Facing Catheter-Related Depression: Brian’s Story

My Experience with Catheter-Related Depression

by Brian Hines

I wish I didn’t have to use a catheter to urinate. I wish I hadn’t made mistakes that may have caused my bladder to become dysfunctional, leading me to need a catheter. Also, I wish I hadn’t suffered from so much anxiety and depression during the four and a half years I’ve been a catheter user.

But wishes are one thing. Reality is another. I’m going to be real with you, so this isn’t necessarily a feel-good story.

In a movie about the life of C.S. Lewis, “Shadowlands,” a student tells Lewis, “We read to know that we are not alone.” My hope is that people who have also had problems with using a catheter will read this and realize that even though our struggles are mostly private, we share a determination to make the best of a difficult situation.

How My Bladder Issues Began

Up until the age of 68, I had no significant health problems. My family doctor would tell me at my annual checkups, “You’re a poster child for growing old.” I earned a karate black belt at age 56. I often took my boogie board on vacations to Maui and caught big waves with the locals. I even took up senior citizen skateboarding when I was 64.

I figured that I had many more years of good health ahead of me.

Yes, I had a prostate problem and took medication for it. It didn’t seem like a big deal though. I needed to urinate more frequently, getting up several times a night. I always got an aisle seat on airplanes to ease a trip to the restroom.

Looking back, I should have realized that I needed to see a urologist. It became more difficult for me to start peeing, which is a different problem than having to pee too often. Yet I didn’t mention this to my family doctor. I thought I was just having normal symptoms of an enlarged prostate.

Sudden Urinary Retention and an Urgent Care Visit

Everything changed in May 2017. My wife and I went to visit an old friend who I hadn’t seen in over 40 years. Before getting to his house, I thought about stopping to pee, but I didn’t need to go that bad, so I drove on. Once we got there, our conversation on a deck overlooking the beautiful Deschutes River was so pleasant, I didn’t want to interrupt it by going to the bathroom.

When I finally did, I couldn’t go. Since this had happened before, I figured I just needed to wait a while and try again. I kept trying every half hour or so until mid-afternoon when someone asked why I was visiting the bathroom so much. My friend and his girlfriend told me that this was serious, and I needed to get medical help. It was good advice, which I didn’t take.

Well, actually I did…sort of. We Googled the address of a nearby urgent care center. While driving there, I peed in my pants involuntarily. Luckily, I’d brought along some extra clothes. I changed in the urgent care restroom, then saw a male nurse who asked what my problem was. “I can’t urinate,” I said. “At least, not voluntarily.” When he asked for a urine sample, I told him, “I can’t pee, so that’s not going to happen.”

“Drink three glasses of water,” he said. “Then try to urinate into this bottle.” I should have argued with him, but I didn’t. I sat in the room by myself and drank the water. Then I went into a bathroom and still couldn’t urinate.

By that time, I was distraught. I wasn’t thinking straight. I couldn’t pee on my own but had wet my pants. I was frustrated, tired, fed up. Holding the empty collection bottle in my hand, I walked out and told a different nurse that I wanted to leave.

She asked me, “Do you want a catheter?” I didn’t know or care what a catheter was. I just wanted to go back to our cabin, take our dog for a walk, and wait until I could pee on my own again. Yeah, none of that makes sense. But at the time it did, because I was so upset.

“No,” I told her. “Alright,” she said, “but you’ll need to sign a release form absolving us of responsibility for letting you leave without treatment.” It was a red flag in retrospect, but I scribbled my name on the form and left.

The memory of what happened in the urgent care center is as fresh today as it was four and a half years ago. I agonize over that single word that came out of my lips, “No.” What if I had said “Yes?” Why didn’t I say that one little word? Choosing one word over another may have changed my life for the worse, forever.

While we drove back to the cabin, I involuntarily peed in my pants again. After all, I’d just drunk three glasses of water in the urgent care center, when I already had been unable to urinate for about ten hours. That night, I kept getting up to see if I could pee but I couldn’t. The pain was bad. As soon as the sun was up I told my wife, “I need to get medical help.” So we packed up and drove two hours to Salem where I got an indwelling catheter in the emergency room.

Facing a New Diagnosis and a Prescription for Catheters

Several weeks later, I was still unable to urinate much on my own. My new urologist determined I had an atonic bladder, and I was prescribed to start intermittent catheterization.

Several months after my traumatic urinary retention episode, I asked my urologist if my atonic, nonfunctioning bladder would have gotten back to the way it was if I’d said “Yes” to the offer of a catheter in that urgent care center.

He said, “Perhaps.” I held it together until I got into my car. Then I cried all the way home.

Almost every day since then, I’ve thought about how stupid it was of me to refuse the offer of a catheter. I should have asked what a catheter was. I should have asked what would happen if I didn’t get the massive amount of urine in my bladder out. But I didn’t. And I can’t stop blaming myself for that.

