chapter 5: holding the bag.
alisha knew how sick she was, but was starting to feel like no one would believe her or choose to help. it seemed like it was going to be an uphill climb to get anyone to take her health seriously. her fight was reduced to mere rubble and i was doing my best to keep her positive. what is funny about our relationship is that we've truly never been down or upset at the same time. there was something about her being emotionally getting kicked in the head, that activated me to be strong and confident for her sake. i did my best to remind her that God is still in control and that there were positives that came from the mayo experience, like the diagnosis of ehlers-danlos.
i kept reminding her that God made her strong, like a lion. i could tell that she was able to take a little comfort from me, but dr. arkin really destroyed her spirit in some significant ways. fortunately, dr. presti was wanting to see us to get an update on what had happened up in minnesota.
when we met up with him, alisha was definitely fearful that he was going to agree with this "ruminator" conclusion. she struggled to tell dr. presti those words, so i stepped in and told him what we were told. dr. presti quickly diverted the conversation at that point to dig into the results of the tests alisha had performed at mayo. i remember the tension i felt, thinking that he might, in fact, affirm the need for counseling. i felt for a moment that i was going to puke, i'm surprised that alisha didn't... she was the champion of that. if he didn't hurry up and tell us that this other doctor is full of it, i was about to explode.
finally, he looked up from all of his paper work and made direct eye contact with alisha. "honey...
it's in your gut, not in your head."
the relief on alisha's face was about as joyfilled as anything i had ever seen. she nearly got up and jumped on him like they just won the world series. she restrained herself, thankfully, but i probably would have joined her... i was so grateful that he could affirm her. of course, it would have been easier for it to be in her head; all of the stuff we have journeyed through could have been vastly different. it was messing with her head so badly, and i starting was losing my ability to stay confident and strong for her. so this was truly a gift that dr. presti gave her, and it was accurate; her issues were definitely in her guts.
over the next few months, alisha started new medicines and was being watched closely by the doctor. her pain was increasing and several follow up tests were done. they realized that her gall bladder was shot, so they removed it, but that did not make much of a difference for her. i was starting to get worried that there wouldn't be anything that could be done to actually help her.
there was one particular day that i broke down with fear and just sat for hours in our bathtub (completely clothed, for the record). i just wanted to be in my closet so badly, but the lack of doors made that tough. alisha finally realized what had happened and came in to sit in the bathtub with me. the two of us, sat in that bathtub for a really long time. it did not matter what my vows said, and it did not matter that God had prepared me for this... i could not handle it, i was scared.
alisha did great to just sit silently with me and let me continue to process my feelings. eventually, she had to try to comfort me with words of encouragement, but i wasn't having any of it.
"something is seriously wrong with you. your body is failing. you can't endure this forever, and i doubt any doctor is going to be able to find a solution. you are going to die and i am going to be all alone in this stupid bathtub. i can't handle this... i can't handle any of this. there isn't anything i can do for you, i am completely helpless in this situation. i'm supposed to be able to fix things for you, but i can't. i just can't handle this."
my emotional vomiting came with snot and tears, and alisha just let me have this moment. she held me tightly and after a little while, i began to settle down, but all those thoughts were real. i was so scared that i was going to lose her. it was a raw moment, to say the least. she got me to laugh by saying that the shower is a good place to lose your junk because it could be easily rinsed, and she wouldn't want to clean the couch. i appreciated that greatly, because that's how i would have handled it.
i regretted saying those words to her. i wish i could have hid it for a long time. i remember telling myself that i was a moron for not locking the door. i suppose it was a good thing that i revealed this to her though, but it did not feel good. she needed to know how i was feeling and i couldn't keep in it any longer. if i did not open up to her, i know i would have ran the risk of coping in some other dangerous fashion. she thanked me for sharing it with her and asked me to continue that. i agreed to it. more so for my own good, than hers. i knew that i finally had someone who could come into my closet with me and would really care.
the next time we met with dr. presti, he presented a new option that he wanted us to consider. he spent time looking over all the motility tests (measuring how fast her digestive system was working) that they had done, and he was confident that her colon was not functioning. her digestive system was operating as though it had a bowel obstruction at all times, but there was no functional obstruction, it was completely muscluar. the question that needed to be answered was if the rest of the digestive system, although diseased, was functional enough to be used if the colon was bypassed. alisha had performed several endoscopies and colonoscopies and they seemed to affirm this conclusion, but he said that they wouldn't know for sure unless they could test bypassing colon. so he suggested an temporary ileostomy.
