In appreciation - end of an era

Today I am going through all my unused ostomy supplies so I can donate them to Friends of Ostomates Worldwide.  For nearly two years I carried extra supplies with me wherever I went.  I even took them to the hospital when I went in for my last surgery, just in case.  It is strange to think that just like that I no longer need them.

It is hard to understand the great wide world of necessary medical supplies until you need them.  I did not know what an ostomy was until I was told I was going to have one, way back when.  I did not know what its maintenance would entail until I watched the nurses at Mt. Auburn Hospital take care of mine and then try and teach me how to do the same.  In the early days, I would spend at least an hour with the visiting nurse when I had to change my appliance.  My first stoma had the awful plastic bridge under it which made it nearly impossible to do, and quite painful, too.  The supplies I used were absolutely necessary and made life as I knew it before cancer possible.  The only thing I could not do was lie on my stomach - and there are supplies that can even make that possible and comfortable, too.  (I was not comfortable with the idea of it; when I had to for radiation treatment, there was a special donut thing I rested on, and it was all very weird.  Still weird thinking about it.)

This is just to say that without these supplies I would not have been able to go back to work, ride my bike, even leave my house.  To think that there are ostomates who do not have access to supplies or cannot afford what they need breaks my heart.  With the right supplies and knowledgeable support, ostomates can do everything anyone else can.  Well done, FOW, well done.

Post-op -- unpacked & immersible

On Thursday I saw my surgeon for my post-op appointment.  Everything is perfectly awesomely fine.  My GI system is woke a.f., if I may use the parlance of the day.  Also, there is no bag on my belly.  There is still a hole on my belly; it is more shallow by the day and no longer needs to be packed at all.  I don't need any pain medication any more, not even Tylenol.

I even got the okay to shower without said hole covered.  It is okay to let water run over it, around it, into it.  This is a Big Deal.  Do you know how long it's been since I took a normal shower?  By normal I  mean a shower in which I didn't have to think about which part of my body or my body's accessories I should try to keep dry.  It has been A VERY LONG TIME.  It has been since July 28, 2015.  It was always okay to get the ostomy bag wet but if I did it would have to dry before I could get dressed.  (They have various accessories to help with this but I never invested in them; this was me being optimistic about my long-term prospects.  Glad that worked out.)  It was not okay to get incisions wet until they had healed to a certain extent.  It was never okay to shower when the chemo pump was accessing my port.  I am grateful for gymnastics early in life and yoga later in life: these allowed me to take oh so many showers with my belly away from the water, back arched so I could still wash my hair, or with the detached shower head in one hand, balancing as necessary to wash the rest of me, all without getting things wet that should not be wet.

I'll also repeat one thing from above: there is no bag on my belly.  This is also a Big Deal.  I have neglected half my wardrobe since July 28, 2015 because I had to.  I have not done things like run, or swim, or lie on my stomach since July 28, 2015.  I have tried not to eat gas-inducing foods because the ultimate release of that gas could not be controlled.  With the end colostomy that would prolapse at some point each and every day, my insides would get tired and achy trying to keep everything in.  With the ileostomy I was in the bathroom 8 times a day.  All of this no longer applies.

Let the Summer of Belly Rebirth begin.

Home again

Time between the first trip to the ER and the last trip home from the hospital, courtesy of this disease: 1 year 9 months 17 days.  At least let's hope it's the last trip.

And now a month's respite before the next wave of scanxiety.  

Unpacking

This morning the senior resident, accompanied by his gaggle of more junior residents, changed the dressing on my wound.  To quote him, I have "a little cave" in my belly, and like other similar wounds, having it heal from the inside out is the best way to prevent infection.

In my little cave, left over from surgery, was a whole lotta packing material.  He didn't warn me ahead of time that it would HURT LIKE THE DEVIL coming out of the cave.  It was never ending.  I may have broken a resident's hand, I was squeezing it so hard.  There must have been five feet of that stuff.  Putting fresh material back in was better - did not hurt and he didn't put as much in.  My visiting nurse will have to do this unpacking and re-packing every day until the skin closes.

I was also instructed in the proper colors of discharge from the wound, and those that signify Something Bad.  I won't ruin your breakfast with those.

My thighs are bruised from the heparin shots I get three times a day.  I am actually looking forward to Lovanox now; one needle stick a day is enough for me.

