Summer With Chronic Illnesses And An Ileostomy

by Jen McGregor

Summer With Chronic Illnesses And An Ileostomy

Hello again SecuriCare Blog Readers! I can’t believe summer is starting already when Christmas feels like just yesterday.

I used to find summer very difficult when I first got my ileostomy as I’ve always had persistent leaks alongside regular blockages but over the last four years I’ve picked up some tips that enable me to enjoy the better weather and get the most out of the summer break from university. I thought I would share my tips for anyone who is in a similar position.

Make the Effort to Change Your Bag More Often

I find that my ileostomy leaks more when it has time for the output to breakdown the seal of my ring and baseplate of my bag. Leaks can happen up to six times per day for me so it can be annoying if I have to stop every two hours to change my bag. I’ve found that by changing before the output damages my skin, it makes the fresh bag and ring stick better as my skin isn’t weeping as much or as quickly. I also find that by treating the bag change like changing my bedding (by forcing myself to do it but always being happy that I did), I feel so much more confident in going out or socialising because I’m not as worried about leaking. Plus a quick bag change can be done in five to ten minutes but gives me up to four hours of security and that really is amazing. By sticking to this routine I’ve been able to enjoy the parks and rides in Orlando, planning stoma care around our FastPass tickets!

Stay as Hydrated as Possible

When the temperature is hot and you’re sweating, you need to drink more than just water. An electrolyte solution like Powerade, Gatorade or Pedialyte will hydrate you more efficiently. You can also make your own solution at home, but I’ve not tried that method yet. Snacking on foods with a high water content like watermelon and cucumber can also help. Ileostomates need to be extra-vigilant about hydration because not only do we lose water through urination, we also lose it through our stoma (because the small intestine isn’t the most efficient for water absorption). Being hydrated also keeps our ostomies working correctly - when I’m dehydrated, I’m far more likely to end up with a blockage.

Wear Non-Restrictive Clothing

This is pretty self-explanatory but I tend to wear a lot of clothing that is loose and floaty around my abdomen especially in summer, because in the heat my skin can perspire and render the pouch adhesive useless. This has led to a lot of leaks over the years but I’ve found that it isn’t always possible to wear clothing that is loose so when I do wear things like jeans I pop on a pair of Spanx that I cut a hole in so that my bag can pop through and be held tightly to my skin to hopefully avoid any stoma mishaps!

Make Use of Mobility Aids

I used to be uncomfortable with needing mobility aids like wheelchairs, motorised scooters and rollators because I always thought I wasn’t ‘sick enough’ for them. This prevented me from getting out more. I don’t know if it was the awkward teenager in me that was embarrassed to need help or if it was because I didn’t want to stand out, but after I finished the drug trial in 2014, my energy levels decreased and the pain worsened so one day I just asked my family to take me out to a shopping centre near my home which has a mobility centre with wheelchairs and scooters - this honestly changed everything for me. I realised that it’s okay to use a wheelchair if you need to, and I now get out all the time and even have my own chair. I’m currently waiting on the delivery of a rollator (a walker) with a seat on it so I can work on gaining stamina! Mobility Aids really can enhance your quality of life so it really is worth trying them out instead of writing them off.

Don’t Push Yourself Too Much, Use Your Energy Wisely

Remember to use your ‘spoons’ wisely and don’t overdo things because in summer you can overheat so use your mobility aids, stay in the shade and to take lots of breaks. I can find it very difficult to shower, do my hair and makeup, get dressed and get to where I need to be on time so I will rest as much as possible for the day before an event then I’ll have more energy to enjoy my plans but I do my best to avoid overbooking because I can end up feeling really unwell and be in a lot of pain for a much longer period. Overdoing it can mean that for up to a week I could be suffering from pushing myself too much, but by spacing out plans, I feel good enough to go out most days.

Update Your Medical Alert Information

This eases my anxiety more than anything. I am the biggest fan of storing medical information in your phone and I religiously update mine when my medications change, when I get a procedure and when I change my hair - so my photograph looks like me! This means that if for any reason I’m unable to advocate for myself and give first aiders my medical information, I can still get treatment safely.

All emergency service workers are trained to look for the medical information, and as it can be accessed without the need to unlock your phone this is the most important thing I carry with me. I’ve also purchased an Apple Watch Series 4 because of one key feature that I hope will give me more independence

(as right now I have severe anxiety about being alone in case I pass out in public). The feature is ‘fall detection’ and it’s amazing; if for any reason I fall and don’t tell the app that I’m alright then it will call my emergency contact or emergency services to alert them of my location. I really am excited to use this app and combined with my rollator I hope I’ll be able to go to university and shop ALONE… when I feel up to it!

 

I hope these tips can help you out in having a pain-free summer that you can fully enjoy because everyone deserves a chance to enjoy the warm weather and to get outside after a cold start to the year!

Jen McGregor

About the author

I'm Jen, I've had Crohn's Disease for more than 10 years and have a permanent ileostomy. I love all things fashion, animals and travelling. I'm also a student, a vlogger, and I have a dream to bring my adaptable clothing line CrohnieClothing to the masses.

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