Thursday, December 22, 2016

My Stolen Colon: 1 Year Later

one year ago today, I was rushed into the ER by ambulance and had the first of two major emergency surgeries that left me with a colostomy that I absolutely hate. they said that I'd been walking around with a perforated bowel for about a week at that point, and I was in septic shock by the time I called for help, and that if I'd waited two more hours I would have died. 

after the surgeries I was in a coma, on a ventilator, for almost two weeks. when I woke up, I couldn't even sit up on my own. I had to relearn how to use my legs and arms, and I had to figure out how to cope with increasingly strange coma dreams and serious PTSD—as well as the fact that I regretted calling 911 because I woke up with a colostomy bag. I was unable to consent to its placement, and immediately discovered that I would have rather died than paid this particular cost for staying alive. people told me I'd adapt and learn to accept it.

today, one year later, I do not feel any differently about any of it. but because there are people I love who mean a whole lot to me, I am still here and still fighting for them. on several occasions over the past year, I opened myself up to questions about this experience, life with a colostomy, and why I am a staunch advocate of the right-to-die movement. 

these are the questions my friends had for me, as well as my answers. I have rearranged some of the questions in hopes of making this post more cohesive, but remember they were answered at varied times over the past year (broken up to make it less overwhelming for me) and so some of them may be weird in tense or in reference to other questions due to my rearranging.

this is also a very long post, so mad props if you actually stick with it til the end.

Q: What happened before your crisis that triggered it? Do you remember what happened during/after your crisis before the ostomy? 

A: for about two years I was getting very badly backed up. my gi at the time put me on polyethylene glycol (prescription miralax) and his answer was always "just keep taking it". it would be 4-6 weeks between bowel movements for me and that was normal. when these obstructions would pass, it would be very painful and I always suffered from anal fissures, chronic internal and external hemorrhoids, and often had to throw on a pair of gloves and manually remove impacted stool—all of which was very painful. size and consistency wise, it would be like giving birth out my rear end. on December 18th 2015, I went to my GI doc and said "I haven’t gone to the bathroom in two months." he sent me home with orders for some routine bloodwork and a radiology order. 

four days later, on December 22, I was laying on the floor of my apartment, sobbing in pain and feeling like I was literally going to die. I called 911, and the last thing I remember is my next-door neighbor, who was an EMT, coming and getting me onto the stretcher when the ambulance showed up. he wasn’t working, but the EMT whod shown up wanted me to walk to the other end of the building because she was allergic to cats (cant make this stuff up.) so he got annoyed and pulled the stretcher up to my door and somehow got me on my feet to take three steps to it. by the time I hit the stretcher, he said I was screaming incoherently. the next thing I remember was waking up in the hospital on January 2nd.

Q: When you woke up after the ostomy was created, how did they tell you about the ostomy & what were your first thoughts/reactions to it? 

A: I was vaguely aware that I had had a bowel perforation. I spent from December 22 to January 2nd in a coma on a ventilator and nearly wound up with a trach as well. during that time I had some insane, septic shock induced dreams about what was going on around me, and some of it was real life peeking through, some of it was straight up science fiction. I don’t remember how I was told about it, just some vague half-dream/half-reality stuff about people changing something that had poop in it, but I didn’t really know what it was for awhile after I woke up from the coma. I refused to look at it when they did things with it, and I cried a lot. I insisted they undo it, I cussed out the surgeon, and I was awful to my girlfriend. mostly I was just angry that I had lived, because this was a cost I was not willing to pay—and I am still not. if I could rewind time, in all honesty, I would not have called 911. not with this as the outcome.

Q: What is it like having & caring for it? 

A: in a word? awful. its disgusting, it's high maintenance. it's badly placed (right between my belly pudge rolls) and retracted. it leaks a lot, it's always uncomfortable, it takes a lot of time to change appliances and keep clean, and the whole thing sets off my gag reflex. I have a tower of plastic drawers to organize the supplies I have to keep around, and no matter where I go I have to drag 4000 pounds of stuff with me in case of change, leak, etc. its rotten and I hate every minute of it, and I literally cannot wait until this is all past tense. 

It hasn't improved my bowel function at all and in fact has made it painful on a daily basis, and it seems theres ALWAYS something going on with it—either im backed up, or I have the runs, or theres some blood, or whatever. ive been to the ER more in the past year than the rest of my life combined, and one of those visits wound up with me being treated for c. diff, which was caused by the ostomy. I honestly don't have anything nice to say about it, unfortunately. I do know its not usually this bad for most people, though. I don't want anyone thinking im an authority on this or that my experience is the norm, because it's definitely not. but I think this is something that sucks no matter what the circumstances are, anyway.

