Tips for Traveling with Double Ostomies and UTIs?

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Oscar23
Jun 12, 2016 7:20 pm

I just joined the group today and I'm excited to hear how ostomates/double ostomates are handling travel and an active life. I am not new to an ostomy, I have had an ileostomy and ileal conduit since a rectal cancer surgery saved my life 17 years ago. Typically in the summer, I have had urinary tract infections that have correlated with air travel. So I haven't flown for 7 years. We have isolated the UTIs to dehydration + bag reflux. Other than breaking my addiction to corn chips and getting a small bowel resection due to perforation, I have not experienced any other serious physical issues. Are there any double ostomate air travelers who have any ideas? I take cranberry extract daily + D-mannose, nightly hookup, + flushing my two-piece urostomy bag every day, changing on a three-day cycle.

Thank you to all the bloggers out there as I have been reading through posts learning from you! Just wish I found this when I was diagnosed in my 20's!

Bill
Jun 12, 2016 8:48 pm

Hello Oscar. May I welcome you to the site and hope that you enjoy it enough to stay for a while. I notice that you have been trawling through past posts which I'm sure you will get a lot of information and amusement from. However, the site is quite dynamic so I hope that you will be a regular up todate blogger and forum contributer. I haven't had the same problems as you describe so cannot contribute very much in reply other than wishing you well and hope that others will join me in replying to your post as well.

Best wishes

Bill  

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LadyHope
Jun 13, 2016 2:43 am

Hi Oscar23, welcome to the site! Glad that you found us. There is lots of great information here as well as lots of smiles too. I saw that you had a question about traveling. I have traveled some with my ostomy and so far it has been okay. I travel early in the morning when my ileostomy is less active and I eat little the day of traveling but keep very well hydrated. I also pack double the amount of products in a carry-on bag so my "stuff" does not get lost or sent to another state or country. I usually share with security that I have an ostomy so that they don't make a big deal in line. So far, so good :) Take care and keep posting. Everyone here is so helpful and supportive. I am thankful that I found this site too. LH

Oscar23
Jun 13, 2016 12:54 pm

Thank you Bill and LadyHope for the warm welcome and information!

-Oscar23

Hot for teacher
Jun 13, 2016 1:58 pm

I am not on the site often but I love to read all of the comments and suggestions. It is a great place to get ideas for supplies, issues, and medical concerns. Take advantage of the people with years and years of practice. I love the sense of humor that so many have and cute stories that have been shared.

Happy summer,

Hot for Teacher

 

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

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Past Member
Jun 13, 2016 3:31 pm

Oscar, one thing I would definitely suggest is to carry on your own water. Do not drink water from the airline. I have family members in the air travel business, and every one of them says the same thing. The water is not necessarily uncontaminated. It can be brought in in tanks and refilled into bottles that they will "open" in front of you and then pour into a glass. Same thing for the ice. It is important to stay hydrated, but try their canned cranberry juice, apple juice, etc. or bring bottled water in your own carry-on bag. This helps to alleviate any foreign bacteria being introduced into your system.

Peace.

Nancy.

Past Member
Jun 13, 2016 5:24 pm

Hi Nancy,

I just bumped into this post by you and I laughed out loud!! Not at you but at the flash of memory I got in my brain. Have you ever seen "Slumdog Millionaire"? If not, then you just have to see it. In one scene, it is set in a restaurant in India, a fairly upscale joint where the kitchen workers are homeless street kids, virtually slaves. A customer asks for bottled water and he goes to a filthy barrel and takes out an empty water bottle and then proceeds to fill it from a tap in the wall. After it is filled (all the while chatting casually to the other child who is cooking), he gets a tube of Crazy Glue and dabs some on each broken tan on the bottle cap....good as from the factory!!!

I only drink liquids that come from a can with a pull tab, can't mess with that. I honestly never imagined that the airlines would be doing that, call me naive but I thought the business risk would be too high. Then again, how would you ever prove it if you were to become ill from their bad water? You leave the plane and go God knows where from that point. That practice would save many millions, I'm quite sure!!

