APPENDICURE

What Real Patients Told Us About Their Experience

Based on: Bleicher et al., Annals of Surgical Oncology (March 2026)

I posted this in March when the study came out, but wanted to add in some new information I’ve learned in regard to GLP-1’s. Keep reading as I’ve added in that information towards the end.

When patients learn they may be candidates for CRS/HIPEC surgery, they often want to know what recovery actually feels like from the people who have been through it. Clinical outcomes data can tell us survival rates and complication rates, but it rarely captures the texture of daily life in the months that follow a major operation.

A study published in the Annals of Surgical Oncology in March 2026 set out to fill that gap. Researchers interviewed 14 patients who had CRS/HIPEC surgery for non-appendiceal gastrointestinal cancers and spent an hour with each person, asking them to describe their quality of life and how they adapted over time. The findings are honest, nuanced, and worth understanding before surgery and during recovery.

Appendicure has summarized the key themes below for patients and families navigating this decision.

A Note to Our Community

We know that many of you have been through CRS/HIPEC yourselves. Studies like this one are valuable, but 14 participants can only tell part of the story. We would love to hear from you. What did your experience look like? What do you wish had been asked? What do you think gets missed when researchers study this surgery?

Share your experience with us at appendicure.com. Your perspective helps us advocate more effectively for patients facing this decision.

A Note on This Study

This study focused on patients with non-appendiceal GI cancers (such as colorectal or gastric cancer) who had CRS/HIPEC. While the surgical procedure is the same as what appendiceal cancer patients undergo, some details of the experience may differ. The emotional and recovery themes, however, are broadly relevant to anyone preparing for or recovering from CRS/HIPEC.

What Is CRS/HIPEC?

Cytoreductive surgery (CRS) combined with heated intraperitoneal chemotherapy (HIPEC) is a major surgical procedure used when cancer has spread to the peritoneum, the thin layer of tissue that lines the inside of the abdomen and covers most abdominal organs. The goal is to remove all visible tumor, then wash the abdomen with heated chemotherapy to target any remaining cancer cells.

It is a significant operation, typically lasting many hours, and recovery can be long and demanding. But for carefully selected patients, it can offer a chance at longer survival or even cure.

What Did This Study Do?

Researchers interviewed 14 patients (median age 57; half women) who had CRS/HIPEC surgery at a major cancer center. The interviews took place a median of about 17 months after surgery, giving patients enough distance to reflect on the full arc of their experience rather than just the immediate aftermath.

Each conversation lasted about an hour and explored quality of life, emotional wellbeing, physical recovery, and adaptation over time. The research team analyzed the transcripts to identify recurring patterns across patient stories and organized them into six major themes.

The Six Themes: What Patients Shared

1.  Life Before Surgery Was Already Hard

Most patients described their quality of life before surgery as very poor. By the time they were referred for CRS/HIPEC, they were already dealing with significant symptoms: pain, fatigue, digestive problems, and the emotional weight of a serious diagnosis.

This context matters. Patients were not starting from a place of good health. Surgery, though demanding, represented the only realistic path forward, and understanding that baseline helps explain why many patients ultimately felt the trade-off was worth making.

In Patients’ Own Words

“I was already not doing well. The surgery felt like my only real option.” – Jenny, Study Participant

2.  Hope Was a Powerful Force

When patients learned that CRS/HIPEC was an option for them, many described a surge of hope. In a landscape where treatment options can feel limited, being referred for this surgery meant there was a chance, and that mattered enormously.

This hope helped many patients push through the grueling recovery process. It gave them something to hold onto during the hardest stretches.

3.  Emotional Recovery Was Complex

The emotional side of recovery was significant and varied widely from person to person. Patients described gratitude and relief alongside anxiety, grief, and fear of recurrence. Some found renewed purpose in their lives. Others carried the psychological weight of what they had survived long after the physical healing had progressed.

Emotions did not follow a simple or predictable timeline. Many patients found that emotional healing was nonlinear, with good days and difficult ones arriving without warning even many months after surgery.

4.  Physical Recovery Was Real and Lasting

Physical effects often persisted well beyond the initial recovery period. The two most commonly reported long-term challenges were persistent fatigue and functional limitations, meaning difficulty doing activities that had been routine before surgery.

