Melvin and Me, Part 6: Ostomy Basics and some Specific Backstory

I am writing this blog post specifically to have something to point to for anyone who is new to these or otherwise fits the following:  

"Melvin" can also be substituted for "Ostomy"

I still have to remind myself from time to time that not everyone has lived my experiences and may not have heard about this.  And I've found more and more as it goes on that people have opened up to me that they themselves have an ostomy or have a family member that does, however this is still not everyone.  Even those that have followed the recent path of changes, I've got some interesting backstory from over five years ago now that will provide some additional context.  

So what even is this?  An ostomy in and of itself is a surgically created hole for bodily wastes to exit out when something is wrong with the "normal" pathway.  This can be temporary or something permanent, depending on the situation.  I had a temporary ostomy twice, actually, when one surgery failed and parts of my body were allowed to heal for some time before everything was eventually surgically reconnected.  My body needed that time to regroup before we could go back into surgery and trying again.  But I'm getting ahead of myself.  Depending on what part of the body the ostomy has been created from, it gets its own special name.  If the ostomy has been created to allow for the passage of urine from an exit other than the bladder, this is a urostomy.  If the ostomy has been created to allow an alternative exit from the large intestine, it is a colostomy.  And if the large intestine has been bypassed, it is an ileostomy, named for the final section of the small intestine.  

A person might need these for a number of reasons, from cancer to some kind of accidental perforation or other disease.  Mine was an odd mix of things.  I was diagnosed with Crohn's Disease when I was twelve.  After that initial flare up was controlled by steroids, I had another at eighteen and another at twenty-two, the latter is technically still the same episode I'm in today.  A flare up in the case of Crohn's means that a section of my digestive tract was particularly inflamed.  In other words, my immune system was confused and actively attacking that part of my body.  Getting this response back under control and allowing those areas to heal and work "normally" again is called remission, where all seems quiet for an indeterminate amount of time.  Since everyone's disease is a little different, there are a few different strategies and treatments, involving different types of medications, vitamins, diet changes, and surgery.  Some people can hit remission with a round of steroids; some cases require much more extreme steps.  While we were working on finding remission, we ultimately started to discuss surgery.  There was a chunk of my sigmoid colon (the last section of the large intestine before the rectum) that was scar tissue on top of scar tissue until the area was so restricted that we could not even fit the colonoscopy camera through it anymore, particularly as scar tissue does not stretch well.  This section had to go--we weren't able to proceed further with my treatment for Crohn's disease medically, particularly understanding that this area completely sealing off would be disastrous.  

So, I was planning my surgery the same time I was planning my wedding, how weirdly life worked out.  Ten days after Andy I were married, we were up at the Mayo Clinic in Rochester, MN, going into this first surgery.  Less than twelve hours later, it was clear something that was very wrong.  This bowel resection took out a foot and a half of the large intestine and was internally reconnected.  However, we found out later, the tissue that had been stitched together was so diseased that it disintegrated around the stiches.  My colon was leaking into my abdomen, and, understandably, my body was reacting violently.  

So a few hours after the initial surgery, I went back for emergency surgery, to clean out the infection of my abdominal cavity and place an emergency colostomy.  I was twenty-five.  With all of the nooks and crannies inside said abdominal cavity, it is impossible to clear out all of the muck and infection had already settled in.  They also placed some surgical drains--a tube that has an end in an infection pocket with the body and a bulb on the other end of the tubing, creating a small vacuum to suck out pus and other fluids to help keep infection under control.  Additionally, the wound they had created while doing this clean-out couldn't simply be stitched shut:  we had to pack this wound to heal slowly, to prevent infection.  The wound was about as long as my hand and two inches deep, stuffed with sterile gauze and cleared out and restuffed a couple times a day.  I went in and out of ICU for about a month, removing some drains, placing others, piping in enough IV antibiotics that my kidneys started to shut down, and otherwise languishing.  

Flash forward to six months or so later, January of 2013.  We went to the Mayo Clinic again to talk about reversing the colostomy, to see if we had given everything enough time to heal to reconnect the digestive tract safely.  The plan was to go one of two ways, either reconnecting if the organs looked like they could stand it well or take the safer (if more annoying) tack of an ileostomy, allowing the colon to reconnect before running all waste through it again.  

My colostomy had been an end ostomy, meaning that my colon was redirected to a new, pure exit point; there was only one way out for fecal matter to exit.  An end ostomy is made by pulling a small piece of the intestine out and inverting it a bit, folding the end inside out over itself.  This is then sewn to the outside of the skin, to keep it from closing on itself.  My ileostomy, however, was a loop ostomy.  They pulled out a portion of my small intestine and cut into it most of the way through.  This meant that the majority of the stool passed into the bag, but some would still exit out through my newly reconnected large intestine and ultimately the anus.  Think of it as training wheels for the colon, allowing the parts that reconnected to slowly remember what to do as it healed, without the full burden of the body's needs.  

This leads to an important question--what happens to the butt when all this is happening, the normal "end?"  It depends on the situation.  If my first colostomy, since there was an intent to reconnect, there was a section of the rectum left, a small pouch.  This still created its natural secretions, a mucus lubricant the digestive tract creates to help move things along.  As such, I still saw some output of this material from time to time.  Then, when the loop ostomy was established, I saw a little bit of poop make its way through from time to time.  With this last, permanent ostomy though, my butt is officially sewn shut.  They removed portions of the anal sphincter and the whole connected rectum (since that was where the worst of my symptoms were coming from, especially) and sewed it up, within the butt crack.  There's no visible difference on the outside, really--it looks like a butt.  How much is left or not left depends on the situation.  

