Recovery # 1

My memory of waking up from surgery number one is blurry. They had me hooked up to IV painkillers. It flowed continuously, but I could hit a button and release more if I needed to. Between that and the left over anesthesia, I can honestly say I felt no physical pain. Sometimes things got a little uncomfortable, but it was not painful the way I had feared.

Sorry but things are about to get a little graphic...

I did not realize that I would have an anal drain - it was stitched into my butt hole. That was uncomfortable, but removed within the first three days.

I knew I would have a catheter. I had one before, but this one was not working properly. That was uncomfortable.

I had some trouble with my IV. It stopped working in my arm and they needed to find a few new locations. That was uncomfortable.

I can honestly say though that I was not in pain.

I could not bear to look at my stoma the first few days though. The bag was attached when I woke up but I just kept the blanket over it. I couldn't feel it at all. The nurses or my PCAs would empty it and I would look away. The first time I looked at it was almost five days after the surgery. My WOC nurse (a person who specializes in ostomy care) forced me to do so. She said I had to begin emptying it on my own. She made me help her change it. I cried the entire time it took us to change the bag.

"Johnny"

The ileostomy bag was the one thing about this surgery I feared the most. To be honest though it was not a big deal.

Before I went in for surgery, a friend of the family who has a permanent ileostomy talked with me. He showed me the bags and explained how they worked. My WOC nurse also did this when I went to get marked before the first surgery, but it was more comforting coming from a friend who lived with it every day.

He gave me tips such as always having a bag with spare clothes in his car and always having his ostomy supplies with him. He kept a spare ostomy bag and cleaning materials in his desk at work, in his car, and in his gym locker. That way if there was ever a leak, he could clean up, change the bag, and change his clothes if necessary. I simply began carrying a bigger purse with a wash clothe, a clean ostomy bag, a ziploc bag (to throw the dirty bag in), the powder, and the tube of adhesive paste. I never needed to use my emergency supply but better safe than sorry.

I often thought of this friend during my eight weeks with my stoma. Every time I started to feel bad for myself I just thought of him. He is the most optimistic individual I know. He is extremely active, biking and swimming regularly. He is always out socializing with friends and will be the first to admit that he eats whatever he wants. His surgery was emergent and he was not given the option of a resection due to his condition. He helped me remember that having an ileostomy was not that bad.

He reminded me that I may not always be able to control the situation, but I could control how I reacted to the situation. I could allow myself to be overcome with self-pity, with helplessness, with hopelessness. Or I could conquer the challenge with a positive attitude.

Johnny's optimism became my optimism.

Thank you Johnny.

The First Surgery

The emotions you go through are vast, overwhelming at times, and completely normal.

In the weeks leading up to the surgery, it was all I could think about. It consumed my life. I just wanted to shout about what was about to happen to me. I would go from extremely encouraged and positive one moment, to scared out of my mind the next.

I was excited to see how great I would feel once I was healed, but I was scared of the steps I would need to take to get there. I saw it as the greatest opportunity of my lifetime, but I was scared of the long road.

I was VERY scared about the bag. I was scared about my clothes fitting over it. I was scared about holding my daughter. The stoma is usually an inch or two south of the belly button and about three to four inches to the right side. I hold my daughter on my right hip. It sounds silly now, but I was really scared about not being able to hold her the way I normally had. I was scared that I wouldn't be strong enough to empty it, or change it. I was scared that I wouldn't be strong enough to handle everything.

The weekend before the first surgery I had a perfect weekend. I spent time with friends and my family. I truly cherished every moment.

The day of the surgery, I was not scared. I was looking at it as just another colonoscopy. I was joking with my husband and my mother right up until the moment I was wheeled away from them and into the operating room.

I had done everything possible to prepare. I had worried enough. Worrying was going to do me no good at this point. I was going to need to wake up, put trust in my doctors and nurses, and do whatever they told me to do in order to get better as quickly as possible. My goal was to be ready for the resection as quickly as possible.

I was focused.

The Surgeries

I feel as if I have learned an incredible amount about our digestive system going through this process and of course I want to share it all.

Although there are many different ways for people to have their large intestine removed (or partially removed), I am only going to talk about my experience.

I was going to have the process done in two surgeries. During the first surgery, the doctors would remove the large intestine. The surgeons would also cut my small intestine into two pieces. The top part would be pulled through an opening in my abdomen (about 1.5 inches wide), this piece of small intestine and the opening is called the stoma. The lower part of my small intestine was sutured into a J-Pouch, which would later act as my large intestine.

