I spent much of the summer recovering from major surgery, but now I’m back. I had my colon removed on June 18th to address a precancerous situation. It was a major surgery. I was on the operating table for over 5 hours. My surgery went very well. My colon had not turned cancerous and now I no longer have ulcerative colitis.
It took a full 8 weeks to heal up and get my strength back. When I got home from the hospital, it was a big deal to walk to the end of my driveway. Now I’m all healed and walking 4-6 miles each day.
Late June – slowly making a trip back from the end of the drive way.
And I’m back RVing! The first trip I took was a 2 week trip in August to visit family in Maine. At that time, I still had a lifting restriction. I had to be careful and not lift anything heavy which could cause a hernia near my new stoma. Things are a little different since I’m traveling now with an ostomy bag. So, I thought I’d write something about what it’s like “rollin without a colon”.
Living Without A Colon
Without a colon, the end on my small intestine was brought out through my abdomen. I now have a stoma near my navel. The stoma excretes undigested food residue after it passes through my small intestine. The stoma is a little red protrusion about the size of the tip of my finger. It has no nerves and no feeling.
An ostomy bag
I wear a small pouch on my abdomen called an ostomy bag. The bag is flat and hangs between my pants and underwear. The ostomy bag attaches to my skin with adhesive. The food residue comes out of the stoma and empties into the bag. When I’m dressed, you really can’t tell that I have an ostomy.
If you look for it, you can see a slight bulge at my navel. An observant check out clerk at the grocery store thought I was carrying a concealed weapon. True story.
So here’s some things that are now different. I have to empty the bag about 6-7 times per day when it gets about 1/3 full. I can choose when this happens. It’s easy peasy to empty the bag over a toilet and takes less than 2 mins.
I have to change the bag every 3-4 days. Changing is a process that takes about 20 mins. I can do this is the bathroom of my RV. The biggest issue is cleaning the skin around the stoma. I use a two-piece bag. The first piece is called the flange and attaches to my skin. The second piece (the bag) clips onto the flange.
Dealing with an ostomy is a non-issue for me. The added maintenance is easy. It doesn’t get in the way or hinder me. There’s no regular follow-up appointments needed and no meds to take. It can develop a leak near the adhesive but that is rare.
The one thing I have to do is drink lots of water (8-10 glasses per day) to avoid getting dehydrated. My colon would absorb water from the food residue. Without a colon, I have to drink more water to make up for the loss of water absorption from the colon.
I bought a new 24 oz stainless steel insulated water bottle on Amazon along with a carrier. The blue bottle is now my new buddy and goes everywhere I go.
Traveling With an Ostomy
When I travel, I have to take along my ostomy supplies. There’s a bunch of stuff I need to handle bag changes. There are bags, flanges, paste, rings, two types of wipes, powders, and scissors. I have two small plastic bins that hold all the supplies.
My ostomy supplies
I usually get a month’s worth of supplies delivered from a medical supply firm. I can order any supply I need on-line and have it delivered anywhere with 3-4 days. Taking an 8-week road trip would not be an issue. When I go to FL for the winter, I just change the delivery address for orders. And FYI – Medicare pays for all my supplies!
I have to be careful about developing a hernia around the stoma. I no longer have a lifting restriction, but as a precaution, I wear a special hernia belt if I’m going to lift anything heavy like a bicycle or grill.
A New Life
Without a colon, I no longer have bowel movements. And without ulcerative colitis, there’s no more running to the bathroom. I no longer have to worry about an accident. I don’t have to scout out and know where the nearest bathroom is. Getting rid of colitis got rid of a lot of stress and anxiety.
It’s also been quite liberating. I now can do things like hiking, go for a walk with my wife, and play golf that I had to give up when I had colitis. I’m not limited to what I can do. I can do any activity that I feel comfortable doing.
In August – finishing up a 3 1/2 mile walk near my home.
Eating most foods is not an issue. I have to avoid nuts and certain raw vegetables. These are things that could cause a blockage in my stoma. But I can now eat foods (dairy, ice cream, wraps, grapes) I had to give up with colitis.
Overall, its been a net positive change for me.
My First Trips
The RV trip to Maine went fine. I spent a day at the beach for the first time in over four years. I played a round of golf with Anne’s Mom. And I had a great time visiting with family.
August – at the beach in Maine with Anne
I took a second RV trip over Labor Day to a music festival in Rhode Island to attend the Rhythm and Roots Festival. There was some great music and I got to dance with several of my friends. I was a little concerned about dancing in closed position with the ostomy. During a waltz, I checked with one of my friends and she couldn’t feel or tell I was wearing an ostomy.
On the dance floor at The Rhythm and Roots Festival
So, I’m back. I’m still motivated and able to travel just as I had been doing. Traveling with an ostomy is a piece of cake and much easier to deal with than colitis. It feels good to be back on the road and to get back to blogging.
I took the summer off to deal with recovery. I had great support from my family helping me with everything. My friends gave me great encouragement. Thank you for all the nice comments and messages.
And most of all, I thank God for being with me, helping me recover, and giving me a better life.
