Summer Road Trips
June 21st marks the first day of summer in Michigan and the rest of the northern hemisphere. With Summer, come vacations, and with vacations, come trips.
Recently, through StomaCloak, I had the opportunity to help sponsor a road trip – the Drive For Men’s Health. The Drive for Men’s Health was an 1,100 mile journey to raise awareness for men’s health. It turns out, it was also a great way to raise awareness for common issues faced by ostomates. Once on the road, Dr. Salisz and I had the opportunity, using Twitter, to ask ostomates on both sides of the Atlantic for their summer driving tips. For extra fun, I have added some suggested road trips to the links within this post.
Driving Tips for Ostomates
We received suggestions and tips from the United Kingdom, Canada and the United States.
Our friend Thalia Skye who lives in the United Kingdom tweeted:
@StomaCloak @drive4men / My top driving tip for ostomates is keep a bottle of water with you on long drives as we can get dehydrated easily.
— Thaila Skye (@ThailaSkye) June 12, 2014
Canadians Jessica Grossman and Rashid Clark gave us some tips from “Up North”:
@StomaCloak @drive4men just make sure not to eat too much beforehand! And plan for stops!
— Jessica Grossman (@JessGrossman) June 12, 2014
@StomaCloak @drive4men Bring backup ostomy supplies… more than you think you need. Always better to be safe. And bring plenty of water. — Rasheed Clarke (@rasheedclarke) June 12, 2014
Back in the States, Stephanie Hughes and the Colitis Ninja had some helpful suggestions of their own:
@StomaCloak @drive4men My top tips: wear comfy clothes (tight waist can be uncomfortable on long trips), empty every stop, stay hydrated. — Stephanie Hughes (@smlhughes) June 12, 2014
@StomaCloak @drive4men Stop at as many pit stops as you can to empty your ileostomy. Even if it isn’t “full.” Also, prepare for the… 1/2 — Colitis Ninja (@ColitisNinja) June 12, 2014
@StomaCloak @drive4men 2/2 …worst! Better to be over-prepared than under prepared! — Colitis Ninja (@ColitisNinja) June 12, 2014
Driving Tips from Dr. Salisz
I asked Dr. Salisz for his thoughts on making road trips with an ostomy. One thing led to another, and we decided to create this YouTube Video for the Drive for Men crew.
Drive Safely
I hope that you find these tips and trips useful. Before embarking on your summer road trip remember to check tire pressures and your car’s fluids, review weather and road construction reports, and fasten your seat belts. Finally, you can make your road trip even better with this great music mix. Enjoy!
Lake Michigan Photo Source: Royalbroil
Dr. Stork – road trips fabulous. If time travel to conferences that way and always take the side road if time allows. The greatest gems I have found have been on these trips – traveling the road less traveled. Thank you for sharing!!! Camea, RN tw- @kamiyamay
I miss Michigan! Going up to Mackinac were some of the best times! Great tips, Dr. Stork!
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Hello,I am 14 years old and just got total colectomy with iemostoly 10 days back for refractory UC (diagnosed at age 6). Like you I am having a hard time coming to terms with it. But you guys are a source of encouragement. I have the following questions for you.1. What can I do to mask Gas’ sounds when I am in class and it is all quiet (during exams) ?Please give me tips to handle it.2. How long would it take for me to get my appetite and strength back ? I was on TPN for 5 months prior to me electing for a colectomy ?3. What should I do when I really feel down about my colectomy and iemostoly ? Do you have any suggestions ?Anxious to hear from you all.
Dennis,
I am very sorry to hear about the significant health challenges that you are experiencing at such a very early age!
Fortunately, you do not have to go through this experience alone. I am going to reach out to some of my friends at the United Ostomy Associations of America (Twitter handle @UOAA) and at the Wound Ostomy and Continence Nurse Society (@WOCNSociety).
