NB: This post was also written to be published on abiggerlife.com
This week marks 4 years since I had surgery to remove my large bowel and to live life with a permanent ileostomy due to bowel cancer. I was 22, and until only a couple of months prior I had no idea what an ileostomy was; I naively thought that anyone living with a stoma had a colostomy and didn’t realise that wasn’t the case.
So you can imagine how much I had to learn and understandably was very overwhelmed with information.
One thing I struggled knowing was what exactly it were that I needed to not only see me through my surgery but subsequent time recovering at home and in hospital.
So I thought I would share with you my 10 must-haves on surviving the early days of ostomy life!
I wished I knew these when my life with a stoma began 4 years ago...
#1. A hairdryer:
Do not underestimate the importance of a good seal around your ostomy appliance. This is usually achieved by heating up the base plate or wafer. Sometimes I find sticking under my breast or armpit can suffice, but I know in winter I struggle with body heat. Learn from my mistake and avoid having to send your other half out at almost midnight searching for somewhere that sold a hairdryer (no joke, this is what happened), thankfully there was a chemist open and voila my bag was finally sticking. I now take my hairdryer everywhere with me, even if it is only going away for the weekend!
p.s It is also very helpful at drying your stoma bag after a shower if you aren’t needing to do a change and require it to be dry... we also use ours in winter to quickly warm up our bed before jumping in.
#2. Invest in some supportive garments:
Not only can wearing supportive underwear help to support your stomach after surgery and help with preventing a hernia, it can also make you feel more secure and safe when you are adjusting to wearing a bag and having it sit against your skin. I found wearing high waisted briefs helped me to feel secure with my bag tucked under my undies. I even found some sites online that made underwear specifically for Ostomates like Vanilla Blush or White Rose Collection (to name a couple).
With the help from my Stoma Nurse I was able to order some hernia belts from some of the companies/manufacturers. She helped to measure me and choose the right one to suit my body and stoma.
When you’re an ostomate and have had part of your bowel (intestine) removed, you are at risk of becoming dehydrated and lacking in certain vitamins/minerals. Not only will you need to drink more glasses of water, but you will also need to be replenishing the electrolytes lost through your output. I met with a dietician and nutritionist who told me to have some sports energy drinks and hydrolyte on hand and to have one a day. I look for the specials and will buy a few bottles at a time, but I also buy the powder to add to water and reuse the bottles that way. It is always important to consult with your stoma nurse or dietician or nutritionist to determine what will be best for you, as your body will need to replenish the important stuff that you’re losing.
In summer if you sweat more or if you are unwell with a fever or a case of gastro, you may need to increase your electrolyte replacement drinks to avoid dehydration. Again talk with your healthcare professionals on what works best for your situation.
I also find the enery drinks can also help to thicken output as well
#4. Metamucil, Marshmallows, Jelly Beans and Peanut Butter:
These are a staple to have on hand, especially if you tend to have watery output as these tend to help your output thicken. Chat with your dietician or stoma nurse to see what would work best for you. I keep a pack of jellybeans in my stoma kit, just in case I do need some urgently.
hot tip: I take a few marshmallows half an hour before a bag change, I find it helps to manage my output a little better while I am doing a bag change.
#5. Gastro stop or loperamide:
My ileostomy output has always been all over the place, but I was advised (by my stoma nurse) early into my life as an ostomate to have some supply on me. Sometimes my output can be so watery or too much output and need it to slow down or I might be unwell, I take a couple of tablets to see if things begin to settle and thicken. It is important to seek advice on if this is right for yourself by your stoma nurse or to determine how much you should be taking as you don’t want to risk being blocked up either. I have a supply of tablets in my handbag and in my stoma kit (for when I am out and about) and I also have some in the bathroom.
#6. Linen and mattress protection:
My stoma tends to leak often and sometimes I will wake up with my bag having leaked. I found it important to have a waterproof mattress protector to protect my mattress. As an added measure of peace of mind for myself I also sleep on a “Kylie”, it is this padded with a rubber waterproof underlay and any leaks I do have don’t go through to my bed. It is really difficult to change my sheets and mattress protector on my own as my mattress is so heavy, so if it is soiled I just put it in the wash and put a new one on the bed ready for next time I go to bed. I found these at a home care aid store locally, or your nurse might be able to help source one for you.
My bed with a kylie
#7. Stoma supply storage:
Where or how you choose to do your stoma appliance change is up to you and differs on personal preference. For myself, I like to sit on the toilet when doing a change. I found a craft trolley with drawers and have it set up in front of the toilet so I can easily grab things. A friend I know likes to stand near her vanity basin and in her cupboard is her supplies for easy reach and use. It is important to have everything somewhat organised, as when you are mid change it is frustrating to search for something you need, so I have plenty of stock in easy reach and ready to go.
If you want to read a post I wrote on stoma supply storage inspiration, click here!
#8. Wet wipes or Chux cloths:
I know it is personal preference how you might choose to clean your stoma when doing an appliance change. Wet wipes (like baby wipes) are handy for when you are out and about you might be forced to change your stoma in public, and without access to water these are a lifesaver! At home you might prefer to fill up a bowl or basin with warm water and use chux cloths to clean your skin ready for a fresh change. I tried different methods at home to see what I was most comfortable with until I found what worked best for me. I also make sure I have a pack of baby wipes in my stoma kit too.
#9. Scented garbage bags:
When I was new to life with an ostomy I would be overwhelmed each time I had to do a stoma appliance change. A few months after being home from hospital, my husband thought he would help by bringing home scented garbage bags from the store for me to try and see if it helped with the overwhelm of the smell. I have since used these and they really help a lot. I have a roll in my stoma kit I take when leaving the house and another for using at home.
Here is a post I wrote about choosing to use scented garbage bags and adding them to my stoma kit.
#10. Room spray or freshener:
I am saving the best kept secret for last, but you can thank me later! I was always so embarrassed when using public toilets and the stench of my output, that I started carrying around a can of toilet odourising spray with me in my handbag…. it only drew more attention to myself. I searched for compact sprays or spritzers that I can carry in my handbag or stoma kit and spray before I empty my bag or do a change. I found mine from scentsy or Poopouri but friends have found theirs from chemists or stores that sell scented wares. I take mine everywhere and is a lot more discreet.
Here is a little post I wrote a while ago along with the room spray I use.
See! It fits discreetly inside my kit
I don’t want to overwhelm you with too much information (I could be here for days sharing my wealth of knowledge), but these are the 10 best tips I have for managing the early days of being an ostomate.
You will be sore for a while so listen to your body if it needs to heal and rest, as you have been through a massive ordeal, even mentally/emotionally/spiritually. I wished there were sites like a biggerlife.com when I became an ostomate, it really would have helped me to adjust to life as an ostomate knowing there is lived advice to help me on my way.