Daughters pain, need advice please

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I have written on here previously regarding my daughter and her pain. And we are still struggling for any help. Any ideas would be soooooo appreciated.

*Pain is lower right abdo,

*appendix taken and unexplained adhesions on intestine removed

*Colonoscopy clear

*mri clear

Constipation, diarrhoea, vomiting after food and when pain is bad and just recently blood in stool.

All blood tests and stool samples apparently normal.

She has had steroid injections to block nerve pain which didn't work.

Just out of hospital after a 4 night stay in which she was filled with pain killers. HELP

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7 Replies

  • Posted

    Hi

    I'm so sorry to hear that your daughter is going through this terrible time.

    I'm not an expert but these signs do sound like something is happening in her GI.

    I would definately push for more test's and another colonoscopy.

    Just over 1 year ago I had my first colonoscopy and they said it was all clear.

    Recently I had another test and  was diagnosed with crohn's disease, however my result's were consistant with this disease, for example the colonoscopy showed ulcers in my bowel and  stool & blood test's showed high inflamatioin.

    Please do get her re-assesed.

    Good luck

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    • Posted

      Yes, I'm thinking I take her to the major hospital (where her specialists are) when she has the next flare up of pain and demand another type of test.

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  • Posted

    You should ask for endoscopy as well. It seems to me it is in the stomatch.
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    • Posted

      Oh sorry, forgot to say that she had endoscopy at same time as colonoscopy. Both clear. This was during a time of no pain though.
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    • Posted

      Hi Jamell. Sorry your daughter is so unwell.  Been through all those tests myself. the only tests that come to mind that would either diagnose or eliminate certain conditions are : testing for coeliac disease (blood test) & a pillcam endoscopy on the small bowel. she would swallow a small camera pill & have a data recorder strapped to her side. the pill passes through the small bowel taking thousands of images which the gastro consultant tthen looks at for any signs of ulceration, inflammation, obstruction or narrowing, tissue changes. easy test & non invasive. x

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  • Posted

    Hi, my daughter has been put on to the contraceptive pill to stop her periods as this seems to exacerbate her painful spot and diarrhoea. This seems to be helping except in the occasion of a break through bleed which just adds her period pain on top of it.

    Her grandmother has not long ago been diagnosed with Ulcerative Colitis and the GI has stated previously that crohns is very highly genetic and has said that with a relatives diagnosis this would make their diagnosis easier, what I don't understand is with clear tests and being told to wait and watch how can they pin point simply from a relatives diagnosis.

    In the last two months my daughter has her pain somewhat under control to minor episodes at the moment so we're thinking of waiting to see if further flare continues before more consultations.

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    • Posted

      Hi

      I think I can help.  A few weeks ago I got in touch with Mind. They put me on an eight week course called The Mindfulness for Health. I attended for the first time last week. The first excercise Is a breathing excercis. I have had an immediate great result.  To be honest before attending I had thought it would a load of rubbish but  now I feel I can enjoy life again,  pain is much reduced. I can cope with what little I get but now I know I can beat it.  Ican't wait for my next visit.  Phone numbers can be obtained from doctors surgery or NHS foundation Trust.   Let me know how you get on

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