Dealing with Fear of Going Places with an Ileostomy

I have an ileostomy (surgery in Oct, many weeks in the hospital prior to surgery leading to Crohn's diagnosis and then in and out of hospital with various issues like dehydration, etc. for weeks after that).

I am back to work full time now while dealing with high output and on IV fluids due to concerns about absorption. It's been very up and down. Some days I still have nausea (which is an improvement over the weeks of constant nausea at least) and I'm tired a lot. And often depressed (I'm on antidepressants).

But how do I get past the fear of going out besides work (I have a desk job and the bathroom is nearby)? I have not had many problems with leaks/blow outs, etc. but the worry is always there because I have such high output.

The big issue looming is that we are supposed to go see our son dance in a few weeks (he's in the ballet conservatory program at Butler Univ). It's about a 3-4 hour trip by car. I have an emergency kit to go with me but are there other tips that would help? That would make me feel more secure besides not eating/drinking during the drive :-) I have tried Imodium/Lomotil and they don't seem to do much.

Thanks!

The good thing is that your stoma is a stable size at this point and you haven't had problems with leaks. That's really great. I have high output, too, and empty often during the day. You can keep the volume of food that you consume lower while driving although, going by car, you can always stop to empty (I keep a Tupperware, water and wipes in my car just in case I ever have to empty while in my car.) Just to feel more safe, you can secure the edges of your flange with Hollister Adapt barrier extenders (they sell them on Amazon, too, if you want them fast.) You have your emergency kit so you do sound good to go. We've all been where you are. It's all unknown, it's scary, we're an accumulation of all of the trauma we've experienced. You're not alone. Try to keep your son's performance in the front of your mind. You must be so proud!

Hello Storm 54.

Thanks for your question and it’s great to see that you have already received a practical, constructive/logical  reply from eefyjig.
My own response would be about the fear/worry that you express, as this can sometimes stop people from doing all sorts of things that they might otherwise enjoy. 
George Bernard Shaw can be quoted as saying that more than 90pecent of all the things he ever worried about  -never happened. I think that says a lot!
Seriously, fear is a basic emotion(instinct)  , which can (in certain  circumstances) be a lifesaver. However, if fear (or any other emotion)  is not controlled, then it can be quite dysfunctional for individuals in modern societies.
The study of controlling emotions is vast and complex, but if I was to try to summarise the gist of controlling emotions it would be to say that they can be effectively counterbalanced by logical thinking.
For many people, this can be easier said than done, as many people think emotionally, rather than logically. The techniques for logical thinking take a bit of practice but most will find the effort to be worthwhile in the longer term.
In the past I have run many courses to help people with controlling a variety of emotions and this has resulted in a series of books documenting what I have labelled ‘Constructive Conversations’., which is a where people have worked through a series of logical questions about specific issues to created and build their own answers to the problems they face. It has been a very effective intervention , but it is unlikely to work in the same way at a distance.

An alternative approach is to have a look at the work of Edward De Bono, who has produced some simple and easy to read/follow books on thinking and how to think logically.

eefyjig’s advice is sound and if you prepare for the journey in a practical (logical)way, then the chances are that nothing serious will go wrong and you can enjoy the journey and the ballet. 
Best wishes

Bill 

 

 

 

You have a few weeks before the big trip. Can you start small, maybe go to the movies or spend a day out shopping or visiting with friends? Shorter, smaller excursions might help you build some confidence about being out and about.

Beyond extra supplies, when I first got my ostomy, and even now when I'm flaring, I keep extra clothes in the car in case I need them. Sometimes just knowing I have backups is helpful and eases my mind so I can focus on work, events, whatever else I need to do.

Start with short distances, just a short walk or drive, and gradually increase the distance as you gain confidence. Make plans with family and friends to go out for drinks or meals, or even just to their house, to build your confidence.

You can take much higher doses of Imodium/Lomtil/Codeine, etc., than it says on the information leaflet, with a doctor's advice only. Also, a mixture of a few meds taken at different intervals so as one starts to wear off, the other kicks in.

Words of Encouragement from Ostomy Advocates I Hollister

You have already been given good advice from the other posts. I have very high output as well. Try to relax and enjoy your son's dance.

