Competition Time

Today is a special day. Six months ago at this time My family and I were waiting in the pre-op room. I was in my surgical garb and we were all a little nervous. I was about to begin my journey through this crazy process.

Today I will be competing in my first CrossFit competition since the surgeries. My family will be there. We are all a little nervous.

It won't really matter where I place at the end of the day. What matters is that I did it, against all odds, without complaints or excuses.

I did it.

So I Forgot

Yeah Yeah Yeah

I know

I have been neglecting my blogging duties. I have to be honest though, it is because I was feeling so great.

Everything just seemed to be falling into place. My strength, speed, and stamina were all returning.

I had some major CrossFit accomplishments the past few weeks: my strict pull-up returned, my toes-to-bar found their way home, even my deadlift got stronger.

And then it all came crashing down on me....

After about five days of wondering "was it something I ate?" I called my surgeon for a prescription to get rid of the pouchitis. That nasty little infection apparently has decided to make itself comfortable in my small intestine and that in turn makes me very uncomfortable.

But I started the magic cipro today and I know I will be feeling better by tomorrow. God this is so much easier than having colitis flares!

Strength

Sometimes we don't know where our strength comes from.

You hear about those women able to lift cars to save their children. Pure adrenaline right?

I think people who live with chronic illness have this super strength all the time.

I was talking to one of my friends yesterday. She is plagued by her chronic illness, but you would never know it.

Her husband went in for surgery this week and she confided in me that she has been working hard to put on her "happy face" while caring for him. She's pretending that her illness is fine so that he won't worry. She is working hard to take care of him, the house, the dog, and smiling through her own pain and stress.

That is strength.

For many people with chronic illnesses just getting out of bed, or for me - out of the bathroom, can be a major challenge. Yet we manage. We hold down jobs, take care of others, and take every step every day in pain. Yet we survive.

I am happy to report that things are getting better. It has been 13 weeks since my final surgery and my pain is less and my strength is growing.

Oh wait!

My strength has been there the whole time.

The Date

The hubby and I had a GREAT time on our date. The movie was hysterical and dinner was delicious!

It was only 7pm when we finished dinner so we decided to go and have a few drinks.

This is the first alcohol I have consumed in almost 2 years.

I am not a big drinker to begin with, so this was going to be a major first for me.

My hubby must have asked me three or four times if I was okay to be drinking. He didn't want me to get sick.

I am happy to report that the two Tiramisu martinis I consumed were delicious! I did not even get a hangover, probably because I drank 32 ounces of water with each one. (I am a little nutty about my hydration levels to begin with so I wanted to compensate for the alcohol.) But I did have more active bowls. 


Some people said that alcohol made them lose control of their bowls following their surgeries, but I was fine in that regard. 


Although it was only two drinks...
and I have no intention on testing my limit!

Caregivers

My husband and I are going on a date this Saturday. To a movie and dinner.

I am as excited for this date as I was for our first date.

I am getting my hair done today. I did my nails last night. We have a babysitter.

I realized that this is the first date we have been on since February 4th. 5 months ago. It was three days before I went in for my first surgery.

We have been so caught up in nursing me back to health, getting back in our routine with the baby, etc that I think we forgot about "us" as a couple.

As I started to feel better I would try to take the baby for a while to give him a break, but I never thought about that fact that maybe - just maybe - he would want to spend time with me.

The surgery is just as stressful, maybe even more so, for the caregivers. They feel the frustration of not being able to "fix" the problem, not being able to take away the pain. They have the sleepless nights. They go through it with us.

I am going to say thank you today, especially to my mom, grandma, father, and sister - all of whom came through big time as caregivers during my surgeries.

And thank you to my husband - even though he doesn't read this blog - I love you and appreciate everything you have done and continue to do as we find our way into normalcy. I am so grateful to have you by my side, holding my hand.

And I can't wait for Saturday!!!!!

Why Did I Wait So Long?

So It has been three days and....

BAM! Pouchitis is better.

