His Ostomy From My Point of View

Jason, I share my life with you.  This is the story of a man, a woman and an ostomy.

I remember when Jason told me that he had Crohn’s. At the time I really had no idea what that meant so, later after he left, I looked it up. It all seemed very ambiguous to me and I was very confused because I never noticed him avoiding corn or nuts. He didn’t seem to have any food restrictions at all and it was honestly something I thought that I would never notice. It wasn’t until December of last year that I began to see its effects. Whenever Jason would get really stressed with work and deadlines, he would get odd fevers with no symptoms and just want to sleep. I know now that this was the infection in his colon and the work of Crohn’s that would eventually lead us to living in the hospital for over a month.

What is Crohns

It was a Friday night before the beginning of the new quarter at school. Jason being a teacher had been busy prepping for his classes and making syllabi. He came home exhausted and frustrated. He had found out that his boss told him he would have another class on top of the 5 he had already prepared for. Trying to be the good little girlfriend I am, I made dinner to cheer him up. However, in the middle of the night he woke up nauseated and continued to get sick all evening. I thought, “Great! He’s stressed out and I poisoned him.” The next day he slept most of the day and continued to get sick throughout the day. Every time I checked on him he told me he was just tired and cold. I left him alone for the most part and put blankets on him. It wasn’t until very late on Saturday that he called to me from upstairs. I came into the room and he was shaking so hard from shivering I thought he was having a seizure. He said we needed to go to the hospital now.

Round 1: When we got to the hospital, they admitted him right away and let us know that he had a temperature of 104. I now felt like literally the worst girlfriend ever. How could I let him get this bad? He being that awesome person he is began singing, “The Fireman” by George Straight. They admitted him for our 1st round of 4 in our stays at Community. It was very scary because the doctors didn’t know what it was at first. They had the infectious disease doctor doing tests on him and asking us questions about our trip to Cancun. They finally figured out after a week that it was, in fact, Crohn’s. The shivering was Jason’s body’s coping mechanism for the severe pain he was experiencing. Jason had an infection and inflammation in his colon they told his mom and I, after they attempted a colonoscopy. We were not sure if it was from lack of sleep or too much stress but Jason’s sedated farting had us laughing so hard we could barely take in what the doctors were telling us. They put him on some meds, a strict diet and sent us home for round one.

Round 2: Even though, Jason was doing everything that he was supposed to, he was still having pain and trouble going number 2. When Jason hadn’t had a BM in 4 days, we decided it was time to go back to the ER.  We found out then that he had an abscess. Which I think means a tear or blow out in the colon but it hadn’t perforated it quite yet. The doctor kept him for a few days and gave him more meds and said to keep an eye on it.

Round 3:  I came home to find Jason in bed in extreme pain. He had been trying to call his doctor for over 4 hours. I told him to call him again and if he didn’t answer in 30 minutes we are going to the ER.  When we got back to the hospital, we knew the drill by now. After drinking the “diet Kool-aid” as Jason called it for the third time, we found out that Jason’s abscess had gotten worse and they would have to put in a drain. It was a tube that came out of his stomach and emptied into a small bag. After the procedure, we went home and learned how to take care of this device together. I asked a million questions because I was determined to help him get better and keep him smiling.

Round 4 Sign

Round 4: I was at work, running around in circles as usual when my boss called me into his office. He said, “The police department called for you. They said that Jason had requested ambulance.” My heart sank. I had no idea what had happened. I didn’t know if it was his colon or a car accident or something worse. I tried not to cry as I ran out of the building to my car. I called the police on the way there they said that he had called 911 from home because of chest pains and was at the hospital now.  When I got there, I had never seen him in this much pain. It came in waves and it seemed like he was being torn apart from the inside. The gastro doctor came in to examine him and assured us that he would probably be back soon to do emergency surgery on Jason because of a probable tear in his colon. However, when the tests came back they showed no infection. They kept him for observation and to plan our next step. A week in, they talked to us about an ilostomy. It was a procedure I looked up and seemed pretty straight forward. It would be done laproscopically and would be done in a few hours. I kissed him, put on a brave face and told him I’d see him soon.  When the doctor came out of the operating room after a half an hour, my heart sank. They said that once they got in there they found a large amount of infection and would have to open him up.  I was just not prepared for this. They never said that this could happen. I began to break down. I went to the bathroom and cried so his parents wouldn’t see me. When I got out, I sat down with his parents and waited for what felt like forever. His mom kept on trying to talk to me about moving in with us and how are we going to deal with our bills and making sure I keep my job… all of these things I just couldn’t hear but I knew she just wanted to say to keep her mind busy.

When Jason got out of surgery, we weren’t sure how to tell him that they had to open him up, that he would have a large scar down the middle of his torso or how he now had a colostomy bag.  When he woke up I just told him calmly what had happened but that it was a good thing because they were able to get all of the infection out and ultimately avoid having to do another surgery. Jason agreed and never got upset. He was very strong through the whole thing which made me stronger for him.

It was a difficult recovery process but he was amazing. I remember the first time we met with the ostomy nurse and it was time for Jason and I to look at his ostomy. Side note about me: I have a very honest face. It’s not always the best trait because when I don’t like something or someone you can tell because it is written all over my face. However, when I looked at Jason’s ostomy I didn’t have a problem with it. I just remember feeling acceptance because this is the man I love and this is part of him now. I remember my initial thought was it looked like a shotgun wound from the movies. I actually enjoyed learning how to care for his ostomy and doing research. I felt like the more I knew the better we would be. I began to learn how to work the machines in his room much to the nurses dislike and tell his visitors about what was going on with him while he was sleeping or very drugged up.

After our 4 rounds of the hospital, now came the challenge of being home and dealing with an ostomy in real life. I had to go through the inevitable awkwardness of not knowing how to hold him or be intimate with him. Not wanting to hurt him but wanting him to know that I was still attracted to him. He was worried about clothes and self-conscience at first about being able to see it through his shirts. And of course, there are the poop noises and smells from his bathroom. But after all is said and done I’m glad that Jason has his ostomy bag. He has been so much healthier and happier since his surgery. He has the option for re-connection surgery but I think what’s the rush. I think he is perfect just the way he is.

A couple holds hands in front of the sea

Written by Jessica Demaree

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About Jessica Demaree

Hi there! I'm a born and raised Hoosier, and co-owner of Awestomy. I love what I do and tackling exciting challenges. I'm an art nerd & love meeting new people. Queen of ostomy underwear with pockets and ostomy wraps with pockets.

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