Surveillance Guidelines
Surgery
Life Without a Colon
Surveillance Guidelines
Polyp Management and Surveillance Guidelines
During upper or lower scopes, polyps are removed so that the polyp may be biopsied. Depending on polyp burden (size, number, and pathology of the polyps), polyps may be managed for a period of time by scopes alone – removing and biopsying polyps. However, when polyp count becomes too high or dysplasia becomes too high, scopes may no longer be enough. In the case of upper scopes, it is not uncommon for patients to have stomachs carpeted with polyps that are not fully removed and only select polyps are biopsied. Medical providers make these decisions based off polyp size, appearance, type, location, and patient’s personal history.
In addition to surveillance, chemoprevention may be considered, particularly for select patients with progressive polyp burden.
The following information regarding surveillance is referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric V.1.2025. © 2025 National Comprehensive Cancer Network, Inc. All rights reserved. Accessed January 8, 2026.
And the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Soft Tissue Sarcoma V.1.2026. © National Comprehensive Cancer Network, Inc. 2026. All Rights Reserved. Accessed January 22, 2026.
To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
To view patient guidelines, visit National Comprehensive Cancer Network Patient Resources
Colorectal Cancer Surveillance
A high-quality colonoscopy is recommended to be completed yearly starting at age 10-15 years and earlier if symptomatic such as experiencing bleeding, anemia, persistent diarrhea, etc.
Life’s a Polyp Foundations maintains the stance that colonoscopies should start on the younger side due to the risk, and experience, of polyps beginning to turn cancerous prior to 10 without symptoms.
For patients with FAP, after colon removal, lower scopes (sigmoidoscopy, pouchoscopy, or ileoscopy) continue to be recommended. In the case of an IRA, a scope every 6-12 months depending on polyp burden is recommended. In case of a Jpouch or Straight Pull Through, an annual scope depending on polyp burden. If polyps are large and flat with villous (finger-like projections called villi) appearance and/or highgrade dysplasia is identified, then scopes should be performed every 6 months.
In the case of sub-colectomy, proctocolectomy is recommended if dense polyposis or high-grade dysplasia is unable to be managed by scopes alone. In the case of sub-colectomy, proctocolectomy is recommended if dense polyposis or high-grade dysplasia is unable to be managed by scopes alone.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
Duodenal / Periampullary Cancer Surveillance
EGD, or upper scope, is recommended to start by 20-25 years of age and may need to occur earlier in light of family history.
You may see in your pathology results reference to a Spigelman score or stage. Spigelman is a system used to classify the severity of duodenal polyps. This system can also be useful in determining surveillance recommendations. Spigelman score ranges from 0-12 with 12 being the most severe. Scores are determined by the number of polyps, polyp size, type of polyp, and dysplasia. The Spigelman stages correspond to the scores.
- =Stage 0 (score 0): EGD every 3-5 years
- =Stage I (score 1-4): EGD every 2-3 years
- =Stage II (score 5-6): EGD every 1-2 years
- =Stage III/IV (score 7-12): EGD every 6-12 months
- =Stage V: EGD every 3-6 months by an expert; consider potential duodenectomy
Even when staging is downgraded, close surveillance continues to be required, and intervals should be based on the prior Spigelman stage, family history, and careful clinical judgement. Even after duodenectomy, annual surveillance is recommended to continue. Capsule endoscopy or CT/MRI imaging may also be completed prior to duodenectomy to identify any large lesions that might require modifying the surgical approach.
If gastric findings indicate more frequent surveillance than duodenal findings, then the more frequent surveillance indicated should be applied to both.
Additional surveillance guidelines include:
- EUS procedure to be performed for large ampullary lesions or large duodenal polyps with possible cancerous features before EGD removal or surgical resection.
- ERCP procedure at the time of removing ampulla of Vater polyps by EGD. This allows for identifying if polyps have also developed in the biliary or pancreatic ducts.
To reduce the risk of post-procedural pancreatitis, a pancreatic duct stent placement and indomethacin suppository is recommended.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
Gastric Cancer Surveillance
Endoscopy intervals of the stomach vary based on type of polyps and dysplasia. However, if duodenal findings indicate more frequent surveillance than gastric findings, then the more frequent surveillance indicated should be applied to both.