Later Nancy... never a dull moment with your posts.

Eamon from the country (Ireland) that will never run out of water!!! Never stops raining here.

Past Member
Jun 13, 2016 5:25 pm

First day on this site. Birthday today. Had colon cancer tumor removed in 2014. Followed by the usual chemo and radiation. Wore bag for 8 months. Reconnection failed. Almost died from colon obstruction. Told surgeon I wanted permanent bag. That was 2 months ago. Then developed leg blood clots that went to both lungs. Again, almost died. Am on Eliquis blood thinner. Healing takes time. By the way, spouse passed away 3 months ago. Been tough!; Steve

CH
Jun 13, 2016 6:25 pm

Steve... it's your birthday and it sounds like you deserve to celebrate... clearly you've been through a lot and life as you know is very precious! I'm so sorry about the loss of your wife... that must be tough with everything else you're dealing with, but you're here and I think you will appreciate the support and encouragement you will get... everyone here has or still is facing a challenge and you will read things that make you smile... those are the best! I'm new here too... ostomy due to rectal cancer in 2014.

HoustonBagLady
Jun 13, 2016 6:28 pm

Wow, how do you carry on your own water on an airline? Don't they take all your liquids in the security line? Maybe buying bottled water from the gift shops behind security would be safer than the water they serve on the airplane. Anyways, I will be taking my first flight post-colostomy in about 2 weeks. I had a terrible UTI about 2 weeks post-surgery that landed me in the hospital for a week. I never thought it could have been related to dehydration, but maybe. I'm really hoping to avoid hospitals on this trip. Wish me luck!

Past Member
Jun 13, 2016 6:35 pm

Yes, generally I purchase a few bottles in the gift stores, and yes, it is expensive, but so worth the peace of mind. Choices, I guess. I have NEVER suffered from a UTI, but I understand they are quite uncomfortable and I don't really care to experience that little slice of life, thank you!! Anything I can do to make my own little world a little bit more secure. I guess I'm just selfish that way.

Peace

Nancy

Past Member
Jun 13, 2016 7:54 pm

I have read about a lot of people complaining about their stoma. One guy was thinking about suicide. How stupid. My neighbor has been wearing one for 30 years and is in good shape. I have only had one leak which was my fault. There are advantages to wearing one. Perhaps someone will read this and I can help!

Past Member
Jun 13, 2016 11:51 pm

Hi there Sheid,

I must say that a post like this is very insensitive and not helpful at all to most Ostomates. It reminds me of the phrase "...people who commit suicide are just selfish..." also very unhelpful. You/we have no idea what else is going on in another person's life. When I was 24 (never sick a day in my life) and in my college library, I never thought that I was about to have my future turned completely upside down, right out of the blue. I collapsed on the floor, bleeding from my anus. Just when things were working out in my life. Having moved to the US from Ireland to NY, then on to San Francisco. I worked my ass off in construction to pay for college and while I took on a full load of credits. I did everything I was supposed to do...as a decent, "normal" person and suddenly everything was a blur for several years to come. Luckily, I had family in the US who cared about me and helped me through the rough parts and loved me for who I was when I thought I was a freak who would never be normal. I went back to school and had panic attacks, etc., but the support of my family got me through in one piece.

People are different and have different tolerances for disruption to their lives and their psyche...Nobody reacts the same, as an Ostomate, you should know this!!! I myself contemplated suicide many times, on my worst days.

Then one day, one of the good ones, I was riding my bike across the Golden Gate Bridge for my regular ten-mile bike ride, every morning no matter how much my ass hurt (put your weight on the knees and don't sit on the saddle). At about 7 am, I was in the middle of the bridge on my way back to Pacific Heights (I managed an apartment building there) when I saw a person with long blond hair which blew straight upwards from the strong updraft at the edge of the bridge. As I got closer, I saw that the person was standing on the bridge railing, holding on with one hand, being rocked by the strong updraft around the South tower on the city side of the bridge. Every little detail is forever embedded in my brain.

