Intestinal failure? Dysmotility?

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My 17 year old daughter who has had no previous medical problems has had problems now for coming up to 3 years it came on all of a sudden constant severe nausea, headaches, lightheadedness  shes had 3 bad episodes of severe stomach pains and sickness including 1 hospital admission as was suspected appendicitis but only found mesenteric adenitis when scanned then a year later also blood and mucus in stools and constant stomach pains that is made worse by food/liquids so now is fed by ng tube which doesn't help at all apart from keeping her weight stable as went down to 5 1/2 stone but she is still really weak to the point of being bedbound and has to use wheelchair if has to venture out to appointments she has never had a good day in the past 3 years always suffering she has had numerous test 3 endoscopes, 1 colonoscopy, capsule endoscopy, mri, ct, scans, stool samples and a full thickness bowel biopsy all blood tests come back normal only things which has shown up is a long transverse loop that goes into the pelvis, stool samples come back with high calprotein (701 649 113 ) couple ulcers, melanosis coli(never used laxatives) and the capsule sat in the duodenum for 7 1/2 hours, took 5 weeks to pass also had 2 patency capsules that was at the end of the ileum 24 hours later, nothing explains why the capsule was held up in the duodenum. Her consultant suspected crohns but that has been ruled out then she suspected intestinal failure and was referred to another specialist who said it seems like dysmotility after reading up on her and recommended another specialist which we are waiting to see. I was wondering if anyone can help with explaining intestinal failure and dysmotility as we have looked on the Internet and nothing seems to explain it enough or if anyone else has any ideas or experienced something similar. 

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  • Posted

    Is she diabetic? Look up Gastroparesis. It involves the muscles in the stomach that results in delayed emptying of the stomach. Also usually results in loss of weight, nausea, vomiting, stomach pain. There are some wonderful books written by a young gal who was diagnosed with this. She has become an expert on this subject. Did your daughter has a Stomach empyting test? This will usually tell you if this is the problem.I recommend a  Motility Gastro specialist is the best to find if you can as they are really up to date on this condition.
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    • Posted

      Thanks for the reply She's not diabetic and hasn't had the emptying test yet the dr she's been referred to is a dysmotility specialist so hopefully be able to move forward with the emptying test. Who's the girl who wrote the books ? And what they called please 

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    • Posted

      The lady is Crystal Saltrelli, Certified Health Coach.

      I got mine thru Amazon. Hope this helps.

      Moderator comment: I have removed product/website names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

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  • Posted

    This sounds like chrohns to me. Try no gluten in her diet and see if it helps. I would also give her apple cider vinegar if she can handle it. I hope you get the answers you need and that she gets better!
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  • Posted

    Very much alike to my teenaged girl despite from calprotectine values (twice negative).

    Note yes: gastric emptying study - which is just for 4 hours - is good,

    (possibly with a colonic transit study, which is a pain in the patella as you need to hang around hospital for days days days)

    would be good to have to have this symptom simply proven,

    BUT it does not tell you as to why it is delayed.

    It's like measuring fever, proven to be fever, but why? 1000 possibilities, sometimes not known yet in order to be found.

    (my girl is delayed gastric emptying, also has big transverse colon loop, was not even mentioned in report in first imaging as 'some have that and no problem'; an attitude I dislike in radiologists to omit any observations, it's up to the clinician and whole picture if something was still normal or not.)

    You mentioned capsule stuck in duodenum. Please look up SMAS/Wilkie (as I repeat myself).

    Also be always aware, if MRIs, CTs are done, to let them point out WHAT exactly was looked at.

    We had an MRE, it did NOT look at the vascular system (and that is the main culprit for my girl's problems, not the bowel loop it seems).

    If a woman get's an ultrasound, it is often to check uterus and ovaries in size and for functional or not functional cysts. But it does not check the pelvic veins for pelvic congestion. not mean all is covered automatically.

    Just because a lot of imaging has occurred, it does not cover everything, also comes down to experience and eye of radiologist if even seen if indication was to look for something specifically.

    Be very aware what was looked at at each imaging.

    Get a copy of all images and correspondence between docs and reports/results.

    It was unbelievable how many mistakes in plain observation were often written down and sent to other docs in cc.

    This can backfire big times in being taken seriously.

    Don't give up!

    Hope your motility specialist is on top of things

    and I find this a good starting point to check motility, but be prepared for yet another long path as the search, maybe found reasons and trials to tackle them take again time,

    We had to fly around half the globe to find the answer or one of the answers.

    Calprotectin (white blood cell protein) needs to be addressed and checked. This alone would warrant a Crohns therapy be it via diet trials or looking even for virus or parasite or bac infections. Lesions can hang in small intestine. Again can go overlooked if small enough and with a pill camera, no biopsy is possible in that area. I wonder if they can't start a Crohns therapy based on calprotectin?

    All all the best!

     

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