living with a colostomy bag

Just a little warning … if the thought of this topic makes you a little squeamish, I’d skip today’s post.  May just be TMI for most. But somewhere out there in the blogosphere is someone just like me, a few months into learning to live with a colostomy bag and he or she needs to know they are not alone in their endeavor and how other people are learning and living with a bag.

In my final consultation with my surgeon before scheduling my colectomy surgery in August, my final questions were ‘What’s our best case scenario? What’s our worst case scenario?’  To which he replied, ‘Best case scenario: no surprises, we remove the bad section of colon, reconnect the good colon and sew you up just like in 2008.  Worst case: we find an unexpected mess and we have to do a colostomy instead.’ I had a God inspired sense that I needed to expect the latter so I was really not surprised when coming out of anesthesia after the surgery and my wife confirmed the worst-case scenario had been what they encountered … no doubt I was disappointed … just not shocked or overwhelmed.

People ask me all the time about the cancer … NO ONE ever asks how are you adjusting to the colostomy?  Perhaps that’s a bit too personal … too uncomfortable to talk about.  Quite frankly my new bathroom habits can at times be more of a challenge than my battle with cancer and chemo …

There are currently less than 750,000 people in the US living with some kind of ostomy … they have different names based on where the exit wound is on your abdomen.  We had a special nurse (so upbeat, positive and cheerful) at the hospital that came in teaching us how to change and empty the colostomy bags.  My wife is such a saint and jumped right in and took responsibility for me at the hospital and most of the first 6 weeks or so.  We watched a video about people … very active people … both young and old … sharing their testimonies of lives with the colostomy bag for years … and even decades.  One of my beloved brothers shared how his step-mother has a colostomy bag and actually could have it reversed but has chosen not to … and I can understand that on a number of angles.  A nurse shared about an aunt … a number of people encouraged me on this greatly while in the hospital.

Unlike how God created us, you don’t really control when you fill your bag (yes, I’m being careful with my wording).  And unlike the natural release of personal gas into the atmosphere around you, your bag retains that as well … so sometime you have to find a restroom to deflate your ballooning bag … and sometime like an RV you’re looking for a dumping station.

My wife and I have found that the most efficient way to dump the contents of the bag is directly into the toilet with no middle containers … which transferred the responsibility to me from her once I recovered from surgery.

In commercial restrooms, the bowls and seats are bigger so you just slide way back and dump directly into the toilet bowl.  At home, the bowls are much smaller and that doesn’t work.  That stumped me for a while … but then I found a small shower stool (no pun intended here) on Amazon,com with adjustable legs.  I ordered it, adjusted the legs to make the stool just a few inches higher than the toilet bowl and it gives me the perfect frontal approach to my RV dumping station.  And the stool takes up little room in my bathroom when not in use.

Also, while most things I read say its not necessary, we buy protective gloves by the 100.  Oh, yes and a supply company mails us our colostomy bags, gasket paste and bag lubricant once a month.

OK, so I’m already dealing with colon cancer … well, one of the rapidly dividing healthy cells that chemotherapy attacks in addition to the cancer are cells in the bowel … which during the chemo can mean diarrhea and/or constipation … joy in your trials and tribulation.  I tend to the latter so I’m a bit more fiber conscious and the oncologist recommends Senekot-S (go with the store brand – about a third of the cost) … a couple of those pills each night and the bowel train seems to keep on moving thru the tunnel.

After more than two months, I’ve adjusted and its just part of life … no big deal but I am developing a couple of phobias when I’m out and about.  But this post is already a bit long so I’ll share more on that later today or tomorrow.

Living in the midst of a peace beyond understanding …

Bernie

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About bwebbjr

A grandfather, father, husband, man, and a child of God who is following Christ Jesus and working out his salvation with fear and trembling; for it is God who is at work IN me, both to will and to work for His good pleasure (Philippians 2:12-13). I dodged my first bullet with cancer when a cancerous polyp was removed in a sigmoid colectomy surgery in August 2007. Four years later, in the midst of a second colectomy surgery we discovered I had Stage IV metastatic colon cancer. Rather than colectomy surgery I had colostomy surgery, which now means the colostomy bag is a part of my everyday life ... with the emphasis on life. God has given us a peace beyond understanding as my wife and I have traveled this journey. By the grace of God I am blessed to be a 6 plus year cancer survivor aka warrior. In writing, I am often wrestling with my own personal struggles and beliefs and in the midst God leads me to a lesson He wants me to learn ... or sometimes He simply touches me in the revelation of Himself. My hope is that the result you see here might touch your heart and glorify God. And let me be clear ... I am not the only one with something to say. Please join in the conversation sharing your faith, your cancer experiences, etc. I would love to hear from you. Bernie
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5 Responses to living with a colostomy bag

  1. As always Bernie,

    Telling it like it is!