In addition, there are a number of ostomates on social media, particularly Twitter, that I am sure would be willing to offer assistance and advice to help you through these difficulties. Some of these #Ostomates include:
Thaila Skye @ThailaSkye & Ostomonday @ostomonday
Vegan Ostomy @VeganOstomy
Pat Crohnie @apl2018
Stephanie Hughes @smlhughes
Jessica Grossman @JessGrossman
Colitis Ninja @ColitisNinja
Rasheed Clarke @rasheedclarke
I think any, or all of these ostomates, would be willing to offer you help based upon their own unique experiences with having an ostomy. I’ll also reach out to Pat Camp from StomaCloak to get her thoughts as well.
Give me a few days to get the word out and let’s see what kind of responses we get.
No one should have to go through something like this alone – looking forward to seeing if we can find you some answers and some help!
Brian
Hi Dennis,
First off, good on you for asking questions. This is obviously a new lifestyle that you’ve entered, but one that need not hold you back. Just speaking from my own experience, here’s what I can offer:
1. You’ll probably have more, and more audible gas soon after surgery as your body adjusts to the new setup. As time went on for me, the quieter the stoma farts became. Still, keeping your hand over your appliance can muffle the sound a bit. There’s also a product called the Stoma Stifler that supposedly cuts down on noise. I’ve never used it myself, but maybe something worth looking into.
2. It took me about 4 months to regain my appetite and strength, but I had a number of complications after my surgery that probably slowed the process. It’s hard to give you an estimate because everyone’s recovery is different.
3. There are a number of ostomates out there who have done, and continue to do, remarkable things – bodybuilding, modelling, athletic feats. It might help to look at their examples as motivation when you’re down.
Lastly, not to push a product on you, but one thing that really helped me was something called a Stealth Belt – a belt that wraps around your waist to cover and support your appliance. Knowing my appliance was secure, and to a degree concealed, let me do more “normal” things with confidence.
Best of luck to you!
Hi Dennis,
I’m Jess Grossman from uncoverostomy.org.
I’m sorry to hear you’re having a hard time coming to terms with it. I was given my ostomy at 13 years old, but from the beginning, I had made the choice to accept, as my only other option would have been death.
To answer your questions:
1. Putting your hand over your stoma helps muffle the sound, but I would really recommend avoiding foods that cause gas like some vegetables and dairy products. Gum and soda, as well.
2. This is really a case by case answer. For me, it took about 6 months to feel back to normal. I was on TPN and no food for about a year so I know what it’s like. Once you start eating more your strength will start to come back and your appetite should come back the more you try to eat real food.
3. I get asked this a lot and honestly, everyone’s journey to acceptance is their own. I remind people to think about what the alternative would be (for me death) and that this was the better option. I also told myself not to waste a day being sad about the change in my body and to use the time to do everything I couldn’t do before. I became so distracted with life that I never had time to think about. It takes a while to adjust to the bag and how to care for it, but once you’ve got a system down, it becomes just like a normal part of your body and way easier to accept.
Hope that helps!
Hey Dennis,
Things will get easier as you recover, but here are some answers based on my experience:
1) I had a lot of gas in the weeks following surgery, and they caused loud noises for sure! I found that as my stoma became less swollen, the noises went away (maybe after a month or two). I did help that put gentle pressure over my stoma to muffle the sound – the same can be achieved by using an “ostomy wrap” or something similar (just be sure it’s not too tight).
2) I went into surgery barely able to walk on my own, and about five weeks later I was hiking many kilometers at a time. It’s important to take things slow and at your body’s pace. You will become stronger, and your appetite will come back in time. I don’t have experience with TPN, but I hope that others who have will chime in.
3) What I did was visit blogs and watched YouTube videos from other ostomates. You’d be surprised to see how much is possible when with an ostomy! I went to my local amusement park for the first time in over 20 years this past summer, and even with my ostomy I went on over 500 rides in nearly two dozen visits! This year I plan to go bungee jumping (and maybe even sky-diving!).