As I got closer, it became clear that this person was on the outside of the railing, standing on a narrow gauge rail track which the painters use. I stopped my bike at the tower and walked to the railing. The sky was the brightest blue I have ever seen, the seagulls were fluttering in the updraft, the bridge was totally empty as the tourists had not arrived yet to see this beautiful vision of a beautiful city. Traffic was very light, it was on a Sunday morning. There was not a breath of wind except for the constant updraft which followed the line of the tower, straight up. There were a few sailboats lazily drifting or fighting the strong currents of the "potato patch", where the current from the outgoing Sacramento River meets the incoming tide of the extremely cold Pacific currents.

The person wore a long heavy coat to the ankles, and I thought this was strange on such a beautiful morning. My mind could not accept what was happening before me. Finally, I saw the reality. I slowly walked to the railing and was within arm's reach. I had to almost shout to be heard above the moaning wind swirling around the tower. I looked over the railing, and the person had one foot on the track and one hand on the orange bridge cable. Staring at the city and then looking down at the water, about three hundred feet below, the person did not move, did not answer, and did not turn although I was just three feet away. I thought it must be a teenager from Haifgt Street, one of the many abused runaways, the victims of modern life, possibly stoned, smoked a bit too much weed, maybe took some Acid...who knows. I said, "Wow!!..that's one hell of a view, but there are safer ways to see it, I think you're a bit close to the edge there, my friend, why don't you come over here where it's safer." I got no reply, no response at all...then I knew.

I could have grabbed her, I only found out later that it was a girl. Her hair blew so crazily in the wind that I never saw her face, and she never spoke. I stood there for ten minutes talking with no response. I thought that if I could keep talking long enough that the bridge police would see her/us on their video cameras....apparently not!! Then I saw a lone biker coming from the San Francisco side. When in range, I quietly waved my arm to indicate trouble. She saw me and pedaled faster towards me. I turned my full attention back to the young lady on the rail.

When the biker was about thirty feet away, I saw the girl let her hand slip from the cable, almost in a gesture of submission to the inevitable. Her hand slid down the orange cable as she rocked in the wind. She seemed to balance like this for ages. One foot resting on the track and the other barely touching it. It was like a nightmarish ballet or a ghoulish circus act where there could be only one grisly ending.

Suddenly she seemed to levitate about a foot off the rail on which her foot had balanced, almost straight upwards. She had pushed herself up and out, feet first off the painters' track. Her oversized coat fluttered in the wind, and she seemed to just hang there for seconds, flat on her back, looking up at the beautiful blue sky. Her arms spread like Jesus on the cross, feet together, her coat flapping wildly in the rush of the air swirling around her. My first thought was that the coat would slow her fall a little, maybe she would be ok. As I watched her get smaller and smaller, I knew that this could only end in one way.

As her feet left the rail, I thought, "Here is a living person, looking healthy, able to balance on this four-inch piece of steel, conscious...in about fifteen seconds that healthy person will be dead. This thought just flashed through my brain like a tsunami...now alive...now dead. There was no reason that was readily apparent, no disability...just a person who wanted to die. A person who had no reason to want life anymore, a person who had fallen into the "Black Hole" (you know who you are, you know the feeling). Backed into a corner by life itself in a pitch-black room, your back to the wall with no exit, no escape. This was her exit from the Black Hole. Her life, her history, her pain were a mystery to me, I just knew one thing about her with absolute certainty...she did not want and could not stand to be alive anymore.

Just as the huge splash emerged from the water's surface, the biker arrived by my side. I told her to go and alert the bridge police, and I would stay and watch to see where the current took the woman's body. The currents under the bridge can be like a fast-flowing river, lethal in seconds.

The Coast Guard station is nearby, and they arrived in minutes, and I watched them remove her from the rushing water. I went to the bridge police to report what I had seen and was truly shocked. The officer just sighed, gave me a form, and said, "Fill this out." I was still shaking. I thought..."I could have grabbed her coat??? But if she wasn't jumping, I might have actually killed her by grabbing her...so many emotions.

