My esophageal dysmotility disorder is considered severe yet, no doctor here will address it! As a result of the manometry test, I am also not a candidate for fundoplication so I guess they just wrote me off.
My whole digestive system is in turmoil and I have 2 extra feet of intestines which does not help digestion either.
If you find out anything, let me know and I will let you know if I can find out anything. I do see a new gastroenterologist in late November but this problem is escalating and really bothers me.
What are your symptoms?
I have esophageal dysmotitlity disorder but mine is actually from my mouth to my anus. Yeah doctors have wrote me off for years then I went through alot , these past 2 years I have told the doctors that something is wrong and my main doctors would not listen, but finally I had friends go with me that helped alot now they are finally wanting to do something to help. I can't eat cause it gets stuck then it kills me where it doubles me over. What they are talking about is removing my whole esophagus and using my colon to reconstruct, but I am hesitant because my colon also has a motility disorder. None of it makes sense but to me what is causing the problems and how will this help with the same issues. Where do you live?? Here are my issues:
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
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
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.