Welcome back to Emily’s Gut Check! Today we will be discussing ostomies. There are roughly 725,000 to 1 million people living with an ostomy or continent diversion in the United States. Approximately 100,000 ostomy surgeries are performed each year in the United States. Despite the sheer number of people that have ostomies, there still seems to be a lot of confusion encompassing them, even amongst the IBD community. What is an ostomy? Why would someone have to undergo ostomy surgery? How do you care for an ostomy? Are they permanent? Can you tell if someone has one? These are just a few of the questions I hope to answer in this post. Together, we will unpack what an ostomy is, briefly discuss care and management, and finish with addressing some ostomy-related myths and questions. This post is a little more medically heavy than my last post, so as always, I want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Now let’s dive into the discussion!
What is an Ostomy?
An ostomy is a surgical procedure in which a portion of the digestive or urinary system is rerouted through an opening in the abdomen called a stoma. The stoma allows for waste to pass out of the body.  The waste is then collected in an external ostomy pouch or appliance. There are three common types of ostomies. These are:
There are several reasons why an individual may need ostomy surgery. Some of these include:
Ostomies in Relation to IBD
In the case of IBD, ostomies are often used when medical treatments fail to control symptoms, or when there is a risk of life-threatening complications, such as bowel obstruction or perforation. The common types of ostomies needed for IBD patients are colostomies and ileostomies. These types of ostomies can be either temporary or permanent, depending on the severity of the disease. Sometimes, a temporary ostomy is sufficient to allow parts of the bowel to rest and heal. Temporary ostomies can provide relief and improve quality of life by:
Living with an Ostomy
Because there are several different types of ostomies and appliances, I will not be going into very specific details about how to care for an ostomy. Instead, I will give general guidelines that most providers would agree upon in relation to ostomy care. You should always follow the patient-specific guidelines given to you from your child’s doctor or wound care/ostomy nurse.
In general, you should give your child’s provider a call if your child’s stoma:
You should also give your child’s provider a call if:
There are some potential complications associated with having an ostomy for IBD, including: stoma problems, pouch problems, dehydration, nutritional deficiencies, psychological distress, and in rare cases, bowel obstruction. In general, it is always best to have open, honest communication with your child’s provider about any questions or concerns you or your child may have in relation to your child’s ostomy.
Living with an ostomy can be challenging, but there are many resources available for support and information, including United Ostomy Association of America (https://www.ostomy.org/) and Hollister Ostomy Care (https://www.hollister.com/en). IBD Connect is also here to support you! Please feel free to reach out to myself or someone else on the IBD Connect team.
Myths and Questions:
Myth: An individual with an ostomy must feel sick all the time.
I will respond to this myth in regards to ostomies in IBD patients in specific. A large majority of people with IBD who have had ostomy surgery actually state that having the ostomy surgery has given them their life back. As mentioned earlier, ostomy surgery can help to alleviate a lot of the symptoms of IBD because the diseased/inflamed portion of the bowel is no longer working so hard. This means that symptoms like abdominal pain, urgency, and diarrhea are typically reduced or resolved.
Question: Can you exercise with an ostomy?
Yes! In general, if there were no complications with the ostomy surgery, your child can begin exercising again pending your doctor or provider’s approval. Your child may need to have some accommodations, however. For example, if your child is interested in playing a contact sport, your child may need to wear a protective stoma cover. The risk of hernia is also greater so it is best to discuss activities like weight lifting with your provider.
Myth: Ostomies are permanent.
This myth has already been addressed in this post. To recap, every IBD case is unique. If ostomy surgery is advised, the type of surgery recommended is based on your child’s clinical presentation and the doctor’s best judgement. If your child’s doctor recommends surgery to help treat IBD, sometimes, a temporary ostomy is sufficient to allow the bowel to rest. The ostomy may be able to be reversed, usually at least 3 months after the procedure. In other cases, a doctor may recommend a permanent ostomy with no plans for ostomy reversal. Each IBD case should be approached individually.
Question: Will the ostomy smell?
Typically, an ostomy appliance is air-tight. This means that you shouldn’t notice any odor if the pouch is closed. Many ostomies appliances are built with air filters that neutralize potential odors as well. If you do notice an odor, there may be a leak. You may notice an odor when you change or empty the pouch because the system will be open. To prevent odor, you should ensure that the pouch system fits nicely and empty it regularly. If the pouch gets too full, the weight can cause a leak, which means that odor may escape. Sometimes certain foods can cause more odor. There are products that help combat odor if it does become a true concern or issue. These products are designed specifically for ostomies. You should never attempt to use an odor neutralizing product that isn’t made specifically for ostomies.