I could tell a difference between the colostomy and the ileostomy immediately.  Firstly, there is a visible difference looking at the piece of exposed large intestine compared to the small intestine.  The pink was very similar, but how it stuck out and how it was shaped was different.  The large intestine was thicker and the small intestine was smoother, but what struck me more so was how different the output was.  The large intestine performs a lot of the water absorption, meaning that the stool that passes through that area has a chance to dry out a bit.  The poop that came out of the colostomy was viscous, like a thick chili or pudding and usually brown (depending on what I ate).  What came out of the ileostomy was usually yellow and purely liquid.  This required different strategies in how I wore it.  Sometimes, the force of the thicker stool of the colostomy led to some different kinds of leaks, but a small air leak wasn't necessarily something to be immediately worried about.  I tended to (and prefer to with this new one) to wear the bag sideways, strapped to my side.  A small leak with the ileostomy was more dangerous, since the liquid would certainly find a way out, and it was also much more acidic to any exposed skin.  As a result, I tended to wear this with the bag pointing down, allowing gravity to help keep stool away from any skin that I had failed to cover with the putty or the barrier and not slosh up on any potential weak points. 

With the colostomy, I had to figure out how to wear shirts again.  It is much more apparent in tight shirts that there is an odd, size-changing bulge depending on how full the bag is.  As such, it's more helpful to have looser shirts, particularly so I can check it as needed.  With the ileostomy, I had to figure out how to wear pants again.  If it was hanging down, did I tuck it into my pants or leave it untucked with a very long shirt?  Seatbelts, too, were tricky at best.  Maternity pants turned out to be my best friend, and I also had a couple pairs of suspenders to wear with pants that were otherwise a little too big.  

In July of 2013, the ileostomy was ultimately hooked back up (after being turned away in May for still being too sick to go through the surgery, as a result of some miscommunication that I'm still a little bitter about).  So, yes, with Melvin now (as of November 2017), this is the third ostomy that I have had.  It should be the last, and it is permanent.  And I will say that while this is familiar, each has had its own quirks.  

Day to day care is mostly the same across the board.  I have always used a two piece system and adhesive putty.  The putty is formed into a ring that is placed directly around the ostomy, on the skin immediately surrounding the exposed intestine.  Then, the flange is a square bandage piece with a hole in the middle, plastic ring around that.  I center this over the ostomy as well as I can and smooth the adhesive over my abdomen.  Finally, I clip the bag to that ring, making sure it clicks all the way around, and head for my heating pad, using the heat to help the glue adhere to my skin.  This whole unit is replaced every three to five days.  The bags that I use have some plastic Velcro at the bottom that I undo, unroll the end of the bag, and am then able to empty the contents between bag changes.  Others have a clip that they remove and unroll instead.  There are many styles, personal preferences, and accessories (skin protectant, bolsters to help certain leakages, support belts to help distribute the weight of a full bag, etc.) available, but the basic idea of the setup is the same, that there's a piece that connects to the body and a bag that collects.  Sometimes, Melvin chooses that moment to blorp all over the counter, but it cannot be helped--just have to clean up and start again.

I can shower with the bag on, I can swim, I can mostly go about my life.  I have no control, however, when poop moves along into the bag, apart from trying to space my eating/drinking (think about that point when the morning coffee hits your colon, like clockwork).  This means, too, that if there is a leak, the timing of it is largely out of my control.  This means that, yes, I can live out my day to day life, but I excuse myself to ensure that all is going well and empty the bag as necessary.  I pack emergency supplies in a few strategic locations and deal with emergency blowouts as necessary.  It's always there, strapped to my side.  I can ignore it some of the time, but I still make sure I budget time in my week to perform scheduled changes and manage my colostomy supplies as far in advance as my insurance will let me.  It's just another aspect of my health that needs attention.  

For me, the tradeoff for this intimacy with my large intestine and staring down its production several times a day is that I am in a lot less pain.  It seldom hurts to have an ostomy, for me only when passing certain foods or when the skin around the ostomy is a shade of angry.  I truly hadn't realized how much I had been putting up with.  The symptoms that I had had, too, with the fistulas (inflammation created random pathways between two parts of my body, in my case an infection pocket out to exit through a hole generated in my skin and another connecting the same pocket with my uterus) in particular, were potentially dangerous, apart from being incredibly annoying:  I cannot say that I miss them.  This is not a desirable situation, but it is a livable one.  And in my particular case, it is and was my best quality of life.  

People with ostomies live normal lives, just with a few modifications.  I choose to be open and vocal about my situation, because I want to educate as part of my own coping and disposition, and I want to be available as a voice for those who maybe cannot articulate what this really means to them.  That's not how everyone with an ostomy will be.  I invite any questions that are there to be asked that I can answer, acknowledging that I have my experience to offer and not a medical degree.  I will try to come back an add any of these questions as an addendum to the bottom of this post. 

This is my normal.  This is the normal of many, many other people and people that love them.