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623083 tn?1295211081

I NEED HELP AND ADVICE ON MOTLITIY DISORDERS AND GI PROBLEMS

I NEED HELP AND ADVICE ON MOTLITIY DISORDERS AND GI PROBLEMS


MOTILITY DISORDERS
MID GUT MAL-ROTATION
MAJOR GI ISSUES

For years I have been dealing with my GI tract having motility issues like achalasia, dysplashia, a mal-rotation of my gut and intestines on top of my gi tract growing Candida yeast as well. In which it has caused many admitting into the hospital cause the yeast grew out of control ( and there was no spot of pink tissue anywhere and it even came up into my throat and mouth) or because I am chronically inflamed with my body

.
These are all the issue's I have dealt with and still do:

1. Congenital midgut malrotation with multiple abdominal surgeries
2. Subtotal colectomy secondary to dysmotility
3. Esophageal myotomy in 1997 secondary to achalasia and dismotility
4. 360 degrees fundoplication
5. Multiple gi procedures,ct scans, esophagel function testing. EGD, colonoscopies, intestinal biopsies
6. Recurrent dysphagia, reflux, bloating, swelling,constipation/diarhea secondary to dysmotility syndrome from her original congenital midgut malrotation
7.Cjhronic defecation issues secondary to the ileorectal anastomosis
(present ulcer)
8.ON going UTI infections
9. Questionable Arie syndrome this is a genetic defect that could cause the candida yeast
10. Hiv test always negative
11. High levels of IgD
12. Positive ana
13. IgG subclass 4 has been low, with high IgG sub 3
14. T cells are elevated
15. Low natural killer cells function test
16. possible periodic fever syndrome
17. hypothyrodism with history of Hashimoto's thyroidis
18. spinal acessory neuropathy on right shoulder
19. intermittent headaches
20. GERD
21. trace mitral and tricuspid regurg on echo cardiogram
22. history of clostridium difficile colitis
23. Gravida 4,para 3-0-1-3
Recent esophageal biosy showed Squamous mucosa with increased intraepithelia lymphocytes and focal eosinophils, consistent with active esophagitist.
24. High C-reactive Protein
25. High ERS levels
26. IL-6 Elevated
27. Neutrophils elevated
28. Lymphocytees low
29. Lungs show minimal linear densities suspiciuos for subsegmental atelectasis
30. Biopsies sigmoid and rectal shows colonic musosa with ulcer,active colitis, and focal crypt architectural distortion.

The list goes on. The surgeon's are talking about doing colon interception, but my question is how can they use a colon that has had surgery and part removal which they are saying it also has a motility disorder so how would that help me in the long run. ?? At this point we have been seen locally, at the University of Oregon, and the National Institute of Health and no doctor knows what is going on, they are all stumped. My health and symptoms are getting worse and worse especially the older I get. Now I am being told that there are some major issues going on in my whole GI tract, and the doctors in Oregon say they don’t feel confident enough that I need to be in Portland at OSHU were there is more specialists, and better care. Well the insurance denied me to go there to get care months ago when the doctors here try sending me. In the mean time my life is being JEOPARDIZED daily. I am scared for my life every day of my life, knowing doctors in our local area do not understands what I am going through and what to do for me anymore.

I NEED ADVICE AND INPUT ABOUT MOTILITY DISORDERS AND GI PROBLEMS!! Please can people share they're stories and advice.

Thank you,
Sacora
2 Responses
1475974 tn?1306881321
Just wondering how you are doing ?  I feel horrible for you, my daughter was born w/a mal-rotation and was misdiagnosed for 15 years!  She suffered so and the doctors at her pediatric office did not believe her.  She was in therapy at 5 years old!  They told us that it was in her head!  Finally at 15 they did an Upper GI series and found it, with immediate surgery.  Its been almost 10 years now and she still suffers...not all the same symptoms as you but she has been in/out of doctors almost montly.  I wish there was a good web-site to go to for infomation on "Mal-rotation" what to expect etc...
My thoughts and prayers are with you...
Avatar universal
Hi , I've just read your post! My daughter was also misdignosed for 11 years, as a baby she was fine until I stopped breast feeding, she feed till she was about 12 months old and not interested in eating like my son. She was failing to thrive and had to eat little meals often. Around one she was hospitalised and was dry so they couldn't get blood, they put it down to a tummy bug as she was voimting and cramps. They checked her out within a week. She had lost so much weight but they had no conclusions. I remember talking to s nurse the secound time she was in hosp and she said maybe next time push for a scan, after that my daughter seemed to be fine! She was never very regular with here bowls but they said that's just her. I went through constipation problems but that seemed to correct itself as time went. Last year she went o Ee with pain that just got worse, they put her on morphine for the pain, luckily had a great doctor who wanted answer s and did all the tests, they took her into sugery to find she had midgut malrotation. It was only the second one he had seen.she is 12 months down the track and is back playing sports and her appetite has increased, not much weight gain though, I do worry about her future and what's on the cards for her.
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