Fundic Gland Polyps
Less than 1 cm with none to low dysplasia, 3-year interval is recommended.
Larger than 1 cm with none to low dysplasia, yearly is recommended unless if all large polyps are unable to be removed, then every 6 months is the guideline.
Any size with high grade dysplasia then every 3-6 months is recommended with suggestion for an expert center or surgical evaluation to occur.
Gastric or Pyloric Gland Adenomas
Less than 1 cm, yearly is recommended.
Larger than 1 cm, annually unless if all large polyps are unable to be removed, then every 6 months is the guideline
Any size with high grade dysplasia, every 3-6 months is recommended with suggestion for an expert center for endoscopic management or surgical evaluation to occur.
Proximal polypoid mounds
Any proximal polypoid mounds that may appear as fundic gland, gastric adenoma, or pyloric gland adenomas
With none to low grade dysplasia, every 3-6 months is recommended.
With high grade dysplasia, referral to an expert center for endoscopic management and surgical evaluation is recommended.
Gastrectomy (stomach removal) is indicated when there are multiple zones of high-grade dysplasia or intramucosal or invasive cancer. In the case of a partial gastrectomy, surveillance for the remaining stomach should follow the above-mentioned guidelines.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
Small Intestine Cancer Surveillance
Capsule endoscopy or CT/MRI imaging is recommended to fully monitor the small intestine, especially when advanced duodenal polyposis is present.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
Thyroid Cancer Surveillance
A thyroid ultrasound to provide a baseline is recommended to be performed by late teenage years. If this ultrasound is normal, then it is recommended to be repeated every 2-5 years. In the case of abnormal results with high-risk features, it’s recommended to be referred to an endocrinologist for further evaluation and follow up.
Life’s a Polyp Foundation maintains the stance for thyroid surveillance to be completed by an endocrinologist from the beginning as the thyroid is their specialty.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
Desmoid Tumor Surveillance
When a desmoid is suspected or confirmed, initial imaging every 3 months is recommended with more frequent imaging indicated in symptomatic patients. Imaging frequency recommendations depend on the location of the desmoid, risk of progression, and symptoms of disease progression. Imaging for desmoid may include MRI, CT, or ultrasound.
For desmoids that are symptomatic, impairing or threatening function, patients are recommended to be offered therapy with the decision based on the location of the desmoid and the potential disease risks of the therapy.
Therapeutic options may include radiation, ablation/embolization, or systemic therapy medications in an effort to shrink the desmoid to reduce symptoms and impairment. Surgery is the less preferred treatment option unless required or agreed upon by a multidisciplinary tumor board with the patient.
Follow up surveillance from treatments include recommended imaging every 3-6 months for 3 years, then every 6-12 months thereafter.
National Comprehensive Cancer Network® (NCCN®) does recommend for a biopsy to be completed to confirm if there is cancer. However, FAP patients in the community report concerns regarding biopsying a desmoid due to risk of desmoid creation and/or growth and also caution against surgical removal of a desmoid unless it is life preserving.
Additionally, FAP patients recommend for desmoid management to be under the care of a Sarcoma Oncologist with Desmoid Expertise. A Medical Sarcoma Oncologist with Desmoid Expertise will be able to review additional treatment options for Desmoid management whereas a Surgical Sarcoma Specialist’s focus is on surgery.
These are concerns that require discussion with your medical providers for shared decision making in treatment options.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Soft Tissue Sarcoma V.1.2026
Hepatoblastoma Surveillance
Physical exam with liver palpation, abdominal ultrasound, and AFP (alpha-fetoprotein) blood test every 3-6 months during the first 5 years of life.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
CNS Cancer
Patients require education about signs and symptoms of neurologic cancer to notify providers upon any suggestive symptoms.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
Surveillance in AFAP
The only difference in surveillance recommendations between FAP and AFAP is in regard to the colon and rectum. The remainder surveillance recommendations apply to both FAP and AFAP.
In patients with AFAP, high-quality colonoscopies should start in the late teens and repeat every 1-2 years.
