Finding Hope in the Stories of Others

By Scott Steehn

All stories have a beginning, and mine is no different. It started on a cold, slate-colored February day in Erie, Pennsylvania in 1992. I was a successful standup comic who had headlined clubs and theaters in all 50 states and seven foreign countries. I was recently engaged to my soulmate, and we were making plans for a big October wedding. I was just finishing up a great week at a terrific comedy club in Erie and, as I prepared for my two shows on Saturday night, I felt like everything couldn’t have been going any better. But, in just 12 hours, none of those things would matter.

It started when I was onstage during the first show. I began having abdominal pain on my left, lower side. It wasn’t a huge pain and mainly felt like a had a fairly intense need to move my bowels. I finished up my show and made a beeline to the restroom. And…nothing happened. Nothing at all. The NEED was still there, and, in fact, it was getting worse. I, of course, had been constipated before, but this felt somehow…different.

I did my second show, but the pain was now almost unbearable. I headed back to my hotel, stopping only at a drugstore to pick up a laxative. I had convinced myself it was just constipation and had even assigned the blame to the shrimp dinner I’d had the night before. “Fresh Shrimp” in February…in Erie?! What did I expect to happen?

I took the laxative. And I waited. And tried. And waited some more. And then the pain got bad. Real bad. I could barely walk and couldn’t move without intense pain shooting out from my left side. Now I had a new theory. Burst appendix. This was before the days of Web MD, and I was limited to only what my imagination could conjure to freak myself out. So, not wanting to die a ridiculous death in the Erie Hilton, I called a taxi and headed to the hospital.

They got me into an exam room in short order. The doctor examined me and, taking advantage of his fancy medical degree, immediately eliminated appendicitis. So much for that. He then told me he had an idea what it was but wanted an MRI to confirm the results. A quick trip through the “donut of doom” confirmed his initial diagnosis. It was something called diverticulitis. He explained how we all have small abscesses in the colon and how they usually don’t cause any problems. Sometimes, however, those abscesses become infected. It causes horrible pain and constipation, and once it gets this bad, it has to be treated with antibiotics and mass quantities of fluids. I spent a painful week in the hospital and was discharged with very specific instructions on how to adjust my diet and lifestyle to prevent a recurrence. I thanked all the staff for the great job they did, signed some papers, checked out…and promptly ignored his instructions for the next 20 years.

Christmas Eve, 2012. My wife has had enough. The final straw came when I was unable to make it upstairs for the family gift exchange. As soon as it was over, she came down and told me we were going to head to the emergency room. I didn’t have the energy to argue. Plus, I knew she was right. I’d been feeling terrible for almost three years. Something was definitely not right. It seemed like it emanated from the “diverticulitis spot” that I had become intimately familiar with due to the flare-ups I suffered through two or three times a year. The only confusing part was I had undergone a colonoscopy six months prior and had received a clean bill of health. Only much later did I learn that I had received a negligent result. My doctors all agreed- there was no way my problem could have been missed.

I should have known I was in trouble when, after the emergency room doc saw me initially, he asked me if I’d like anything for pain. I jokingly said, “Sure, how about some morphine?” He immediately replied, “Okay, we’ll get that going for you.” Uh oh. A little later he told me I had a blockage that had been caused by a buildup of scar tissue from the repeated flare-ups of diverticulitis. They needed to get rid of the infection and then remove the two damaged sections of bowel. Surgery was scheduled for New Year’s Eve. Merry Christmas and Happy freaking New Year!

I spent the next week in a morphine haze. I met my surgeon, a brilliant young lady who looked impossibly young for someone with that much schooling. She explained that they were hoping to remove the damaged sections laparoscopically. It was a relatively simple procedure that would require a couple of days of recovery in the hospital, a week or two at home, and then back to my normal life. The alternative would be invasive surgery, much longer recovery time, and, while the healing took place, I would need to have a colostomy. Due in part to my opiate fog and also due to my refusal to accept reality, I was 100% convinced everything would be done laparoscopically. No worries.

The first thing I noticed when I came to was something in my throat. Something huge and foreign. As my world blinked into focus, the nurse was there to explain to me that the damage was much worse than they had anticipated. Full surgery had been performed and I was going to be in the hospital for a while. The drugs were very helpful in allowing me to deny exactly what exactly that meant. I was much more concerned with getting the tube out of my throat and the catheter out of the other end. That cavalier attitude about my situation would soon change.

