Goodbye Bowel Program, Hello Colostomy (A Farewell to Butts)


Ian Ruder

This spring, after almost 24 years of ever-lengthening mornings sitting on my shower chair, I put away the lube and gloves, and said farewell to bowel programs and hello to a colostomy.

The bowel programs that started as an effortless hour on my side in the hospital so many years ago had devolved into a grueling two-to-three-hour sludge every other morning. With the time and assistance I needed, the routine had become the anchor of my life — often determining my schedule and my emotions.

I’d learned to live with the long, monotonous mornings sitting in my room waiting for my bowels to respond and the scheduling complexities that came with them. But over time a more sinister problem emerged: hemorrhoids.

At some point in the last 10 years, my hemorrhoids went from being a rare, minor problem to the biggest burden in my life, one that constantly weighed on me. I turned my music up to drown out the sound of the dripping blood splattering on the floor, and I learned to look away from the sheets after transferring so I wouldn’t have to see how much blood I lost.

One doctor suggested I was exaggerating how much blood I was losing and told me, “You know, women bleed every month.” It took a hemorrhoid squirting blood directly into his eye to make him a believer. I still fired him.

In hopes of avoiding the dreaded “c” word, I talked with specialists and peers, scoured what little literature exists and made myself a regular in all the online forums. I tried everything: banding, sclerotherapy, cauterization, a whole new routine using a Peristeen and finally last year, a hemorrhoidectomy.

Sometimes a combination of the above would buy me six to 12 months in the clear, but the hemorrhoids always came back — usually worse than before. My strength and energy levels yo-yoed, as I’d build up my endurance only to lose it again. I needed multiple rounds of iron infusions and a blood transfusion.

The hemorrhoidectomy had always been the last line of defense in my efforts to ward off a colostomy, as it is a more serious surgery with a lengthier recovery in exchange for longer-lasting results. Ten months post-op, it seemed to have delivered on all fronts. Then one morning this January, I heard the splatter. It grew steadier over the next two weeks. On a particularly bloody Valentine’s Day, I decided I’d had enough.

The hemorrhoids had won. I called my surgeon and asked to schedule the colostomy as soon as possible.

By my count, I’ve probably endured around 4,500 bowel programs. If you figure an average of 2.5 hours for each one, I’ve spent somewhere in the ballpark of 11,000 hours waiting on my shower chair. That’s over 450 full days of my life.

Sitting there one last time as I did the final preparations for the colostomy, I thought back to a series of posts I’d read years ago in a now-extinct forum for quads. In the main chain, one man detailed his struggle to treat his hemorrhoids and sought novel solutions and advice.

The people who responded shared nearly identical stories that all ended in colostomies. They encouraged the poster to bite the bullet and schedule surgery. I remember thinking I’d show them. I was confident I’d figure out how to beat the hemorrhoids.

There will always be a part of me that wonders what the last decade would have been like if I’d bitten the bullet back then. What if I had all that time back? What if I had avoided all the stress and damage I endured?

But for the most part, I’m ready to move on. I’m still adjusting to the realities of a colostomy, but I’m ready for something new.


Support New Mobility

Wait! Before you wander off to other parts of the internet, please consider supporting New Mobility. For more than three decades, New Mobility has published groundbreaking content for active wheelchair users. We share practical advice from wheelchair users across the country, review life-changing technology and demand equity in healthcare, travel and all facets of life. But none of this is cheap, easy or profitable. Your support helps us give wheelchair users the resources to build a fulfilling life.

donate today

19 Comments
Oldest
Newest Most Voted
Inline Feedbacks
View all comments
Tricia Roth
Tricia Roth
1 year ago

This is a useful article. Thank you for sharing. I would like to hear how it goes after you get the colostomy.

Cathy
Cathy
1 year ago
Reply to  Tricia Roth

Me too. How is it going now? I’m thinking about it

Ken
Ken
1 year ago

I wish this article went further than how the procedure way, your recovery time, and how you are doing now.

Tony
Tony
1 year ago

I too bit the bullet last November after four decades of the every other day bowel routine, that sometimes lasted 3 hours, and opted for a colostomy. I didn’t have hemorrhoid issues but instead dealt with anal fistulas on three occasions. The latest one would have required cutting into the anal sphincter, which would have taken months if not years to stop leaking. Anyway, now I wear a colostomy bag and it is a big time saver, but it’s still a little harder on my psyche than I thought it would be. Time does normalize these things, but aging with a disability ain’t for the meek.

Sadie
Sadie
1 year ago
Reply to  Tony

Yeah, that fistula stuff is brutal. I’ve had 4 surgeries to correct. Not sure I’m ready for the C word, but it has entered my mind.

Richard
Richard
1 year ago

Good for you. I had a colostomy in 2014 and should have had it done much sooner

Holly
Holly
1 year ago

I had a colostomy done in 2018. I hate it, but I hated the bowel accidents, bathroom time, hemorrhoids, and so on, much, much more! The drawbacks of the colostomy are odour, and having a poo bag taped to my belly. But the benefits are well worth it. I would have done it sooner had I known the freedom it would give me. I’m now looking into having a mitrofanoff surgery to make by urinary tract as easy!

