7 Tips for Living with an Ileostomy

Living with an ileostomy can be challenging for people. We'll teach you 7 things you should do to avoid complications.
7 Tips for Living with an Ileostomy
Diego Pereira

Reviewed and approved by el médico Diego Pereira.

Last update: 07 March, 2023

An ileostomy is a procedure in which the last part of the small intestine (known as the ileum ) is connected through the abdominal wall through a surgically created opening (known as a stoma). The purpose of this is to pass stool out of the body through the stoma instead of the usual route through the anus. Today, we’ll teach you the best tips for living with an ileostomy.

Among many other situations, the procedure is performed on patients with Crohn’s disease, ulcerative colitis, or colon cancer in certain circumstances. Living with an ileostomy is a lifestyle change, one that requires commitment in order to avoid complications associated with the procedure. Let’s see what you can and can’t do according to the experts.

7 recommendations for living with an ileostomy

As the researchers point out, living with an ileostomy is often emotionally challenging. The patient may develop anguish and frustration, as well as their family and friends. With the passing of time, everyone gets used to the stoma, although the first days can be incredibly challenging. For this reason, we want to leave you with 7 tips for living with an ileostomy.

1. Keep it as clean as possible

As the stoma can cause irritation to the skin around the opening, it’s very important to keep this area clean. You can use just water, although soap is allowed as long as you make sure to remove it completely during washing. During the process, you’ll be able to see small blood spots around the stoma; this is normal.

Experts recommend changing the bag during the first hours of the morning, a habit that you should assume as a routine. You should avoid using products during cleaning, as rather than sanitizing the area, they can cause complications.

For example, avoid using products that are alcohol-based or that contain oils. These can cause irritation, redness, and itching when rubbing against the stoma bag.

2. Control your diet

Living with an ileostomy involves making dietary changes.
It’s common for diet to change considerably after an ileostomy, all with the aim of better adapting to the change and to the baseline condition.

As experts warn, diet modification is part of living with an ileostomy. The options are very varied, and in general, they’re stricter during the first weeks after the intervention.

This is because, during this period, the patient may experience increased production of flatulence. For this reason, it’s best to avoid the following:

  • Alcohol and carbonated drinks
  • Eggs
  • Cabbage
  • Beans
  • Dairy
  • Onions
  • Broccoli

In addition to this, and as much as possible, patients should eat several small meals throughout the day (instead of three large ones). It’s not a good idea to skip meals to avoid gas, as this could make it worse. These will disappear after a few weeks, allowing you to progressively include these groups.

Experts also recommend reducing your fiber intake, at least temporarily. This is because a high-fiber diet can cause increased stool consistency to block the digestive tract. On the other hand, you should increase your water intake; as episodes of dehydration aren’t uncommon when living with an ileostomy.

3. Implement an active lifestyle regimen

One of the main consequences that specialists have pointed out about living with an ileostomy is the deterioration of social activity. Many patients choose to isolate themselves, which translates into a decrease in their well-being.

The only activities that you should avoid are those that require a lot of contact (such as some sports), but besides that, you have no significant impediments to leading a normal life.

Following an active lifestyle is very important, as this way you avoid compromising your emotional and physical health. If you were physically active before the intervention, you can continue to be so after the end of the postoperative period.

You also shouldn’t be shy about participating in social situations, such as hanging out with your friends. As we’ll see in other tips for living with an ileostomy, there are many products available to ensure your well-being.

4. Shave the area around the stoma

Excess hair around the stoma can prevent the ileum from adhering to the skin, and it can also complicate the cleaning process and the removal of the bag. It’s for this reason that it’s best to keep the hair shaved, especially when it’s abundant or very thick. The best way to do this is by means of an electric razor, as cuts, irritation, and injuries to the stoma are avoided.

5. Empty the stoma bag when it’s 1/3 full

Living with an ileostomy means practicing proper hygiene.
With each bag change, it’s important to carry out an adequate washing and disinfection of the material.

A basic tip for living with a stoma is to empty the bag when it’s 1/3 full. We’ve already mentioned that the best time to replace the bag is during the first few minutes after waking up. This is because, as you’ve gone several hours without eating and drinking, you can make the change without major complications. You can also change it when you shower.

To prevent the stoma from bulging under your clothing, you must make sure to empty it when it’s not yet half full. This will give you more security and help prevent the discomfort of odor released by the contents. Of course, some odor will be released when emptying the bag, but you should still be sure to empty it when its contents occupy 1/3 of the bag’s volume.

6. Consider buying complementary products

There are dozens of products intended to improve the well-being of people living with an ileostomy. The options are varied, and whether you have to deal with the stoma permanently or just for some time, you should consider them. For example, you have belts and girdles that offer support, deodorants that are inserted inside to avoid bad odor (the bags already neutralize it on their own), protectors for the stoma, special wipes, sprays, and much more.

7. Be patient

Although this piece of advice is very generic, it’s one of the most important aspects of living with a stoma. During the first days after the operation, you may even need to empty it 20 times, and its care will be much stricter. As time goes by, you’ll empty it less frequently, as you get used to it. In the process, patience will be your best ally.

Living with an ileostomy is possible

These tips for living with an ileostomy will help you whether you have to deal with it for weeks or months, or years, depending on the case. Your doctor or nurses will give you personalized advice, so you must compare what they give you with what you’ve learned today and always follow your doctor’s orders. If you have doubts, don’t hesitate to talk to your doctor.

  • Bonill-de-las-Nieves, C., Celdrán-Mañas, M., Hueso-Montoro, C., Morales-Asencio, JM., Rivas-Marín, C., Fernández-Gallego, MC. (2014). Living with digestive stomas: strategies to cope with the new bodily reality. Rev Lat Am Enfermagem;22(3):394-400. https://pubmed.ncbi.nlm.nih.gov/25029049/.
  • Mitchell, A., England, C., Perry, R., Lander, T., Shingler, E., Searle, A., Atkinson, C. (2021). Dietary management for people with an ileostomy: a scoping review. JBI Evid Synth;19(9):2188-2306. https://pubmed.ncbi.nlm.nih.gov/34054034/.
  • Smith, JA., Spiers, J., Simpson, P., Nicholls, AR. (2017). The psychological challenges of living with an ileostomy: An interpretative phenomenological analysis. Health Psychol;36(2):143-151. https://pubmed.ncbi.nlm.nih.gov/27831706/.
  • Stavropoulou, A., Vlamakis, D., Kaba, E., et al. (2021). “Living with a Stoma”: Exploring the Lived Experience of Patients with Permanent Colostomy. Int J Environ Res Public;18(16):8512. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8393572/.

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