Question: Can I shower or bathe with an ostomy? What about going in a pool, lake, or ocean?
Yes and yes! For showering and bathing, you should make sure you talk with your child’s medical provider or wound care/ostomy nurse. Some patients prefer to shower or bathe with the appliance completely off. Some patients find that this increases stoma irritation. However, it is okay for the stoma to get wet. In general, if your child is showering or bathing without the pouch system, make sure the flange/skin barrier is removed as well. If your child is showering or bathing with their pouch system, ensure that the seal is secure and wear both the skin barrier/flange and the pouch system. Patients can also swim while wearing their pouch system! The system is designed to be water resistant. Just be sure to check the seal prior to swimming.
Myth: You can’t wear normal clothes with an ostomy.
Typically, you can wear the same clothing after an ostomy surgery as you wore before ostomy surgery. There are some products that help to keep the pouch in place if that is something your child desires. Furthermore, ostomies usually aren’t visible underneath clothing!
Question: Does your diet have to change with an ostomy?
Truthfully, your child’s diet should change. Once again, every IBD patient is different so it is important to have a discussion with your child’s medical team in regards to diet. These discussions should include a registered dietician who has experience with ostomy surgeries. In general, immediately following surgery and for a few weeks, it is best to eat foods that are easier to digest and foods that produce less gas. Some other helpful tips include:
Myth: You cannot get pregnant if you have an ostomy.
False! Many ostomates successfully become pregnant and deliver healthy children. When this time comes for your child, it will be important for her to communicate with her medical team about her intent to become pregnant. Generally speaking, however, ostomy patients typically do well in pregnancy if there are no other health concerns. There can be some skin changes with the stoma and other minor changes that occur during pregnancy.
I hope the information on this page was useful in providing a general overview about ostomies. I am excited to share that the discussion about ostomies today was actually planned in preparation for my next post, which happens to be a very special interview with two ostomates! We will look into how having ostomy surgery has impacted their lives, physically, mentally, and emotionally. I am looking forward to sharing this interview with you all next time on Emily’s Gut Check. I have a few reminders to wrap up this post. Once again, it is always best to listen to your child’s medical provider in regards to your child’s individual treatment plan. Please do not use this page as a substitute for a professional medical opinion. I also just wanted to remind everyone that that there are options for IBD support. The links for the IBD Connect main page and support group pages are listed below. If you have any questions for me or if you want to venture a topic for a future blog post, feel free to email me at my email address listed below. As always, stay strong IBD Warriors/IBD Warrior parents!
 Burgess-Stocks, Joanna et al., Ostomy and Continent Diversion Patient Bill of Rights, 2022
 Burgess-Stocks, et al.
 Ileostomy - Caring for Your Stoma
 Contributor. Swimming with an Ostomy.
Burgess-Stocks, Joanna, Jeanine Gleba, Kathleen Lawrence, and Susan Mueller. “Ostomy and Continent Diversion Patient Bill of Rights.” Journal of Wound, Ostomy & Continence Nursing 49, no. 3 (2022): 251–60. https://doi.org/10.1097/won.0000000000000876.
Contributor. “Swimming with an Ostomy.” United Ostomy Associations of America, July 17, 2020. https://www.ostomy.org/swimming-with-an-ostomy/#:~:text=You%20can%20swim%20or%20be,harm%20or%20enter%20your%20stoma.
“Ileostomy-Caring for Your Stoma: Medlineplus Medical Encyclopedia.” MedlinePlus. Accessed May 11, 2023. https://medlineplus.gov/ency/patientinstructions/000071.htm.
“Ostomy.” MedlinePlus. Accessed May 11, 2023. https://medlineplus.gov/ostomy.html.
Hi! My name is Emily Fournier, and I am a wife, mom, and registered nurse currently living in MA. I graduated with my Bachelor’s Degree in Nursing in May of 2020. Since graduation, I have had experience working as a registered nurse in both a hospital intensive care unit and a community health center. Throughout my nursing career, I have had several opportunities to care for IBD patients of all ages, which has allowed me to gain a thorough understanding of IBD from a medical perspective. Through my friendship with an individual diagnosed with Crohn's disease at a young age, I have also been able to see how IBD affects every aspect of an individual, whether it be physically, socially, mentally, or emotionally. With Emily’s Gut Check, I hope to combine my medical expertise with a more holistic approach to IBD care in order to provide support and encouragement to anyone affected by IBD, but especially to parents of a child diagnosed with IBD. Please do not hesitate to reach out to me at email@example.com if you have any questions, need advice, or have an idea for a blog topic to cover. Thank you all for being on this journey with me!