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IBD clinic tomorrow - ready to fight

Sascot

Sascot

Amy's appointment day has finally arrived and I am trying to psych myself up. Poor girl has been really suffering with bad stomach pains. She is living every day with a pain level around 5 going up to around 8/9 on bad days. :(
I know it's going to be a fight since her scopes were inconclusive. 2 weeks ago I took her to the GP in desperation as she was doubled over. The GP was great, was concerned about her and we got sent to the hospital to get checked.
Well 4 hours later, 2 doctors and no tests we were sent home again :voodoo:.
If they say IBS again I will not be amused!
The GP was actually concerned about ovarian cysts or endometriosis. :eek2:
Not leaving without a plan for more tests tomorrow. Really wish they would just admit her and run all tests and get it over with, so hard watching her struggle
 
C

crohnsinct

Well-known member
That poor girl and poor mama!

Would it help to go in with a list of things you would like considered and ruled in or out?

I will start the list:

Gastroparesis
Celiac (if not already)
Fructose malabsorption

I am sure others can add a bunch to the list.
 
Mehita

Mehita

Why wouldn't they run any tests at the hospital?

To add to crohnsinct's list... I'd bring a stool sample too!
 
pdx

pdx

How horribly frustrating! I really hope that the appt goes well, and that your daughter gets all the testing that she needs.
 
Maya142

Maya142

Moderator
Staff member
Lactose intolerance or gluten sensitivity? Bacterial Overgrowth has been mentioned on here by two separate parents.

Where is her stomach pain? Does she have other symptoms, diarrhea or constipation or nausea? Is the pain at a specific time, like after eating?

I really hope you get closer to answers :ghug:. Good luck!
 
Sascot

Sascot

Thanks everyone.
Mehita - no idea why they didn't run tests. They did offer to email her usual paediatrician but never heard from him either. Next time I will just refuse to leave until they do something.
Crohnsinct - will make a list, thanks for the suggestions
Maya - her pain is mainly across her lower stomach under the belly button. She was tender on the lower right and left sides. She doesn't get any other symptoms like diarrhoea, only some dizziness. Her pain is constantly there it's just varying degrees of severity. She is really bad when she has her period
 
mommaof2

mommaof2

how old is she? my son has crohns and is an atypical case.. he never has diarrhea or constipation just gets bad stomach pains in the lower right side usually and headaches. It took us a long time to get diagnosed. Just trust your instincts.. hoping it goes well
 
Maya142

Maya142

Moderator
Staff member
Poor Amy, that sounds miserable. Has she ever had a pillcam or an MRE?

Good luck tomorrow!!
 
Tesscorm

Tesscorm

Moderator
Staff member
Hope you get some answers too! Remember, you are in the 'right' to demand tests, there's no way a young girl should have such constant pain without testing to determine the cause! :ghug: :ghug: Will be thinking of you!
 
Catherine

Catherine

Moderator
What about ultrasound to look for ovarian cysts?

DD had one for the same reason and it show a problem with the bowel.

Blood tests for haemoglobin, iron, folate, b12.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Sascot said:
Amy's appointment day has finally arrived and I am trying to psych myself up. Poor girl has been really suffering with bad stomach pains. She is living every day with a pain level around 5 going up to around 8/9 on bad days. :(
I know it's going to be a fight since her scopes were inconclusive. 2 weeks ago I took her to the GP in desperation as she was doubled over. The GP was great, was concerned about her and we got sent to the hospital to get checked.
Well 4 hours later, 2 doctors and no tests we were sent home again :voodoo:.
If they say IBS again I will not be amused!
The GP was actually concerned about ovarian cysts or endometriosis. :eek2:
Not leaving without a plan for more tests tomorrow. Really wish they would just admit her and run all tests and get it over with, so hard watching her struggle
Click to expand...
So did they ever do an ultrasound for endometriosis or ovarian cyst? They did that on Jaedyn last ER visit. It is best to have the test while having the pain because cysts can rupture and it is less easy to see then.

Let us know how your visit goes.
 
Sascot

Sascot

Mommaof2 - Amy is 13
When I took her to the hospital 2 weeks ago I had hoped they would do the ultrasound while she was in pain, but no luck. I will be asking for that first, then a small bowel MRI or pillcam and if all that comes back negative and she is still bad I would hope for a laparoscopy. Bloods are always fine - but then so are Andrew's
 
Sascot

Sascot

I fought and lost :( :ymad:
I tried my best but apparently the GI has decided she has had enough tests. His solution is peppermint capsules and the psychologist :yfaint:
They have children that just "live with chronic pain". More tests are not going to help. I tried to argue but he pulled out his "all my years of experience as a GI" card against my mom arguments. Frustrated!
 
C

crohnsinct

Well-known member
OMGOSH! Really? Who has our ball vice? I want to fly over there and use it on him! That is awful! I am sooooo sorry. :ghug:

In the meanwhile, maybe you can try dietary management of symptoms. There are quite a few out there. Very slight differences between them but they have all shown to help symptomatically at least. Let's see if I can remember them all.....IBD-AID (that is the one we are doing right now), SCD, FODMAP, Crohn's exclusion Diet (MLP).

Forced to admit I will tell you I never thought I had food issues. Digestive system perfectly normal. Text book in fact. However, IBD-AID requires we cut out all grains, sugar, corn and very low lactose. The whole family is on the diet to support T. I know who the offender is but since I cut over to her diet, I have more energy, positive attitude, feel great! So maybe there is a diet out there that can help Amy....poor pumpkin. So sad that parents are left to figure all this stuff out themselves.
 
my little penguin

my little penguin

Moderator
Staff member
Can you get the ped/gp to give her formula only for a while then add in one food at a time to see what is the issue?
We did this with DS
Made a huge difference
 
D

DanceMom

Been there, heard that. If you believe something is truly wrong then please don't give up searching for answers. She's counting on you to be her advocate! Take a minute to calm down and gain composure, then begin searching for a new doctor...new hospital...whatever it takes. So sorry this is happening!
 
my little penguin

my little penguin

Moderator
Staff member
One last thing have they done an ultrasound of her kidneys??
Had a major issues with kidney stone lodged in the kidney
Everyone thought gyn issues ovaries etc
Lots of abdominal pain
No blood
Yep very large kidney stone
 
Sascot

Sascot

Thanks everyone. I did ask about trying a gluten free diet - I wanted help from the dietician rather than do it on my own - he said it wouldn't help.
I have an appt next week with the GP to get a referral to a private gynaecologist - fingers crossed.
There is almost no way to get a second opinion in Scotland. Tried to go private but he wouldn't do anything because it's a chronic condition and he said it needed kept in the NHS. Each area has their designated kids hospital - you can't go to another one.
I will look into the diets - if he won't do a gluten free diet I doubt they will let Amy try EN and you need a prescription for it.
She has had an ultrasound around 6 months ago and her kidneys looked okay.
Thanks for letting me rant - might need that ball vice Crohnsinct :biggrin:
 
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