Q: I know you have been trying to get it reversed... Have you made progress toward that happening or is it not possible? 

A: it should be possible to get it reversed. it's hard to know because of scar tissue and how much of my colon was removed, how successful a reversal would be. right now my nutrition is in such a bad place that no surgeon would do this operation—no surgeon I'd want, anyway. there's been a consensus among the I think six different surgeons ive seen (including the original surgeon who did the emergency surgery on me) that im not stable enough for what they consider an "elective" surgery. im hoping that getting on TPN will improve my nutrition to the point where I can have the surgery done, so I don’t have to live with this thing anymore. the original surgeon said flat out he wont do the reversal under any circumstances, as he feels im too complex a patient and I need someone with a better understanding of my conditions and complications. (too bad for me he didn't say that the first time around, I guess. *eyeroll*)

Q: I've read a fair bit on gastroparesis because of you and links you post, but I'm not sure how exactly the condition evolved from start to "emergency where the doctors decided an osotomy was the only option".

A: so, gastroparesis is dysmotility of the stomach, basically for whatever reason (its generally thought that damage to the vagus nerve causes GP, which can be damaged by diabetes [diabetic gastroparesis is a thing, just kinda different from "idiopathic" in some ways] or surgery or accident or, as suspected in my case, mitochondrial disease, etc. i also have intestinal dysmotility/colonic inertia, which is basically the same thing as gastroparesis but in my intestines. it's not strictly because of the GP--theres people with GP whose intestines are fine and people whose intestines are a problem but dont have GP. from what ive seen, its more common to see a total gut breakdown in mito patients than in a typical GP patient. so the slowed stomach and slowed intestines are actually two different issues. 

because my intestines are so slow, i was getting very badly backed up for almost two years, to the point where it would be 4-6 weeks between bowel movements, and then i finally went, there was a lot of blood and bad fissures and it would be so large and hard and painful that more than once i laid on my bathroom floor just sobbing and begging the universe to let me die. in december, the large, hard, stool, was just too much and it caused my colon to tear. they did surgery to remove the part of my bowel that had been perforated, and i actually perforated a second time while they were doing the surgery, and so the colostomy was done to "allow my bowel to rest". 

though when j asked my surgeon whether id be able to have it reversed, his response was to look at her like she was nuts and ask, "why would she want to do that?" because there's a decent chance that with a reversal, ill go right back to obstructing and potentially perforate again, lose more of my bowel, probably end up with another colostomy or ileostomy that may not be able to be reversed, and obviously might not survive another bout of peritonitis/sepsis. but there's also a decent chance that could all happen anyway, as i still have plenty of intestine left that's still slow, and so the colostomy really makes no difference in my case. my metaphor of choice is "it doesn't matter where you put the faucet if the whole pipe's busted."

Q: From the perspective of someone wanting help and finding your blog, I think the day to day living with it, particularly in conjunction with a feeding tube, would help others. Like, do they interfere with each other? How tricky is it to move/drive/go out places managing both?

A: really the only connection between them that i've seen so far is that when i push meds/water through my j tube, i get pretty severe cramping for awhile, which is something that happened when i first got a j tube, but stopped after 6 months or so. i havent been tolerating my tube feeds for a year and a half now, but that got even more severe after the ostomy surgery. i used to not bother running formula because i could only hit 10, 15ml per hour, which was basically about 100 calories a day or so, and it made me nauseous. now even at 5mls/hour the gut cramping and pain is so severe that i cant tolerate it at all.

comfort wise, it's a bitch. my tube and the ostomy are on my left side, and i can't really lay on my right side or on my stomach without a lot of discomfort, which is unfortunate because laying on my right side has been how i usually sleep and snuggle up to my girlfriend, and is also the position thats most comfortable for my back. so that sucks.
the major issue with having both these things is actually how much stuff i have to bring out with me when i leave the house. 

in addition to the usual bringing medication, water, pill crusher, syringe, gauze, tape, and tube extension (if im not plugged into one--sometimes i leave myself hooked up if i know for sure im gonna have to medicate while out so i don't have to mess around under my shirt in public, but sometimes its unexpected and so i always make sure i have an extension with me cause i can't access my tube without one as i have a low profile button.), now i also have to have supplies not just to change the bag itself, but also in case of leaking or what i called having an "explostomy" (a term my surgeon truly enjoyed). theres a LOT that goes into the ostomy:

  • -          the backing or wafer, because i use a two-piece appliance with a disposable bag
  • -          the bag itself which snaps onto the wafer
  • -          eakin seals, which are little moldable circles that create an extra barrier between the skin and the wafer
  • -          barrier seals, which are little "c" shaped things that go around the edge of the wafer to help prevent leaks & keep the wafer stuck to you
  • -          cavilon barrier wipes, which you wipe on your skin and it adheres to it and creates a kind of thin "skin" that your adhesives will stick to without damaging your skin
  • -          stoma powder, which.. does something, i dont even know, but i think it helps with irritation or whatever
  • -          lubricating deoderant, which helps prevent waste from getting stuck on the bag and helps temper down the horrendously foul smell
  • -          special cleaning wipes that dont have aloe or anything else that might coat the skin & keep the appliance from sticking
  • -          stoma paste, which is exactly what it sounds like and comes in handy if you have pudge rolls that inhibit the wafer and stuff from sticking properly--ostomies in chubby people are a nightmare in and of themselves just due to placement issues.
  • -          gloves because obviously
  • -          scissors for cutting the backing
  • -          mini trash bags that come with the appliance bags so you can tie them up before pitching them into a public or someone else's trash can
  • -          a mirror to see wtf youre doing
  • -          adhesive remover wipes to get rid of old adhesive stuff
  • -          saline syringes that i use sometimes to clean the stoma itself..

in addition to all that i always carry a change of clothes in case of leaking, plus barf bags, calmoseptine for irritation, chuck pads in case i have to change in an unclean area or in someone else's place to keep the yuck contained.. i generally just keep the bag packed so i can grab it anytime im headed out without worrying about if i forgot this thing or that thing. me and j call it my "go bag".

the short answer is, i have a backpack that just goes everywhere with me now and is completely full of all this stuff for "just in case". i dont carry around all the packages, but i do have enough stuff for at least two full bag changes--the backing, everything--as well as 3 extra bags in case i have a big output day and have to empty. the backpack is heavy and annoying, and really its a huge pain in the ass to carry all this stuff, and im really looking forward to being able to go back to just having a purse with some tubie supplies in it. >_<

Q: How does being on the autism spectrum interact with coping with a colostomy? Again, I'm thinking of "If I were googling for help, what would be helpful out there" because that's something you can speak to that maybe will educate a parent/caregiver/even a doctor on things to consider when making this choice, especially if the patient is unable to consent during an emergency.

this is absolutely my favorite question, and actually is what prompted me to start thinking about this blog in the first place. the short answer is that its a sensory nightmare that often drives me to the point of sobbing, stimming, and generally hating life a lot. there's a couple of different issues so im gonna separate them into categories here.

-          placement
o   placement is a huge issue, particularly in an emergency situation. when an ostomy is planned, the surgeon will have the patient lay down, sit, stand, move around, and mark their abdomen as they do, to ensure a placement that will interfere with their mobility as little as possible. this is obviously difficult in someone who has belly pudge anyway, but in an emergent situation like mine, placement isn't even considered. theyre looking to get in and keep the person alive, and so it's all done as quickly as possible. in my case, the stoma was put right in the crease of my stomach, next to my navel, and so its incredibly difficult to get a good fit.

having intestinal dysmotility means that my stoma started retracting (pulling back inside me) only a few weeks after the surgery too. the result was my ostomy nurse telling me "99% of people who think their stoma is a problem just dont have the right appliance and fit. youre part of the 1% where the stoma actually is the problem, and there's not much i can do to help." so i have a lot of leaks, i have a lot of pinching when theres output from the stoma. im a little bit lucky in this way, because i have a very large scar going up and down my belly and all of the surrounding area has no feeling in it anymore. this is something i imagine would be even worse if i had feeling in that area, but i can only feel the left side of my abdomen, so its half the misery it could be.

-          2. the appliance itself
o   obviously based on the list up above theres a whole hell of a lot of sticky things and bits and pieces that get stuck to ones skin, and its pretty awful, especially when the bag starts to have stuff in it. its heavy, its sticky, theres never a second that im not aware that its on me, and the slightest touch to it sends a shockwave of pain. everyone told me there's no nerve endings there, that it shoudnt/couldnt hurt, but it does, particularly when it starts spasming.