before i could even realize that i had zero concept of what that was, i was already on board with trying something new. status quo was not good, so let's try something! of course, alisha wasn't going to agree to anything blindly. so he explained that they would loop a section of small intestine, just "north" of her colon, out of her abdomen and give her a bag that she would expel waste into.
i'm trying to be delicate here, but i don't know that it's totally necessary this time... she was going to get a poo bag.
hey reader, you good?
i'm good... poo bag is funny.
alisha seemed unphased by this. so we all agreed that we would give this a try. an appointment was set and the plans were made right there on the spot.
a couple days later, alisha had a bathtub moment of her own. she had looked at a google image search of what this ileostomy would look like (you might want to avoid that yourself, but go for it if you are feeling brave). this section of intestine that hangs out of your tummy is called a stoma, and alisha tossed her phone at me and said "look at how hideous i am going to look... stomas are disgusting and some of them are huge!"
"i'm sure yours isn't going to be big."
"how do you know? i might have massive intestines!"
"seriously? nothing is big about you. yours is going to be cute."
she did not find that helpful. and i can admit this now... i was really grossed out by the pictures. i had no idea how i was going to handle this, but i just had to stay confident in this moment. i told her that this was not going to be a big deal and no one would see the stoma because it would be covered by a big, nice bag.
oh shoot, that wasn't the right thing to say.
"people are going to be able to see that i am wearing a bag! how big are these bags anyways? google that! i need to see how big, 'and nice', these bags are! i'm going to have to wear sweatshirts for the rest of my life!"
i tried to find the daintiest poo bag on the internet, but all of them looked larger than i expected. she was mortified. i assured her that no one was going to be able to tell, and that tons of people have had them, so they were as minimalistic as possible. i just kept it positive for her, but i really wanted to freak out along side of her. within a few days, she was going to have a stoma and a poo bag, and it probably wasn't going to be pretty... but hopefully it would help her get better.
a few days before thankgiving of 2007, we went to the hospital and anxiously waited for her turn to be pushed back to the operating room. she was still very pensive about this whole stoma thing, but i just tried to keep things light. i told her that no matter what, i was going to like her stoma and that i really thought hard about it's name would be. since stomas did not seem to be super feminine, i chose the name stewie. i assured her that i could not wait to meet stewie and that we would have a great time hanging out together; he's into really funny movies, enjoys indie rock, and likes being the center of attention at parties. she agreed that stewie seemed pretty cool.
the surgery went fine, there were no issues at all. they were going to keep her for several days to watch how her digestive system was going to respond to the changes. alisha was pretty drugged for those first few days, so i mainly hung out and ate chicken fingers. i really love the chicken fingers at this hospital... tip from me to you: if you are ever in st. louis, stop by mercy hospital and grab yourself a plate of chicken fingers and fries. they pair nicely with several packets of honey. you won't be disappointed!
a few days into my chicken finger binge, alisha's friend trixie came by to visit. her real name is stephanie, but i prefer trixie. she knew that things were pretty rough for us, so she determined that she would cheer us up. she brought with her, a bunch of board games to play with, including the game of 'operation' and america's favorite game, 'guess who.' certainly, you know this game... there are about 30 characters illustrated on these cards that you could flip down when you determined that they weren't the culript of whatever mysterous crime you were pretending to solve by asking questions about their gender, ethnicity, hair style, and so on. i am a world class 'guess who' player! if they held this event in the olympics, i would have earned multiple medals by now.
after i beat trixie easily in a best of 5 competition, i ran around the hospital room, stopped right in front of alisha, pulled up my shirt, and tore off the ostomy bag that i had been wearing for the last three days full of coca-cola and drank it in the most glorious feat of celebration in the history of the world! true story. alisha was stunned. she had no words. i couldn't tell if she was dumbfounded by the absurd celebration method or the fact that i had been wearing a full ostomy bag and she had no idea. the correct answer is yes... she was clueless on how to respond to both things.
i gave her a big hug and told her that if she couldn't tell that i was wearing one, there is zero chance that other people would be able to tell that she will be wearing one. this gave her so much relief and truly changed her attitude about the bag. she also told me that she would never kiss me again... drinking 3-day old, body temperature coke is this most disgusting thing that she could think of!