If you're already going to work, there's no difference going to watch your son. Just because you're gonna do something different doesn't mean your bag is gonna come flying off. I'd guess not eating for a while before going would help and emptying before you go in to sit down. Enjoy the time.

I don't really need to add anything to all the great advice you've been given here. Just want to wish you the best going forward. We've all been there, and got past the challenges of getting back to a normal life, and you will too!

Terry

Great advice from everyone, particularly in taking a few short trips first to build up your confidence, and the spare change of clothes is a must.

The barrier extenders are a good idea (all companies have their own version), as even if you spring a leak the extenders can contain it for hours until you find a bathroom or place to change. I used to have a few leaking issues a few months after ileo surgery and the extenders were a godsend.

If you have high output the following may not work (as we are all different with what slows down output), but whenever I take a longer road trip, I eat a small bag of potato chips or pretzels beforehand and I don't have to empty until I reach my destination.

You've got some great, practical advice so I'm going to approach this from coaching mode. You can totally do this. It will be ok. Pack more supplies than you think you'll need so you'll feel more prepared. I can't remember if you said GI upset is an issue but the IB guard in the green box (literally just peppermint capsules) I've found to be helpful and my GI doctors recommend them. You're not traveling alone right? I found I had more confidence traveling with someone else especially longer distance than going places alone the first couple months. Empty your bag often and don't forget to enjoy watching your son! Your son is older than mine but I was worried about how having a mom with a chronic illness would affect my kids, so I talked to a psychologist and was told studies show kids that grow up with a parent with a chronic illness generally are more compassionate adults. So I hope he recognizes how much you want to be there for him.

When I had a companion, I used to kid her that in our town, I knew where every decent bathroom was in case I had to get there, for I could get home.

When traveling or in places you're not at customarily, try to be conscious of where the bathroom is and always be prepared to have your host to me completely empty before you leave, whether it's a hotel room, cruise ship, or even your house.

If you do these things, you'll feel a little more comfortable because if you start getting a little leak or start feeling uncomfortable and you need to check something, knowing where there are private places you can do that without just whipping it out right there in the restaurant, to gain confidence and make you feel a little bit more comfortable. But truthfully, being comfortable in your preparation before you leave your house or wherever you're staying for the night if you're traveling and just plain getting used to it just takes time.

Hi Storm,

I typically plan on having to empty my bag at least every hour, as my output is pretty high (really high when I'm careless). So I keep two of those plastic portable urinal jugs in my car to avoid any accidents. I also keep two large plastic soda cups in my console for 'just in case'. There's nothing worse than sitting in traffic for hours with no bathrooms in sight!! But since you said you're still on IV fluids it makes me wonder if you've been told about how to optimize hydration with an ostomy? I'm also guessing that if you're still on IV fluids you had a decent part of your small bowel removed, not just a few inches. Regardless, you should be able to wean off the IV fluids if your dietician has made you aware of how your bowels absorb fluids, and how to tailor what you drink to optimize that absorption. I'm talking about Oral Rehydration Solutions (ORS). I know to others on here I sound like a broken record on this topic, but once you get that working for you instead of against you.........you should be able to wean off IV fluids and ditch that central line. And your output will drop significantly.

I don't know what else you got going on, but if I were you I'd get in touch with a Dietician (not Nutritionist) that specializes in IBD......and they can turn you on to understanding how to make your bowels absorb liquids and prevent your bowels from pulling water from your body to dump into your bowel to dilute what you drank (because that's what they do when you don't drink the right stuff, which further dehydrates you and makes your output even more liquid). Get to understand the differences between Isotonic, Hypotonic and Hypertonic liquids and your life will get much better. Hydration is not only difficult for ostomates with significant bowel loss, but most just think they're not absorbing, and don't realize they're not only not absorbing........but that they're pulling water from their body as your bowels attempt to dilute what you've drank that isn't in the right concentration.

I've talked about this ad-nauseum on here so search the forum for "ORS" and you should find it easily. If not shoot me a note and I can point you in the right direction. There's lots of good information out there that will really help you out! But get one of those plastic urinals anyway!!

