What is it like to live with an ileostomy?

Someone asked a question on google plus about what it was like to live with an ileostomy. For starters, I do want to say that as long as my skin isn’t bad, having an ostomy is not a big deal to me now. Especially when you take into consideration that most people undergoing surgery to have an ileostomy or colostomy were probably very sick prior and had little or no quality of life.

That was me for sure.

Obviously everyone is different but I thought I would take you through some typical things during my week…

Eating

If you have been following my blog you probably know I have an extremely limited diet that really frustrates me. I have had a ton of blockages so I steer clear of fruits and vegetables. I also find my ostomy more challenging to deal with when the output is thicker so I make sure I drink things that will liquefy it such as milk, soda, or decaf coffee. Once you figure out how your body reacts to certain foods, you can make smart decisions. Sometimes I eat things knowing it will cause me some issues. I will not risk putting most blockage causing foods in me but I will eat things that I know make the output thicker or a little more difficult to deal with. But I have been through enough years with this so I understand the risks.

Exercising

Aside from working my abdominal muscles and weight training, I can exercise to my hearts content with an ostomy. I do have to make sure I keep myself hydrated but my ostomy never holds me back in this department. I find it more comfortable to either wear high waist pants or a tight tank top underneath my shirt since it holds the bag closer to my stomach.

Showering

If I am working out, I will shower everyday regardless. But if not, I will probably wait until the next day to allow my skin extra time to remain dry. I always blow dry my appliance immediately after getting out of the shower. Moist, confined spaces are a recipe for disaster so leaving a wet appliance on your skin isn’t a great idea in my opinion.

Clothing

I have been wearing long sweaters, leggings and boots primarily this winter. When the weather gets a little warmer, I bring out skirts and dresses. I can wear jeans as long as it isn’t cutting my ostomy in a bad place. I also love wearing tight tank tops underneath my clothes for some extra protection. I don’t wear any special undergarments.

Work/Public Social Situations

I have been doing some temporary/part time work and it is definitely different living with an ostomy. For me, the only way I can exist in a social situation without feeling like I live in the bathroom is to wait until the nighttime to eat. I try to drink as much as I can but seeing as it also increases the output for some reason, I honestly don’t take care of myself the way I know I need to during the day. I need to feel like I can be out and about, living a productive life and when I eat during the day, my mind isn’t as focused. I know MANY people with ostomies who don’t live the way I do. They eat three full meals and snacks in between and they are loving life. We all have to find the best balance we can for our own individual physical and emotional health.

Bag Change

I usually change my appliance once or twice a week depending on what I have been eating and my activity level. I have done a lot of trial and error with bags and found that the Hollister Two Piece Convex has been the best for me. It definitely isn’t the most discrete one out there but it does the trick for me. I also prefer not to put any creams, powders or tapes on my skin prior to putting the new appliance on. It causes the bag to leak very quickly. I know many people spend a good amount of time with their skin prep and if it works for you, do it!

Intimacy

I talked about intimacy with an ostomy in the three parts below:

Part 1: My Love Life as an Ostomate

Part 2: How Having an Ostomy Affects Relationships

Part 3: Intimacy with an Ostomy

Sleeping

Being a stomach sleeper, this area continues to be a work in progress. I have to make sure I am not on my stomach or left side (where my skin is the most irritated) to eliminate the possibility of it leaking overnight. Trying not to eat too late is always helpful, although for some reason my ostomy is active regardless. It sure  beats the hell out of feeling the urgency so many of us have experienced with inflammatory bowel disease. It is all relative.

Living with an ostomy is not as terrible as many people make it out to be. At the age of 16, I felt very differently than I do now so if you haven’t accepted life with an ostomy yet, you are far from the only one. It took me years and years of trying different procedures and surgeries in an effort to not have to live my life with a permanent ostomy. Most of us have been where you are if you are struggling to reach acceptance of your new body and “new normal.” It is okay. You will be okay.

  • val0525

    I really want to commend you for continuing to be so honest and open about your experiences with your disease.

    I am certain that your candor is greatly appreciated.

    Thank you

  • Lisa

    yep this is my life day to day however I do have my quallity of life back ♥

  • http://www.lifelemonsandlemonade.com Leah Sannar

    Loved reading this post. I live with an Ileostomy and I always find it fascinating to connect with others and hear how they deal with theirs. You’re an inspiration. :o)

    • http://risaroo86.wordpress.com Marisa Lauren

      Thanks girl! I always find it so interesting to hear others experiences too :)

  • http://livingsickdotcom.wordpress.com CrohnsDiaries

    Thank you, Marisa, for sharing this! <3

  • http://ajsalienwithin.blogspot.com/?m=1 AJ

    I just found your blog & love your candid honesty. You seem like quite the crohns warrior.
    I am facing my first crohns surgery this Thursday. I am having a bowel resection of the terminal ileum. It’s been a nerve wracking few months for me. I started writing a bit as I found it helped to get things out.

    • http://risaroo86.wordpress.com Marisa Lauren

      Thank you so much for your comment and taking the time to read! I actually have ulcerative colitis but .. Both inflammatory bowel disease. I’ll be thinking about you on Thursday!! I’m so glad you’ve found writing to be helpful. It really makes me feel like a weight is lifted when i expunge some feelings onto paper (or the computer 😉 )