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Crohn's Disease Forum » Tests for IBD » My daughter is undiagnosed advice needed thanks


06-19-2016, 05:15 PM   #1
souper16
 
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My daughter is undiagnosed advice needed thanks

Hi my partner has ulcerative colitis and he is in remission (although so many symptoms) but not bleeding. It has been hard to go through at times and he struggles with a full time job. My daughter is 9 and around 3 years ago bowel habits began to change with bad smell tummy always swollen, blood with constipation and diarrhoea. Her tummy is always swollen after everything she eats she's not cealiac or dairy allergy. The paediatric doctors have tested 4 stool tests and 4 blood tests over that time (there was a change of doctors) they have came back ok. I am finally waiting to see gastro doctors but it's 8 weeks away. She doesn't bleed all the time but I know it's gradually getting worse. She gets mouths ulcers more she is always pale and complains about her joints, she is becoming more moody and is she is a worrier in general. Is it possible for this to be ulcerative colitis (even very early stages)? I just know something isn't right and any advice would be great.

Thanku
06-19-2016, 05:47 PM   #2
ronroush7
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I would it might be since Ulcerative Colitis or Crohn's Disease. Can you call your doctor and ask if there is a cancellation if they can get your child in sooner? Tagging Maya 142, Clash, my little penguin
06-19-2016, 06:02 PM   #3
souper16
 
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I would it might be since Ulcerative Colitis or Crohn's Disease. Can you call your doctor and ask if there is a cancellation if they can get your child in sooner? Tagging Maya 142, Clash, my little penguin
I rang the doctor just yesterday and because she isn't loosing weight they don't seem to care much. He just gave me another course of VSL (probiotics) and she has to take them 3 times a day. The doctor told me straight that she doesn't have IBD because her bloods and stools are ok and he seems to think gastro will be happy with these results. Which I am worried they won't investigate further. I just have a gut feeling that she is in early stages. The doc also mentioned about the calcoprotein levels where fine and this is a new test that my partner wouldn't have had because he wasn't diagnosed until the colonoscopy. Thanks for the reply!
06-19-2016, 06:07 PM   #4
ronroush7
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You know your child best of all. Also , IBD can be genetic. It doesn't have to be though. Best to you and your child.

06-19-2016, 06:14 PM   #5
Clash
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Fecal calprotectin is a useful test as it determines if there is inflammation in the GI. It doesn't dx Crohns or UC since inflammation can be caused by several things but it is always a good first non invasive tests. All that said it isn't perfect just like blood inflammatory markers like CRP. So FCP isn't used to diagnose CD or UC and if the GI wants to stop I would tell him that you don't feel comfortable using that test to rule out IBD since it isn't approved to diagnose IBD

Keep a symptom journal going forward, list the time, time date of each symptom as well as description and duration. Along with this give description of what was occurring at the time such as eating, sleeping etc. A bowel movement journal would be helpful as well, some even photograph the bloody bms. This way when you go to the GI you'll be prepared to show him what your daughter is going through daily.

Make a list of your questions and concerns and stand your ground if he tries to fob you off.

You may want to request iron panels as well as vitamin deficiency testing like b12, d etc. A lot of time malabsorption due to inflammation can cause a deficiency in vitamins.

Good luck I hope you find some answers.
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C age 19
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Dx May 2014: JSpA
8/2014 ileocecectomy
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06-19-2016, 07:59 PM   #6
Maya142
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It could certainly be IBD. The mouth ulcers make me think Crohn's, but it could also be UC. I agree with Clash -- I would ask for a Fecal Calprotectin test. That will tell you if she has inflammation in her gut.

I would also ask about scopes -- given the bleeding and since there is a family history of UC, it is worth checking to make sure. Usually the prep is the worst part for kids and the actual scope is done when they're asleep -- so just a nap!

Check out the Parents Forum - there is lots of good info there.

Good luck!
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06-20-2016, 03:57 AM   #7
souper16
 
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Thanks so much for the replys! This is a great forum as I have no one really to talk to only doctors! I will definitely start keeping a dairy that's a great idea! See she doesn't bleed too often and she spends a long time at the toilet and the volume of stool is a lot however the other week she went and they red blood was sprayed around the bowl with little stool (and I know that's what started with my partner) also at night she complains of a 'hot belly' and I've no idea what that is. And just the last week her eyes have been red and itchy (not sure if that's related) but my partner has itchy eyes. Anyway I'm going to wait the 8 weeks and give her the probiotics also I have her booked in for a food allergy intolerance test on Thursday just incase it's something that's causing all this. My partner is diagnosed with ulcerative colitis and he gets mouth ulcers (so I'm sure that both Crohn's and colitis both get this). I know people say that this disease is manageable but if only the doctors knew the other symptoms that come with it o just never want to see my daughter go through what my partner is going through.

Thanks for the advice I appreciate it so much!
07-03-2016, 07:50 AM   #8
Lady Organic
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Hi and welcome,
as Clash mentioned, fecal calproctetine is not a diagnosis tool.
mouth ulcers, joint pain, chronic tummy pain, blood in stools, family history of IBD, all of this should be taken seriously by a GI doctor.
Push as much as possible for further testing. I would call the GI clinic on occasions to see if a spot is available before the 8 week appointment.
Sometimes, people cancel appointments... Good luck!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-03-2016, 10:23 AM   #9
ronroush7
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Hi and welcome,
as Clash mentioned, fecal calproctetine is not a diagnosis tool.
mouth ulcers, joint pain, chronic tummy pain, blood in stools, family history of IBD, all of this should be taken seriously by a GI doctor.
Push as much as possible for further testing. I would call the GI clinic on occasions to see if a spot is available before the 8 week appointment.
Sometimes, people cancel appointments... Good luck!
Agree

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