-          3. mistaken sensory identities
o   this is the worst of it. when i have to go, it still feels like i have to go the normal way. its pretty painful and usually feels like im crapping razorblades, which is bad enough, but it feels like im crapping razorblades out my rear end and more than a few times ive actually gone and sat on the toilet even though its impossible for anything to come out that way. the pain aside, its *really* hard for me that this happens, i cant seem to reconcile in my brain that nothing is going to come out the bottom. while i was still in the hospital and for a couple months after every so often i would pass gas out the regular way, and the first time it happened it scared the daylights out of me cause i didnt know that was possible. but its been really hard for me to cope with the disconnect.

 the doctors told me it was akin to phantom limb syndrome, and that's a pretty accurate summation of whats going on. its so distressing that the only sensory nightmare i can even compare it to would be the sort of overload one experiences when walking into walmart right before christmas. my brain doesnt understand whats happening, and it generally leads to, at best, a really bad panic attack, and at worst a total meltdown of sobbing, stimming, rocking, and self-harm. i would say its the worst sensory overload ive ever personally experienced, and it extra sucked that nobody told me that could happen until it happened and i lost my mind over it. THEN i got an explanation.

Q: What is your stance on death with dignity & making educated decisions to stop life prolonging treatments and only accepting comfort care until the end?

A: 100% in favor of it. bodily autonomy is the most important thing in the world to me, and I think we live in a culture that fears death that we are willing to go to extreme lengths to avoid death—ours or those of our loved ones. I think it should be on each individual person to say when enough is enough and to then be given whatever they need to be comfortable. I think our anti-death and pro-aggressive-medical-treatment culture needs to stop also being an anti-drug culture, too. 

most people who want this but are not very imminently going to die, if you ask them what their biggest burden is, they will say pain. ive gotten a lot of "well if we give you this now, what will you take at 90" nonsense in my life, being so young. the fact is, if I have to live in unbearable pain every day, I will not make it to 90 anyway.

 I think if we made more of an effort to make people comfortable and worried a little less about what they'll do 6 decades from now (assuming theyre going to live that long with serious medical issues anyway—I certainly don’t see that in my future) that there would actually be LESS people pushing for the right-to-die, because being made comfortable is a gamechanger in a lot of situations. I definitely feel less like im just waiting around for the sweet release of death when im not in total physical misery. so I think comfort care should be more widely available and not limited to end-of-life care.

Q: How do you reconcile your belief in RTD [Right-To-Die] with the ableism in the medical field that denies disabled people the option to live? (Downs syndrome child being denied a heart transplant, for instance, or even somewhat your case)? I don't mean this to sound as belligerent as it may sound, I just honestly struggle with it myself, as someone who believes in freedom of choice but is also involved in disability activism and worries there will be collateral damage.

A: another question I am really glad to get, because this is very controversial and relevant, particularly now. in my own ideology, I honestly don't see these two things being connected at all—beyond the general idea of the fight for bodily autonomy. and I liken my arguments here to the arguments of pro-choice/pro-life in abortions as well. using your example, a child with down's being denied a life-saving procedure of any kind is not okay. in this scenario, someone else is deciding the value of another person's life—which is precisely what the anti-RTD movement is doing as well. 

using the same example, if a woman is pregnant with a fetus that has been determined to have serious medical issues of any sort (down's, osteogenesis imperfecta, physical mutations/abnormalities, whatever else they're able to test for while in utero), I believe that woman has the right to an abortion. I don't believe that falls under the scope of what I call "the disability genocide" because while pregnant, the mother's body gets first dibs at autonomy. whatever the reason for it, whether the mother cannot provide for or take care of a special needs child, if it's emotionally distressing, if the mother herself is unwell, etc etc etc. her life will always, in my eyes, take priority over the life of a fetus, especially during the time when the fetus is unable to survive outside the womb.

that said, I am wholeheartedly against the idea of killing or allowing someone to die based on the viewpoint of someone else. just like I am against the idea of someone being forced to live based on the viewpoint of someone else. my surgery was done under "implied consent", which is to say that if a patient is unable to consent to something (as someone in an emergent medical crisis would be), decisions must be made based on the belief of what that person would want if they COULD consent. the assumption made about me specifically was that I would rather live with a colostomy bag than die, that I would have consented to have it done, knowing it was life-saving, if I was able to consent. which is why it is so important for everyone to have an advance directive, no matter their age or health. because unexpected things happen, and that's the only avenue we have to state what our wishes are. would an AD have stopped the surgery on me? likely not. because an AD can be overridden if two doctors both agree that the wishes stated are not in the patient's best interest. I can't imagine many drs would look at a 31 year old girl and believe her best interest is to die, even if she says that's what she wants.

