My Doctor had just come in the room and woke me.
He said "the surgery was a success we removed the entire tumor and the margins looked clean" I was confused at this point.
It was 6:00 in the morning and I was in my room at Massachusetts General Hospital.
I fell back asleep and woke up about 1 hour later.
At this point things started to become clear.
I was not in pain but my stomach was so uncomfortable.
I was afraid to look under my hospital gown.
I decided it could wait.
I had other things to deal with I had to recover from this surgery and start chemo in six weeks.
The nurse came in later in the morning to check on my wounds from surgery and check to see how my stoma looked.
The surgery I had the previous day was to remove a tumor which included a bowel resection and build an ileostomy.
The nurse wanted me to look at the stoma and to begin to get used to my new body.
I now had a pouch on the outside of my body collecting waste.
It was all too much to deal with.
Two months previous I was running, doing yoga and weights to try to get rid of the five pounds I could not lose since the birth of my son.
This put all of that in perspective.
I told the nurse I did not want to see it.
She cleansed the stoma and changed the pouch.
She told me the stoma was swollen and would change in size dramatically over the next couple of months.
I did not listen, I could not.
The next day the nurse came to check on me.
She was not going to change the pouch if it was on securely.
Removing the pouch to often can cause skin irritation.
This can be a major complication of ostomies.
My body was healing and I was growing stronger physically ever day.
Six days after my surgery I was told I could go home the next day.
However, in order to do so I needed to deal with the ileostomy and learn how to change the pouch or appliance as the nurse called it.
Six days after surgery and just because I wanted to go home I looked down.
I was horrified and cried.
How was I ever going to be able to change the pouch.
I watched the nurse as she showed me step by step how to cleanse the stoma, cut the right size wafer( where the pouch attaches) and apply the bag.
She wanted me to do it and I said I was not feeling well.
I was allowed to go home as planned.
I was sent home with my ostomy supplies and a scheduled visit from the visiting nurse.
I was home for three days when the visiting nurse arrived.
She had patience with me as I cried.
I was not ready to deal with the ostomy.
She let this go for a few visits.
Around her third visit, or three weeks post surgery, came tough love.
The nurse informed me insurance was not going to pay for any more visits and I was on my own after today.
She oversaw me as I clumsily went through the steps and changed my ostomy pouch for the first time.
I was now on to the next phase.
I was capable for keeping the stoma cleansed and the skin healthy now I needed to deal with the body image problems.
This was the hard part.
My husband will never admit it, but he was afraid of the ostomy.
If I needed to change the appliance he would run out of the room.
His behavior gave me a sense of something is wrong with me.
It was summer time and I would not wear a bathing suit or shorts.
I was very jealous of what I perceived as normal people swimming at the beach.
I had problems I needed to deal with.
I started to reach out on-line to the ostomy community.
I read countless stories of people with cancer or crohn's disease dealing with ostomies.
I discovered people with ostomies can swim, run marathons, and do anything.
I became a student of the ostomy.
It helped.
I began to wear shorts and even exercise.
I was transforming or rather becoming myself.
However, my husband was not.
I believe the ostomy is much like the do not ask do not tell.
People cannot imagine having one and do not want to speak about it.
That is fine for most friends, but when you want intimacy it is not OK.
I broke down and confronted my husband.
I made him admit he thought it was ugly.
It was huge.
I was mad, but how could I be mad if I thought the same thing a few short months ago.
We began to communicate.
He needed to be as comfortable with the ostomy as me.
We began with him staying in the room while I changed the pouch.
I explained what the wipe, powder and wafer was all about.
It was working.
My husband had a sense that this was not bad and in his artistic mind interesting.
It was a great start to an awareness of my sense of self, along with his fear of my body and his greater fear of my death from cancer and how the ostomy fit in and saved my life.
The ostomy was a good thing! Tips: 1.
Be patient with yourself 2.
Seek help.
Massachusetts General along with other hospitals has great Ostomy nurses.
(Ask your surgeon for a referral) 3.
Communicate with your family and friends; they can be as scared as you 4.
Reach out and join support groups 5.
Exercise.
This give you a sense of strength and better body image 6.
