A while ago I asked my husband if he would be open to writing about what it is like to have a wife with an Ostomy. I left it open ended as I wanted for him to feel free to write on any topic. I am proud of his honesty and openness. My husband is very poo phobic, so he gets extra points for talking about anything regarding bathrooms or the things that traditionally happen in one. This article is so amazing that I am breaking it up into two posts. I don’t want you to miss out on any of the goodness, and this article is a long one. So grab a beverage, tuck in, and enjoy.
|My sweet husband Reuben and I.
Without further adieu I present to you my first ‘Guest Blogger’, my sweet husband Reuben.
I have a somewhat procrastinative tendency. So, when my wife asked me to do a blog about relationships and ostomies, I naturally said “Sure Hun! I would love to do that for you.” The unfortunate reality, is finding the time do create this simple blog. I love my wife dearly; I just don’t often have much free time to write.
So here I am. Stuck on a flying cylinder on my way to Philadelphia for a work-related training seminar. And I thought…hey! Now is a great time to discuss my feelings, emotions, and overall relationship stuff to a nice global audience. Of course I could spend my time talking with these two nice ladies sitting next to me…unfortunately, I doubt they would like me to disturb their feigned sleep with more talk about bridges and segmental sections and cantilevered trusses… So I will regale you, dear readers, with some silly guy-emotions I experienced during and after my wife’s surgery.
Let’s give you some background data on me. I am an average 35 year old, crazy computer guy. I work in the bridge consulting (design) industry. And I am generally a fairly healthy, in-shape person (if you ignore the slight spare tire). I met Christy nearly twenty years ago while we worked at the same entry-level pizza making job. Well….she made pizzas, I washed dishes. I’ve really never had the “patient perspective.” I’ve always been the guy on the sidelines of the Surgical Prep area or hospital room cheering, or cringing, at what is happening in front of me, medically speaking.
Although she has had temporary ostomies in the past, I’m going to discuss my how I felt when she had the permanent surgery. I can tell you, I went through a lot of emotions; even if I didn’t express them to the world at the time I was having them. Please recognize that the perspective of these feelings are not coming from a patient. I actually haven’t the first clue as to what it is like to go in for one of these procedures. My most intense surgical experience was receiving a single stitch during a runaway-paring-knife-pie-making accident. I understand that emotions of the patient are going to be astronomically worse than mine. So please don’t take what I write as self-centered or petty. My goal is to help patients understand what I felt during my wife’s surgery, and to present my feelings as a possible baseline for the spouses and relatives of patients going into this type of surgery.
There is a lot of emotional strain when you witness someone you live with, love, and rely upon suffer through immense daily pain. As the realization that the only choice we had was to implement the permanent ileostomy became apparent, a partner will go through a lot of feelings. Most prevalent among them are fear, anxiety, depression, and relief. Let’s break some of this down for you.
Fear: I feared for my wife’s life. What happens if she doesn’t make it out of surgery? What do I do if they discover things are worse after they open her up? What if she has a bad reaction to the anesthesia again? How do I cope with the recovery period? To be perfectly honest, some of these fears are sensational. I knew deep down that things were going to work out. I’m typically a very optimistic person. From a slightly more abstract perspective, consider it the fear you feel when you are deeply in love with someone. And on an average, normal day, they are unexpectedly not where you expect them to be. OMG! Are they laying in a ditch on the side of the freeway! Should I check the news! Oh….never mind, there’s the garage door opening indicating my wife is home and theoretically NOT dying in a ditch somewhere.
So yes, Fear is present. But it is the fear for someone who is about to go through something real.
Anxiety: This happens during the surgery / recovery phase. Luckily, I was able to have someone watch the kids for this particular surgery. Normally, when Christy had a procedure, I would have worry-duty coupled with kid-watching duty. So I have to be as cheerful, calm, and collected so my kids don’t pick up on any harsh emotions. They don’t understand fully what is happening, and will have much stronger fears than me. I needed to be there for them first; when they are with me during these procedures.
For the permanent ileostomy, I was alone. For several hours. I distracted myself like I usually do…with simple video games, books, and long walks. I know the people in the operating room are professionals and are doing a semi-routine thing. But as the hours wear on, anxiety builds.
Depression: Oh yes. Depression is a bitch, even for an easy-going, semi-mellow, gamer like myself. During the surgery I had ample time to consider what we could no-longer-do as a couple. (mostly unfounded in hindsight) Walking around Dornbecker’s Children’s Hospital, across the OHSU Sky Bridge, and around 9th floor waiting rooms, I contemplated the difficulties we would have swimming, vacationing, playing with children, and having that oh-so-luxurious impromptu spontaneous sex. Images of how your life will change runs through your mind. And it circles, dwells, and festers in your imagination. These are the fears I can identify. The fears that I know MUST be true. What unimaginable things await me that I am currently unable to conceive? And in this cycle of thought, a sense of premature loss surfaces. And depression ensues.