If the polyp burden is small and can be managed well with endoscopy, then this interval is recommended to continue with surgical evaluation if appropriate.
If the polyp burden is unable to be managed well by endoscopy, then a colon removal with IRA is recommended. However, if there is dense rectal polyposis that’s unable to be managed by polyp endoscopy, then colon and rectum removal with a Jpouch is recommended.
Polyp burden is considered to become high when there are more than 20 polyps at any individual examination, when polyps were previously removed, when some polyps reach greater than 1 cm in size, or when advanced histology occurs in any polyp.
With an IRA, the rectum is recommended to undergo endoscopy every 6-12 months depending on polyp burden.
NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, V.1.2025
Surveillance in Mosaic FAP
As previously discussed throughout the education sections about the potential difficulties of diagnosing Mosaic FAP, the authors of Prevalence and Consequences of APC Mosaicism in Patients with Colorectal Adenomas also drafted suggestions for surveillance of Mosaic FAP.
Based off their findings, the group suggested that surveillance guidelines be at minimum equivalent to those for AFAP patients and per findings of the tests such as colonoscopy and EGD for future frequency to be determined.
Surgery
Colectomy and Proctocolectomy
When deemed necessary, the colon is removed. The age that colon removal occurs varies across patients based on polyp burden.
It varies across patients and doctors if the rectum is removed or not. While keeping the rectum or rectal remnants intact can be a beneficial quality of life tool by maintaining or improving one’s ability to control bowel movements and even reduce diarrhea or loose stools, the rectum remains a high polyp target area in FAP. While no organ is immune to developing adenomas with FAP and thereby requires proper surveillance, the rectum is of high importance for continued surveillance.
When the colon is removed but the rectum remains intact, this surgery is a colectomy. Whereas if the rectum is removed along with the colon, it is a proctocolectomy. Some patients also elect to have a sub-colectomy, meaning a portion of the colon is removed instead of the full colon. Similarly to how close surveillance remains important when the rectum remains intact, the same is for when part of the colon remains.
In most cases, when the colon is removed a reconnection is planned – meaning to join the small intestine back to the end of the GI tract whether that is means of a Jpouch, IRA, or Straight Pull Through. Sometimes this is done in a two-step surgery but is increasingly being done in a one-step surgery.
When a reconnection is not planned, that means a permanent ostomy is most likely planned. Ostomy is the umbrella term for any type of ostomy and there are many types of ostomies for different parts of the body. In an ostomy, a surgical opening is created to allow for air or waste to pass through internally to the outside of the body.
Ostomies for FAP
Most notably for FAP is the colostomy and ileostomy. A colostomy is an ostomy created with the colon and an ileostomy is an ostomy created with the small intestine, generally the ileum. Most FAP patients have an ileostomy if they have an ostomy.
In a two-step surgery, the surgeon removes the colon and fits the patient with a temporary ileostomy simultaneously while preparing the reconnection site. This allows the body to heal over a course of 3 months, typically. At the end of 3 months, a second surgery is performed to take down the ileostomy, or reverse it, into the reconnection.
When looking at an ileostomy, whether permanent or temporary, it is important to ask to be seen by an ostomy nurse in conjunction with your colorectal surgeon to help determine stoma placement that works best for you and your body. This can help to make stoma placement more comfortable with your clothes and also your body’s needs – internally and externally. When this is done, an x is marked on your abdomen where you and your team have decided for your stoma to be placed during surgery.
In a one-step surgery, the colon is removed, reconnection site prepared, and the small intestine is immediately joined to the reconnection site. In the case of a permanent ileostomy, this can be done in a one-step surgery as well where the colon and rectum are removed, stoma placed, and typically the anus is sewn closed in a proctocolectomy (often referred to as a “Barbie” or “Ken” butt).
While the anus closure is not required for a permanent ileostomy, it is usually completed to prevent the buildup and expression of mucus from the anus.
Mucus drainage from the rectum or anus following colon removal is normal. All organs have a mucus membrane that secretes mucous, we just don’t typically see the mucus in our stool prior to colon removal. Particularly following surgery, small amounts of blood or even stool may be mixed in with the mucus.
