If you need any assistance whatsoever, please ask

Thanks Bellavita,
I have sent off to join NACC, got quite a lot of info from the hospital, just starting to come to terms with it now.
She has gone back to school today.Just half days for now, as she is so very tired,but the school are good, they have a girl in yr11 who has the same thing, and is off at the mo, quite unwell.
I am considering applying for DLA for her, altho i know that wont be easy, but at the mo i am looking for ways to pay my HUGE gas bill!!! Had to have the heating on so much to keep her warm, and now my bill is £519, not good!!!

Thanks for all your help and advice.
xx

Hi. My ds is 12 and has just been diagnosed with UC. Feel devastated as DH had it until he had surgery and a permenent stoma. Was really hoping that it was not this as he did not have all the symtoms and dr did after the colonsocopy that he was surprised he did not have more symptoms.Didn't help when dr said he may end up with an op but then that would cure it - but my DH was married and had 3 kids before he had the stoma; not the same for a nearly teen. Just wondered how other kids who have been diagnosed at a similar age have fared. We also got given loads of stuff to read from NACC but much of it is in too much detail for him to currently take in but the stuff on the circr website for kids is too young.