Dress up! Put the sweat pants away
He said "the surgery was a success we removed the entire tumor and the margins looked clean" I was confused at this point.
It was 6:00 in the morning and I was in my room at Massachusetts General Hospital.
I fell back asleep and woke up about 1 hour later.
At this point things started to become clear.
I was not in pain but my stomach was so uncomfortable.
I was afraid to look under my hospital gown.
I decided it could wait.
I had other things to deal with I had to recover from this surgery and start chemo in six weeks.
The nurse came in later in the morning to check on my wounds from surgery and check to see how my stoma looked.
The surgery I had the previous day was to remove a tumor which included a bowel resection and build an ileostomy.
The nurse wanted me to look at the stoma and to begin to get used to my new body.
I now had a pouch on the outside of my body collecting waste.
It was all too much to deal with.
Two months previous I was running, doing yoga and weights to try to get rid of the five pounds I could not lose since the birth of my son.
This put all of that in perspective.
I told the nurse I did not want to see it.
She cleansed the stoma and changed the pouch.
She told me the stoma was swollen and would change in size dramatically over the next couple of months.
I did not listen, I could not.
The next day the nurse came to check on me.
She was not going to change the pouch if it was on securely.
Removing the pouch to often can cause skin irritation.
This can be a major complication of ostomies.
My body was healing and I was growing stronger physically ever day.
Six days after my surgery I was told I could go home the next day.
However, in order to do so I needed to deal with the ileostomy and learn how to change the pouch or appliance as the nurse called it.
Six days after surgery and just because I wanted to go home I looked down.
I was horrified and cried.
How was I ever going to be able to change the pouch.
I watched the nurse as she showed me step by step how to cleanse the stoma, cut the right size wafer( where the pouch attaches) and apply the bag.
She wanted me to do it and I said I was not feeling well.
I was allowed to go home as planned.
I was sent home with my ostomy supplies and a scheduled visit from the visiting nurse.
I was home for three days when the visiting nurse arrived.
She had patience with me as I cried.
I was not ready to deal with the ostomy.
She let this go for a few visits.
Around her third visit, or three weeks post surgery, came tough love.
The nurse informed me insurance was not going to pay for any more visits and I was on my own after today.
She oversaw me as I clumsily went through the steps and changed my ostomy pouch for the first time.
I was now on to the next phase.
I was capable for keeping the stoma cleansed and the skin healthy now I needed to deal with the body image problems.
This was the hard part.
My husband will never admit it, but he was afraid of the ostomy.
If I needed to change the appliance he would run out of the room.
His behavior gave me a sense of something is wrong with me.
It was summer time and I would not wear a bathing suit or shorts.
I was very jealous of what I perceived as normal people swimming at the beach.
I had problems I needed to deal with.
I started to reach out on-line to the ostomy community.
I read countless stories of people with cancer or crohn's disease dealing with ostomies.
I discovered people with ostomies can swim, run marathons, and do anything.
I became a student of the ostomy.
It helped.
I began to wear shorts and even exercise.
I was transforming or rather becoming myself.
However, my husband was not.
I believe the ostomy is much like the do not ask do not tell.
People cannot imagine having one and do not want to speak about it.
That is fine for most friends, but when you want intimacy it is not OK.
I broke down and confronted my husband.
I made him admit he thought it was ugly.
It was huge.
I was mad, but how could I be mad if I thought the same thing a few short months ago.
We began to communicate.
He needed to be as comfortable with the ostomy as me.
We began with him staying in the room while I changed the pouch.
I explained what the wipe, powder and wafer was all about.
It was working.
My husband had a sense that this was not bad and in his artistic mind interesting.
It was a great start to an awareness of my sense of self, along with his fear of my body and his greater fear of my death from cancer and how the ostomy fit in and saved my life.
The ostomy was a good thing! Tips: 1.
Be patient with yourself 2.
Seek help.
Massachusetts General along with other hospitals has great Ostomy nurses.
(Ask your surgeon for a referral) 3.
Communicate with your family and friends; they can be as scared as you 4.
Reach out and join support groups 5.
Exercise.
This give you a sense of strength and better body image 6.
Dress up! Put the sweat pants away