The nurses and staff were great. They changed my colostomy bag for me and allowed me to STILL not grasp my situation. That all changed when I met the ostomy nurse. She was tasked with teaching me the intricacies of daily life with a colostomy. Reality came crashing through the door when I spent 30 minutes hiding in the restroom in tears unable to change my bag. I can’t do this! This isn’t fair! (Conveniently forgetting the 20 years I had spent ignoring my doctor’s orders) Gathering myself, I sucked it up, and FINALLY was able to do it on my own. I was discharged and sent home to recuperate and heal for 30 days before heading back to the hospital for takedown surgery.

I’d like to tell you a story about how well I adjusted. About how I was brave. About how I was thankful to be alive. About how I now appreciated my friends and family even more. About how I would now refused to take all the beauty of life for granted. That’s the story I’d like to tell. But I can’t. It would be a lie. Even though none of you know me, I promised myself I would be 100% honest about my journey. Warts and all. So here goes.

It was awful. I hated every minute of it. I thought having a colostomy was gross. And hard. Life wasn’t fair. NOTHING was fair. I can’t do this. There were the usual indignities. Accidents. Broken seals. Excess gas. I was in hell. Never for one moment did I think how my situation affected those around me. How my actions and attitude affected my family, and, my wife in particular, who only wanted me to get better and get back to being the man she married. As an added bonus, I was also taking 12 Oxycodone a day for pain, and, rightly suspected, now had a raging opioid addiction. My day consisted of sleeping, crying, bitching at my family, thinking about death, and dealing with my new, hated, appendage. Day after day. Rinse, lather, repeat.

Then, one day while noodling around on the internet, I found UOAA. I started reading about my condition. And I started reading other people’s stories. I found out just how many dealt with this particular challenge. I was stunned. And the more stories I read, the more my respect grew. People who had to deal with this for years. For decades. Tears streamed down my face as I read their stories. I’d love to tell you everything changed that day. How my attitude changed overnight and how I became Mr. Positivity. Alas, it wasn’t that simple.

What DID happen, is I became embarrassed about my actions. I had always prided myself on being a tough guy who dealt with problems head-on. The more I read on ostomy.org, the more I knew this was a lie.

Every day I read the stories of real heroes. Men and women who possessed the biggest superpower of all, the ability to live a normal life despite adversity that was currently bringing me to my knees. To say they inspired me, would be an understatement. Closer to the truth would be, they saved my life.

They gave me practical advice, “insider tips” on everything from bathing to sex, and something I hadn’t felt in a long time. They gave me hope. I never posted on the UOAA discussion board. Hell, I don’t think I even registered. Due to my “temporary” status, I really didn’t think anyone wanted to hear my whining. If everything went well, my life would go back to “normal,” while these people would continue to lead quietly heroic lives day after day, year after year. I didn’t feel worthy. And I still don’t.

That’s my story. Sure, there’s more, including an unsuccessful takedown, massive infection, emergency surgery, and an ileostomy for a few more months. There was a wound vac, and an in-home nurse to change my dressing daily. And, of course, after 6 ½ months of daily opioid use, I still had to deal with that King Kong-sized habit. Yet, in the end, I was okay. It probably took almost two years to feel like me again. And even that isn’t completely accurate.

I recovered, I felt better physically, but “myself” was different. I was more appreciative, more humble, and more thankful. I was well, but I’d never be the same.

So, thanks for reading. Thanks to Ed Pfueller for giving me an opportunity to share my story. Thanks to the whole team at UOAA and, for that matter, all of the sites designed to educate, inform, and help everyone on this particular journey. Lastly, more thanks than I could ever express to all the men and women who bravely shared their stories through blogs and forums. Thanks for your bravery. Thanks for your humor. And thanks for giving me the courage to understand and accept my condition with, what I hope, was grace and determination that would make you all proud. God bless each and every one of you and may your lives be full of the joy and love that you so richly deserve. I am forever in your debt.