after this ruckus celebration, a wound care nurse came to check on her to see how the stoma looked and give us some instructions on how to change the bag. alisha was still pretty out of it, so i knew that i had to pay close attention to how this all worked. she took off the bag that the surgeon had put on so we could see stewie for the first time, and it pretty clear right away that there was a problem. that's when we discovered just how allergic alisha is to adhesive.
the bag seals around the stoma with adhesive, which helps it stay in place and not leak. these are essential attributes for quality poo bag function. sadly, within just a few days of having this thing stuck to her body, the entire area where the bag fastens had rashed up, blistered, and eroded badly. this was not only was painful, but disasterous as the bag required a good seal to work properly, and the waste coming out was extremely acidic... only making the damage to her skin worse.
the wound care nurse was not exactly sure how to help alisha. i could tell that she had never seen a physical reaction like this. she tried to keep cool as she brainstormed options that could help alisha, but she really struggled to come up with a good solution. she attempted different sprays and barriers that would protect alisha and keep the bag sealed well, but it failed everytime. she was leaking all over the place. each time the bag failed, alisha would seemingly get more and more defeated. finally, sometime past midnight, after several hours of attempts, the nurse felt like she got the bag on good enough to hold throughout the night and buy her some time to research other options. she left and i stayed up to be diligent to make sure that that it wouldn't leak on her as she slept, and she was exhausted needing to sleep badly. the reality was that a few minutes of the acidic waste would be damaging to her skin, let alone a few hours.
after a half an hour, the bag started to gush again and the nurse of the floor decided that she wasn't sure how to handle it, that she would just lay a wash cloth over it until the morning. i jumped up and told her that we could handle it, that there is zero chance that i would let alisha's skin be destroyed any further. since the wound care nurse had spent nearly 8 hours with us and couldn't fix the issue, I wasn't about to call her back in at 1am.
i started barking out orders of stuff i needed to solve the problem. "i need gauze, a blow dryer, and paper tape, stat!" i'm not certain i used the word stat, but in my mind i had taken charge like george clooney on ER. I spent the next 45 minutes with this nurse watching me and fetching assorted items i needed, as i fumbled my way to cleaning, preparing, and reattching the bag to alisha's badly burned stoma site.
alisha was so thankful that i took charge that night. she often tells me to this day that she has never felt more loved by a person than when i willed my way to a spectacular stoma solution... that bag did not leak all night long! it truly felt like a miracle. i thought that we would maybe never get that bag to stay attached properly. this moment helped alisha realize why mt. vernon was important. she apologized to me the next day for not understanding why we did not get engaged earlier. she affirmed me that she saw the mature man that i was praying to become finally appear. this was a major moment for me, that i did not shy away or act fearful... i was able to fight for my wife.
that same morning, the director of the wound care and ostomy clinic came to see how the bag had held up overnight. she had heard about all the issues we had. i explained what i had done to get it to hold for a few hours. the method i chose, triggered a potential solution to her, and she left for a few hours and came back with a ring of what looked like white play-doh. this substance would be the key to making the poo bag work for alisha. i guess that i was able to identify the true problem for her that lead the the right solution. because alisha's skin would blister underneath the bag adhesive, this would introduce moisture to a place that needed to stay dry. for the life of me, i cannot remember how i macgyver'ed a solution to that in the middle of that night, but i'm so glad that i was able to help figure the thing out. it felt pretty helpless for a while there.
the next several months had it's load of disgusting moments. the poo bag was a complete ordeal. every couple days, i would have to change it for her and take care of the ongoing damage to her skin. the puddy ring definitely helped keep the bag attached, but she was still allergic to this thing and the process we would have to go through to successfully change the bag was painstaking. we would have to move quickly because stewie the stoma was a volcano that you could not control. there would be eruptions at inopportune and unexpected times. and when that happened, we would have to start over from the beginning. there were many times that stewie forced us to restart 10+ times resulting in a multi-hour bag changing. it was awful.
when i say that it was awful, i mean it. but it truly was character building. alisha and i grew so much during this period. we learned how to work as a team and how to face defeat. stewie would mock us by constantly ruining our work just moments before affixing the bag forcing us to start over. beyond that, alisha would tell you that she really started to learn about what true beauty is. she handled the ileostomy great, with grace and determination. this was the first time that we truly worked together to endure, and our character was shaped as a result.