Struggling with pain six weeks after Ostomy surgery / People to speak with

[jorossart]

Hello,
I have diabetes and chronic pain and struggling six weeks after my ostomy. I was told the six week time period is the most painful moment after having an ostomy. I'm not sure if that is true. I am feeling isolated and would like to speak to some people who went through ostomy surgery - especially those dealing with chronic pain and/or diabetes. If you are willing to speak to me, please send me a direct message.
Joanna Ross

[Shamrock4806]

I'm sorry to hear you're in pain.

I don't recall having any major pain after my double barrel illeostomy.

More like output pain on the skin from inexperience properly sealing my barrier adhesive and wafer to the skin. Or still healing wounds etc. interfering. Once the skin heals up it gets easier but that takes keeping the output off of it and that's hard when it's scabbing etc. more daily changes are required unfortunately. No Sting paste helps, rings don't. Usually the hospital version of ostomy wafers is generic and not tailored to ones body contours, why usually many switch to using Coloplast and seeing an ostomy nurse very regularly to get things right. I took me two years before I got pain free with my ostomy, but then I roughed it myself because staff were so inexperienced.

I have pre-diabetes.

Perhaps a second opinion is in order if it's major pain?

Hope things get better for you.


This is what ChatGPT says:

Short answer: Yes, discomfort or pain can be normal for several weeks, but it should steadily improve—not persist or worsen—by ~6 weeks.

What’s typical:

First 1–2 weeks: Moderate pain, pulling/burning around the incision and stoma

Weeks 3–4: Dull soreness, tenderness with movement, coughing, bending

Weeks 5–6: Mild discomfort or tightness only, especially with activity


What is not normal by 6 weeks:

Sharp or worsening pain
Increasing redness, warmth, swelling
Fever or chills
Severe pain around the stoma itself
Pain associated with leakage or skin breakdown
Those raise concern for infection, hernia, abscess, nerve pain, or skin injury.

[Shamrock4806]

Further ChatGPT

Yes, pain or discomfort can last close to (or slightly beyond) 6 weeks after an ostomy, and diabetes often makes healing slower and discomfort last longer.

What matters most is trend: it should be gradually improving, not flat or worsening.

Why diabetes affects ostomy recovery

Diabetes commonly causes:

Slower wound healing (reduced blood flow + glucose effects)
Higher infection risk
More nerve-related pain (neuropathy can amplify or distort pain signals)
Skin fragility, especially around the stoma and wafer seal

So compared to a non-diabetic patient:

Week 3–4 pain may feel like week 1–2
Mild pain at week 5–6 can still be normal
Skin irritation hurts more and heals slower

What pain is usually “normal” up to ~6 weeks

✔ Dull soreness or pulling around the incision
✔ Tenderness when bending, standing, coughing
✔ Occasional stinging/burning at the stoma edge
✔ Skin soreness from appliance changes

Especially common if:

Blood sugar has been running high
Appliance fit isn’t perfect yet
Abdominal muscles are still weak

What is not normal (diabetes makes these higher-risk )

Contact your surgeon or ostomy nurse if you have:

Pain that is not improving week to week
Sharp, stabbing, or deep abdominal pain
Increasing redness, warmth, swelling, or drainage
Fever or unexplained glucose spikes
Darkened skin, ulcers, or weeping skin around the stoma
Bulging pain → possible parastomal hernia
Diabetics can have “quiet” infections (less redness, more pain), so pain alone matters.

Practical action plan

Watch the trend, not the calendar
Improvement > perfection at 6 weeks
Keep glucose tightly controlled (this matters more than pain meds)
Inspect skin daily with each appliance change
Use an ostomy nurse early — fit issues cause most pain
Avoid lifting/straining until cleared (hernia risk is higher)

Bottom line

With diabetes:

Mild to moderate discomfort up to ~6 weeks can be normal
Healing is slower, pain lingers longer
Pain that plateaus or worsens is not normal

[22Sunpuperwolf22]

Hi Joanna,

I have an ileostomy since 2007, and I have had some past experiences with initial pain after my surgery. My Mom has a colostomy and diabetes as well and has experienced similar pain. I sent a direct message to you to explain the differences in ileostomy surgery and colostomy surgeries and what kind of pain it can cause, whether blockage related , surgery adhesions, or food bolus' flowing through. Feel free to send me a direct message.
Take care,

Jayme