I NEED HELP AND ADVICE ON MOTLITIY DISORDERS AND GI PROBLEMS
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. I too have suffered chronic constipation my whole life, reflux, etc,.
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.Chronic 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.
i dont begn to understand all your medical issues but I FEEL FOR YOU. i can understand your fears.It must be very scarey. Ok..i aint no medic but I just thought Id pass something on in the tiniest chance it may help in any way.have you ever thought of some kind of auto-immine disease? For example Coeliacs disease is a gluten intoterance that left untreated can open the gateway to all sorts of other auto immune responses such as thyroiditis,auto immune hepatitis.It can present as bowel problems,mouth ulcers,skin rashes and feeling of exhaustion. I have a family history of this and had severe constipation since childhood,cramps pain,skin rashes,migraines,nausea, fatigue,,,After the 5th colonoscopy a gastroenterologist suggested I removed gluten and bingo.........it took time but Im ok now.Interestingly my 14 year old son is now exhibiting classic signs...We eat a gluten free at home but he is of the age where he goes out with mates.......
Anyway might no help but its worth the time telling ya just in case..
jst noticed,,you have hshimotos thyroiditis..classic with gluten allergy.Also high Igo i think. neuropathy is again a marker...please look on the gluten allergy section here. Also you could google gluten intolerance....
over and out
gluten allergy is celiacs disease by the way
I have been checked for Celiacs disease several times, Hepatitis, Crohn's, AIDES, several things all negative. My ana is positive but that could mean many things. I do have Hypothyroid, and hashimoto's disease too. I have been asked about Schlemedorma but never checked for that. I have quite eating cause of the pain I am trying to keep fluids going but sometime that is impossible as well. I have been to the NIH and tested for a lot of things so far I have them all stumped to the underlyning issue. But yet no one has never looked into my chromosomes or genetic background well they did for the genes for Periodic Fever Syndrome. I have tried so much even natural herbs nothing. My body don't heal from things either. I will read and check into what you have metioned though everything is always helpful.
My 14 year old same symptoms but he tested positive for Crohn's where he is now on Remicade infusions and he has did wonderful so I keep hoping and praying it stays this way.
thank you very much for your info:)!!!!
Thats interesting that your son has same symptoms and has been diagnosed for Chrones..something I really dont know about.It certainly sound like autoimmune disease of some sort.Genetic markers can point this out so its worth following this route.It may be that you have several auto immune diseases...once there is one several can follow.If it was me I would look into diet as well.Maybe try a gluten free diet for a while and see if it helps.Coeliac tests can be negative if youve had a restricted diet for a while..especially if you arnt eating much...
Best of luck
Thoughts with you.Hang in here.Be positive.There is a solution but you will have to dig deep ..