I actually can't believe how much better I am feeling. After all the pain, frustration, and anger I now feel like a new person.

So "Why did I wait so long to call my surgeon?"

I thought it was "healing pains". Aftershocks of the surgery if you will.....

I wonder how long I had the pouchitis. 

Next time I will call right away.

My faith has been restored. Tomorrow I may try some fruits and veggies again.

Pouchitis

Okay so I have been a little behind on the blog.

To be honest, I have been behind on everything. Flu-like symptoms, nausea, feeling exhausted. I blamed it on my daughter and chasing around a one year old.

Then I started having more pain, frequency and urgency with my bowels. I blamed it on the fruits and veggies.

Then came the blood and I was all out of scapegoats.

I called my surgeon.

In five minutes he diagnosed me with Pouchitis. It's an infection in my new J-Pouch and can very easily be fixed with antibiotics.

I will let you know if he is right. We should know within the next three days.

After all I have been through I tend to be a skeptical when it comes to diagnoses.

Learning to Walk

I know I have been talking about all of my frustrations lately. That is because frustration is what I am dealing with. Frustration is what is on my mind. I thought I was getting better but then I had several bad days in a row. Frustration consumes me.

But I learned a very important lesson from my daughter yesterday.

She has been toddling around for the last few weeks. She walks well if she is holding onto a hand, but we have been encouraging her to walk more - without us there for support.

Yesterday I watched her fall down countless times. On her butt, on her twisted legs, on her hands, on her belly, even flat down on her face.

She didn't cry once. She got back up and kept trying.

Despite the fact that those falls may have hurt, despite her frustration, she kept getting back up and trying again.

So I am trying to be more like one my year old. Despite how much it hurts sometimes, despite how frustrating it can get when I have several "bad days" in a row - I will not cry, I will not give up, I will not get embarrassed.

My daughter and I are learning to walk together.

Should You Be Lifting That?

I don't like having to ask for help. I never have and probably never will.

I learned during the surgery that it is okay to accept help. I still don't like to ask for it though.

But what drives me crazy is when people judge me for what I am doing now - 11 weeks after the final surgery.

For instance, at work we were told that we needed to box up our office areas and take home any valuables because construction would be occurring during our vacation. So I loaded my office space into three boxes. Books, papers, files, and office supplies. I tried to distribute the weight evenly since I knew I would have to go down a flight of stairs and through several sets of doors.

Now we all had to do this. Everyone was busy.

My boss saw me carrying one of the boxes and said "Should you be lifting that?" 

No offer to help mind you. She was busy with her own work. But that isn't what irritated me. I didn't need the help. It was difficult moving the boxes, but I could do it slowly but surely.

What irked me was her judgmental tone. Yes I had just had major surgery. Yes I had just been out of work for 3 months. But no I am not completely helpless.

Did she expect me to be weaker? Sicker? Complain more? Do less? Did she think I was faking the surgery?

I don't know.

But what I do know is that I am strong. A hell of a lot stronger than most people. And I don't need her or anyone else judging me for it.

Some Things to be Happy About

After yesterday's rant, I figured I needed to do some soul searching and find all of the things I have gotten better at since the surgeries.

1. I can shower without having to sit down.
2. I can shave both legs in the same shower session. I was alternating one leg per day for a while there.
3. I can bring the groceries into the house without getting winded.
4. I can walk.
5. I can run.
6. I can lift my daughter.
7. I can lift weights heavier than my daughter.
8. I slept 5 straight hours last night.
9. It still hurts to go to the bathroom, but at least it doesn't make me cry anymore.
10. I haven't pooped myself in 6 weeks. 


So I guess I am getting better. I should probably start saying that when people ask how I am doing.

Frustration

There are many things that are frustrating with this process.

My frustration of the day is the slowness in my progress.

I am 11 weeks post-op and I know I shouldn't complain. Things could be a lot worse. Things could always be worse. But this blog allows me to vent so deal with it or don't read :)

I ran a 5K at 8 weeks post-op. It was my slowest 5K time ever in my life. 

