I have an ileostomy and would like to travel by plane. Unfortunately someone I know whom also had an ileostomy told me not to travel by plane. Why do you think?

@Jeanne

Hi Jeanne, 

I don't know why they would say that. I've been on planes dozens of times without any trouble. 

I have a series on travel if you're interested in learning more: https://www.veganostomy.ca/ostomy-travel/

Am not a frequent flyer but any time I have can’t say it causes any problems, Even when being searched at security I have always mentioned I have an ostomy and the staff have been very discreet and polite. I wouldn’t let it put you of any travel plans 👍

Hi everyone,

I got some good news today! My doctor told me today that they want to set a date in early August to remove the cancerous tumor in my colon, and switch my colostomy to an ileostomy until my colon is fully healed. That switch makes me nervous!

Will I have to use different wafers and pouches than I did with my my colostomy? I have had a colostomy for 5 months and finally am used to it, so I am not excited to have to re-learn a whole new system.

I also have heard that an ileostomy has to be emptied much more often than colostomies. Every year in late September I meet up with several of my friends for a long girls' weekend, and we sometimes go to conventions. The days at the conventions run long and I am afraid of constantly having to run to the bathroom and missing anything! Or that the bag will be constantly full of liquid and bulging under my clothes...am I worrying to much?

Hi LiL stomie. Firstly that’s great news and secondly perfectly normal to be nervous. I am an Ileo and it’s nothing to fear. The appliances for both are the same, the output yes will be more liquid and moves some more. I can see why you think it’s going to be a pain always emptying but it won’t! I would empty roughly about 6/7 times a day. Output as I am you know can be controlled by different foods ie some thicken some loosen. Pancaking not as big a problem. I hope this plus other replies will help 👍

@lil-stomie

Hi Lil

Looks like I'm going for a similar operation but sooner that you hopefully in the next couple of weeks. With the Covid problems in local hospital the medics are trying to schedule at another nearby. (Here in the UK they have isolated some hospitals for the infection reasons).

So maybe I can try to let you know how it goes, fully understand your nervousness.

I am concerned of the extra risk at this time but they believe to stand the chance of the best outcome it outweighs the risk.

Hope you schedule is not delay because of the covid risk, well worth asking the question. I know a lot of operations have been put back?

Anyway good luck and remember ask all the question you want. I know some people wish not to know because your on this forum, I'm guessing your more in the group knowledge is power, also surgeon are humans a good relationship helps loads- your not a case but an unique individual and a lot of life yet to live

@chrisandbagpus

THhank you for your reply! I agree with you that knowledge is power!

I am not thinking that there will be much delay in my surgery. I live in Maine and things are not as bad here as more crowded states. My friend just had surgery on her ankle the other day, and I feel like if that was not delayed, then things are not so dire. (We live in adjacent communities). In fact, I live a 3 minute walk from the biggest hospital in Maine!

ALso, I see you are in the UK...I have relatives in Inverness and Liverpool!

Best,

Lil Stomie

@lil-stomie

I'm much more south near the villages famous for the "Cheddar cheese" and the strawberries that won't be going to Wimbledon (Tennis) this year and Glastonbury. A very beautiful part of the country fantastic walks this time of year.

I'll try to keep you posted kind of leading the way for you 8-) 

Posted by: @lil-stomie

Will I have to use different wafers and pouches than I did with my my colostomy? I have had a colostomy for 5 months and finally am used to it, so I am not excited to have to re-learn a whole new system.

I also have heard that an ileostomy has to be emptied much more often than colostomies.

Generally speaking, the bag and wafer will be the same, however, you might find that "extended wear" wafers will handle the liquid output better and for a longer wear time. You can likely find one in the same wafer you already use without switching brands or a different product line. 

As for emptying, many colostomates may empty their bag from twice a day to twice a week, while ileostomates can empty between 5-12 times a day - but.....

The amount of output will really depend on how much you drink, how much you eat, how often you eat, time past since your surgery, etc. Expect the first year to be an adjustment period, but you'll adjust with experience.

Hi Lil Stomie,

I think you will do great with an ileostomy. You have the advantage of having experienced life with an ostomy and that is the biggest part of the battle, right?

With an ileostomy, yes you will have to empty more often. You will also have to drink lots of water because it is easy to get dehydrated with an ileostomy. In my experience, I just empty my bag when I got to the bathroom to pee. I don’t have to empty my bag every time, but you can plan to do it at the same time and it won’t feel like an increased number of trips to the bathroom. 

Eric and John are right. So much of it depends on what you eat and how often. You will start to get a feel for how long it takes food to go through you. Some foods, for me, go much faster than others. And different foods affect the consistency of the output in different ways. 

Good luck Lil Stomie, and have a wonderful time on your girls weekend! 

Lil, I think you are gettiing a Loop ileostomy, I've read where they can be a little more trouble than a permanent ileostomy.  luckily its temporary.

@john68

Thank you, your response reassures me...I will definitely watch my diet, especially  when traveling! Maybe liquid output will be less messy than the colostomy can sometimes be lol. 
And wow I will NOT miss the pancaking!

Best,

Lil Stomie

@dogtalkerer

Oh, you may have a point there! I will definitely ask my doctor about this. She did tell me the ileostomy is temporary until my colon is fully healed. So I remain optimistic! Thank you very much for the tip!

