The Mighty Logo

So You Just Got an Ileostomy: 6 Unconventional Steps to the Next Chapter

The most helpful emails in health
Browse our free newsletters

author with shirt that has a semi colon on it

You just left the hospital after major abdominal surgery. Your bed is no longer robotically adjustable, no one jolts you from your sleep to give you shots of heparin, and praise is no longer heaped upon you for basic human actions, such as sitting up. Welcome home.

There are a lot of comprehensive guides out there for navigating medical and lifestyle concerns after ileostomy surgery, but it’s much harder to operationalize the nebulous concept of “getting your groove back.” I mean, things are different. You woke up with a new bodily appendage. It can be weird when you remember it’s there, to feel it under your clothes, to explain it out loud to a TSA agent for the first time at airport security.

The following six steps are here because your mission, should you choose to accept it, is to make like a phoenix and rise from the ashes. Life is going to get better.

1. Raid Your Closet.

Your body has changed. Some people are lucky enough to be able to wear all their old clothing after surgery, but many aren’t. If you’re in the second camp, head to your closet and get rid of every single piece of clothing that doesn’t suit you anymore. Having daily reminders of what you can’t do serves no purpose. Sell old clothes or donate them to charity, but make sure every piece you still own makes you feel awesome on the body you have right now.

2. It’s Time to Fix Your Relationship With Food.

Let me put this bluntly: you absolutely did not get this surgery to live through the next decade on saltines and Ensure.

It is very likely if you were sick with bowel disease before surgery you were trapped in a Pavlovian cycle through no fault of your own. Chances are, right now you might not associate meals with pleasure or even positive feelings, and your relationship with food may even limit aspects of your social life. Furthermore, immediately after ileostomy surgery, you’re likely put back on the all-too-familiar “applesauce and toast” diet, which reminds you of a ragged old pair of pajamas: familiar and comfortable but not doing you any favors.

When your medical team says it’s OK, expand your diet from your “safe foods” a little bit at a time. If you’re nervous, you don’t have to overwhelm your system. Try a few bites of something new and eat slowly. Wait for a pain that never comes. Repeat.

If you’re finding that fear and anxiety remain a hindrance to nourishing your body long after the physical pain subsides, think about talking to a professional. No need to be embarrassed; you’ve been through a lot, and there’s no shame in doing absolutely everything in your power to get healthy.

3. Do Something Nice for Someone Else.

Colectomies are not given out recreationally. You have been very sick and, potentially, unable to care well for yourself, much less others. It’s hard to be truly empathetic while experiencing great pain, and when energy is at an absolute premium, most of it is expended in survival and self-preservation. Believe me when I tell you that as you heal, acts of kindness will feel amazing.

Start small; you don’t even have to leave the couch. Send a nice Facebook message to someone you miss. Call up a friend on the phone and ask about his or her day. Send a written card to your grandparents. When you’re up to it, you can try to step it up a little, like baking a treat for a neighbor or friend. Try volunteering for an hour or two.

4. Find a Role Model.

Although it may feel like it right now, you are absolutely not alone. There are millions of people worldwide who have an ostomy, and chances are, there are more than a few like you. Find a role model, someone who rocks an ostomy with confidence and lives a life you admire. Model your attitude after theirs, and although it will seem a little “fake it to you make it” at first, I promise you that genuine self-acceptance will follow.

A quick YouTube, Tumblr or Google search will bring you a host of options. Just so you know, my ultimate role model would be a combination of Blake Beckford and Rupaul.

5. Get Out of Your Bed.

During the first few weeks after discharge, home is absolutely where it’s at. You were likely too tired and weak to do much and easily entertained by movies or TV. However, as time passes, you might find that you’re getting restless. Even if you’re not strong enough to do too much yet in a physical sense, make every effort to get out of the house, or at least out of your bed, at least once a day. Sit at a café and read or take your laptop. Accompany a family member on an errand. If you live in an apartment building with a common room or lounge, camp out there for a few hours.

If you’re nervous about leaks (which pretty much everyone is at first), bring extra supplies and even a change of clothes if it gives you comfort.

6. Keep Medical Care Regular.

I do not care how great your inpatient care team was and how many times you’ve practiced putting on your bag. When you leave the hospital, you’re an Ostomy Amateur.

There are so many variables at play here. Your stoma will change quite a bit in the weeks following surgery, your abdominal swelling will go down, your weight may change, and your activity level will steadily increase. Plus, skin issues and leakage are very painful, both physically and even potentially emotionally, when you’re just getting used to having an ostomy in the first place.

I understand you’re likely very tired of going to the doctor, but be proactive in getting as many check-ups in the first few months as you can until you’re absolutely sure you have the hang of things. Wound, Ostomy, and Continence Nurses (WOCN) are amazing people, and they can prevent small skin issues from becoming major problems. Many medical centers offer home care after surgery, and others have WOCN staff in the office.

I hope these tips, while unconventional, still prove effective. Congratulations on making it through surgery; welcome to the other side!

Editor’s note: These answers are based on personal experience and shouldn’t be taken as professional advice. Talk to your doctor before starting on any medication or diet.


Originally published: March 6, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home