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Hello,

I am writing to see if maybe talking I can get rid of a source of anxiety for me lately. 

I recently took a trip with my new partner to the beach in Europe, Im in stage 2 with loop ileostomy, and in 10 days I have my takedown.

My main issue is that we enjoy going to remote beaches, with little or no people, and I found myself on the situation of having no real bathroom many times, for hours. Having a picnic on the beach, or leaving after lunch. 
And as we know the bag needs to be emptied after you eat, and for the next hours, and im sure the Jpouch will too. 
This brought a few uncomfortable situations for me, since I needed to find an isolated spot and empty my bag many times behind a bush or something. 

A bag is not even that much of a big deal since you just empty it, clean the opening with any paper and off you go. But with a Jpouch, is not so easy, your butt skin is sensitive, you often need to clean carefully, and i imagine pooping half liquid output in the bushes is not a fun experience.

So my question is, am I doomed to just go to beaches, or hikes, or parks where theres a bunch of people and hence bathrooms? or not eating? or is there a way around this?

It may sound like a silly issue if you compare it with many of the life threatening situations we go through, but is been really making me sad thinking that I will need to be near a bathroom for the rest of my life. 

Thank you to every who takes the time to read this

Original Post
@sofi posted:

Hello,
I am writing to see if maybe talking I can get rid of a source of anxiety.

Not a silly question at all.

I’ve had my J pouch nearly 6 years and I use the toilet like everyone else; no special diet, don’t need to stop eating before visiting the beach, no butt burn, sensitive skin issues or special cleansing routine either; also, I use regular toilet paper.

Within a few days of my Takedown, I only had 3 to 4 BMs per day, not every day, it varies and its remained pretty much the same ever since.
Never less than 2 and very, very, very rarely 5 or more per day.

Also, there’s hours and hours between BMs, more often than not, up to 7 hours and should I feel the need to go, I can easily hold off the sensation without even thinking about it, making me feel uncomfortable or playing on mind and, I can use the toilet in my own time.

I’ve never experienced any urgency, night-time toilet visits or the need to evacuate behind a bush on the beach.

Last edited by strange

@strange you are a breath of fresh air!!! between all the awful things you read can happen is good to see a different POV.
I was very lucky on my surgeries and output experience also (for now) ; and I only hope it continues like this so I have an experience like yours, thanks for the encouraging words, its good to see not everyone has the problems I am dreading.
Hopefully in a few months when things have settled from surgery ill share my story and it will be good. 
Happy for you that in an unlucky situation, you are lucky.  

The key is the lack of urgency. Unlike a plastic bag a healthy J-pouch enables you to choose when to use the toilet. As CTB23 points out, you may need some preparation for an extended trip without convenient bathrooms. Before I get on a boat to go scuba diving, for example, I also empty my pouch and take some Lomotil. Even if the boat has a marine head I’ve always been able to avoid using it.

Amazing, as @Scott F I also enjoy boating and snorkeling and im used to being in nature and not worry about bathrooms, so this has been an issue, being a girl when the pouch gets filled up I feel self conscious (especially on a swimsuit) so I needed to empty what I think it was more often than it would be with a healthy pouch.. Also a loop ileostomy tends to be more runny. 

Thank you also @CTB23 for that input, sounds like a great day indeed, I also enjoy riding bikes, im happy for you.

 

@sofi posted:

@strange you are a breath of fresh air!!! between all the awful things you read can happen is good to see a different POV.
I was very lucky on my surgeries and output experience also (for now) ; and I only hope it continues like this so I have an experience like yours, thanks for the encouraging words, its good to see not everyone has the problems I am dreading.
Hopefully in a few months when things have settled from surgery ill share my story and it will be good. 
Happy for you that in an unlucky situation, you are lucky.  

Also, as a precaution, get yourself a tube of ilex paste; it can be applied around the stoma to prevent and treat skin erosion due to leakage and can also be applied to the other end, so to speak, to prevent and treat butt burn.

“It’s preferable to always have a tube of ilex and not need it; than need it and not have it.“

It can also be applied internally to treat anal fissures; although it states on the packaging for External Use Only.

Products of a similar nature are also available and during the 9½ years with a stoma; I’ve used most, if not all; and the ilex paste provided the best results.

@strange Thanks for the advice! I am not in the states so I will see what i can find in latin america. I've used the stomadhesive as protector for the skin of the loop ileostomy that keeps insisting on dripping under the flange on my skin, and works perfect, this ilex may be better but unavailable. Will talk to my Dr. Thank you!

I've had a similarly good surgical outcome. I usually empty my pouch in the morning, then don't need to until 5:00 or 6:00 at night, and sometimes longer, and then before bed. I do overnight backpacking trips in the Sierras, with no bathrooms at all, and have had no problems (I dig holes). I carry a portable bidet (Brondell brand) on my hiking trips, and it keeps me fresh and clean! 

Good luck with your takedown! 

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