My IBD Battle

The Denial Days

I have been extremely hesitant to write or post about this. As some of you know I have had Crohn’s or Colitis for the past 6 years of my life. Many of you didn’t know this because it isn’t something I talked about in the past or gave much thought to. I was taken to the emergency room on my 18th birthday after being sick for 2 months, losing ~50 lbs over that time frame. After a slew of testing I was diagnosed with Ulcerative Colitis and started taking medication to control the symptoms. When you’re first diagnosed with a chronic illness, the hardest part is getting over the mental hurdle that this is something that is going to be with you for the rest of your life. My way of coping with that was to completely ignore that it was even there. I was able to get the symptoms under control very quickly and continue on with my regular life. I was playing in a varsity football game a week after my first colonoscopy and diagnoses. It was easy for me to act like nothing was going on, allowing myself to think I had control over the narrative. I continued to do this while I played division 1 college football. I didn’t have any issues with the disease therefore I didn’t have the disease. That’s the way I got through my days. I didn’t talk about it with my teammates, I didn’t talk about it with my girlfriend, I didn’t talk about it with my family. I barely talked about it with my doctor. I wasn’t feeling symptomatic therefore I didn’t have it. That was my mindset. I enjoyed those years. I had a typical college athlete experience. I was able to eat, drink, and do what I wanted while only needed to give myself an injection every other week. It’s easy to live in denial when you’re capable of being a 295 pound offensive lineman while having a disease that effects your digestive system. And denial is comfortable.

Discomfort Days

Starting in November of 2019 I started to feel some of the symptoms coming back. A little discomfort after eating, more frequent and loose bowel movements. Nothing crazy, still pretty easy to ignore. I continued on with my normal daily activities. Working out 5 days a week and consuming the foods and drink I love. The symptoms slowly started to ramp up. I continued not discussing any of this with anyone and dealing with it on my own. Then the blood started again. Once you see blood in your stool, you really can’t act like nothing is wrong. I made an appointment with my gi doctor in February of 2020. We did blood work and went over my symptoms. Based on the blood work, we could see that my body had built antibodies to my medication and I was essentially unmedicated for the past 7 months. If you have IBD and don’t take medication to control it, it gets out of control. This led to a medication change to hopefully get the symptoms back under control. IBD medications are not fast acting. They typically take months to actually start working. March is when I started my new medicine and there wasn’t any immediate relief. I was in pain, and had a constant fear of going to the bathroom. I thought that this was my low point and once the medication started to work I would get back to my denial days. I was wrong. The medication didn’t start to work in time and the disease started to manifest in ways I had never experienced before. I developed an abscess and fistula. This made sitting, standing, walking, anything extremely painful. I was scared to eat because that meant I would have to go to the bathroom. I was incapable of doing anything really. I lost 40 lbs. and was in a constant state of pain. This persisted for a few months, beginning in April through early June. During this time I was a shell of who I once was physically, emotionally, and mentally. I almost missed the highest high of my life with the birth of my daughter on May 27th because of a fever. I could barely sit and hold my daughter in the room after my wife underwent a c-section. I was barely capable of changing her diapers or doing the things I needed to do during her first 2 weeks of life. Finally the pain became too much and I was hospitalized for multiple operations. Pain is uncomfortable.

The Operations

My first operation was done prior to the birth of my daughter in early May. It was an incision and drainage of the abscess in my doctors office. I would never ever ever ever ever do this again without anesthesia. It wasn’t complicated but extremely painful. This operation helped for about a week. I was in less pain and was able to move better. I was still scared to eat because bowel movements were extremely painful. After that week, the abscess grew larger and was not effectively draining out of the incision site. It continued to grow and become more devastatingly painful. I was bed ridden. They decided to do another drainage and place a Seton in the fistula. This was thankfully done under anesthesia. I got home and immediately felt terrible. I could not move or do anything. I was stuck in bed for 4 days before I had to be taken by ambulance to the emergency room. This was the beginning of my 20 day hospitalization. During the first week of my hospitalization I was on so many drugs that I do not have any memory of what happened. Luckily my wife was with me and made sure I was taken care of. She later told me I had another operation on the abscess, and a scope to assess the condition of my colon and rectum. The results of the scope were disturbing and it led to the decision to do fecal diversion through a loop ileostomy. The doctor said my rectum was too swollen and scarred to pass stool. My colon was a “festering boil”. This led to the next operation. They cut into my abdomen and pulled my small intestine through the hole. That is where my stool would pass into a bag attached to my skin. Exactly what every 24 year old wants. This is when i started remembering the hospital stay. I was uncomfortable and still unable to eat. My abscess was healing a lot better and the discomfort there has subsided. I was relearning how to walk. My body had completely atrophied and I was down to 160 lbs from being 200 lbs at the end of May. I hadn’t been 160 lbs since I was 10 years old. There were some extremely dark and scary times in the hospital with my mental health. I struggled everyday to see any light at the end of the tunnel. My ostomy was not functioning properly and this caused a lot of pain and discomfort. There was discussion of another operation to completely remove my colon and open the ostomy hole a little larger to improve function. That hasn’t happened yet but is still likely to occur if things don’t get better soon. Things have been changing not at a day to day basis but hour to hour. For now, I’m home and recovering from the operations.

Road to Recovery

This is my new normal. I’m out of the hospital, adjusting my diet daily, and slowly getting back to daily activities. A shower is cardio for me right now. My heart rate jumps into the 120’s if I walk a lap around the living room and fill up my water. I’m relearning how to hold my daughter in a way that is comfortable. I still can barely pick her up. I’m taking things hour by hour. Part of my recovery is mental. As I mentioned I was in some dark places before and during my hospitalization. Part of that is going to be talking about my disease with people. I can no longer live in denial. I have a constant reminder of my disease attached to my stomach. My poop bag. It makes noises and looks gross. I have opened up in ways I didn’t think possible to my wife which has deepened our relationship. I am sharing this story with all of you. I am not doing this for sympathy or anything like that. I am doing this so I can fight this disease openly. I’m not hiding this part of my life any longer. I’ve decided to start posting in this blog format to keep everyone updated with my progress. And there will be progress. I want to engage with as many people as I possibly can to maybe help someone else. I know it will help me to connect and grow together on my road to recovery.

With Love,

Andy