13 year old undiagnosed, could it be Crohn's disease?

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My 13 year old daughter has suffered from severe abdominal pain for 9 months now. This pain is in a similar spot to an appendix and permanent but approximately 2 times a week it is debilitating for her.

She has seen multiple specialist and have Blood tests, X-rays, MRIs and laparoscopy to find her problem. Whilst having her laparoscopy 6 months ago they removed her appendix and found adhesions on her small intestine which they are unsure about.

Her eating, weight and energy levels have decreased, her bloody pressure drops when it is bad. she sometimes faints and vomits from the pain and she has spent many times in hospital. She is living on pain killers, tried eliminating foods, been on multiple antibiotics, had ovaries etc checked andand her next step is a gastroscopy and colonoscopy (I think this is what they are called) to check for crohns and other diseases.

While her stools are ok and regular I am wondering if anybody has had similar as I find her intestine adhesions very rare for her age.

Any help would be appreciated as my poor girl is getting so upset and withdrawn from missing so much from her teen life

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9 Replies

  • Posted

    Hi Jamell, I am sorry that your daughter is suffering so much so young.  I was diagnosed with Crohn's at age 25.  She does have some symptoms that sound like those associated with digestive diseases.  A colonoscopy confirmed my diagnosis.  They might also do a barium swallow test to look at her entire digestive tract in sections; I had that test also as part of diagnosis.  I hope that you will soon have answers so that she can begin a treatment regimen.  Best wishes to you.
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    • Posted

      Thanks heaps for your reply, no swallow test done yet either. Her surgeon and gastro specialists have been great in saying that they will not stop until they find her reason for such pain. It's just the public hospital system that is taking a little longer but I'm sure there is worse cases that need assistance first.

      Thank again for sharing and I will keep you updated.

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    • Posted

      It is great to hear that they will pursue the correct diagnosis.  I dealt with a few different specialists when I was trying to get diagnosed and some were more willing than others to get it right.  It sounds like you are on the right path.  Take care and do let me know the results.
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  • Posted

    Hi Jamell - My daughter was diagnosed with Crohn's at age 14.  She had severe weight loss, fatigue, diarrhoea and stomach pains over a period of about a year or so.  I also have Crohn's and I was diagnosed aged around 40.   Your daughter does sound to have some symptoms common in Crohn's disease.  Have they done a fecal calprotectin test for her yet?  Apparently that is a good test for Crohn's.   I was diagnosed during exploratory surgery - a laparoscopy.   I had a colonoscopy and gastroscopy prior to this and they showed nothing.  That was because my Crohn's is in the terminal ileum and it was very hard to reach that point with the colonoscope.  I have had 12 inches resected from my terminal ileum.  My daughter was diagnosed by colonoscopy.  I do hope you get some answers soon - it's always stressful when it is your children!
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  • Posted

    Hi Jamell 

    I was diagnosed nearly 2 years ago now but it took a lot to get diagnosed. 

    The first thing I had was blood tests which showed inflammtion in my body, I also had an colonoscopy which showed ulcers on my intestines and finally a MRI scan confirmed this was Crohns.

    Before diagnosis i was in severe pain , like you said, what seem like it was my appendix. I lost just over a stone in week as well! 

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    • Posted

      Thankyou for replying.

      My daughters did have high inflammation markers in her blood tests for the first months of pain but they are normal at present apparently. I am not sure if I it is crohns but it seems they have ruled out most other similar diagnoses. It's been six days since she has really eaten properly and she says its makes her feels sick but it doesn't really increase her pain.

      Luckily the hospital called yesterday and have got her booked in for colonoscopy and gastroscopy in 10 days. As much as i don't want them to find anything I also want her her pain free and back to her normal self.

      Thanks again for the reply, every little bit of info helps.

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  • Posted

    Hi ,so sorry to hear about your girl.My son was diagnosed after a year of being very unwell.Rapid weight loss,fatigue,cough,chills,lesions vomiting,but no problem with stools apart from one diarrohea episode.Found out he had glandular fever,pnemonia and chrons after lots of hospital test.Once seen by GP he was put onto consultants rapidly and within 2 weeks had an endoscopy and colonoscopy plus xrays and scans to confirm all 3 diagnosis.He had massive adhesions and perforation in his terminal illeum.If they cant find out what it is by your next tests,be forth right and demand more tests as it is awful for them to suffer and unfortunately they get used to the pain.We are still trying to find the right treatment but we have had a few weeks of a boy who is energetic and growing again.Hope this helps and pray for a break through in healing for your girl
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    • Posted

      Thanks for your reply.

      She went back to school this morning after two pain free days and BAM an hour later I get the call that she's vomiting, dizzy and in pain. I am stumped as to what to do for her so we giver her the endone and anti nausea which isn't killing the pain but relieving the tears for a couple of hours. Now she's back in bed sore.

      I haven't really been keeping up with her temperature checks but when she's in hospital it goes from below normal to slightly raised. She seems to be getting worse the last few weeks but we're lucky that her day procedures are in 6days. And yes if we get no results I will definitely be pushing for more to be done as its so not fair.

      I hope your son can get some relief for his symptoms and keep on top of them. Thanks again

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  • Posted

    Just thought I would update those of you who would like to know.

    My daughters colonoscopy was clear so back to square one for us. She is off to see a pain specialist this week and still in and out of hospital in pain, mouth ulcers and doctors can feel conscription may be contributing. I still have a gut feeling that these problems are coming from her intestines but her gastrologist has pretty much told me to find another avenue as her colonoscopy was ok.

    Constant low grade fevers and low blood pressure also now.

    So hopefully we can get her pain under control then find an answer.

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