When the rectum is removed in a separate surgery from the colon removal, it is termed a proctectomy.
In cases of a sub-colectomy, a colostomy could be created and may follow the same two-step surgery or one-step surgery protocols.
In addition to the one-step surgery, hospitalizations and diet reintroductions have also changed over the years following colon removal. In the 1990’s, it was common following a GI surgery to remain inpatient for approximately 7 days with a nasogastric tube (NG tube) inserted until nausea subsided and the patient had a bowel movement. When this occurred following surgery, the NG tube suction was turned off, and oral fluids were introduced. If oral fluids were well-tolerated over 1-2 days, then the NG tube was removed, and food was slowly introduced. This allowed for a gradual reintroduction to things as the body began to adjust to colon removal. Now, more patients are reporting instances of when they are released home same day as the surgery, some report not having a NG tube at all during their hospitalization, and oral fluids and foods are introduced sometimes on the same day as surgery.
Open or Laparoscopic Abdominal Surgeries
Abdominal surgeries may be open or laparoscopic. Open abdominal surgeries create an incision down the center of the abdomen, ranging typically from 6-12 inches long. Sometimes the incision is left open following surgery as well and is “packed” with gauze. Packing such an incision can reduce the risk of infection, particularly “trapped” infections inside the body when an incision is closed. Incision closure typically involves staples or sutures that are removed usually prior to hospital release.
An open surgery takes approximately 4-6 weeks to fully heal from. An open surgery may be required in emergency situations or depending on adhesions severity from previous surgeries. Typically, if one has undergone one open abdominal surgery, future abdominal surgeries will be open as well. Depending on the type of surgery required, the patient’s body, and surgeon skill, future surgeries may be able to be completed laparoscopically.
More common nowadays is the laparoscopic abdominal surgery and is the preferred surgery method. Laparoscopic surgeries are minimally invasive with multiple, small incisions made to allow a camera and specialized tools, possibly including robotic tools, to be used. This means a faster recovery time (approximately 2-4 weeks) with less pain and decreased hospitalization days. Incisions are typically less than 1/2 inch long and usually up to 5 incisions are made. Some surgeons are able to make one incision through the belly button. These incisions are so small that they often can be closed with a glue instead of staples or sutures. In such cases, the glue naturally removes itself overtime.
Gastrectomy
Full or partial Gastrectomy (stomach removal) is indicated when there are multiple zones of high-grade dysplasia or intramucosal or invasive cancer per NCCN Guidelines®
The Whipple Procedure
The Whipple, pancreaticoduodenectomy, may be indicated based on polyp development. In this surgery, the pancreatic head, duodenum, gallbladder, and part of the bile duct are removed. In some cases, a PPrD (Pancreas-preserving duodenectomy), that spares the removal of the pancreas can be performed instead.
Surgery for Desmoids is the least preferred treatment per NCCN Guidelines. Some FAP patients have undergone multi-organ transplants due to FAP and/or Desmoids.
Sources: https://pmc.ncbi.nlm.nih.gov/articles/PMC11007598/ | https://pmc.ncbi.nlm.nih.gov/articles/PMC4248206/ | NCCN Clinical Practice Guidelines in Oncology | NCCN Guidelines®, Soft Tissue Sarcoma, 2026 | NCCN Guidelines®, Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric, 2025. |
Ostomies for FAP: https://www.ncbi.nlm.nih.gov/books/NBK519003/ | https://cdn.ymaws.com/member.wocn.org/resource/resmgr/document_library/WOCN_Stoma_Marking_Procedure.pdf | https://pmc.ncbi.nlm.nih.gov/articles/PMC1422138/ | https://medlineplus.gov/ency/patientinstructions/000153.htm
Open or Laproscopic Surgery: https://pmc.ncbi.nlm.nih.gov/articles/PMC10951803/
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Life Without a Colon
Physical and Pelvic Floor Therapy
Discussing pelvic floor therapy and physical therapy with your surgeon or other medical provider can significantly improve quality of life.