;O)

bob

Hello Bob.
Thanks for this post which, as usual, is very informative.
I would just like to say that when information is repeated on a site like this it is highly functional, in that the people asking the questions are usually not familiar with anything that has been posted before. Also, for people like me - (with lousy memories), information repeated is almost like absorbing it for the first time.
For all the important stuff that needs to be remembered at work, we are obliged to take regular 'updating' courses to keep abreast of new developments.  Over the years there have been very few  'new' things, so the courses are simply reminders of what we should know - but have probably forgotten. I, for one, am very grateful for these reminders, and so am grateful for when people like you are willing to repeat useful information for our benefit.

Keep up the good work

Best wishes

Bill  

At work 

Don't let wearing a pouch define who you are. You're not alone on this journey. Go out and enjoy yourself.

I totally understand your anxiety! The advice above is great, I just wanted to add a couple of things. Do try St. Mark's solution for oral hydration if you haven't already. I was in and out of the hospital for dehydration until I cottoned on to that idea. I add freshly squeezed lemon juice to improve the taste. Second, over time you will work out what thickens output - foodwise, oatmeal and banana are great - and there are some gel sachets you can use to thicken, which I have had some success with overnight. Good luck, we are all rooting for you!

I can relate to being new having a new ileostomy, needing IV fluids, and feeling a lot of fatigue. Have you tried Drip Drop from Amazon? It is a great oral rehydration mix to help in addition to IV's.

Also, I have always been a bit of a germ freak (LOL), but have had to get very personal with public bathroom toilets and even rest area bathrooms. I kept telling myself, "Pretend this is Urban Camping!" It worked. I travel about 5 hours to see all my doctors at the Cleveland Clinic, so I had no choice. Anyway, build in time for a shower and clothes change after every trip before doing anything else and it helps me not to feel dirty after emptying my bag several times while away from the house. Hope this helps, warm hugs!

I'm a worrier. I take twice as many supplies as I can imagine realistically needing because you won't be able to get those easily if you aren't at home. A roll or partial roll of paper towels. Small pack of wet wipes. A few "puppy pads" - I sleep on one routinely. In a hotel, I put one under the fitted sheet and one on top. A trash bag or two. An extra change of clothes. I think that it helps if your bag is supported. I like the underwear that has a pouch for the bag best, or you can use a separate pouch belt, or the smaller elastic belts. If the weight is distributed there is less stress on the seal at your stoma and it gives you more security and wear time. Sometimes I do try to eat less. I have a sense about my bowel transit time so you can think about when you might want to limit food if your health permits that.

It all gets easier and you will get less grossed out by poop as time goes on. You have a son - you likely changed diapers. If you dealt with his poop, you will be able to deal with your own. I sometimes feel that having an ileostomy is like having a young toddler. Most of the time it is all fine and contained. Sometimes they have a very leaky messy diaper that gets everywhere. You likely dealt with that. If your Crohn's was bad enough that you needed surgery, you have likely had to deal with some issues of urgency etc before. You will be able to handle this. Enjoy your trip!

Likely this is from the salt and consistent with what others have said about what liquids you are drinking and how they affect water loss. Interesting work around!

Jet... every new ostomate is a worrier... it just comes with the territory. But over time you gain confidence from having experienced pretty much everything that life can throw at you, ostomy-wise. When I first got my ostomy, I used to bring a change kit with me everywhere, as well as have spares in my cars, house, and at work. But after having a few blowouts, I realized with my high output I'd never be able to completely change my barrier when not at home. So eventually I started gathering up those extra kits and now don't even have one anywhere. I realized if I sprung a leak, the only real solution was to patch it up as best I could, throw a towel over my car seat and my stoma, and head for home. So what I carry now in my cars and at work is simply a towel and a roll of Micropore tape. As long as your barrier doesn't come completely off, and you can keep it against your body... your output will go down into the bag, thanks to gravity. So clean the blown-out edge, tape the shit out of it... and get to where you're comfortable changing your barrier. On really long trips... I tend to bring everything, including the kitchen sink.

You will find that over time... you'll care less and less about what people think of your misfortunes. Until one day you'll be so cynical that you'll be able to look back at those misfortunes and just laugh. And when you're finally free to do that... life gets good!

;O)

Thank you everyone for the very helpful answers and great advice! I do use the extenders, which really help with my feeling more secure. And I always have extra supplies and clothes when away from home. We probably won't be going to see Mac next month (he said the show is not good enough for us to make the trip) but will certainly be going in May to see him in Swan Lake. So I have a bit more time to "practice" before the big trip :-)