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Does my daughter have Crohns like me?

I know you can't answer that so don't bothering trying, I just need to vent.
I'm now 40 but when I was 13, I was diagnosed with a duodenal ulcer. Oooh, the pain of it is "burned" in my memory. A good lay down for an hour seemed to fix it when it decided to raise it's head. Fast forward to me at 26 and I had just had my one and only child and anal fissures, diarrhoea, vomiting, pain, you know the drill, haunted me for a whole year. My doctor kept saying, come back if it gets any worse. When I could no longer function and lift my weary dehydrated, vomit and diarrhea ravaged body off the bed except to run to the toilet, my good old mother stepped in and forced the doctor to DO SOMETHING. It was found to be Crohn's in the oesophagus and small bowel. It's all good for now, no complaints really, the odd toilet trip and abdominal cramping but you get used to that. I sincerely believe that the duodenal ulcer event and crohn's event were one and the same condition.

Fast forward 14 years and my 14 year old daughter has had abdominal problems for the last year.
She complains of a "rock" that sits inside her stomach, just under her rib cage. I know the "rock", I had it. She complains of it "aching". I know the ache. Every month, sometimes twice a month, she is down with what we "assume" are viruses which cause headaches, fever, vomiting and diarrhea. I don't know if the two are associated because sometimes she has the abdominal pain/burn/rock at the same time and sometimes she doesn't. Problem is, I can't get a doctor to take the matter seriously. I suggested to one doctor, that I had Crohns and maybe it was possible that she did too and that she is the same age as I was when I was first diagnosed with stomach problems.

The doctor scoffed at me and told me this wasn't likely.
I wanted to deck him and tell him to WAKE UP smart a** and take it into consideration.
I am taking her to a new doctor tomorrow and I'm going to try and arrange for a barium meal for her. She has had an ultrasound which showed no abnormalities. Her white blood count was normal. She has tested negative to H. Pylori.

In the meantime, she is home, off school, AGAIN, with abdominal pain and threatening to throw up. She is missing so much school. She will be good for a week or two and the process will repeat. What to do? Anyone? Are there any new BLOOD tests out there that I should know about so I can ask this new doctor to perform tomorrow. In the meantime, what "nausea" treatment can I give her. I'm considering buying some "phenergan", as it helps with nausea, but if anyone knows of a reason I shouldn't use that in IBD cases, let me know.

Thanks for listening :wink:
 
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Entchen

Chief Dandelion Picker
Hi Ivory: What a tough question.

I'll tell you this: I had blood for a while before I thought to mention it to a doctor (I'd had blood in the past from an innocuous cause, and didn't think it was important to mention this time). But the second I said "blood" -- bam -- no more ignoring my claims of severe pain, fever, and all the rest. So, if your daughter spots a Big Sign like blood, you'll be smooth sailing. Else, I'm afraid I have no idea how to get a physician to pay attention. I'm a health psychology researcher and I used everything I knew to try to get some help, and it didn't work (until I said "blood").
 

DustyKat

Super Moderator
Hi Ivory and :welcome:

I have posted a link to my introductory thread because your daughter's symptoms, aside from diarrhoea, are very similar to my daughter's. If you read through it you will see what I mean, even down to the cyclic nature of the episodes.

http://www.crohnsforum.com/showthread.php?t=10591

I hope you have more luck with your new GI. The fact that you also have Crohn's speaks volumes from the point of view of experience and knowledge and a doctor who won't acknowledge that is an idiot. I reached the point where I refused to leave the hospital until they could prove to me it wasn't Crohn's and as you see they couldn't. :yrolleyes:

My daughter, unfortunately, didn't get to the point of having a colonoscopy, however right up until her surgery, blood tests, ultrasounds and CT scans came back normal. That's the difficulty, they don't always give us the answers we need. I do hope they give you answers though.

Maybe you would like to print off my story and show it to the doctor and say there, this is what I am talking about and look what happened! :lol2:

I can't advise about a medication for nausea because nothing worked for Roo until she was treated for her Crohn's. I wouldn't imagine there would be any resaon why Phenergan couldn't be used, but to be on the safe side just ask the doctor tomorrow, who knows he may have a better alternative.

You have found the right place here for support and information and I have no doubt there will be others along with great advice for you.

Please keep us posted on how you go tomorrow or if you have any further questions just fire away or if you like you can PM me.

All the best,
Dusty
 
hi Ivory & welcome :)

sorry to hear all this - it must be awful to watch your daughter suffering with no real explanation, coupled with the worry that it may be Crohn's...

i'm pleased to hear you're seeing a new doctor - sometimes that is exactly what's needed, a fresh opinion, new ideas - i hope they get some more tests sorted for her quickly and you both get to find out what's causing her discomfort once and for all.

i just wanted to say also, your daughter is very lucky to have such a knowledgeable and determined mum. it's not easy to question a doctor's diagnosis on our kids, but your gut feeling (no pun intended) is driving you to achieve more answers and more help for her, and that is fantastic.

eta: oh sorry i meant to add... my own daughter had similar issues every few weeks, right through primary and most of high school... temperatures, vomiting, stomach ache, intermittent diarrhea/constipation - to the point where we had the school attendance officer on our backs - and each time it was diagnosed as a virus. she's grown out of it now. i don't know if there's any connection, but these strange episodes seemed to stop once she started her periods.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Ivory, ditto what's been said so far. Hopefully the new GI will take you seriously. Please come back and tell us what you find out today. Good luck!! I don't see how they can discount family history that easily. Though, not in our case, it does seem to be common among many of the sufferers on here.
 
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