EDS ... Megacolon, diverticulosis & autonomic problems, neurogenic bowel ...

[Guest guest]

Hi all,

Just some things I was wondering/worrying about. Given the above subject. If

we have EDS and Megacolon, tics and perhaps autonomic type problems AND is on

antibiotics for years ... how do we determine how well the medication is

working?

If anyone has any of the above problems :-D or :-<, can you let me know what

antibiotic has worked for you.

++++

Here is my experience with EDS, megacolon, diverticulosis, functional colon

obstruction and multiple adhesions. When the pain or reflex spasms start or my

BP spikes [Dysreflexia] I know it is time to take the antibiotics. After so

many years of going through this I ask myself the following ... How do you know

if you have a " super " bug or not? I think my fistula or abscess could be

immune to the Augmentin 875 mg tabs twice daily ... or not! I been told to take

the

medication " when needed. " It has/is always the same antibiotic because of my

allergy history. I have taken the same drug over five years or more. Since I

do not have feeling in the spigmoid colon area ... when I do get noxious

stimuli " pain " my Autonomic Dysreflexia triggers. It is typically so bad, even

GAS

is my trigger! But, then that is a common trigger of dysreflexia :-<.

Then, add to my other problems the fact that I have Ehlers-Danlos Syndrome

(EDS) -- I have a stretchy GI. I have chronic diverticulosis in the spigmoid

colon that easily ruptures and/or colon perforations. This is when I am supposed

to take the antibiotics. It does help ... a lot. But, it has been so long that

I wonder if the medication is still working. I cannot feel things so how am I

supposed to know? I do judge my health by the range and frequency of my

Autonomic Dysreflexia.

Incidentally, for those that know what it is, my doctor now writes autonomic

dysfunction and colonic diverticulosis. With this new combined diagnosis I am

making appointment for a new GI doctor this week.

I wonder, is there is some lab work doctors should do? At times when my white

blood cell count had been elevated -- but NEVER out of range, it will be

ignored due me NOT complaining about pain. I feel like an idiot when I say I do

not have pain because I cannot feel pain in that area. Then, the doctor pushes

on that area or joint and asks me if it hurt??? So, it all depends on the

doctor knowing something about SCI, EDS, dysreflexia and/or nerve damage.

Caro

EDS, Autonomic Dysreflexia, Autonomic dysfunction. Colonic Diverticulosis,

etc.