Best,

Lil Stomie

@squeakyandliza

Your tips are helpful--I will definitely keep in mind the tip about watching my diet and emptying the bag whenever I use the bathroom!

And thank you for the well wishes! I'm keeping fingers crossed for a great weekend this year. My friends have all been pulling for me and keeping up with my progress, which helps a lot.

Best,

Lil Stomie

@veganostomy

That is good to hear, that I don't want to have to change to totally different products...I will keep that in mind about extended wear wafers, because since I switched to a two piece bag and started using a wafer as well, it has worked out great. No more leaks! 

I am gonna watch your diet videos on ileostomy and read the posts here! I was a vegetarian for 20 years, but in the past few years I have become a flexitarian. I sometimes go a few weeks without eating meat (I still LOVE veggie burgers and tofu), then have the odd beef burger or chicken curry.

I am sure I will figure out the diet thing with the help of this site and my doctors! Fingers crossed...

Thanks again!

Best regards,

Lil Stomie

I have had trouble over long plane rides (e.g. 30 hours of airports and planes: overnight flights are the worst because of the line to use the bathroom in the morning and how full your bag can be... I set an alarm for every two hours with headphones to wake me up so that I may use the washroom, and I still have had three "accidents" where my bag fails. There is nothing as panic-inducing as the sudden feeling of a flush of warm liquid down your legs, into your shoes, and onto the plane floor. I usually rudely shove my way through the line saying, "Emergency!" and then hit the call button and get the flight attendant to bring me a bag I packed with a change of clothes. The worst part is the sheer embarrassment of trying to explain to the flight attendants what happened and have them have to mop up your mess while being stuck with the other passengers for another hour or two...

I have an ileostomy and find it extremely difficult to stay hydrated and nourished. I literally have to empty my bag between 20 - 30 times a day. If I'm eating / drinking water, my ileostomy "burps" minutes later and can need two empties while watching a 30 minute TV show. Sometimes, I am heading back from the bathroom, and finding myself turning right back around and heading back. It is so frustrating: I feel like I spent nearly a tenth of my life going to / from toilets. and it makes work very difficult, especially in meetings that last an hour or more.

My output is always extremely liquid, probably because I drink about 16 glasses of water a day in an attempt to stay hydrated. I feel frequent thirst that never fully goes away.

I'm on my second ostomy now, as of a year and four months ago. My first one was 11 years ago but due to severe Crohn's inflammation, it had to be relocated and now my small intestine is getting quite short.

Advice to slow this puppy down? Raw cheese seems to thicken it, as do potatoes, but those are the only two foods that help instead of make things worse.

Hi Vorpal, 

Thank you for sharing your experiences. It certainly sounds like a challenge. 

20-30 times a day is extremely frequent, even for an ileostomy.

Since you mentioned that have a short bowel, I suggest trying to connect with others with short bowel syndrome (SBS) to see if they have any tips on how to better manage the frequency you experience. 

I also suggest speaking with your stoma nurse, surgeon, or GI doctor as medication may be a more appropriate option to slow things down.  

I wish you all the best.

Not sure if this might help? as I have a colostomy.

Could it be that drinking a lot of water affect the ability of what's left, of your intestines to absorbing the water and pass to the kidneys - what are the functionality of your bladder and kidneys? 

I have always found that plain water over stimulates my system to urinate quicker than if I drink other drinks. I say that for me my drinks need some nutrients in the water, for example melon or juices do not have the same effect as water!

We have all discussed on here foods like chia seeds, linseeds supplements like mucil, slippery elm and pysillium. on this part I ask the other ileostomates to add their thoughts and experiences as its not my experience.

20 to 30 times a day is a nightmare lets see if addition to what Eric has given as good advice

you must be quite worn out by the many trips to the bathroom that does not help the kidneys function any.

@vorpal...Hi there.  I have short  bowel syndrome & have gone through what you are going thru.  If your not diabetic,   I think the reason your feeling so thirsty is that you are flushing your electrolytes right into the toilet. Cut back on drinking so much water.  Sixteen cups of water a day is a bit excessive. You may be confusing your guts a little. 

My first concern about your thirst is Diabetes. Have you talked to your doctor without telling him you think its your guts?   I had at times drank as much as you & my output puts out just as much as I put in.  When I am  putting out so much fluids, is when I actually back off on drinking. Try cutting it in half. Give your system time to catch up & then also see how your thirst is. 

One way to tell of your drinking to much is if your urine is yellow or on the clear side. It should be yellow.  Your kidneys help wash your body & blood of toxins & into the bladder & into the toilet. Clearer meant to me that I was drinking too many fluids. Try cutting back. Your thirst may settle as well as the fluids are no longer being rushed out by more fluids. 

I hope this makes sense. I tried answering earlier but had an eye issue & had to try again this A.M.  When you feel thirsty like that add some V8 Juice or...& sprinkle salt in it. It helps you absorb the fluids not flush them out.  Also, if  your not Vegan, make a pot of tapioca pudding. It has helped slow things down for me & also helps provide a full feeling when  I am putting out a lot of fluid even when I'm not drinking too much. 

While your cutting back, if still thirsty try sucking a candy, tic tac, ...sugar free if your diabetic. 

I hope this helps. Keep in touch. Be Well! 

Linda