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So happy to hear your doing well! Love your sense of humor about it all. All the best to you JDawg.
Thanks Roger
Amazing recovery. God is Great. May you continue a long healthy life.
Thanks for sharing this. Your positivity is contagious.
Agree about the positivity! I sent your post to an aging friend of mine who’s having health/surgery issues and a limited lifestyle to prove to him there’s a light at the end of the tunnel. Thanks J.Dawg for sharing 🙂
Thanks for your openness to educate people like me who know nothing about it. I was very interested to read this and I admire you and wish you many more years of travel and health!
Thank you for your comment. Prior to my surgery, I had no idea as to what it would be like living with an ostomy. I had never met anyone who had one and never read anything about what it entailed. All I had was my Dr.’s assurance that I’d be fine and my life would be just as good. And I trusted in the Lord to do His will. I wrote this to educate others as to what it’s like and to share my experience. Hopefully it helps someone.
J. Dawg
I am so glad you have a new lease on life. Thank you for sharing your story.
I just read your blog. I never read a story like this in my life. You are amazing!
God Bless!
Welcome back!
I’m happy to see your positive, matter of fact description of your ostomy and what it means for your lifestyle.
So that’s the ‘adventure’ you were on. Thanks for the informative report and sharing the good news. I actually missed your encouraging blog! (we’ve never met – just kindred Winnebago spirits!)
When I think back on it, I guess it was an adventure. I told my wife that as long as I wake up from the surgery, then it’s all good. 😉
Thank you for sharing your story so honestly with us. You are quite an encourager for those of us who are challenged by physical issues.
Thanks, Jean;
Every day we have a choice – to focus and be consumed at all the negatives or to enjoy all the positives things. I know it’s not always possible to do this everyday. When I had colitis, I had days when I suffered greatly with pain. Thankfully I got through those periods and now try to enjoy each day that God gives me.
J. Dawg
I have to say you have a great attitude about your new way of life. Which is the Key to health and happiness. My mother live with a ostomy as well. In 1998 she under went the surgery to remove a tumor the size of a grape fruit on her rectum. She was in ICU for a month and I stayed by her side. I helped to empty the bag till she could accept the change. She was a remarkable woman – mother of 15 children, 49 grandchildren and 60+ great-grand, had two miscarriages, several leg surgery’s for ulcerated sores, cancer survivor, and the last 5 years of her life-lived on dialysis. She was also very positive and chose to be happy. She lived to be 86 passed in 2011 and was married for 65 years. I tell you all this to say – see each day as a blessing and I see you do!!
Jane,
Thanks for sharing some info about your Mom. Sounds like she lived a full life and left an remarkable legacy. You were blessed to have her as your Mom.
J. Dawg
Oh! I bought a Forest River Forester 2015. I have taken my first trip to Estes Park Colorado for the 4th of July. It was wonderful to escape the heat of the Dallas area. Had a great time hiking and taking in all the fresh air. Hope to travel more soon!
Jane;
Estes Park is a lovely place. Must have been busy on 4th of July. The western side of RMNP is less busy and lovely. Safe travels.
J.Dawg
Hi J. Dawg, I’m so glad to hear you are back in the game. I’m getting ready to jump back in myself. Hope to close on a 2018 Thor Citation this coming week. 🙂
Congrats!! So wonderful to read you are able to make the adjustment and have gotten your freedom. I’m looking forward to more of your travel posts.
Thank you so much for sharing your success, your adaptations and super positive attitude with living with an ostomy. A touchy subject, but you wrote about it perfectly. So happy you have chosen to not let it slow you down and your smile says it all.
My brother had one for diverticulitis and was a mail carrier. He managed well also.
I’m a Type I Diabetic living full-time in my RV. I usually keep a 3-month supply for my pump and CGM supplies. I should write a blog entry about that showing how certain medical issues don’t need to limit us. A neighbor of mine at our RV Resort is a Disabled Veteran and wheelchair bound. Not much stops him too, thank God. All the best to you.
I write a blog also and I’ll definitely include an in depth explanation of living with T1 on the road.
Thanks for the inspiration.. God bless and safe travels.
Thanks for sharing, Vicki;
Another reason I wrote this is exactly what you said – to show people that while I have medical issue, I accept it and find ways to still do things I enjoy. I’ve heard a couple of stories from people who know people with ostomies who limit themselves because of fear of leaks or being too self conscious. Our stories can inspire others. Please send me your blog post when you write it.
J. Dawg
“Man of Faith! It is always a joy to read your stories. They are very uplifting and inspirational. Thank you for sharing your journey with us Jim.
Glad everything is ok. Great to have you back in the Blog world.
Great job explaining details of living with an ostomy and being positive for others facing the same situation. Enjoy reading your blog and looking forward to more posts.
We’ve been traveling a year and a half in our 2014 View Profile-just like yours!
It’s been awhile since I’ve checked your site and surprised you’d gone through so much, but happy to see you’re recovering nicely.
I just read your blog. I never read a story like this in my life. You are amazing!
God Bless!