    Hard to believe it has been eight years since this journey begun.

    I have learned a lot for sure, burping the bag, etc, have to share with you some time the funny and not so funny event’s.

    Most people don’t have a clue I have a colostomy, it is just part of who I am!

    Again I appreciate your sharing your journey, it well and it has touched others!

    Blessings and prayers my friend,

    Paul
    aka The Mayor 🙂

    • bwebbjr says:

      Good evening Paul … I guess with age and maturity come a greater sense of transparency and just telling it like it is. It really is quite comforting that I am not a trailblazer on this journey and that others like you have traveled the path I now find myself on. What you wrote is so true, “It is just a part of who I am.” Thanks for the encouraging comment Paul … tomorrow I share some of my phobias regarding the colostomy bag … I can be a bit of a goofball!

      Abide IN Christ Jesus and His love brother!

      Bernie

  2. lindylu44 says:

    My colon was perforated during a “routine outpatient” surgery, so my colostomy was a complete surprise. I remember being wheeled into recovery and saying that I was hurting, and a nurse leaned over me to tell me that she had just given me a big shot of fentynal and that I had to be resucitated. The next time I woke up my husband was holding my hand and in tears.

    I was a young woman in my 30’s and in an instant my view of myself changed. I simply could not accept what happened to me. My husband did all of my colostomy care because I could not face it, until the time came when it needed to be changed when he was at work. His mom came over to help me and neither one of us could attach the bag to the flange. During a panicked call to my husband I could hear him tell his mom to grab a hefty bag and some duct tape to tide me over until he got home. That did if for me, mom-in-law looked at each other and about fell over laughing so hard. It was exactly what I needed.

    I was lucky, my insurance allowed as many bags as I wanted, so I never had to reuse any. I would walk into the medical supply store and when I was asked if I needed help I would reply that I needed a bag to match my shoes. I started going on message boards to hear how other people were dealing with colostomies. It got easier and better, my husband told me every day that I was beautiful, when I wanted to hide in the darkness, he would shine a light on me.

    I don’t have the colostomy anymore, but I will never forget the gift God gave me in my husband.
    Here is a link to my blog post about my colostomy. http://lindylu44.wordpress.com/2011/09/01/a-colostomy-war-story/ If you visit my blog, you’ll see that God has performed many miracles in my life

    Thank you for sharing your story

    • bwebbjr says:

      Thanks for being so open and transparent about what you had to endure. Most folks have a little bit of warning that the colostomy may be one of the things they come out of anesthesia to face … but you were obviously caught totally unprepared. The good news … it has been reversed … and God revealed the incredible gift He has given you in a loving husband (and a loving mother-in-law – what she did also went way beyond the expectations of in-laws). I will always remember the hefty bag and duct tape story and can just envision you and your mother-in-law cracking up … good memories out of a tough time. Like your blog … I find blogging is a great way to work out things for myself … and oftentimes help us connect to others dealing with the same things. this next year it will be 8 years for me of blogging. Thanks again for sharing your story.

      May God bless you and yours in all you do!

      Bernie

      • lindylu44 says:

        I would have responded sooner, but 10 days ago my very best friend passed away at the age of 46 and I went from her funeral straight to the hospital for several days due to a massive kidney infection.

        I just wanted to tell you how much I appreciated your kind comment. I try to live my life openly and transparently and sometimes that backfires on me.

        I’ve only been blogging for 2 years and it’s been a great way for me to process all that is happening to me. I love how God is using my life as a way to reach out to others and how He has blessed me in putting people in my life to truely show me what love is.

        I would love to link to your blog and hope that you would link to mine. I’ve already added you to my prayer list.

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