Good luck with everything! The ostomy community is strong, so if you’re feeling down, don’t forget that you aren’t alone.
Eric
Hi Dennis,
It looks like you are off to a great start in learning about your “new normal life.”
You are asking great questions and got some good advice from what is a wonderful and supportive ostomy community online. And yes please find a WOC nurse for medical questions.
One of the most important things you can do for your overall emotional health is reach out to a local support group. You can find one near you at this link. https://www.ostomy.org/Find_a_Support_Group.html
You may well be the youngest person in the group by many years, but most people find them extremely helpful no matter their age. Local leaders may also be able to connect you with people closer to your age who live near you.
We have new patient guides and lots of basic information on our website as well. https://www.ostomy.org/Ostomy_Information.html
Best of luck in your recovery, we know everybody recovers in their own time and have different levels of successes. Don’t compare yourself to others but so be inspired by them. We are on Facebook, Instagram and twitter as well. You may soon learn that there are no boundaries to what people living with an ostomy can do. We support an all ages team of triathletes, check them out. http://www.ostomyunited.com
We are routing for you, call or contact us at any time!
-Ed Pfueller
United Ostomy Associations of America
1-800-826-0826
OA@ostomy.org
Hi Dennis CONGRATULATIONS to YOU for reaching out to others with your very specific issues. Here are 2 of the most important avenues for answers
1st is to find a specialty Ostomy Nurse in your area. They have all the answers to your questions!!! you can find one close to you by this link just put your zip code in the space provided and the names and contact information will appear :) this is the link
https://www.wocn.org/?page=Nurse_Referral
2nd please reach out to an ostomy support group in your area you will meet teens like yourself here is the link
https://www.ostomy.org/Find_a_Support_Group.html also summer youth camp https://www.ostomy.org/Youth_Rally.html Best to you Pat RN retired
Hey Dennis!
I am a little late to the comments here but I wanted to say first that it takes a HUGE amount of courage to go through everything you are dealing with, you should be commended for that. I am an ostomate like you and also a medical student so I know exactly how uncomfortable it can be to sit through a day of classes when your ostomy is making noises when everyone is quiet during class or exams. Here are a few ways I personally deal with that same issue:
1. I have noticed that my ostomy makes a lot of noises when my stomach is empty. Around 10-11 am everyday it likes to wake up and alert everyone around me that its there so what I do is I will take a small healthy snack like a banana with me to hold me over until around lunch time. Your output slows down as time progresses but it does take time and even still your ostomy may be active like mine but this little trick helps minimize noises for me in the morning. Perhaps you could have your parents write a note to your teachers for permission to have a small snack, this really helps me.
2. With regard to appetite and strength. Its hard to believe at times but it will come back. Your body has been through a lot and needs time to recover which as others have said is different for everyone. It took me about 9 months to gain the weight I lost from when I was hospitalized and about that same time until I felt normal. This said I had an emergency operation and was in really bad shape. Hopefully before you know it you will be back on your feet.
3. What to do when you feel bad…This is incredibly important and I am so happy that you asked. Adjusting to life as an ostomate takes time and my relationship with it is complex and evolving over time. Sometimes things go really well and I forget I have an ostomy and other times are harder, this is normal. I HIGHLY recommend talking to your parents and doctor and letting them know when you are feeling down, but also when you are feeling well. It is important to keep the lines of communication with the people around you who are there to support you. Perhaps your doctor can point you in the direction of a therapist just to talk about all the really grown up things you have had to go through. There’s nothing wrong with that approach and it is a path I am going down right now that I wish I had done years ago. Next I would find a support group in your area to find the people in your area who are just like yourself.
At the end of the day keep your head up. At times it can feel like the deck is stacked against you, these are precisely the times to talk to the people that love you and to remember everything you have gone through physically, how much you have progressed, and ultimately how strong these experiences have made you. Keep your head up and remember that you can do great things.
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