By Sarah Sorge
I was diagnosed with Crohn’s Disease over 20 years ago and recently had surgery to remove my colon, so I now have a permanent ostomy. It was an overwhelming process leading up to and even after the surgery. There have been a lot of tears, anger and depression. I had to go through the death and dying process of losing my colon and closing that chapter of my life.
Through this process I had to learn at great deal and most of it was by trial and error, lots of research and too any phone calls to count. I did a lot of research leading up to my surgery, but it truly does not prepare you for the end results.
List of Things to Know:
I have compiled a list of things that I have encountered that were not expected or just not thought of going into this chapter of my life. I hope this list will help you and others become better prepared for the aftermath of ostomy surgery.
1. Ask questions!
I keep a journal to write things down as they pop into my head. I actually had my list with me to ask questions before I went into surgery. I still have things pop up and wish I had asked before the surgery, such as:
- Where is the stoma going to be? (wish mine was a little lower)
- How long is the incision?
- Reliable contacts?
- How long is the actual healing process?
- Any special care for the rectum skin graft?
- 100’s of other questions
2. The manufacturers are going to be your new best friend until you find the right combination of appliances.
I had a hard time getting Stoma nurses to return my call and the surgeon and Gastro’s office were not as much help as I had hoped.
3. Get samples!
Call the manufacturer, Coloplast, MSC direct, etc. and ask for samples. Tell them your issues and they will work with you until you find the right fit and before you order too much.
4. Do not order 3 month supply until you know what will work.
5. Once you get a good fit, be sure to ask the supplier what information they need.
They will need:
- Prescription sent to them from your doctor
- Payments information
- Physical address
I learned the hard way about this part.
6. Odds are that your bag will fail.
It’s ok; this is normal, frustrating, but normal. Just breathe and move on. It took 3 months until I finally found the right combination for me. Again, thank goodness for the manufacturer reps.
7. Your skin will get irritated.
Since you are putting adhesive directly to your skin, and many times multiple layers and types, you skin will get irritated, blistered and peel off. It does heal and becomes less sensitive. There are products to help with the skin issues, just ask the manufacturer rep. I have noticed the skin under the bag is a different texture now and will still itch from time to time, but all in all I hardly notice it anymore and it’s only been 5 months.
8. Keep a change of clothes with you at all times.
I carry a backpack in the car and it includes:
- 2 outfits
- 2 pairs of underwear
- Socks (learned that the hard way)
- Wet wipes
- Extra Ostomy bags
- Stoma care items
- Plastics bags (trash and dirty clothes)
- Paper towels
9. Clothes will fit differently.
Clothes are now hit or miss item. Since the ostomy is typically just below your waist line, clothes make feel weird or just not look right anymore. I looked at it as an excuse to go shopping.
10. The bag is really not that noticeable.
I was afraid that everyone could see my bag and it made me feel acquired at first, but in actuality, people don’t notice it at all.
11. Be sure to talk to and explain your situation to your children.
They understand way more than you think they do.
12. Your life is not over or limited by your bag.
I have not run across anything I cannot do because of the bag. In fact it is the opposite. I am not in the restroom every 30 minutes and don’t have to find the restroom everywhere I go. That’s been a nice change.
13. Sex is still sex.
I had/have more issues with the bag than my husband does. I simply fold it over, so I cannot see the contents. I have found a special line of covers and lingerie on line to help cover the bag for intimacy.
14. You can still bathe as usual.
I enjoy a hot bath at night and a shower in the morning. I wasn’t able to take baths after my surgery because if incision issue and you should not soak in a tub until your wound is healed and if you have a complete removal, your rectum graft. I also like to take my bag off and shower without it on. I just enjoy the feeling of water on the skin under the bag. It can get messy, so not recommended to do this in the bath tub.
15. Get organized.
There is nothing worse than trying to change your appliance and you can’t find the scissors.
16. Be open and honest
People are going to ask questions when they find out. Answer them openly and honestly. Educating people about your situation is a bonus for you and them. It helps with understanding the situation and can even lead to options and outlets you never knew about.
I hope that you have found this article to be helpful. I can go on and on, but I feel this is a good start. Just remember you are not alone and there is help out there for every situation.
Smile and wave, makes them wonder what you are up to.