Judy Warren
Judy Warren
1 year ago
Reply to  Holly

I have a colostomy. You can use a liquid named m9 to prevent odor. You just squirt a Little into your bag

Bobby Helco
Bobby Helco
1 year ago

I so relate with your words and experiences. I am 36 years post injury and my bowels have become more and more impactful to my life. I have talked with a surgeon about getting a colostomy bag. He highly recommends it. But I haven’t done it yet because I can’t find out what the recovery looks like. I am a t4-5 para. Fairly active, work a full time job (from home thanks to pandemic), own a house, am single with a teenage daughter in the house. I have read that for able bodied people they have to avoid lifting any weight for months post surgery. How do you handle that as a para or quad? I transfer multiple times a day. I bend over onto my legs a lot everyday. Getting dressed requires me to lean over to both left and right to pull my pants up. How do you deal with all of this while the colostomy is healing? I have so many questions and I don’t know where to go to find the answers.

Pearl
Pearl
1 year ago
Reply to  Bobby Helco

Can’t your surgeon put you in contact with an ostomy nurse to find out the recovery time? I recovered in a wk but you will need someone to help you for about a few days. I find it disgraceful that your doctor can’t assist you better. Sorry for your frustration.

Holly Poupore
Holly Poupore
1 year ago

Hey Ian, I too gave up after 15 years of daily bowel care and had colostomy surgery in November. Best decision I ever made…life changing really and in hindsight something I wish I would have done years ago!

Adrienne
Adrienne
1 year ago

You know as well as all quads the trauma of toileting & the time it takes. “My bowels haven’t moved this morning” oh well, don’t worry, you’ll go later in the day, and just hope there is someone around who can help clean up the mess. It can certainly wreck your day & plans. One specialist told me 2 hours was far to long to be sitting on the commode. Well, he didn’t get that right!!
So, yes, go for a colostomy and save all the heartache. I’M STILL ON THE ELECTIVE SURGERY LIST. 👏👏

Nicholas Bleser
Nicholas Bleser
1 year ago
Reply to  Adrienne

I don’t know where you live or your insurance situation but I’m in the US and have medicare. I went in to consult with the surgeon and was on schedule two weeks later. It was not considered an elective surgery according to them. I paid a copay of a little less than $500.

Not bragging just thinking you might want to talk to another doctor.

Julie Lineberger
1 year ago

Ian, thank you for sharing your truth. I look forward to our paths crossing again one day. Julie

Roberta Palmer
Roberta Palmer
1 year ago

Thanks for sharing such a personal issue Ian. This is such a big topic among the SCI community. I hope all is going well with your recovery and adjustment to your new routine. I’d love to see you write another article about the preparation for your colostomy as well as the recovery and what you’ve learned about the different types of products out there and what works for you and why.

Derrick Wine
Derrick Wine
1 year ago

I had hemmy issues for years. I dreaded the mornings for bowel care(every other day). I bleed a lot. I tried dozens of things to try. Nothing worked. Bleeding everytime until I had surgery to remove hemmy and started using Mirlax.
That helped some bleeding. Then I got sore on my bottom. Doc said that I should get colostomy to keep from sore from getting infected.
I did get operation. I was in hospital for several days until I had bowel movements to make sure it worked. That was it. I wished that I woulda done it years ago. My caregiver can change my whole colostomy bag under 5 minutes. instead of hours sitting on toilet.She can just change bag in 30 seconds. Easier than baby diaper changing. No more “poop in pants” & having to set in it until caregiver could come. Doc said that I could reverse colostomy if I wanted. No way…….Not only great for me but much easier for caregiver to deal with. I had caregivers quit due to bleeding bowel regimes.

Nicholas Bleser
Nicholas Bleser
1 year ago

This is my exact story! Although, in my 16 years post injury, I never dealt with my hemorrhoids surgically. I did wind up in the hospital with a rectal infection. The surgeon came in and asked me if I ever thought about a colostomy. I cursed her as soon as she left the room.7 years later that same surgeon performed my surgery. I’m now 98% independent with my bowel routine. I only need help cutting my wafers. I’m a C6/7 quad.

Great article! Seems it’s getting more popular.

Last edited 1 year ago by Nicholas Bleser
Maddie
Maddie
1 year ago

This is our situation exactly, except as a C2 quad, it has been impossible to even get the consultations to deal with the hemorrhoids. My husband was bleeding 1-3 cups per bowel program and the program expanded from 1 hour to a 3-4 hour crime scene nightmare. We were desperate for banding or a hemorrhoidectomy. My husband is on a ventilator, no colorectal surgeon would even do a consult. Today, with my husband hospitalized for a different reason, a colorectal surgeon visited him, discussed the hemorrhoids, and offered a colostomy. He’s on the schedule in 3 days. Your article appeared in my news feed 5 minutes after this decision, so I sent it to my husband, and he is SO GRATEFUL to hear this story. Thank you!

scott-jewell1966hotmail-com

May I interview you Ian, on my podcast Scott in the System. I am going though similar issues myself.