These changes had real-world consequences. Some patients were unable to return to work. Others experienced social isolation because they could no longer participate in activities they had once enjoyed.

It is worth noting that for many patients, quality of life does improve in the months following surgery, often returning toward their pre-surgery baseline between 3 and 12 months. But that baseline, as noted in the first theme, was already compromised for many patients before they ever went into the operating room. Returning to it is meaningful progress, but it is not the same as a full return to pre-illness functioning.

What This Means for You

Long-term fatigue and functional limitations are common. This is not a sign that something went wrong — it reflects the magnitude of this surgery. Planning ahead for these realities can help you and your care team put the right support in place.

5.  Finding a New Normal

Over time, most patients arrived at a place of acceptance. They acknowledged that life after CRS/HIPEC was different and adapted to it. Researchers describe this as finding a “new normal,” and it emerged as one of the most consistent themes across the interviews.

This is not the same as simply coping or settling. Many patients genuinely found meaning, connection, and quality in their lives after surgery. Their priorities shifted, and what mattered most to them often changed in ways they had not anticipated.

6.  Response Shift: Why Patients May Rate Their Quality of Life Differently Over Time

Perhaps the most intellectually interesting finding in this study is a psychological phenomenon called response shift. This occurs when a person’s internal standards, values, or definition of quality of life changes in response to a major health event. Put simply, what a patient means when they say they feel good at 18 months after surgery may be quite different from what they meant by that phrase before they were ever diagnosed.

Patients in this study showed evidence of this kind of internal recalibration. Many rated their quality of life as reasonably good while simultaneously acknowledging significant limitations. This is not denial. It reflects a genuine psychological adaptation that allows people to find wellbeing within new and changed circumstances.

Why This Matters for Research

Standard quality of life questionnaires may not fully capture this kind of internal shift. Researchers and clinicians need to account for response shift when interpreting how patients are doing, and future studies should build this into their design.

An Emerging Conversation: Low-Dose GLP-1s for Persistent Diarrhea

Several members of our community have told us that their doctors have prescribed low-dose GLP-1 receptor agonists, the class of medications that includes liraglutide and semaglutide, to help manage persistent diarrhea following CRS/HIPEC. We looked into the research to understand whether there is a scientific basis for this approach.

The short answer is that there is a plausible biological rationale and emerging evidence, though no clinical studies have been done specifically in CRS/HIPEC patients.

Why Diarrhea Can Persist After CRS/HIPEC

CRS/HIPEC frequently involves manipulation or resection of sections of the bowel. When the ileum, the final portion of the small intestine, is affected, it can disrupt the body’s ability to reabsorb bile acids. Those bile acids then reach the colon in excess and trigger watery, urgent diarrhea. This is known as bile acid diarrhea, and it can be chronic, unpredictable, and significantly impact quality of life.

“My gastroenterologist just put me on GLP-1s for diarrhea and it has been a game changer. It is just a low dose each week. I had tried everything else out there and after 15 months of diarrhea everyday, I may have it once a week now.”

– Olga, Appendix Cancer Survivor

“I started a GLP-1 and have never felt better. I have no diarrhea or bowel issues, I have been eating more protein, lifting weights and feeling so good.”

– Amy, Appendix Cancer Survivor

Where the GLP-1 Research Stands

GLP-1 receptor agonists were developed for type 2 diabetes and obesity, but researchers have been investigating their effects on gut function for several years. The mechanism is relevant: these medications slow intestinal transit time, reduce upper GI secretions, and may inhibit bile acid synthesis in the liver, all of which address the underlying drivers of bile acid diarrhea.

A randomized controlled trial found that liraglutide outperformed colesevelam, the standard-of-care bile acid sequestrant, in reducing daily stool frequency in patients with bile acid diarrhea. A 2023 literature review and case series published in Frontline Gastroenterology documented patients with severe diarrhea following ileal resection who were treated with liraglutide and experienced objective, measurable improvement in symptoms. A 2025 review in Clinical and Translational Gastroenterology further examined the evidence, reinforcing that liraglutide specifically appears to be effective for bile acid diarrhea, while longer-acting agents like semaglutide have shown less consistent results in this context.