Since the stoma moves involuntarily and pushes out your feces without any thought or work on your part, there is a bag that attaches to you like a big bandaid that will catch the feces. This is the bag you will need to empty and change. I had my "temporary ileostomy" (stoma and its bag) for eight weeks while the lower part of the small intestine healed. 

I was able to get in for my resection in eight weeks. This is when the surgeons go back in an attach the top part of the small intestine with the lower part and they close the stoma opening.

It was a piece of cake.

Preparing for Surgery

So we set a date - just about four weeks from the day I met with the surgeon.

I used those four weeks to prepare myself and my family for the surgery. I visited every blog I could. Read every piece of information I could get my hands on. I watched every video the doctor gave me. I emailed links to my family. And we talked, every time we saw each other. I wanted to make sure that my loved ones would be ready.

It made for interesting Sunday dinner conversation.

I froze dinners. I made & froze enough baby food to last Bug for at least one month. I stocked up on all the essentials: Toilet paper, cleaning supplies, toothpaste, shampoo, Tylenol, chewable vitamins, liquid vitamin C & fish oil, books to read, soduko puzzles to complete, Imodium. These all became essential when I came home following the first surgery. I even made sure that Bug had enough diapers to last her into her teen years!

And boy did I clean! The house was scrubbed & vacuumed every day. Even as I performed the bowl prep the day before the surgery I was vacuuming! If the baby hadn't been sleeping when we left for the hospital, I probably would have vacuumed one more time.

There were a few things I forgot to stock up on though. Lipton soup with saltine crackers became my favorite meal post-op. I guess many people crave salt afterwards - give into the craving. I wish I had stocked up on those in advance. My husband got really tired of running to the stores for soup and saltines. And thank you notes. I had no idea how much support I would receive going through this.

I learned that I have the greatest friends in the world.

And I should have bought more thank you notes.

The Choice

The surgegeon got us in right away. He had looked at my file and the reports from my most recent colonoscopy.

It was a long talk.

He explained the procedure. He explained why people have it done. He explained the risks.

And then he looked me in the eye and said I had a choice to make: they could remove the large intestine now or later. Either way, me and my colon were not making it to the end of the road together.

My family has a history of cancer. My grandfather died of leukemia. My great uncle survived colon cancer. My mother was diagnosed with colon cancer at the age of 40. We all know the statistics. People with Ulcerative Colitis are more likely to develop colon cancer.

Maybe I was scared.

Sure I was screened all the time for colon cancer. But they could miss it. I was inflamed more of the time than not. It's easy to miss. For God's sake - they almost missed it in my mother's screening.

Maybe I was desparate.

How long could I continue living this way? The discomfort, the embarrassment, the chaos...

Maybe I was losing my mind and looking for a way out.

My husband and I weighed our options. Bug, our daughter who was five months old at the time, was not mobile yet and she was able to remember things for about two minutes. This wouldn't impact her. She wouldn't miss her MaMa. Instead she would have a healthy MaMa when she was older. One that could sit through her sporting events, go shopping with her, enjoy life with her.

I had just enough sick time saved from my job. We could make it work financially even if that meant some sacrifices.

I was young and strong enough to fight.

The Choice was glaringly obvious.

How Much More?

I had been lucky through the pregnancy. I had a small flare around week 32. I was able to quickly control it with Canasa suppositories. I did not start my medications.

Not three weeks after giving birth, my colitis flared.

With a vengance.

I was going to the bathroom over 20 times a day. I was dropping weight rapidly. I was no longer able to control my bowel movements. Things were spiraling out of control and I was overwhelmed by feelings of helplessness and hopelessness.

Dr. G. never said "I told you so" - but we began the steroid cycle again. After three months at 60mg of prednizone, I was still bleeding. He did a colonscopy.

I will never forget the moment in recovery. Dr. G. sat down on my bed. He said that it was good news. That he felt I didn't need surgery. That things didn't look as bad as he thought they would. He wanted to continue with our current course of treatment.

I cried. I was overtaken by depression. I didn't understand how he could say that things weren't that bad. He must not have understood what I was telling him.

The trips to the bathroom, not sleeping because of the trips to the bathroom, the accidents when the trip to the bathroom was simply too long...Had he not been listening?

What type of life was this?

I was becoming weaker by the day. Melting away.

How much longer would I be able to care for my daughter?

How far did the disease have to go? How far was far enough? How much more could I take?

My mother and my sister suggested I take control of my colitis and my health. I called Dr. G.'s office and asked for the name of a colorectal surgeon.