The point of this overly long exercise is that suicide is not "Stupid"...it is desperation in its purest form when it seems that no other option is open and the last door to redemption has been closed in your face. Most of all, it is a waste and most definitely not the act of a coward.

I once sat in a room and could almost see the blackness surrounding me, engulfing me. It felt like I was lying in a hole, and black liquid was pouring in and slowly rising, surrounding me, burying me slowly. For me, it was temporary and very quickly passed. If I had no close family, I would never have come back from that deep hole I had fallen into.

Watching that poor girl fall to the waves confirmed to me that suicide was never an option...BUT...if I made that decision, I would have to consider the people who love and care about me. Because I consciously consider how this would impact upon others, I know that I could never do it. These thoughts imply rationality, and suicide is often accompanied by irrational and insurmountable fears. The company of others can defeat those fears and calm the spirit.

Self-isolation is dangerous...don't do it.

All the best to all the Bag People out there, everything we do or do not do has consequences.

h5g
Jun 14, 2016 12:07 am

You can carry any sized empty bottle you like through TSA. There are drinking fountains all over airports or some food vendors will fill your empties.

Past Member
Jun 14, 2016 12:57 am

Sorry to hear all that you have been through. I have been so sad going through some of the things you have faced. It seems you use a bit of humor and maybe a little sarcasm to get you through a very tough time. People tell me I am a strong person, but I am not sure what they mean.

January 2015, I called 911 from my house and I'm not even sure why as I believe or I was told that I was septic at that time. It seems I had a complete blockage due to polyps in my colon and it actually ruptured. I have been told by many medical professionals that I am a miracle, that I should not have lived through what happened to me. But I am here, very much alive. I don't remember anything after entering the hospital into the emergency room; evidently, they did emergency surgery on me and then left me on a ventilator that night. The next day, the surgeon came back and vacuumed out my cavity. He saved my life. I went into the hospital on January 9 and had surgery that day and also on the 10th. I was in the hospital for seven days and

then transported to rehab, better known as hell. When I returned home after two months in rehab, I could not even walk down the hall without holding onto the walls. My brother and sister came for a few days to help me but had to leave to go back home. My husband had passed away.

Did I mention that I lost the love of my life after 22 years on August 7, 2012? I am living in a town where I have no family; my nearest family member is 7 to 8 hours away. I am fortunate to have a couple of good friends as this has been a very challenging journey.

I recently took a PET scan and it came back with a spot on my liver, so I have taken the time to do an MRI and hopefully it will come back with no proof of anything on my liver.

Bill
Jun 15, 2016 7:00 am

Hello anonymous. I normally thank people for their posts but will make an exception in this case. Everyone has a right to a point of view and you have that same right.

However, there must be many ostomates who have contemplated taking their own lives because their quality of life seems so unbearable. By saying that to contemplate suicide is 'stupid', it seems that you are implying that all people who have these thoughts are stupid. I have both a personal and professional view on this subject, having contemplated it myself and worked professionally for more than 40years with people who temporarily have these thoughts. In all my experience I have never come across any of my clients who I would describe as 'stupid'. There has been a vast range of intellectual capacity amongst them, from those with learning difficulties to those with doctorates, but not one was stupid. They each explained their circumstances, thoughts and feelings in a rational and considered way. Most of them had difficulty controlling their emotions at times but once that was sorted, they were able to make rational, logical decisions about whether their lives were still worth living or not.

Having a stoma is not the only reason for thinking that life is not worthwhile and people with stomas are not immune to the rest of life's pressures. I have listened to stories from some individuals and thought to myself that I would not want to carry on if all that crap was part of my daily life. However, what I found worked best was being emotionally strong for them, staying positive, yet realistic, without being negatively judgemental, My own efforts used to be towards helping them to see their lives from a different perspective and raising their self-esteem, providing the support they needed to carry on living rather than enacting their suicidal thoughts.

Calling people 'stupid' is like calling them any other derogatory names. It may help to reinforce your own point of view but it rarely helps the people who suffer in this way. It feels like a form of namecalling and childlike bullying that often has the effect of lowering people's self-esteem even further, which is hardly likely to help them grow emotionally stronger and to move to a more positive mental attitude.