None of these studies were conducted in CRS/HIPEC patients specifically. But the underlying physiology overlaps considerably, and the reports coming from our community suggest that some oncology and gastroenterology teams are already applying these findings in practice.

What We Do Not Yet Know

There are no published clinical trials evaluating GLP-1 receptor agonists specifically in CRS/HIPEC patients. We do not know the optimal dosing for this population, how long treatment should continue, or how it interacts with other aspects of post-surgical care. This is exactly the kind of gap that warrants formal study.

If you are experiencing persistent diarrhea after CRS/HIPEC and want to explore this option, talk to your oncologist or a gastroenterologist familiar with your surgical history. Do not start or stop any medication without guidance from your care team.

We Want to Hear from You

Has your doctor prescribed a GLP-1 for diarrhea after CRS/HIPEC? Has it helped? We are actively tracking community experiences and would like to share them with researchers working in this space. Reach out to us at appendicure.com.

What This Means for Appendiceal Cancer Patients

While this study focused on non-appendiceal GI cancers, the surgical procedure and many of the emotional and physical patterns closely mirror what appendiceal cancer patients experience. For anyone preparing for or recovering from CRS/HIPEC, a few practical points stand out from these findings.

Recovery unfolds over many months. Most patients see meaningful improvement between 3 and 12 months after surgery, but some effects can persist longer. Fatigue and functional limitations are common and do not reflect a failed recovery. Letting your care team know what you are experiencing day-to-day gives them the information they need to help. Emotional wellbeing deserves as much attention as physical healing, and seeking support from mental health professionals or patient communities is a reasonable and worthwhile step. Many patients also find that their sense of a good life genuinely changes over time in ways that can be surprising and, for some, even meaningful.

Questions to Ask Your Care Team

Questions to Ask Before Surgery

What physical limitations should I expect, and for how long?

What support resources are available for fatigue management?

Are there occupational therapy or physical therapy programs to help me prepare or recover?

What emotional support services does your team offer?

What does a realistic recovery timeline look like for my specific situation?

Will this surgery affect my bowel function long-term, and what should I watch for?

Questions to Ask After Surgery

My fatigue has not improved much. What are my options?

I am struggling to return to my previous activities. What support can help?

I am experiencing persistent diarrhea. Is bile acid malabsorption a possibility, and are there treatment options including GLP-1 medications?

I am feeling anxious or depressed. Who on your team can I speak with?

How will you assess my quality of life over time, and how can I share what I am experiencing day-to-day?

Are there clinical trials or research studies I could participate in related to my recovery?

Glossary of Terms

CRS (Cytoreductive Surgery)	Surgery to remove all visible cancer from the abdominal cavity.
HIPEC	Heated Intraperitoneal Chemotherapy — chemotherapy delivered directly into the abdomen at elevated temperature during or just after CRS.
Peritoneum / Peritoneal Carcinomatosis	The peritoneum is the tissue lining the abdominal cavity. Peritoneal carcinomatosis means cancer has spread to this lining.
Bile Acid Diarrhea	Chronic diarrhea caused by excess bile acids reaching the colon, often following bowel resection or surgery affecting the ileum.
GLP-1 Receptor Agonist	A class of medications (including liraglutide and semaglutide) that mimic a natural gut hormone. Used for diabetes and weight management, and increasingly studied for their effects on gut motility and bile acid regulation.
Quality of Life (QOL)	A broad measure of physical, emotional, and social wellbeing, not just the absence of disease.
Response Shift	A change in a patient’s internal standards or values that affects how they rate their own wellbeing over time.
New Normal	The adjusted baseline of daily life that patients adapt to after a major illness or surgery.
Functional Status	A person’s ability to carry out everyday activities like working, walking, and self-care.

About Appendicure

Appendicure is a nonprofit patient advocacy organization dedicated to appendiceal cancer awareness, patient education, and funding clinical research. Visit us at appendicure.com.

You might also like these blog posts: Hair Loss After CRS/HIPEC & Hysterectomy: What’s Happening and What Can Help and “Did They Get It All?” What a New Study Reveals About Cytoreductive Surgery and the Limits of Human Vision

This post is for informational purposes only and does not constitute medical advice.

Always consult your care team with questions about your specific situation.