Frequently Asked Questions

While everyone is different, common experiences reported by patients include:

Nutrient deficiencies and dehydration that require additional treatments.
This is why having labs done on a regular basis is essential. 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 sweeteners. Sipping rather than gulping can also decrease diarrhea from drinking large amounts of fluids.

Stomach Noises – gurgling
Due to the GI tract being rerouted following colon removal and any other surgeries where organs are removed or resected, digestion works differently. A common, audible indicator of this is gurgling noises as the body moves food and liquid through the GI tract. This can be embarrassing for some as these noises can be quite loud at times. Over time as the body begins to adapt to its changes, these noises may decrease in intensity.

Bloating, Increased Gas
Due to the GI tract being changed following GI surgeries of any kind, increased gas and bloating are common occurrences. This can also add to stomach noises that are frequently experienced by patients as well. 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.

Diarrhea
The colon absorbs water and while the small intestine adapts to take over the functions of the colon to the best of its ability, diarrhea is a common lifelong effect from colon removal. A person’s stool consistency after colon removal tends to be liquid or mushy. Diet and fiber supplements can help thicken stool and there are over the counter and prescription strength anti- diarrhea medications that can be helpful as well. Your medical provider can help direct you on the proper implementation of fiber supplements and 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 like fiber balls when caused 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.

Mucus Drainage
When an individual has their colon removed and has an ileostomy, if their anus has not been surgically closed – it is common to experience mucus discharge or drainage. This is normal, organs produce mucus and occurred before colon removal – it just wasn’t likely noticeable due to mucus being mixed in with stool. The build of mucus can feel uncomfortable at times as pressure builds. Some individuals are able to express the mucus like a typical bowel movement to help relieve these sensations. Some individuals report small amounts of blood being mixed in with the mucus or even stool mixed in, especially during times close to their colon removal surgery.

It’s always important to notify your medical provider of symptom changes and anytime you have a concern or question about what you’re experiencing.

Absolutely! Obtaining a second opinion is part of informed consent, it is important for you to feel comfortable with the information you’re being provided and the decisions that you are making. You can request a second opinion by asking your primary care doctor or specialist to refer you to another provider or you may be able to directly by calling a provider’s office directly and requesting a second opinion. Some medical providers and insurance plans require a referral to a specialist.

Physical therapy after any abdominal surgery is an important part of recovery. This is often not brought up by surgeons and doctors, however, including PT in your recovery plan helps to reduce hernia risk and prevent chronic back issues in the future.

The back is supported by the abdominal core muscles. When these are weak, the back isn’t supported properly and back issues including chronic pain can occur.

We like physical therapy over at home directed exercises because a physical therapist is able to provide individual direction and education based off what a person is needing. Recovery exercises during pain flares can be taught to help maintain progress and ease the flare faster. Exercises can be adjusted based off the body’s responses and specific areas needing to be strengthened can be identified and worked on.

Another therapy that is often not brought up by providers but reported to be helpful by patients, is pelvic floor therapy.

You can ask your medical provider for a referral for both types of therapy.

Your surgeon will be able to best answer this and provide activity release.

Most patients report with an open surgery, full recovery takes 4-6 weeks while laparoscopic surgery is much less with approximately 2-4 weeks.

The most globally recognized guidelines for surveillance are theNCCN Guidelines® for Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric V.1.2025.

These guidelines are updated yearly.

In general, it’s recommended to have yearly upper and lower scopes (even after colon removal), yearly thyroid ultrasound, regular labs, and periodic additional imaging such as a CT scan and camera capsule study.

FAP polyps, adenomas, can continue to develop anywhere in the GI tract. Therefore, a lower scope to check the stoma of an ileostomy or the jpouch, IRA, or remaining portion of the rectum or small intestine in the absence of a jpouch or IRA remains vital.

These lower scopes are often referred to as an ileoscopy for an ileostomy, pouchoscopy for a jpouch, and in general a sigmoidoscopy for any other reconnection.

For a full view of the small intestine, a capsule endoscopy can be completed. While this procedure is unable to take any biopsies, it is a helpful tool in surveillance and diagnosis.

FAP polyps, adenomas, can develop anywhere in the GI tract and there are known associated upper GI cancers with FAP that continue to require surveillance.

Due to adhesions (scar tissue) that starts to form quickly after a surgery and that worsen over time, as well as a rerouted digestive system following GI surgeries, intestinal blockages are a risk. An intestinal blockage from food is 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:

• • Abdominal distention and pain, abdomen becomes tender to the touch
  • Little to no bowel movements
  • 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.
General guidelines to help prevent intestinal blockages from food include:

• • 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

If you have symptoms of a blockage, common at home care recommendations from community members include:

• • Walking a lot helps the digestive system to move
  • 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 helps the digestive system to move
  • Lying on your left side
  • Rocking back and forth while on your hands and knees helps the digestive system to move

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 nasogastric 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 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.

Short Bowel Syndrome(SBS) 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 relevant complication that does occur for some FAP patients.

It is common with SBS to also experience diarrhea, dehydration, 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 Short Bowel Syndrome.

Deciding to have a child with the known risk of FAP is a personal decision and it is a hard decision many FAP patients report dealing with. There is no right or wrong answer.

There are FAP patients who have successfully carried to term and given birth after colon removal – with an ileostomy and with a reconnection. The risks of pregnancy and childbirth should be discussed with medical providers including Gastroenterologist and Gynecologist/Obstetrician.

PGD (Preimplantation Genetic Diagnosis) with IVF (In Vitro Fertilization) is an option available for some to help prevent the risk of a child inheriting FAP from an affected parent. In this procedure, embryos are tested for genetic disease so that embryos without FAP are used and affected embryos can be discarded. The identified embryos for implantation are then implanted using IVF. While this procedure does yield a high probability of having a child not inherit FAP, it is not 100% (as nearly nothing can be 100% risk free) and it can be costly.

Jenny’s parents always told her – “We made the best decision we could at the time with the information we had at the time”. What they were telling her is, no one knows the future, and we can only make decisions based off what we currently know – not off what ifs only. To be gentle with yourself and the decisions you make in life. There will always be things we would like to go back in time and do differently, but we don’t have the option, and we didn’t have the same information we do in the future for when we made that decision. Give yourself grace and love, regardless of what you decide.

You can read more about Jenny’s experiences with rare disease and chronic illness as well as read reviews, guest articles, and educational articles here.

You can also watch on Youtube Jenny’s videos educating about chronic illness and A Daughter’s Love Podcast episodes with Jenny and her cousin, Amy

On A Daughter’s Love Podcast, Jenny (Life’s a Polyp Foundation) and Amy share the life and cancer stories of their mothers as well as their own experiences, memories, and grief of losing their mothers less than a month apart. Jenny and Amy are cousins with a special connection cemented in their daughterly love.

A Daughter’s Love Podcast works to raise awareness about FAP, Breast Cancer, Alzheimer’s, chronic illness, and the grief and love shared by caregivers.

Anything they feel up to doing!

We know ostomates who work intensive jobs such as on SWAT teams, engage in activities such as sky diving and martial arts, and more.

We know patients with reconnections who work full time jobs and engage in various activities such as hiking trails, sky diving, and more.

It’s really up to the individual what they engage in as far as what they’re able to tolerate and feel comfortable doing.

Use the contact form here on the Contact page or email Je***@*********yp.org