Skip to main content

In the medical world (and a lot of medical TV shows) they say, when you hear hoofbeats, think horses, not zebras.

What that generally means is that for the majority of patients, the simplest or most common answer is usually the best one.

And they are usually right.

But that does not apply to a lot of us on this forum and especially those of us with K pouches or BCIRs.

We are different, unusual, have also had our biology not just rerouted but rebuilt with a whole new exit which requires intubation and not just a bag stuck on the outside. Many ERs and hospitals have no idea with to do with or for us when we land there and if we cannot speak for ourselves we are going to get treated like a horse when in fact, we are Zebras.

Please make sure that there are people in your life, in your entourage, in your world that know what to do in case you can not speak for yourselves. Make sure that they know how to intubate you. Make sure that they know what to do if there is no output (the catheter could be blocked, it needs removing, clearing and reinserting for example). A data stick or USB key with your medical file, a link to a site and some diagrams as well as a medical logo could help too.

Medic alert bracelets or necklaces help too. 

There is also another point where again I feel that many of us are Zebras and not horses.

In my over 42yrs with my K pouch I have had a rather large number of complications, revisions, hernias, dropped pouch, slipped valve etc.

There were over a dozen prior to my having gotten my K pouch in the first place.

I always asked myself and the surgeons why I never stayed stitched. Why things didn't heal like on other people. Why I bled more (no, girls are not hemophiliac, I learned), fell apart etc. Why I.V.s were such a nightmare for me.

Nothing ever went right but there did not seem to be a logical explanation or reason. 1 minor surgery became 6 major surgeries.

Nothing was ever simple or went right the first time around.

I cannot blame or fault my surgeons. I had good ones. They had great outcomes with everyone else. Just never with me.

Time went by and even with the 1 step k pouch (it ended up being a 3 step) I had non-stop complications.

Then, when I was 44, my 'country bumpkin' family doctor had an idea. This must all be related. Zebras, he said, not horses. Let's look outside of the box. We made lists. Sutures pop, scars don't heal, skin fragility or breakdown, vascular fragility, dehysses, pouch drops, hernias, no adhesions (yea!), dislocations, bowel twists, hypermobility, severe joint pain, scoliosis...the list went on.

He literally sat down and opened up 6 medical books on his desk, asked the professional medical internet site for doctors...We spent hours researching.

And then came up with Ehler's Danlos Syndrome. A congenital lack of collagen in the body. My body does not make it. Collagen is the glue that glues things together, gives your ligaments their stretch and allows them to stretch back again instead of snap or become lax. It makes your skin elastic. Lets bones heal. Makes your blood vessels soft and pliable and not friable...

It answered 100 questions. Except for 1. What is the cure? Well, there isn't one.

So what is the point in knowing that you are a Zebra and not a horse?

It means that your surgeon needs to use permanent solutions when for others he needs temporary ones.

Dissolvable sutures do not work. At 6+ weeks when they dissolve, my body has not healed and things fall apart. I require permanent sutures. They pose other possible complications (cysts, infection, fistula...)

You cannot sew my pouch to the wall or fix a hernia with sutures. They both require mesh repairs or they fall apart.

Sometimes for skin closure, I require 4 different layers...sutures, staples, steri-strips and Montgomery Ties (like a tie-on girdle to hold the skin tightly together and avoid the pulling that rips the sutures).

I can't use skin glue, it doesn't work. No outside bag or tape, I have too much skin breakdown.

Blood clots, vascular aneurysms are both a danger...I am monitored.

I had to finally admit that I have stripes.

I have noticed a lot of other Continent reservoir patients have similar problems. Many have had repeat valve slippage. Pouch Slippage. Scars popping open even 3 months post-op. Hernias.

I see Zebras everywhere, so please excuse me. But there may be a thing here. Maybe a lot of us have EDS. There are checklists on the internet. There are medical sites.

As I said, there is no cure...treatments are more preventative and not curative (like, do not break any bones, they tend to not heal! Or do not stretch! Build muscle instead).

But please, if any of this stuff sounds familiar to you, make sure that you look into it.

There is no shame in being a Zebra!


Original Post

Replies sorted oldest to newest

Well said Sharon! I'm curious if you were tested for this, or if it was not necessary due to your many symptoms. I have approached my doctor about this, but I feel she knows too little about it - disregarding my lack of internal scaring, end ileo prolapsing, multiple pouch revisions required for falling off the abdominal wall and valve slippage, need for mesh, problematic loose joints, scoliosis, vascular fragility, etc. - but she simply thinks that if my thumb doesn't fold back on itself, I don't have EDS. Recently I had to have surgery for something not pouch-related, and could not convince the surgeons that I may not heal as expected and I do not scar internally. They just looked at me like I'm a paranoid idiot. I think a confirming test could be helpful to convince them (of course a physician that listens would be more helpful!)


Hi Debbie,

Welcome to the Zebra club! Yes,  you have stripes too.

There are genetic tests possible but they do not test for all types of EDS.

Type 6, the stretchy ligaments,  fragile skin and tissue kind , does not show up on tests.

So my family doctor diagnosed me through physical tests.  Not all hyper mobile EDS patients have all of their muscles and ligaments hyper right thumb bends 100% backwards,  not my left. It's because it got dislocated once. That's all it takes for me.

I dislocate both knees,  hips and shoulders...because it happened once they never snap back...they are forever stretched out.

Ankles too. I just had a massive sprain...this time they casted I have a brace and physio starts in 2 weeks.  My whole leg is still blue after 3 weeks. 

Tell your doctors that you have  EDS. They cannot ignore it even if they don't understand it...if you said that you are diabetic would they refuse to believe you because they don't understand it,

They'd look it up.

That is their job.

To treat their patients.

Print out the sheet on type 6 and carry it around with it every time.

My surgeon here didn't believe me until I popped 5 days post op. Now he trusts me.


Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.