The abdominal muscles support the back and help prevent from hernia as well. During any abdominal surgery, these muscles are cut, weakening the abdominal core and its support. Therapy alone can aid in preventing chronic pain and reduce risk of hernia. There are also many benefits to physical therapy after abdominal surgery that can include managing scar tissue, aiding with fertility, reducing organ mobility as well as other benefits.
Pelvic floor therapy is available for both men and women and can help manage pelvic, back, and rectal/anal pain among other benefits.
Stool Changes
Without a colon, stool is generally much looser, often liquid and more frequent bowel movements occur. Without a rectum, continence control can be more difficult. With a reconnection, over time daily stools average 4-7. In the case of an ileostomy, stool is uncontrolled in output frequency but due to the stool collecting in an ostomy bag, depending on volume, emptying can be less frequent than the restroom trips required by those with a reconnection.
There are over the counter and prescription strength anti-diarrhea medications, fiber supplements, and diet changes that can help with reducing bowel movements and thicken stool.
Due to decreased absorption without a colon, nutrient deficiencies and dehydration are common among patients. This requires regular lab monitoring. Not only should labs include CBC (Complete Blood Count) and CMP (Comprehensive Metabolic Panel) tests but also Vitamin D, Vitamin B12, Folate, and Iron Panel. A full iron panel is important to have drawn rather than only a CBC test so that the full picture of anemia can be assessed. Deficiencies can change over time as well – new ones developing or existing ones improving or worsening. There are over the counter supplements, prescription strength medications, and even infusions available to treat nutrient deficiencies caused by colon removal. There is a wide array of hydration products on the market to help reduce dehydration and aid with nutrient deficiencies. Looking at the ingredients is important to help find the right product for you. Be mindful of sugar and artificial sweeteners, as both can cause and increase diarrhea – especially artificial sweetener. Sipping rather than gulping can also decrease diarrhea from drinking large amounts of fluids.
Your medical provider can help direct you on the proper implementation of supplements for dehydration, nutrients, and fiber as well as appropriate anti-diarrhea medications. Beginning fiber supplement can be a trial-and-error experience to learn the proper amount of fiber for one’s body as fiber can thicken stool and loosen stool based on amounts and types of fiber, particularly as the body adjusts to the sudden increase of fiber. When taking fiber supplements, it is important to drink enough water to prevent from developing bezoars. These are essentially fiber balls that develop by too high fiber intake and consist of indigestible materials that become compacted and are difficult or unable to be passed through the GI tract.
Over time, the small intestine adapts more to take over the functions of the colon. This ability varies from person to person.
Short Bowel Syndrome
Some patients may develop Short Bowel Syndrome (SBS). This is a rare, malabsorption disorder that occurs when the intestine is no longer functioning properly to absorb nutrients and water as well as is needed. This can occur from surgery or injury. Some providers diagnose SBS based only off of remaining intestinal length, however, this is not accurate as SBS is about the functionality of the intestine. Although SBS is most commonly associated with the small intestine, SBS can occur with or without a colon – meaning, it can occur even if someone still has their colon or part of their colon. SBS is not guaranteed to occur following colon removal but is a relevant complication that does occur for some FAP patients. It is common with SBS to also experience diarrhea, dehydration, and nutrient deficiencies. The severity of SBS varies among patients but can be severe requiring artificial nutrition/hydration to help maintain nutrition and manage symptoms.
For additional support, visit https://www.shortbowelsyndrome.com/
Common GI Symptoms After Surgery
Stomach Noises
Additional common experiences after any GI surgery, including colon removal is stomach gurgling and increased gas. The GI system has been rerouted and is working differently then before. It’s common to hear the digestion process of food, liquid, and gas moving through the GI tract. This can be loud and frequent at times, as time progresses though you may find these noises to be less voluminous and less frequent
There are various products, prescription medications, and diet changes that can help with reducing gas and bloating. Many patients report taking over the counter medications such as Simethicone (Gas-X, Phazyme, etc), Beano, Fiber, etc to help manage their bloating.
Your medical provider can help you find the right protocol for your needs.
