New reason for 300/200 dysreflexia & 43/32/75 hypotension ... maybe :-)

[Guest guest]

Hi all,

[Hey that 43/32/75 just happened right now -- 2/5/04 because I stood up to save

this message. How dare I move, stand or sit and aggravate my second colon :-<].

Well, I saw my GI surgeon Tuesday, 2/3/2004. All went as usual with the doctor

and RN <<<<NOT>>> seeing any problem AT all and this while viewing my colon on

their office monitor. Arrrr technology. Horrible examination, but medically

needed.

At that point, I got arrogant! I told the doctor to give me the probe. That I

knew there was SOMETHING ON THE LEFT SIDE ... A fistula, " hole, " giant

diverticula or bowel duplication or something. I had told them I was

Ehlers-Danlos Syndrome (EDS), had Autonomic Dysfunction and Autonomic

Dysreflexia/neurogenic bowel. And that NO, I do not feel pain in the viewed area

.... because I cannot feel pain internally. But, right before they finally found

" it " I had to tell the doctor to " push " on my super soft colon skin. Any

perforation would be closed and invisible ... given my soft tissues. Just my

desperate humble opinion. Like I was able to see that area. We are talking of

just one inch in -- near my internal anal muscle. IMHO of course.

And Behold!!! There it was right on the computer monitor. An opening was there!

So, I am not crazy nor was it my imagination all of my life! My new GI doctor

and nurse started screaming. Then, the nurse said that I had made the doctors

day. Oh Oh. Freak alert! They were screaming and yelling telling me there WAS a

duplication at the rectal level. He redid the exam noting to the RN how here is

the normal colon and here is the left side opening :-(.

He was moving his fancy computer probe instrument to record I suppose. The

doctor told me to turn my head to look. There it was: normal rectum and

intestinal lining. Nice and pink. And now, on the left side was an opening to

the left. He made a point to note that there was the typical [normal] right side

and that he was going to inspecting the left side. The left side was HUGE and I

suppose explains the up to now <<missing>> megacolon. It was large due to EDS

stretch.

So, my official diagnosis is rectal duplication. Very Very VERY rare I now read.

But, is that any reason for the doctors not to have believed me over the

decades? Apparently, a typical rectal duplication just sits there or is a cyst.

Mine was invisible due to the nature of my EDS flesh.

And how was your Tuesday.

Other Information: My EDS hubby had his mediport removed today. They say it may

have not healed properly. They chose not to put in a new one yet. At least he is

being given EDS level pain medications. His lung cancer is said to be

controlled. I told Bill he should get a medic alert tag that shows he needs

extra pain medication. Hey, he says morphine does not work on him??? Any EDSers

who cannot take morphine for their degenerative joint disease?

Back to me: Finally about my new discovery, suddenly my EDS knowledgeable doctor

wants to speak to me at home. I wonder why? Maybe they want to put me in their

medical journal. lol.

Let me see now: EDS, autonomic dysfunction, chronic autonomic dysreflexia,

unilateral renal agenesis, malignant hypertension spikes AND severe hypotension

spikes, POTS type hypotension, macular eye degeneration, and now proven rare

rectal duplication of the tube type.

So what next. Two brains. What is left that is so weird about me that I never

bothered to tell doctors is why when my bladder is full my eyes tear [paroxysmal

lacrimation]. I then want my " insensitivity to pain " documented. Finally, I want

to know what happens in my head when my brain feels like it is stretching when

my BP spikes over 300/200 plus. It feels like a faucet was turned on. I feel the

blood rushing and then nothing. Maybe an artery to vein fistula or something.

Meanwhile, my new GI doctor was soooooooo excited Tuesday. Me too. I cannot

believe they found something. And that it is not a so called disease is cool

:-). His office forgot to charge me for his specialist insurance CO-pay AND they

also forgot to check me for my prolapse, perineal hernia, incisional hernia,

navel hernia from surgical clips, etc., etc., and the list goes on.

I do suppose, the MRI they finally referred me for to look at my soft tissues

with find all of this stuff. I will require the new type of MRI since I have

metal in my face and abdomen form multiple surgeries.

My husband called from the hospital earlier. His mediport removal surgery went

well. He made some funny double butt jokes. We used to joke about me sitting on

my fistula. Now we know for sure ... with pictures ... that I an in effect

sitting on my duplication.

QUESTION: Does any of you EDSers have any body part duplication? What is

interesting is all of my problems all combined I LOOK healthy! It only shows up

in my low BP and high BP. So, I have no GI problem at least when it comes to the

duplication. Well, he saw the two colons that he could see. I suspect a third

but will not go there right now. Maybe that area is the divertulosis.

Caro.