I began lifting weights again. I eased back into it starting small at 6 weeks post op, but grew more confident these last two weeks and tested out some max effort lifts. I am 20 pounds off my power clean. I am 30 pounds off my push jerk. I am 50 pounds off my deadlift. I am 70 pounds off my back squat. I am 80 pounds off my overhead squat.

I also did some time trials. I am 15 seconds slower on my 500m row. I am 30 seconds slower on my 400m run. I am 40 seconds slower on my 800m run. I am 1:30 slower on my mile.

My husband told me last week that I look angry when I work out. 

That is probably because I am. 

Crossfit

Truth be told, I have always been athletic.

I love sports. For a while after college I ran. 5Ks to marathons and everything in between. But the colitis made consistent training difficult.

About 5 years ago a friend of mine opened a gym, a Crossfit gym, and I immediately fell in love.

The workouts were short and intense, compared to the hours I would spend running every day. It gave me the feeling of being part of a team. It fed into my competitive nature.

And the best part....

I was never more than 200 meters from a bathroom.

I Crossfitted 5 to 6 times per week, even in the days leading up to the surgeries.

Although I would watch my performances go down the tubes - not being able to lift the type of weight I usually would, being much slower, feeling gassed just a few minutes into the workout - I knew it was important to continue to Crossfit despite personal frustrations.

It made me stronger and helped me recover quickly from the surgeries. It also provided me a much needed emotional outlet.

I was even in the gym, working out, 6 weeks after the first surgery, bag and all. My doctor encouraged it. Even though I don't think rope climbs may have been the best idea I ever had, it was important that I take back my life.

I also received an overwhelming amount of support from my Crossfit family. Cards, flowers, gifts, meals, visits. Their positive spirit helped me through the toughest experience of my life.

I have been easing back into my workout routine over the last four weeks and the support is indescribable.

Even though I am now the last person to finish the workout, even though I can not lift as much as I used to, even though I can not perform dead-hang pull ups, ring dips, handstand push-ups, and a plethora of other movements the way I used to, my friends still cheer me on and assure me that I am amazing and will get my groove back.

Truth be told, they are the amazing ones.

With Gratitude

When I returned to work one of my colleagues asked me how the surgeries went.

I responded: 

"It was a great experience."

I immediately realized that I sounded like a freak.

Who says that surgery, especially a series of surgeries as complicated as this type, is a great experience?

I must explain...

During this ordeal, I learned an incredible amount about my family, my friends, and most importantly about myself.

I learned that my family will be there through anything. They will visit you every day in the hospital. They will bring you milkshakes. They will clean your bathroom. The gruesome moments that no one else sees, they see those, and they will do whatever they can to help even if it means just letting you cry. 

I learned that those who I thought were friends were not really the friends I thought they were. I was shocked when I went 13 weeks without any contact from some of my colleagues whom I previously considered friends. No text messages, no checking on how I was doing via Facebook. I wasn't expecting phone calls, cards, or flowers, but I was shocked by how quickly I was forgotten.

In this, I learned who my true friends are. The many who sent cards which helped keep my spirits high. The overwhelming amount of flowers I received in the hospital - some from friends I had not seen in months. The time taken out of busy schedules to come visit, many driving well out of their way to simply sit on my couch with me. The meals that showed up at our door that kept us fed throughout the entire first month of the ordeal. The emails, the texts, the phone calls, the Words with Friends games. I will never be able to express my gratitude for these friends.

I also learned that "Til death do us part" truly meant that to my husband. He was there every step of the way. He was a full time dad to our new child, a full time caregiver to me, all while working his full time job. He never lost his cool either, or at least never let me see it. He cooked the meals, cleaned the house, did the laundry, and comforted and catered to me. Soup with saltines at 9pm? Grilled cheese at 7am? Run to the store for more Imodium? Trip to the emergency room because I thought I had a blockage? He never acted like I was an inconvenience. He once told me that he loved me because I could help him move our furniture. He has now seen me, someone he fell in love with for her strength and independence, at my weakest and most vulnerable. And I think he loves me more now than he did when we got married. 