Nausea and Reflux
Nausea and Reflux are both often-reported experiences by FAP patients after colon removal, even before for some. This can be in large part due to digestive changes from GI surgery that impact the digestion process and speed as well as gas build up/bloating, stomach irritation or inflammation. The presence of stomach polyps can also cause or worsen nausea and large enough polyps could cause indigestion.
Diet changes and nausea medications, over the counter and prescription strength, can be of help that your medical provider can provide guidance regarding.
Intestinal Blockages, Volvulus, and Ileus
The gold standard of treatment for a volvulus is surgery to prevent necrotic (dying or dead) intestine as this can be life threatening.
Due to adhesions (scar tissue) that start to form quickly after a surgery and that worsen over time, as well as a rerouted digestive system following GI surgeries, there are increased risks that patients need to be aware of for their own well-being and healthcare.
Increased risk of intestinal issues include:
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- adhesions
- intestinal blockages (obstructions)
- volvulus (twisted intestine)
- ileus (when the intestine stops moving food and waste through but not due to an intestinal blockage) are a risk and are important for patients to be aware of for their own well-being and healthcare.
An intestinal blockage (bowel obstruction) can be from food, hernia, a mass or other physical blockage. We will be discussing intestinal blockages from food. This occurs when the intestine is unable to digest a food. These can occur regardless of abdominal surgery – ostomy, reconnection, or even ostomy reversal. This can cause a partial or full blockage of the intestine.
Common symptoms with an intestinal blockage include:
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- Abdominal distention and pain, abdomen becomes tender to the touch
- Little to no bowel movements or gas being passed
- Feeling overly full
- Nausea, even vomiting
Everyone is different with an intestinal blockage in regard to what foods are a problem and their severity. As the body changes over times, risky foods may change over time as well. Identifying food triggers can be a trial-and-error method. The UOAA has helpful guides available regarding commonly risky foods for those who’ve undergone GI surgeries, visit www.ostomy.org
Preventing Blockages
General guidelines to help prevent intestinal blockages from food include:
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- Eat small amounts, especially if you’re not sure how a food will affect you
- Chew extremely well. A lot of chewing
- Drink a lot of fluids when eating, especially if they’re more high-risk foods for you
- Eat slowly to allow for better digestion
At-Home Care for Blockages
If you have symptoms of a blockage, frequent at home care tips to help the digestive system start to move reported by community members include:
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- Walking a lot
- Drink fluids – hot tea, water, some even recommend a regular Coca Cola soda
- Hot showers/baths and heating pad on the abdomen to provide comfort
- Abdominal massage
- Lying on your left side
- Rocking back and forth while on your hands and knees
- Avoiding anti-diarrhea medications and pain medications as both slow the gut down
If you’re experiencing or believe you may be experiencing an intestinal blockage, let your medical provider know so they can provide medical advice and instruction. If you start to vomit with an intestinal blockage, it’s a good indicator that you need to go to the emergency room if your provider hasn’t instructed you to do so yet. Intestinal blockages are not to be taken lightly as they can be dangerous resulting in a ruptured intestine if not cleared in time.
Sometimes intestinal blockages require hospitalizations that may include a NG tube to be placed through the nose into the stomach. This removes liquid and food that’s backed up from the blockage and helps relieve the pressure, which can ease symptoms and help allow the digestive system to pass the food blockage. If hospital care team wants to insert an NG tube, community members suggest to request a pediatric NG tube to increase your comfort.
If an intestinal blockage is not able to be cleared, surgical intervention may be required. Due to the effects of an intestinal blockage, dehydration, electrolyte imbalances, and pain are common during a blockage and the recovery afterwards. It is a lot that the body is going through during a blockage in attempt to clear the blockage. Dehydration and electrolyte imbalances can become severe and may require medical intervention such as IV fluids to help correct. Narcotic pain medications can cause constipation and, in our experience, are not generally recommended by providers as the constipation can worsen an intestinal blockage.
