Living Life with an Ostomy
By: Barbara Storch
First Things First: What is an Ostomy?
An ostomy is a surgical procedure that re-routes how stool exits your body. Ostomies work by creating an opening in the body (called a stoma) that allows for bodily waste to exit and be collected in an external pouch or bag. There are two common types of ostomy surgeries for people with IBD:
Ileostomy: forms a stoma that directs waste from the small intestine
Colostomy: forms a stoma that directs waste from the colon.
For both of these surgeries, partial or complete removal of the colon may be included. Up to one million people in the US have an ostomy – it is more common than you may think!
Before going into surgery, it can be helpful to learn about ostomies and what life could look like afterward. The following guide is intended to be a resource for you as you embark on this new stage of your IBD journey.
Adjusting to Life with an Ostomy
It is essential to have discussions with your medical and surgical team about what the recovery process will look like. There are two phases to discuss – recovery immediately post-surgery and adjusting back to your usual day-to-day routine after the immediate recovery.
Immediately post-surgery, you may have a very high output. As such, staying hydrated (although essential always) is particularly important during this time. Ask your team what post-surgical warning signs to watch out for and have a plan for who you should call if you need assistance. You also may want to discuss meeting with an ostomy nurse to learn how to manage your new ostomy.
After the initial recovery, other considerations may emerge as you re-engage with your typical day-to-day activities.
Can I Live a Normal Life with an Ostomy?
This is a question that may come up for you as you re-engage with your day-to-day life. Overall, the answer is yes! You will ultimately be able to go back to all of the things that are important to you, and that you prioritize. However, there are areas where having an ostomy may spark some concerns, questions, or considerations.
Research has shown that body image concerns post-surgery can be common, particularly for those who identify as female. So, if you are experiencing strong feelings about your body, please know you are not alone. It will take time to adjust to the changes in your body. Try to be gentle and compassionate to yourself during this adjustment period.
Know that it is also OK to have mixed feelings about your ostomy. Try to make space for acknowledging the positives that result from your procedure, as well as experiencing and feeling other emotions such as fear, grief, and sadness. Both can exist together!
When it comes to intimacy talking with your partner is key. Communicating your needs and vocalizing any concerns can help to strengthen your relationship. You and your partner may have to make some modifications to adjust for the presence of a pouch. Securing your device with an ostomy wrap may be something to consider.
For more resources on intimacy and IBD, check out the Crohn’s and Colitis Foundation’s fact sheet on IBD and intimacy or Crohn’s and Colitis UK’s sex and relationships page.
When getting back into physical activity, remember to consult with your surgeon or GI provider and start slow. There are also a few specific things to consider.
Your ostomy pouch is water-resistant – you can go swimming and bathe without concern.
You may want to consider clothing that will support your pouch or keep it in place, particularly for activities that may cause excessive sweating. You may also wish to speak with an ostomy nurse to determine what type of appliances may be best for more rigorous activities.
If you play contact sports, you may need to take special considerations or precautions, such as a stoma guard.
If you do decide to leave your pouch off when bathing or showering, remember to make sure your skin is fully dry before putting on a new appliance so there will be a tight seal.
You can also travel with an ostomy! However, some advance planning is likely necessary.
If you are flying, remember to bring extra supplies in both your carry-on as well as your checked baggage in case there are any issues with lost or delayed bags.
Release the gas out of your pouch before take-off, as air pressure changes in flight may cause your bag to expand.
You can also consider pre-cutting skin barriers ahead of time.
Family and Family Planning
If you are considering becoming pregnant, make sure to discuss it with your GI provider. It is overall safe to get pregnant with an ostomy. However, every person with IBD is different and may have different considerations, so including your entire care team early on in the process is helpful. Your Resilience Team can be there for support every step of the way.
When pregnant, your stoma size may increase, which may necessitate different products or procedures. You also may have a hard time seeing your stoma as your stomach grows, so consider using a mirror or having a partner or trusted individual help you change your appliance.
If you want a vaginal delivery, a stoma is not a preclusion. Again, make sure to consult with your medical care team. They may recommend certain things (e.g., having a surgeon on call) for your delivery.
If you already have a family, you may be thinking about how best to tell your children about your ostomy procedure. There are a few things to consider:
The developmental and chronological age of your children is a big factor in what information you choose to share, as well as how to share it.
For children of all ages, it’s important to try and have this conversation when you are feeling ready and OK to have it. For example, if you are having a day where you are feeling particularly emotional, it’s fine to re-schedule the conversation.
You also may want to consider your emotional and knowledge-based readiness to answer questions that may come up. It may be useful to prepare answers to common questions in advance. Older children may have more complex questions.
Particularly for younger children, it can be supportive to address the ways that their life and daily routine may change. For example, perhaps someone else will help them get dressed and leave for school while you are recovering.
Relationships and Friendships
As always, what and when you share with loved ones is fully up to you. You may consider sharing if you feel you want emotional or logistical support.
Something that may help in these discussions is sharing information and resources with your loved ones so that they can have more of an understanding of your experience when supporting you.
It can also be particularly helpful to meet and talk with those who have a similar lived experience. There are many programs that connect people who have had ostomies to learn from, share with, and support one another.
Again, returning to work post-surgery may come with some particular considerations.
If you need accommodations (for example frequent breaks, bathroom access, a gradual return to work, or additional time off), consider speaking to the human resources department.
Consider bringing a change of clothes and extra supplies to work, in the event of a leak.
Remember, as is always the case, what and when you disclose about your ostomy is up to you!
Remember, healing isn’t always linear and may cycle over time. This is a completely normative and valid experience. If you do find that any emotional or adjustment concerns are interfering with your day-to-day life, don’t hesitate to reach out to members of your Resilience Team to discuss getting additional support!
Resilience for IBD is Resilience for Life!™