A site like this brings people together for mutual support so I hope that in future, if you really believe this sort of thing, that you can rephrase the concept in order to give encouragement and support rather than imply criticism and denegration. 

I hope this is helpful

Best wishes

Bill

Bettyjoe
Jun 19, 2016 11:50 am

Hello, I am Bettyjoe. I would like to welcome you. Being alone to deal with the new norm is not a good thing, but you will adjust. Sometimes having too many people around makes me anxious. I am sad to hear that you lost the love of your life. Life is very unpredictable, but we are resilient. I had my surgery in April of this year as a response to colorectal cancer. I am not totally healed, my body still is weak and tired, but I am much better. Good luck and keep posting if you have concerns or get lonely. I know how it feels.

CH
Aug 08, 2016 1:11 am

Hi BettyJoe...just checking in to see how you're doing with your irrigation...I have been thinking of you and hoping that you're having success! Blessings-CH:)

Bettyjoe
Aug 08, 2016 8:18 pm

Oh boy, I have been thinking of you. Today, I received confirmation that the supplies have been sent. Last month, there was a problem with supplies. Anyhow, as soon as they come, I will start. You do know that I am afraid, right.

CH
Aug 09, 2016 1:19 am

Of course you're afraid! I was too, but I can truly say it has changed my life! I thought that since I was doing so well with it the way it was, that I should just continue on with a good thing... however... it was constantly dealing with the bag in some form or another. The best part for me is that I no longer wear a bag... just a stoma patch... and I really could almost wear just a large band-aid... I'm really confident enough to, but I don't want to encourage you to do that just yet! My oncologist tells me that there really shouldn't be any "accidents"... that the colon is actually now "trained" to only go when irrigated. I do it every 48 hours in the morning and it's approx. 45 minutes start to finish... then life is almost like it used to be for those 48 hours... it's really life-changing and I hope I never have to look back! I will try and check back with you next week... I really think you'll do great! Blessings... CH

Bill
Aug 09, 2016 5:35 am

Hello Bettyjoe. It's as CH says - you'll be fine. Like most things it takes a bit of getting used to at first but once you settle down to a routine, the benefits far outweight the 'inconvenience'.

Hello CH. It's great to see you responding in such a positive and vibrant way sharing you own expreiences. People new to the process need these sorts of posts to help boost confidence in that pre irrigation period when they don't really know what to expect.

Best wishes

Bill

CH
Aug 09, 2016 2:21 pm

Thank you, sweet Bill... I can say the very same for you and your posts... ALWAYS upbeat, encouraging, and helpful! I absolutely want to see BettyJoe do well with this (BettyJoe... are your ears burning..??) and I know she will... I completely agree that it takes some getting used to and I see that some people seem to have an aversion to seeing the actual process up close and personal... that never was a problem for me really but I can certainly understand it... it's back to weighing the pros and cons... it's life! Thank you again for your encouraging words and we will be waiting to hear BettyJoe's progress! :)

CH
Aug 20, 2016 2:46 am

Hey BettyJoe...just checking on you and wondering how the irrigation is progressing? I have been thinking of you and hope that you have been able to begin and that you're doing well with it...let me know how you are if you have a chance! :) CH

Oscar23
Dec 28, 2022 2:10 am
Reply to Anonymous

Thank you, Nancy!

Jayne
Apr 03, 2024 7:39 pm
Reply to Anonymous

Reply to whoever wrote the post concerning encountering the girl who jumped from the Golden Gate. Jun 14, 2016 12:51 am

For it would appear that the profile of the author is not clickable and thus is not accessible... Past member?

[If it is a software glitch - then perhaps Admin may be able to advise - TY.

 

Message:

Thank you for writing this post. Your account goes far deeper into your psyche than the recounting of the girl on the bridge...

 

May all your bike rides and journey through life be filled with purpose, and may you encounter much joy - for such may be found within the blue sky of hope and warmth of love.

 

Unconditional love and gratitude

 

And respect for your strength, intention, and stamina - and loving of others.

 

Jayne