Volvulus
While a volvulus (twisted intestine) is an uncommon occurrence, they can happen. In the case of small intestine volvulus, it is critical to obtain medical diagnosis and treatment due to the risk of the intestine dying from lack of blood supply. There are two types of volvulus – primary and secondary. Primary has been reported to be more prevalent in the rest of the world outside of North America and Western Europe whereas Secondary is more common in North America and Western Europe than the rest of the world. Primary volvulus occurs in a “normal” abdominal cavity that may be impacted by diet practices, especially involving eating large amounts following fasting and having an empty bowel, as well as possible difference in the mesentery. Secondary volvulus occurs due to an acquired injury or damage – such as from adhesions and weight loss surgeries.
In the case of a volvulus, a regular x-ray is not effective in diagnosing a volvulus. Imaging tests such as small bowel follow through (barium x-ray) have been found to be more effective and CTs or MRIs may also provide additional information for diagnosis.
Possible non-surgical treatment options may include, when safe and appropriate, bowel rest through NG tube insertion and artificial hydration/nutrition as well as techniques such as an enema or endoscopic decompression (usually in the case of a colon volvulus) may help in resolving a volvulus.
The gold standard of treatment for a volvulus is surgery to prevent necrotic (dying or dead) intestine as this can be life threatening.
Ileus
An ileus, sometimes called a paralytic or functional ileus, occurs when the intestine stops moving food and waste through. This is not due to an intestinal blockage but rather the intestine not functioning correctly. This is most common following an abdominal surgery but can also occur due to severe illness such as septic shock or after being on a ventilator. Regular X-ray followed by CT scan with and without contrast are recommended for diagnosis testing. Much of the same hospitalized treatment planning is similar to when an intestinal blockage from food is occurring – bowel rest by means of artificial hydration/nutrition and NG tube insertion. In the case of occurring after a surgery, an ileus typically occurs following the 3-5 day afterwards and lasts 2-3 days. The small intestine typically the quickest to resume function of the organs followed by the stomach and colon (if the patient still has their colon).
Sources for blockages, volvulus, and ileus: https://www.ncbi.nlm.nih.gov/sites/books/NBK441836/ | https://www.ncbi.nlm.nih.gov/books/NBK470544 | https://www.ncbi.nlm.nih.gov/books/NBK558937 | https://www.ncbi.nlm.nih.gov/books/NBK470544 | https://www.sciencedirect.com/science/article/pii/S2210261219301154 | https://www.ncbi.nlm.nih.gov/books/NBK470544/ | https://pmc.ncbi.nlm.nih.gov/articles/PMC1242584 | https://www.ncbi.nlm.nih.gov/sites/books/NBK441836/ | https://www.ncbi.nlm.nih.gov/books/NBK558937/
Education Resources
Empower Yourself – Learn from These Expert Resources
FAP & Me – A Guide to Familial Adenomatous Polyposis
A note to Parents
Welcome to “FAP & Me!” This booklet was written to reinforce the information about FAP that you, your doctors, and your genetic counselor have given your child. FAP & Me is useful in various ways, depending on the age of the child. Each child and family is different, and FAP & Me may have information that you have not shared with your child yet.
Please review FAP & Me to see whether the information is right for your child at this time. Your child may like reading FAP & Me with you, an older sibling, or another adult so that he or she can ask questions and have you explain things. We hope that FAP & Me is helpful!
– FAP & Me, a publication of the National Society of Genetic Counselors
A Patient’s Guide to FAP
The content in this guide is based on the National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology “Genetic/Familial High-Risk Assessment: Colorectal” (2015).
This guide is intended to provide information for those affected by hereditary colon cancer syndromes and should not replace discussions or advice from your medical provider. We suggest you read this Guide in the order in which it is written, as each section builds upon information in previous sections. Medical terms in blue are explained in the glossary.
– paraphrased from ‘A Patient’s Guide to FAP’
Life’s a Polyp with Zeke and Katie
Yay, Yay DNA! Do You Wonder What Makes You You?
It’s all because of something called DNA.
What is DNA? It’s the instruction book for life. You have DNA. So do teeny little bugs, big elephants, tall trees, and colorful birds-every living thing has DNA! And you share DNA with just about every living thing on Earth. Join Mendel G. Cat and learn more about the tiny thin thread that connects all life.
– Mark A. Hicks
Shimmy the Shark and His Stoma