I have always been guilty of over-packing, planning too far ahead, and bringing too many items "just in case." When we go on vacations (wait, what is a vacation?), my suitcase is always bulging at the seams. All through my school years I was the kid lugging around a backpack that weighed as much as a baby elephant because I brought all of my books and notebooks home "just in case."
But after my total colectomy in August 2016, I now had a very good reason to bring a few extra items with me "just in case" as I now had an ileostomy bag attached to my side. I had many worries going out into public and on trips with my ileostomy bag like "what if I have a leak?" and "what if I ruin my clothes?"- Getting caught somewhere without my ostomy supplies and needing them was one of my biggest fears. So, before my first follow-up appointment to Johns Hopkins last Fall, which is over a 5 hour drive for us, I put together my ileostomy emergency kit.
I first found a medium-sized backpack off of Poshmark for a great price and with plenty of room and pockets to store supplies. I wanted the bag to look "normal" so that if I ever needed to grab it from my car and run into a store to clean up, I would not be draw too much attention to myself. Next, it was time to fill up the emergency bag. This was a bit of an evolving process for me as I continued to add and takeaway from the bag over the next several months depending on what supplies I was currently using and what I found that I just was not needing to have in there.
Here is what was in my ileostomy emergency bag:
1) Extra ostomy bags and clips: I always made sure I had at least 3 extra, just in case I was away from home longer than I originally expected or messed up applying a bag or two.
2) Stoma paste and stoma rings: I went back and forth between the paste and the rings when I had my ilestomy, so I always packed both.
3) Latex gloves: While I never used these when I changed my bag at home, they were a necessity if I needed to change in public to keep things sanitary.
4) Grocery bags/ small trash bags: These were for putting soiled supplies or clothes in. I usually doubled-bagged things most of the time!
5) Small mirror: This came with one of my "starter" kits and I decided to keep it in my emergency bag. Sometimes, especially when applying the stoma paste, I would need a mirror to make sure I was getting it completely around the stoma.
6) Scissors: Do not forget these- especially if you use cut-to-size ostomy bags. For me, scissors were always a necessity because one of my incisions was located under where the adhesive on my bag would fall, so I would cut away some of it to avoid it sticking to the wound.
7) Extra clothes: Now, do not worry about packing an entire extra wardrobe, but I always made sure to have a pair of yoga pants, an old t-shirt, and some extra undergarments in the case that I had a leak that got onto my clothes. This gave me a great piece of mind when travelling.
8) Stoma powder: Stoma powder is great for irritated skin around the stoma and around your ostomy bag. I always relied on it to sooth my irritated skin, so it was a must in my emergency bag.
9) Baby wipes and napkins: There are probably pretty self-explanatory, but you cannot always count on having access to wipes or even toilet paper if you need to made a change on the go. There are many different kinds of small packs of wipes, tissues, and napkins that are easy to throw in your emergency bag and will not take up much room.
10) Skin protectant/ adhesive remover: I always relied on these two items to help take my bag off without irritating my sensitive skin and protecting my skin before putting the bag back on. For this reason, I always kept at least 10 little single packs of each in my emergency bag.
I found that it is so easy to forget the little things like skin protectant and bag clips (if you use them) when in a hurry. My emergency kit not only came in handy on normal outings and trips, but during my hospital stays as well. There were many times that I experienced a leak or simply needed to change my bag and instead of using the supplies that the hospital had and risking not having access to the stoma paste or rings or another staple item, I had all of my tried and trusted supplies with me.
Now, fast forward 9 months to my reversal surgery in May 2017. I no longer needed my ostomy supplies, but I would now need to transition my emergency kit into one that catered to my J-Pouch.
Just as with my ostomy emergency kit, my J-pouch emergency kit has been an ongoing work-in-progress over the last couple of months since my reversal.
Using the same bag as my emergency ostomy kit, here is what I now keep in my j-pouch emergency kit:
1) Preparation H Totables Wipes: I refuse to go anywhere without these! At home, I use full packs, but when going out or travelling, carrying around a full pack of wipes can be difficult. The Preparation H Totables Wipes come in a pack of 10 individually wrapped packets that you can easily throw in your purse, emergency bag, or pocket. The wipes have witch hazel and aloe, making them a j-poucher's best friend.
2) Aquaphor: There are a lot of creams on the market to help those with j-pouches to deal with the dreaded "butt burn" and irritation, but the larger tubes are not always travel friendly. One of my favorite creams to keep in my emergency bag is the small size of Aquaphor. It not only works wonders when I need it on-the-go, but it is small and does not take up too much space in my emergency kit or purse. For longer trips or times when I think I may need something stronger, I will go ahead and throw a tube of Calmoseptine (highly, highly recommend) in my emergency kit just in case.
3) Immodium: I try not to rely on many medicines to help control my output, but rather control it with the food that I eat. With that being said, sometimes it is necessary to take something to avoid dehydration if my output is higher than usual. For this reason I keep a few packs of Immodium gel capsules (better than the liquid as far as getting it down) into my emergency kit. These are great to have when travelling.
4) Snack/ Gatorade/ Hydration Packets: These are some of the most important items in my j-pouch emergency kit. A year of illness and surgeries has left me very underweight and malnourished and I have found out the hard way that when combined with hunger and dehydration, I am left very weak, lightheaded, nauseous, and in pain. To help curb these symptoms in the case that I forget to bring a snack with me, I always keep some crackers, a small bottle of Gatorade, and several packets of Drip Drop Hydration Powder in my emergency kit. The hydration powder can be mixed with a bottle or cup of water.
5) Extra clothes: When transitioning my emergency bag to cater to my j-pouch I kept the same pair of extra clothes in it just in case.
6) Sanitary pads/ Disposable undergarments: Now, I know these are not the most glamorous, but especially in the first couple of months after my reversal, incontinence was a large worry of mine as I began training my j-pouch. I like to keep several sanitary pads and a pair or two of disposable undergarments for use in an emergency. I have not had to reach for these yet, but it gives me a great piece of mind knowing that I have them in the case that I need them.
With both an ileostomy and a j-pouch, it can be a daunting to leave the house sometimes in fear of what could happen, but getting into the habit of bringing an emergency bag with you where ever you go (I usually just leave mine in my car), can help to alleviate some of your worries.
Having an emergency kit will not stop an accident from happening, but it will help you deal with it in a more calm, comfortable, and discrete way.
Your emergency kit will also be ever-changing and that is completely OK! Mine has followed me through a scary first couple of months with my new ileostomy, to a second surgery and loop ileostomy, and finally to my reversal surgery and j-pouch.
Do you have an emergency kit? What are your staples?
"Expect nothing and appreciate everything."
- Kristen