And from this all I have learned a lot about myself. You never know what you are made of until you are tested. This was the biggest test I ever faced and I am proud to say I passed. I am still adjusting and I've heard it can take up to a year. There are good days and there are bad days, but I guess I was right...

It has been a great experience.

The People I Hate

I know hate is a strong word. But right now it is the only word I can find to describe how I feel about certain people I have encountered over the last few months. These are all comments that were said to me over the last 4 months...

Person # 1 - Mr. or Mrs. "I Know More Than You"
"You should eat gluten free, dairy free, organic, macrobiotic..."
"You should exercise more/less."
"You should drink more water/drink less water."
"You should do yoga, pray, avoid crowds, carry hand sanitizer."

Thanks for the advice idiot - I've been there done that for the last 16 years. Trust me your brilliant idea was my brilliant idea 10 years ago and IT DIDN'T WORK. It's not like I just woke up one day and said "Boy I would really like to have my large intestine removed today." Right now I just want to punch you in the face.

Person # 2 - Mr. or Mrs. "My Life Is Worse Than Yours"
"I had a cold and couldn't work out last week. God you don't know how hard it was."
"I feel awful. I didn't sleep well last night."
"Things have just been crazy with work. I haven't worked out in 4 weeks. I feel like I'm starting from scratch. You know how that is."

Wow! Your life is so hard. I feel so awful for you. Living with half a brain must be difficult. Are you seriously going to complain about your cold to me? I don't feel bad for you. You think not sleeping last night was hard? I've done the crying baby thing and you know what I would rather do that any night of the week. I haven't slept either but it's because I am up every hour to go to the bathroom. I wear a diaper because I can't control my bowls. My diaper rash is worse than my daughter's. God I hate people sometimes!


Person # 3 - Mr. or Mrs. "Let's Compare Surgeries"
"It can't be that bad. When I had my C-section...."
"You will be fine. When I had my hysterectomy...."
"When I had my foot surgery..."
"When I had my knee surgery..."
"When I had my gallbladder out..."

Guess what! I don't want to talk about your surgery. If I did, I would have asked. And your surgery was nothing like my surgery so let's not compare. 

Person # 4 - Mr. or Mrs. "Insensitive"
"At least you don't have cancer."

Yes someone said that to me. They didn't have cancer either. Even if they did, their words would not have helped in any way, shape or form. 

Teaching & Learning

Teaching is a great job. Thankless at times, but so rewarding.

The hardest part of the job...
not getting to go to the bathroom when you need to.

I went back to work four weeks post-op, full-time.

I still had my back-up outfit stashed in a draw in my classroom. I wore long thin maxi pads as diapers (sorry guys I have no tricks - buy Depends). I taught sitting down. I didn't eat until I got home for the day or I ate very little, mostly chicken and rice.

I was lucky because my students, although they might not have understood, took pity on me and behaved. Or at least most of them did.

It was a bad idea all the way around. I should have listened to my doctor's warnings.

It has been ten weeks since the second surgery and I have not made any substantial gains. I blame it on my own pigheadedness.

I am fortunate to be heading into summer vacation soon and I fully intend on using the time to finish healing. I am living my life, don't get me wrong. I am not a hermit. I am living because I have learned the tricks of the trade - many that I have shared with you in this blog.

But I have learned that I still have some healing to do.

Back to Work

Three weeks after the second surgery I asked my doctor if I could go back to work. I teach high school. It's not like I am a construction worker. I thought it would be fine.

He told me to wait. I couldn't because I was running out of sick time.


He told me to only go back part time. I couldn't because of the way my schedule of classes fell.


He told me I would regret pushing it. He was right.

A Blockage?

About two weeks after my resection, a friend of mine came to visit.