 

2 replies
  1. Douglas
    Douglas says:

    Scott,
    Interesting story. Im sure your comedic mind helped you embellish, even if only slighty.
    Your tale is actually very similar to mine. I had a bout with diverticulitis in my 30s that healed up on its own. I continued to eat whatever I pleased for 25 years and then it all hit the fan. In March 2020 I had a colectomy and now have the dreaded colostomy bag. And i too hate that unnatural appendage. But i feel so much better otherwise that I’m coping with it until the takedown happens sometime in June or July.
    Unlike yourself i didn’t experience a lot of pain. I received pain shots 2 times a day for the 4 days hospital stay. When I got home I took one tylenol extra strength and that was it. Not even an aspirin since March. (aspirin is not good when recovering from surgery anyway).

    Your 2 year ordeal is very significant life event. We’re fortunate that we live in a time with modern medicine. Im hoping that my takedown goes as smoothly as the colectomy. Anyway, my doc says I’m in good health for my age. Even refered to me as “young” and I’m 62… lol

    Thanks for sharing.

    Reply
  2. Scott Harris
    Scott Harris says:

    I just read your story. I had a bout with diverticulitis that lasted 6 1/2 years. I was in and out of the emergency room, admitted for hospital stays ranging from 2-3 hours to 2-3days and upwards of 12 to 15 days. And all they would do is give me some pain meds, antibiotics, anti nausea meds, and send me home. No matter the length of time I was there.
    They did numerous ct scans, a few xrays, and all said I was suffering from diverticulitis, but no one seemed to take it too seriously as I was told it would eventually get better. Time went by and there were moments when I thought I was going to be okay. Then, reality struck. I got really sick.( Unlike the first time it happened, where I was vomiting blood, causing a hiatal hernia as well as esophagitis due to the vomiting blood and stomach acid and bile) I was constantly nauseated, vomiting every 15-20 and had more visits to the emergency room. This happened just this year. My longest stay in the hospital (pre-covid19) was last sept of 2019. That lasted 15 days. 15 days of antibiotics, anti nausea and vomiting meds, pain meds.
    That’s when my physician finally referred me to a surgeon. My first visit was uneventful. But the follow up appointment wasn’t so good. I’d been nauseous and vomiting for about a week at that point. I got sick while waiting to see him. I had a sickness bag I was carrying with me and even got sick while talking to him.
    He asked how long it had been going on and I told him that it had been happening off and on for the past few weeks. Then he asked how long I’d been dealing with it due to the record of emergency room visits and the ridiculous frequency of them. I told him almost 7 years. That’s when he said that was far too long and wondered why the issue of my severe diverticulitis had not been addressed. He said that, that time frame was far too long before it became the major problem that it had become at that point.
    He stated that the only way to deal with the issue would be surgery. And that’s when he told me what might or could happen if surgery was not done, but he also told me what will happen pre and post surgery. I got a bit scared. I told my wife of 20 years I was scared.
    That, according to her, the first time I’d ever said I was afraid of anything. I went in for surgery on july 6th 2020. I woke up and saw the colostomy bag. I began to cry because it was not what I wanted to see. When the surgeon came to see me a couple of days later while I was still in the intensive care unit, he explained why he had to do it that way. I understood, but still didnt. During that time, they moved me to a regular room. I still had visits from the surgeon as well as the other attending surgeons. I was doing well according to them. But I had no appetite. I slept 90% of the time. I lost a huge amount of weight. I went from 230 down to 165.
    I’m at home now, but still have one more surgery to go… the closure of the ostomy. That happens September 2nd (about 2 weeks from now.) And like you experienced, I too am experiencing lows and highs in my emotions. I’m not talking to my family in a rough manner, but I’m feeling more appreciation for things, such as missing my grandson when he’s not around, he is a huge part of my life right now, as he should be all the time. Missing being out riding my motorcycle, that is a big part of who I am as well. But mostly, not having my 2 year old grandson around is what gets to me. I video chat him every day. But I know that at some point, I’ll not have this extra thing attached to me and I’ll be better. He is what keeps my spirits up. I’m 55 and I know I should keep a positive out look and I try. But there are still those times that just make me feel like I’m not myself. To my grandson, I’m a super hero. I’m Captain America to him. And I want that feeling back. To be myself again, you know? Your story just let me know that I was not alone on my journey to getting healed and feeling better. Thank you.

    Reply

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