Healthy Living

What It's Like to Live With a Colostomy Bag

What It's Like to Live With a Colostomy Bag

Many people with IBD reach the point where the diseased part of the intestine has to be removed. This surgery involves a disconnection between the intestine and the rectum. Therefore, corrective surgery is needed to create a new outlet for the passage of bowel movements from the body.

Depending on which part of the intestine is removed, the person will require either a colostomy or an ileostomy.

The opening in the stomach is referred to as the stoma. It is created by drawing the now-healthy end of the intestine through the stomach wall and suturing it in place on the top of the belly.

A soft-plastic apparatus, referred to as an ostomy bag, is fitted to the stoma with its self-adhesive surfaces. The bag needs to be emptied frequently and changed to a new one each day. Special care to the ostomy site is needed to prevent it from getting sore.

According to a study published in the Journal of Enterostomal Therapy, life interventions that change one’s appearance in such a dramatic way take some getting used to. (Pub Med)

If coming to terms with the new body look is extended, the process generally centers around body image issues.

Body image issues with a stoma

The above-mentioned study speaks of the process of body image. For a post-surgical patient, getting used to the ‘new you’ can be a struggle for many. The surgical plan of care is recommended to “provide counseling before and after the surgery … along with other intervention as indicated. The goal is for the individual to adapt to an alteration in body image and return to their previous activities of daily living and lifestyle.” (Pub Med)

In a Cosmopolitan piece entitled “8 things I wish I’d known about having a colostomy bag,” the author, Lisbeth Strutt, now into her 10th year of wearing a bag, shares her 7-year struggle wrestling with body image issues.

That 10th anniversary article was actually a follow-up to a “letter” she chose to write to her “old self” and to others just starting out using the bags, in celebration of her decade with a colostomy.

Lisbeth also adds in that same article, “a lot has changed in the last few years and there are so many things I wish I’d known earlier on.”

Many of you will no doubt identify with some of the shared challenges.

Lisbeth and body image issues

Lisbeth “drew away” from the reality of her colostomy, referring to it as “that thing.” Except for close family members, she didn’t talk about it. While her friends knew she had to have surgery for her condition, they didn’t know what that entailed, and Lisbeth chose not to tell them. Over time, she realized she had been repulsed, ashamed, and even scared about the bag. She has since opened up with others and now calls it “my bag.”

Don’t be afraid to get the word out

Now, Lisbeth wishes she’d been more comfortable in speaking to those close to her about her surgery. Since she’s shared her secret, she has found that those who loved her before still love her now. And she urges “newbies” to speak out and let others know what’s going on with them. She also suggests you be careful with those you choose to tell, however, as ‘oversharing’ may not be the best approach. Just don’t keep it a secret from those you care about.

Take the pressure off dating with some planning

Lisbeth struggled about telling her dates about her surgery. She devised a plan: in her sexiest underwear, she took a selfie and kept it on her phone. If she’d begin to feel that a relationship might be getting to the serious stage where sex might play a part, she would text them to give them a heads up, send the picture, and wait for a response. She reports that not one guy cancelled their next date! 

Strength in numbers

Lisbeth found the mutual support blogsite ‘uncoverostomy’, from which she has included a number of blogs in her article. Lisbeth tells of the incredible support and education she has received from that blog and compares it to “strength in numbers.” Do you have an established support system? If not, you might find it on the above site.

Lisbeth clarifies that she’s most thankful for the medical care from the nurses. Yet, when one nurse suggested she give a name to her bag, to make it more of a friend, Lisbeth was totally turned off by this suggestion. Lisbeth further indicated that someone who doesn’t have an ostomy themselves cannot fully understand what I’s like.

Educate and be educated

In Cosmo, Lisbeth shares that while she doesn’t feel drawn to be an educational organizer, she does feel an obligation to educate others when the opportunity presents. (She also notes a time-crunch as she’s employed, engaged, and has a step-son.) She also tries to educate herself on the newest information in the IBS quarter.

As Lisbeth says, “It probably saved my life.” In her 10-year journey with a colostomy, she has gotten by most of the rough spots and now has more clarity on life and its priorities.

Play by the rules, to a degree

Lisbeth shared that before discharge, she was given an extensive list of foods she could no longer eat due to the colostomy. Disappointed, as she’d expected that surgery to make her condition better and allow her some dietary lax from her pre-surgical diet, she has chosen to try a little of this and a little of that to see what her body might be able to handle. She also notes doing this under physician oversight is the best way to go.

You aren’t any different

Over time, Lisbeth has come to recognize that you are no different a person in other’s lives whether you wear a bag or not.

Lisbeth asks herself about the past ten years, “What changed?” And, “Why now?” Actually, “Why at all?”

She concludes that “We all have our little secrets, our issues to bear, the things about us we don’t want the whole world to know and my colostomy bag was mine.”

And so, with this article. Lisbeth has actually educated others about living with a colostomy bag.