I was feeling brave and itching to go out. I suggested we go out to eat. My doctor had just told me that I could start eating fruits and veggies again and I was craving a salad from my favorite restaurant. Out we went!

I only ate a little, chewed carefully, drank a ton of water. I followed all the rules. 

But the pain in my stomach, right under my stoma scar, I knew it immediately.... 

I had a blockage.

We waited out the night. I used heating pads. Took a hot shower. Drank hot water. Nothing helped. 

At 7:30am we went to the emergency room. I hadn't gone to the bathroom in over 12 hours. I was scared.

By the afternoon we were on our way home. Everything had passed. It was nothing major. Apparently blockages happen and can pass on their own. 

Apparently I had a lot of swelling around the site where they had reconnected my small intestine. I was also retaining a lot of fluid. 

Lesson learned. 

But trust me - it is not something I want to go through again.

The Strangest Thing

I felt stronger after the second surgery. I'm not sure why, but I did. I wasn't passing out all over the place. I wasn't winded from walking.

It was the strangest thing.

Oh boy was there pain though. 

You go to the bathroom constantly. Probably 20 or more times a day. It was like my colitis was back. Only it was a pain in my butt this time. Literally. So bad I would cry. I will never forget the pain of this for as long as I live.

One of my friends told me I was walking like I had a stick up my butt. I wasn't surprised. It felt like I did.

I told my doctor at my two week appointment. He recommended Imodium and bananas. And lots of diaper cream.

What I have found helps the pain the best is a routine of Imodium and Metamucil. Two Imodium before bed. One glass of Metamucil in the morning. This combination has reduced the number of times I need to go a day and has helped thicken things up. Those of you who are going through it know what I am talking about.

I also take a baking soda bath every night to help soothe the pain. Between half a cup and a full cup of baking soda mixed with hot bath water. I sit in it for 20 or 30 minutes and read a book.

It has been ten weeks since my resection. I am hoping it will get better soon.

Time for the Second Surgery

When I walked into the surgeon's office at 6 weeks, I was the patient he wanted to see. I had begun simple household tasks such as cleaning bottles and doing laundry (even if I took the laundry up and down stairs in my arms making several trips rather than using the heavy laundry basket). I was cooking and cleaning.

I was going for walks regularly with my husband and our daughter. We would walk around the neighborhood until I was too tired to continue.

I was doing the grocery shopping. I was going out with friends. I even volunteered some time organizing some competitions at the gym we go to.

The surgeon smiled and said he couldn't believe I was the same patient he saw two weeks ago.

I went for my tests to see if I was ready for surgery. The first was a rectal exam to make sure the connections were  healed internally. The second was the J-Pouch study to test the integrity of the new J-Pouch. They weren't pleasant tests but they were over quickly and I passed with flying colors.

We set the date for the resection and to close the stoma. It would be done exactly eight weeks since the first surgery had been performed.

Stop Being A Wimp

At four weeks I visited with my surgeon. He said that my incisions were healing well (I had five since my procedure was done laparoscopically). He asked how I was doing physically. I said I was doing well. I had after all showered that day and walked all the way from the parking garage to his office without stopping to sit down.

He told me to stop being a wimp.

He pointed to the fact that I had been extremely active before the surgery, at the gym everyday. Why was I suddenly proud of myself for a 7 minute walk? He told me I should be walking at least 30 minutes a day at this point. Ooops.

When I asked if I could start driving he actually laughed at me. Apparently I should have started sooner.

He told me that he wouldn't let me go in for the second surgery in my current condition. He wanted to see me again in two weeks. And he wanted me to be a fully functioning member of society. No more laying around all day long. No more only showering twice a week. No more relying on everyone else to cook my meals, clean my house, and care for my child.

It was time for me to man up.

But I still wasn't allowed to pick up my daughter. She weighed 20 pounds and the max weight he wanted me lifting was 10 pounds. Go figure. He told me to have my husband put her in the stroller and to take her for a walk.