And now we wait... for proof that my bowels are awake... they only accept one form of absolute proof.  I must break wind, undeniably and emphatically.  And then I can go home!  I shall now peruse the room service menu for  gaseous foods...

The Final Takedown (Surgery 4 of 4)

Yesterday's last surgery was successful; takedown complete.  I pulled another vasavagol after the IV was placed, though managed not to throw up this time.  I wonder if I'll suffer the same with the next IV - I get one for each CT scan so they can inject the contrast at the end before final imaging.  It could be anxiety more than the IV in and of itself.  Surgery is terrifying, after all.

I am not used to having my belly back yet.  I don't recognize it, with all its scars and asymmetrical little bulges from being opened and closed so many times.  There is still a bandage covering this last wound, however I tried to take a good look when they changed it this morning.  One last bizarre hole to close up.

I used to put my hand over my stoma, sometimes to hide it, or hide the bag, sometimes to push on the bag's adhesive, or to muffle it a bit.  I am still doing that even though there is no bag, nothing that needs support.  The wound hurts; I need to walk and move to recover but that makes it hurt more.  So I keep cradling it thinking that will help, and out of habit.

I thought I might make it through without narcotics this time, but walking put me over the pain edge, so back to my old friend oxy.  Much less of it though. Only 2.5 mg at a time - more than that puts me to sleep, so I know 2.5 is enough.  Especially with a Tylenol chaser.  

Still have to get my GI tract to completely wake up before they'll let me go home.  It's partially awake.  I'm sleepy though.  Signing off from my private room, with a view even, at the Faulkner.

Hunger, anatomy, and antibiotics, oh my (NAC:1)

We are at NAC:1. 

Earlier today I got the call from BWF (Faulker) and now know that surgery is scheduled for 2:45pm tomorrow afternoon.  I can have clear liquids up until 11:45am tomorrow morning.  I have only been able to have clear liquids all day today as well.  I am hungry.  I have reminders in all my calendars and a note on the fridge telling me not to eat anything.  Ginger ale and Gatorade do not a meal make.

As this surgery approaches I find myself contemplating my anatomy more than usual.  Or, more than the new usual, since I never contemplated it much at all before my diagnosis.  I think I know way too much about my insides.  Every scan since The Big Surgery has been fine; all the blood work has been fine; colonoscopy was fine; the most recent bizarre x-ray came out totally fine.  What my surgeon saw with her very own eyes during the last surgery was perfectly fine.  Still, every stray digestive gurgle or minute abdominal discomfort sends me into a differential diagnosis tailspin.  Which of my (three! as of tomorrow) anastomoses is damaged and leaking bacteria across my gut?  Does that heartburn mean I have stomach cancer now?  Is the weird tiny pain a result of a slowly developing bladder cancer, thanks to radiation?  Are my intestines getting twisted?  Blocked?  Are fistulas forming in unnatural places?  Am I hungry, or is one part of my body gnawing at another part??

And I can picture all those things in my mind.  It doesn't help that I've had various temporary endpoints of my anatomy clearly visible (to me) for the last 21 months.  You can't help but picture it.  I still remember the first surgery, the first time I peeked under the hospital gown to see what the heck this thing was, and was so completely horrified.  This was just a few hours afterwards, when I was still distended from blockage and attempted bowel prep, and so many things were aggravated and swollen.  I only had that diverting transverse loop colostomy for a month but it was by far the worst one of them all.

But tomorrow, no more!  At least no more clearly visible anatomy that shouldn't be clearly visible.  I'll probably never stop wondering what might be going wrong with my insides.

Onward and upward.  A few minutes ago I started the pre-op antibiotics.  Last time around these made me sick to my stomach; I expect the same this time.  The pharmacy inserts advise that you "take with crackers, bread or a small meal" to avoid this.  Such a very cruel joke right about now.  I'm having coffee for a late afternoon snack, more ginger ale for dinner, and perhaps some different flavor of Gatorade for dessert and to swallow the last antibiotics before bedtime. 

More news when humpty dumpty is back together again.

Test result (NAC:6)

I received the official pre-op x-ray test result, which concluded thusly:

"Both the proximal and distal colonic anastomoses appear intact without leak or obstruction."

Sweeter words have never been written.  6 more days.