so the TL;DR answer here is: I have no trouble reconciling these concepts, because I feel it's a slippery slope argument—that allowing people to be empowered in decisions about what they're willing to put up with just to stay alive and set limits on this, will lead to *other* people deciding people should die without consulting that person about their own feelings on the issue. nobody should make decisions about anyone else's body unless the person is permanently unable to do so: as in someone who is brain dead and on life support, for instance. and in the perfect world where that's true, an AD/living will would be legally binding, regardless of what anyone else wants, thinks, or feels.

Q: If your ostomy were in a less cumbersome location, would your feelings towards living with it change?
Q: if your ostomy didn't give you so many problems and functioned more seamlessly, the way it's more intended to, would you feel differently about it?

A: I grouped these two together because it's more or less the same answer. the short answer is no, I don’t believe I would feel differently. prior to all this happening, I was aware of ostomies and had/have several friends with them. in most of these cases, it's something they chose, and something that improved/s their quality of life. and even so, it's their body and their decision; I've seen people with ostomies talk about feeding tubes and how they'd rather die than have one. me and my tube are cool with that—im willing to live with a tube, they're not. the same goes in the other direction; if theyre willing to live with a bag, more power to them, but I am not. 

the only situation I can imagine where I might even *consider* being okay with the bag, would be if it improved my quality of life, lessened my pain, etc. it's done none of those things for me, because the rest of my intestine is still as slow as it ever was. in my case the bag was placed (as I think I said in an earlier answer, its been months between questions so) to allow for "bowel rest" after the perforation, not to lessen my regular obstructions and generally slowed down gut misery. see above, re: it doesn't matter where the faucet is if the whole pipe is broken. an ileostomy probably would improve my gut function, but I would never allow one to be placed after having lived with the bag for a year because of the following:

  • I find the stoma itself to be a serious PTSD trigger as a sexual assault survivor (and believe it or not, this is actually very common. I was relieved that I wasn’t a freak when I saw other people discussing this.)
  • I am honestly completely grossed out by every single aspect of this. feces get stuck coming out and I have to remove it manually, if its too soft it leaks, if its too hard, it hurts. 
  • the smell makes me gag, changing the appliance sets off panic attacks and I generally cry at some point during or after the process. 
I once sat covered in feces for two hours, sobbing "I don’t want to do it" over and over again, and my neighbor (the EMT who got me on the ambulance that day) heard me and came over because he heard me sobbing and thought I was hurt and/or dying again. ive literally vomited during bag changes. I just can't handle it, sadly, and I don't think there's much of anything that would change that, short of having someone else to take care of it for me at all times, which is an impossible request. :/ 

all of that said, I think that in the case where its going to improve your quality of life, ease symptoms, etc, and you are consenting to it and have a good support system and good aftercare, then it could be something that would work for you. I do wish there was a way to experience this stuff before it was made "permanent" so to speak. I knew I didn’t want an ostomy, but I had no idea how badly I didn't want one until I had one. my fight to get it reversed has been the worst part—it was meant to be 6 months, its been a year and reversal is stil not even on the horizon for me because of my nutritional status being so poor right now.

people told me I would get used to it, and I suppose I have in the sense of.. I take care of it, but I do the bare minimum just to keep myself comfortable. if it leaks and burns my skin, I don’t care about it until it starts being uncomfortable for me or leaking outside the barrier. but I will otherwise ignore it because I can't bring myself to care if it gets infected. overall, my hatred for this thing has sucked every drop of my will to survive, so even though I think I answered the questions on this one, I will be the first to say im an unreliable narrator. im not suicidal, but I haven't personally cared if I live or die for a year now. im attempting to care for myself for the people I love—not because I personally want so badly to be alive, if that makes sense. so, again, the short answer would be no, I don’t think it would change how I feel—but I think anyone who feels so intensely distressed can't really imagine feeling otherwise, either, if that makes sense.

well, there you have it. if you hung in here that long, tell me how you did it cause it took me a year to get through all this! 

a super thank you to all my awesome friends for asking such thoughtful questions, and I hope my responses were worthy of you guys' awesomeness. 

this has been the hardest year of my life, and im grateful for my loved ones who have been here for me in any capacity and in particular to my amazing girlfriend who is my reason for fighting every day.