Experiencing Catheter-Related Depression and Anxiety

My wife is a retired psychotherapist. She thinks I have PTSD (post-traumatic stress disorder), and she’s probably right. However, it didn’t take long before I had another mental problem: depression.

(If you’re mildly depressed yourself reading this sorrowful tale, hang in there. It’s going to end on a positive note, once I get through the anxiety and depression stuff.)

I already wasn’t happy, to put it mildly, about facing a lifelong need to insert a plastic tube up my urethra five times a day. Next, I began dealing with sleep issues, and I no longer had any interest in doing things I used to enjoy, like writing posts for my three blogs. Before all this, I was afraid of dying. But at that point, I started to think, “Maybe death wouldn’t be so bad.” I figured at least I’d be free of feeling like I was in an emotional black hole with no exit sign.

My primary care doctor’s office had a psychiatric nurse practitioner who diagnosed me with Major Depression. I was prescribed an antidepressant and then began counseling sessions with a social worker. Over the next few months, this helped me climb out of the black hole I was in.

Depression was in my rearview mirror. Unfortunately, catheter-related anxiety was in the passenger seat right next to me, where it still sits. Worse, sometimes anxiety feels like it’s taken my place in the driver’s seat. However, gradually I’ve gotten better at keeping anxiety’s hands off of my mental steering wheel.

Difficulty Inserting Catheters

I don’t know whether the frequent trouble I have getting a catheter to pass into my bladder is typical for many men or not. Regardless, this has been a longstanding problem for me.

In the early days, I’d call my urology clinic and talk with the nurses who worked with my doctor. “I’m having trouble inserting the catheter,” I’d say. “Do you have any tips?” I was told to take a shower, go for a walk, or wait a while and then try again.

OK, but I wanted to get back to what I’d been doing before my bladder stopped working as it should. Eating out. Going to a movie. Visiting friends. If I went into a restroom at a restaurant to do my catheter thing, then found I couldn’t insert it, I didn’t want to have to interrupt a meal with friends by saying, “Sorry, I’ve got to go for a walk and then see if I can get a catheter into my bladder.” Not exactly a great dinner conversation topic.

Not being able to insert a catheter at bedtime was the worst. I was tired. I wanted to sleep. I needed to urinate. Yet sometimes I’d spend an hour or more lying on the bed, trying to relax with breathing exercises, so the catheter would pass into my bladder.

To make a long story short — and this story really is long — at times I got extremely frustrated and angry. My wife had to put up with quite a few outbursts where I’d either start crying or slam doors or both because I was having such a difficult time inserting a catheter.

Trying Out Catheters To Find What Worked

180 Medical’s Product Specialists helped me sample some different catheters other than the Coloplast SpeediCath Flex Coudé Pro Catheter, which I’d come to know and love. Well, except when I couldn’t get it into my bladder. However, none of them were anywhere near as comfortable and easy to use as the Flex Coudé Pro, so I stuck with it.

Eventually, I had the bright idea of trying a smaller size catheter than the 14 French size I was using. Sometimes, I could insert a 12 or 10 French when the 14 wouldn’t go in.

Even so, I’m still anxious about traveling or going to any place where I might need to use a public restroom. I haven’t flown since I started using a catheter. I haven’t driven by car for more than two hours from where I live.

If I could be confident that inserting my catheter would go smoothly, I’d be hugely happier. That would allow me to view myself as simply differently-abled in how I pee. However, not knowing when I’ll have trouble inserting a catheter — I haven’t been able to predict when this happens — makes me anxious.

And when I have a particularly difficult time, my mind generates flashbacks to the traumatic day and a half back in May 2017 I’ve described. It must be similar to a war veteran hearing fireworks and feeling like it’s a bomb. When I’m unable to insert a catheter, sometimes I feel panicked, like I did when I couldn’t pee at my friend’s house or in the urgent care center.

Life Really Does Go On

However, I don’t want to leave the impression that I’m a total catheter train wreck. I’ve learned a lot over the years. Most days now, things either go smoothly for me or I’m able to handle occasional problems inserting a catheter with no freakout.

While my bladder has recovered some function, I’ve accepted the fact that I’ll probably have to use a catheter for the rest of my life.

I try to remember that life is difficult for everybody, and I’m more fortunate than many. As my wife frequently reminds me, I’m pretty darn healthy overall. I use a chainsaw on our ten rural acres. I put 40-pound bags of salt in our water softener. I can bicycle, lift weights, do Tai Chi.

As I’ve described, there were moments when I thought life wasn’t worth living. However, today, I’m almost as happy as I was before. Almost. And that’s good enough for me, especially given the much darker days I went through with my catheter-related depression and anxiety.

Now I know life isn’t over just because I have to use a catheter five times a day.

About the Author: Brian lives in rural south Salem, Oregon. He’s an author, blogger, and citizen activist.