So I did.

Surprises

I was surprised by what I found difficult post-op.

I was much weaker than I expected. I would get winded just standing up. Carrying on a conversation was a challenge because I would get so short of breath.

I got a stomach bug two days after I got home from the hospital. It hurt to throw up with the healing stitches but the bigger danger was in dehydration. My WOC nurse has since told me that from here on out I should go to the emergency room for IV fluids whenever I get a stomach bug. Realistically I don't see myself doing that. But I will tell you this - I have never felt more hungover in my life than I did after that 24 period. It definitely took me over a week to recoup what I lost in fluids that day and finally shake the "hangover".

My blood pressure also kept dropping (70 over 40) so I had to be careful not to pass out. When I felt myself getting light-headed, I would just sit down immediately. No need for unnecessary falls. My visiting nurse told me that this could also be my body recovering from the anesthesia. Remember you will be under for four or more hours. It takes weeks to leave your system.

On that note showering can be dangerous post-op. We were lucky enough to borrow one of those shower chairs from my grandmother once we realized I would pass out when I lifted my arms up. Try showering without lifting your arms. Ya - it didn't work. Think ahead and please be careful.

Or at the very least - sit down in the shower.

Stomy

When my WOC nurse told me to name my stoma - I thought she was on crack.

Name it? What was it a pet?

I couldn't even stand to look at it. But then I remembered that the nurses weren't always going to be there. It was me and my stoma and I had to take care of it. I made it my mission to be able to care for it by myself.

I named him "Stomy".

And I have no idea why I chose to personify it as a male...

So Stomy and I became best of friends - or at least living companions.

And you know what? It wasn't as scary or as hard as I thought it would be. I actually began watching Stomy. I was truly fascinated, and still am, with how my small intestine was functioning outside of my body. And sometimes you could identify the foods you had just consumed.

WARNING: Blue Italian ice will come out blue on the other end.

My husband actually had to tell me to "put that thing away" a few times. Apparently he didn't find Stomy to be as interesting as I did...

The emptying was a little gross at times, but I found that if I rinsed the bag with room temp water every time I emptied, the smell wasn't that bad. I just kept a red Solo cup near the toilet. You will figure out quickly what works for you.

My WOC nurse did a wonderful job teaching me how to change the bag. I changed it every three days, give or take. I even surprised the visiting nurses who came to the house for the next eight weeks with how adept I was at changing it. It wasn't that hard though: Get new bag ready, pull off old bag (think of removing a bandaid), clean area, apply the powder and spray that comes with the bags, put new bag on. It only takes a minute or two.

It wasn't always smooth, but here are some tips:

1. Use baby wash clothes to clean around the stoma. They are small and easy to maneuver. Remember no soap on the stoma.

2. If you feel burning around the stoma - change your bag. Chances are there is a leak in the adhesive and your gastric juices are eating away at your skin underneath the adhesive. This can be painful, especially when the skin around the stoma started to bleed. Wash carefully with warm water, Cake on some of that special powder they give you and put the adhesive right onto the broken skin. Sounds crazy, but it will protect the broken skin from the gastric juices. Make sure you consult with your WOC nurse. I ended up in a convex bag because my stoma was trying to wiggle his way underneath the adhesive part of the bag. Also make sure you measured your stoma properly. If the bag is too big then any exposed skin will break down. Mine was healed by the time I went to change the bag three days later.

3. Try not to eat or drink for a few hours before you change the bag. Sometimes this helps because your stoma will be less active (think early morning). Sometimes it won't help and you will spew stuff everywhere and make a huge mess. It's okay. S*** happens. Keep breathing and try to not let your hands shake. You can clean up the mess in the bathroom once you get your new clean bag attached firmly.

4. I found that laying down and applying pressure to the adhesive disk immediately after attaching the bag helped. Sometimes I did this for five or ten minutes. It also helped me relax after changing the bag.