Now…I’m going to break here just for a second to our readers. For one, the drink cart just swung buy, and I don’t want to get diet coke all over my laptop. Secondly, this is a good pausing point from my main thought process. I wanted to say that the depression I felt, the scenarios I ran through my head during Christy’s surgery were all bullshit. Pure crap. I’ll delve into that line of thought further down in the article; I just wanted to assure you, my fellow virtual passenger on this flight to Philly, that the depression was seriously unfounded.
Relief: When a person sees in their spouse significant pain for an extended period of time, the implementation of a ‘fix’ will present a strong feeling of relief. I suppose it is the opposite of the depression feelings. You experience a feeling of hope for the future. My wife had been in pain so long, and in such quantities, that I could have wept to see her eyes clear of pain. Every day, this mother of two would wake up; if she slept at all, take a dozen pills, and start her job of running the household. My daughter had home schooling, my son needed to be entertained, educated, and nurtured, and Christy had play-dates to organize, food to prepare, bills to pay, and medical expenses to track. She rarely ever admitted to pain. But you could see it in her eyes, in her walk, and in her every breath. Knowing that she may have relief from this pain, relief for herself and her quality of life, provided me with relief as well.
When her surgeon met with me afterwards, I heard about how well she did. And that she was in recovery for the next couple hours. She told me exactly what went down and how things will progress from here. I was prepared for the surgeon as I have had these conversations with her before. I was told to expect Christy to be in very large amounts of pain for the next several weeks. Apparently the removal of a rectum can be somewhat disruptive to your pain-sensing nerves. But she made it out of surgery; she would be ok. And we would begin the next phase of our journey. Everything would be easy-going and straight-forward from here. Or so I thought….
There are two medications that one can mix; an anti-nausea and a form of painkiller, that has a one-in-eight chance of causing the respiratory system to basically shut down. Christy was nauseated and in pain, so naturally, she was given these meds. Unfortunately, she was the one-of-the-eight that necessitated the statistic. She said her nausea was going away, and that she was getting sleepy. This was normal for a recovery, so I sat next to her as she went to sleep. I whipped out my Nintendo DS, and started playing some Puzzle Quest. A few minutes later, I noticed she made a deep intake of breath. Then a minute later, another. I was getting a bit concerned, but I had thought if anything was amiss, the sensors would go off. About a minute later, a nurse came in to check on her. She walked over to the head of the bed, and checked on Christy’s vitals. Then hastily she checked them again. I said “what’s up”, and she pushed the ‘blue’ button to call in others, then told me the room was “about to fill up”. I know Christy wanted me to stay in the room, however, it was a small room, and I wanted to make sure they had plenty of space to work. So I stepped just outside into the hallway and positioned myself clear of the door. In under a minute, they had no less than eight people in the room, a crash cart, and some sort of mobile anti-drug treatment thingy on its way up. The fear had returned.
I kept ‘playing’ my game in the hall, listening to everything being said. Perhaps I looked like an uncaring doushebag, I don’t know. Maybe they see this reaction more often than not. I could have done nothing in that room for most of the time they were doing their stuff. I knew it. The best chance my wife had was to have these people recover her from the brink. I was still there, about 10 feet away from her bed, but remained out of the way, and hopefully looking collected. Inside my head was another situation. I have something of an eidetic audio memory when I really ‘listen’. And I can recall a good 85% of all the sound I heard at that time. Hell, I could probably reconstruct a kickass timeline of the entire situation. It was a very emotional place to be, although hopefully, HOPEFULLY, I looked calm.
I tried to switch off emotionally during that time; I was unsuccessful. I ended up just burying those emotions and working them out nearly a year later with a psychiatrist. I don’t know what the answer is when the center of your world is dying; how you ‘should’ react. There is likely no right answer. Hell, it still tears me up a bit to think about. I guess all I can say to that is, if it happens to you, there is likely not a wrong way to react as long as you stay out of the way of the professionals attempting to bring your world back to you. She recovered from O2 Stats in the sub teens. And she is with us today to entertain and educate us in her articles. I, on the other hand, don’t play Puzzle Quest anymore.
There were no more surprises that day. The meds they gave her to counteract the bad mix of drugs had a side effect of not controlling pain while causing the severe shakes. Those shakes ended up cracking a few of her molars and causing extreme muscle fatigue over the next week. But she recovered. She had a permanent ileostomy. And the rough-road of this surgery was finally complete.
Happy ending? No…Happy Beginning. That was just the surgery to convert her to a permanent ileostomate. And the real emotions were about to begin during the recovery phase. This last part conveys what I was feeling when Christy was recovering from her surgery. My laptop battery is half-dead, so I really need to move on. If you readers want more on my thoughts and feelings running up to, or happening during the surgery, send CrohnieBolognaIBD (aka Christy) a message and I’ll write more on the subject.
Want to read part two right away? I’ve got that covered.
Here is the link to part 2