Anyone know anyone with a SCI who irrigates?

[Achabapz]

A friend of mine's son, was in an accident April of 2025 and broke his neck at C3-4. He is an incomplete quad and his mother does his bowel program currently. He is thinking about a colostomy to manage his bowels with irrigation. (hoping he can do this independently). I'm an ostomy nurse and am looking for someone (maybe close to his age (21) who currently irrigates and could talk with him to discuss the good, the bad and just irrigation in general.
Thoughts?

[Shamrock4806]

This is a response from ChatGPT 5.2 which can be very helpful but not always accurate. You can download the app and ask it yourself. It's been a very good assistance for me.


Below is a structured response aligned with your request.

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1. Direct Answer

Yes—this is a reasonable request, and peer-to-peer discussion can be very valuable for a 21-year-old with a high cervical SCI considering a colostomy with irrigation. While finding an exact age and diagnosis match is difficult, there are established pathways to connect him with young adults who irrigate, including those with SCI, who can speak candidly about independence, complications, and lifestyle trade-offs.

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2. Clinical Reality Check (Important Framing)

Before focusing on peer connection, it helps to anchor expectations:

C3–4 incomplete quad:

True independent irrigation is uncommon unless he has:

Good upper-extremity function (tenodesis or better)

Reliable trunk balance (or adaptive seating)

Strong caregiver backup for setup/troubleshooting


Many patients achieve functional independence (directing care, partial setup, predictable emptying) rather than full physical independence.


Colostomy + irrigation in SCI:

Can dramatically reduce bowel program time (often from hours → 30–60 min every 24–48 hrs)

Improves continence and social confidence

Requires manual dexterity, equipment management, and problem-solving ability

Irrigation failure, mucus, stomal stenosis, and autonomic dysreflexia (AD) must be discussed frankly


This should be presented as control and predictability, not “set-and-forget.”

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3. Best Ways to Find a Peer Who Irrigates

A. United Spinal Association (Highest Yield)

United Spinal Peer Support Program

They actively match:

Age

Level of injury

Bowel management method (including ostomy + irrigation)


You can request:

“Young adult with SCI who irrigates a colostomy”


Clinician-initiated requests are welcome.


B. SCI-Specific Communities (Where Irrigation Is Discussed Honestly)

These tend to be more candid than general ostomy forums:

CareCure Community (Rutgers)

Longstanding SCI forum

Many users with decades of bowel management experience

Irrigation discussions are common


United Spinal Online Forums

Facebook groups (private, SCI-specific):

“Spinal Cord Injury Support (Young Adults)”

“SCI Bowel Management & Autonomic Dysreflexia”

(You may need to post on his behalf or ask moderators for a private introduction.)

C. Ostomy Organizations (Lower SCI Density, Still Useful)

UOAA (United Ostomy Associations of America)

Youth ostomy programs exist

Fewer SCI irrigators, but still potential matches

Some irrigators are young trauma patients

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4. Topics He Should Hear From a Peer (Good / Bad / Reality)

You may want to coach the peer conversation around these points:

The Good

Predictable bowel emptying

Freedom from daily rectal programs

Less caregiver involvement over time

Better body confidence at his age


The Bad

Learning curve (weeks to months)

Occasional incomplete evacuations

Mucus output between irrigations

Supplies, travel logistics, and setup time

Irrigation failures happen—plan B needed


SCI-Specific Risks

Autonomic dysreflexia during irrigation

Loss of independence if illness or fatigue occurs

Need for backup caregiver even if “independent”

Abdominal spasticity interfering with flow

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5. Practical Guidance for You as the Ostomy Nurse

Frame irrigation as a tool, not a cure

Emphasize trial mindset (e.g., “We reassess at 6–12 months”)

Encourage adaptive strategies:

Pre-assembled irrigation kits

Gravity-fed systems

Consistent timing to reduce AD risk


Reinforce that many young SCI patients report regret only when expectations were unrealistic, not because irrigation “didn’t work”

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6. Action Plan (Concrete Next Steps)

1. Contact United Spinal Peer Support and request a young SCI irrigator

2. Post a clinician-mediated request in CareCure

3. Prepare him for:

Partial independence first

Backup plans

[NEskier]

A friend of mine's son, was in an accident April of 2025 and broke his neck at C3-4. He is an incomplete quad and his mother does his bowel program currently. He is thinking about a colostomy to manage his bowels with irrigation. (hoping he can do this independently). I'm an ostomy nurse and am looking for someone (maybe close to his age (21) who currently irrigates and could talk with him to discuss the good, the bad and just irrigation in general.
Thoughts?

There is a separate forum for irrigation. viewforum.php?f=12 It doesn't look too active. I hope moderator otdave chimes in. He irrigates and may have ideas for you. You might want to search for a local ostomy group as well. Chat GP is fine for ideas, but not a guaranteed source for everything. Best of luck helping your friend.

[ot dave]

Achabapz,

Hi there. Irrigation was a game changer for me...don't think it would matter what age you are!! I irrigate every morning. Takes about an hour or so, and I can go up to 2 days without output. This gives me reduced anxiety about full pouches/odors. It allows me to live as independently as I did before my colostomy. When I make travel plans, I make sure to figure out how I'm going to irrigate. I have a travel kit that has different items that make the process doable away from home. I even irrigated in a tent in Colorado for a couple of weeks while Elk hunting!
I would think that getting a colostomy with a C3-C4 spinal injury would improve the quality of life for the son as well as his mother. He can irrigate sitting upright. No need for transfers to and from a bed. No need to wait on bowel care procedures to take effect, etc. Clean up is a lot easier as well.
As an occupational therapist, I know that each C3-C4 can have different residual motor skills than another, depending on where the break occurred. But, if he has good control, there shouldn't be a reason that he couldn't irrigate himself. He might need help with getting the water, filling the irrigation bag, etc., but functionally, it doesn't require a ton of fine motor skills, more gross motor in nature. A good OT could help him maneuver through the process to make it as independent as possible for him.
Have them check out the irrigation board and look through the discussions there. There are also many videos on YouTube with folks showing how they actually irrigate. I used one of those videos as a foundation for how I continue to irrigate today. That combined with all of the tips and suggestions from other gators, I've got a pretty good system going these days. I've been irrigating for over 15 years now, and can't imagine going back.
Hope that helps some.

David