Living Another Normal

It seemed like I had been in the hospital for a long time and yet, not long enough.  I really wanted to go home and sleep in my own bed surrounded by my own things and with a much better chance of quietness.  But I was a little apprehensive to go home.

I had this ileostomy bag to care for now.  I would have to empty it and change it when needed without the assistance and supervision of the medical staff that had been with me.  I would have to start ordering my own supplies.  I'd have to start living with this outside of the hospital.  I felt unequipped for this.  It's like how I felt about taking my newborn son home from the hospital, but to a lesser degree.  (Taking care of a little human is way more challenging.)

The what-ifs played games in my head.  Mostly, I heard "what if I can't care for this ostomy appliance correctly, and it leaks often?  Who is going to help me figure it out?"  I had to realize that I didn't know it all yet, and I couldn't.  I still don't.  But I was well prepared.  My confidence was just lacking a bit.  I could, and would, deal with this new way of life.  But not on my own.

The hospital sent me home with a small amount of ostomy supplies until I could get set up with a company to provide me with the items I needed.  The hospital provision included the clear ostomy bags they use to be able to see what the patient's output looks like in color and consistency.  Those were not my preferred type.  I didn't really want to see my output that much.  I was glad to use those up.

As far as getting my supplies, I started out using a local company to get my supplies and after a while I found ordering online to be my option of choice and went with a company who provided that option.  That way I'd have the item reorder number in the order history of my account and could type in the amount I needed and reorder easily.

Fortunately, in this day and time, the internet is available.  Although it can provide too much information sometimes, it was of help when looking up things ostomy related.  There are people who are comfortable enough to share their experiences with changing their ostomy online.  That can be a big help to a new ostomate who just needs to see how it's done on someone who has actually been there and done that.

Also available is phone access which I used to make an appointment with the Wound Care Ostomy Nurses not long after I got home.  My fears of my wafer leaking and not being able to figure out why were real.  I'd put on a new ostomy appliance with the help of either of my parents as I was still sore from surgery (having support from others who can bend and see what's what was great) and scared to go it alone.  Sometimes we'd have success.  But mostly we seemed to have leaks.  Success in my book would be the wafer staying in tack for 3 full days (now more like 5 days).  In the beginning though it was more like 24 hours or less.  This was so frustrating.  My confidence in the decision of surgery was fading.  My skin was getting sore, red, and irritated like bad diaper rash due to the frequent exposure of stool and moisture as well as the frequent removal of an adhesive substance.  And around the stoma, I'd have this paste (basically a caulking type substance) that would come off easily with the removal of the wafer after about three days wear, but with 24 hours or less, it was still fresh and rather sticky and gooey.  It was a pain to try and remove and would further irritate my skin.

Upon examination by the ostomy nurse, and after explaining the complications I was having and providing the supply list of items I was using during the changing process, she quickly knew what my biggest issue was.  I had been using a cleanser that was given to me at the hospital to use around the stoma.  She took the cleanser and sprayed it on the back of her hand and lets it dry.  She then took a clear piece of Scotch tape and places that over the sprayed area.  The tape stuck to the area very poorly.  Although the cleanser may have been good for cleansing, it wasn't helpful in allowing me to have a good seal around my stoma.  The wafer would pull away from the skin and cause leaks.  She said to just use warm water and a clean cloth to keep the area clean.  No soaps neccessary.  That seemed unclean to me.  But when it comes to changing my ostomy appliance, my biggest lesson I learned is that less is more.

Eventually the routine of changing my ostomy appliance fell into place, and I even became confident enough to go at it alone.  I learned what worked for me and what didn't as far as products and procedures go.  I learned what foods didn't agree with me; pizza and spaghetti were back in my life!  However, bubble gum and chewing gum produce too much air and would make the ostomy bag balloon.  That was a strange experience.  There really wasn't that many limitations to what I couldn't eat (besides chili causes too much stomach pain so I don't eat that but in very very small amounts, if at all).  The limitations are more on how I eat; not eating a whole container of almonds, steering clear of apple skin (which I don't like much anyway), chewing well is big.  Getting that food in as smooth a form as possible is important to prevent obstructions which could lead further sickness, hospital stays, and maybe another surgery to relieve the obstruction.  I also try to eat my last big meal of the day by 6 pm on the night I plan to change.  I like to change before bedtime and this allows the food to digest well before me changing to keep the stoma from being so active and causing a mess.


Life didn't go back to pre-Crohn's Disease.  It couldn't.  My colon was gone.  I have this ostomy appliance to wear daily and keep an eye on.  But it gave me back a life to live without prednisone and medications that didn't help.