5. Always have a garbage bag handy and ready to be thrown outside. Don't want to leave a smelly ostomy bag laying around in the bathroom for days.

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.

My Miracle Bug

My G.I. said we wouldn't be able to conceive...
We did.

He said that I wouldn't be strong enough to carry her full term...
Bug was born via Cesarean Section at 39 weeks and 2 days.

He said that there would be deformities, developmental problems, low birth weight...
She was 8 lbs 1 oz of pure perfection.

No deformities, no developmental delays to date, none of the problems my G.I. had told us would happen.
As we prepare to celebrate her first birthday, I thank all the forces in the universe for her. She is extremely verbal - DaDa, BaBa, MaMa, Kitty, as well as an assortment of other grunts and coos. She loves to sit and be read to. She loves to "read" the books to you as well. She also displays super strength - she's powerful as my mother says. And she loves people. Laughing, smiling, and playing with anyone who is willing to laugh, smile and play with her. I have yet to meet anyone who hasn't fallen in love with her immediately!

She is 95th percentile for height and 50th percentile for weight - which I am sure will only go up with the way she eats!

So to the women out there who were told You Can't, You Won't, You Shouldn't...

It never hurts to get a second, or third, or fourth, or in our case fifth opinion.

My Miracle Bug

The Pregnancy

My OBGYN would later call our daughter - a true miracle.

We saw my OBGYN at least once a week during the first trimester. Ultrasounds almost every week. But our little Bug, my daughter's nickname, was growing and developing normally. Although monitored carefully by my doctor, things relaxed through the second and third trimesters. She recommended a C-Section.

I had stopped my meds - Cold turkey - the morning I saw those red lines.

How could I knowingly put poison into my body everyday, while simultaneously removing caffeine, hair dye, lunch meats, hot dogs, and a plethora of other things from my life?

Dr. G. was pissed. But as we walked out of his office just eight weeks into the pregnancy, his nurse said to us "It's the first of many difficult decisions you will need to make as parents."


She was worth it.

Two Little Red Lines

5am

Saturday morning

October 2, 2010

Two Little Red Lines

I cried happily in the bathroom and ran back to bed to wake up and share the news with my husband

He began to dry-heave

Despite all the odds against us, we were going to have a baby!

Healthy Babies

Surprisingly this "last ditch effort" of 6mp, Asacol, and prednisone was working. My colitis was in remission. I had been without a flare for over 6 months.

It was just some random Tuesday, my yearly visit to my gynecologist, when she asked if my husband and I were planning on starting a family. I smiled and said "No." She must have forgotten I had colitis. Then she said ten words that would change my life.

We've had women with colitis give birth to healthy babies.

I nearly exploded with questions - the meds? The side effects? Everything I had been told in the past - by four different G.I.s - was that all a lie?

She set me up with an MFM (Maternal Fetal Medicine) doctor and started me on prenatals and folic acid - nearly ten times the recommended dosage. She said that would help ensure a healthy baby.

The MFM confirmed what my OBGYN had said. Together he and I began to plan my pregnancy.

You Cannot Get Pregnant

Dr. G - yes that is my fourth G.I. for those of you counting - came highly recommended.

After some more colonoscopies, he decided we would go back to the immunosuppressants, Asacol, & prednisone.

We discussed this course of treatment in the presence of my husband. It was the first time he had ever been present for this. The doctor explained the dangers of 6-Mercaptopurine. I was familar with these warnings and the blood tests that would be conducted bi-weekly.

You cannot get pregnant.

I had already discussed this with my husband. I had been told this by doctors several times throughout my life. I felt this type of information he deserved to be aware of before we got married. At the time, it didn't matter to him. He didn't want to have children anyways, or so he said.

But it was a quiet ride home. We were traveling 45 minutes each way to see Dr. G. Finally I asked him what was bothering him. He mumbled something about babies. And I cried.

Hearing the doctor say it made it real to him. Me? I had been crying every time I saw a school bus for the last four years.

Running

Dr. Z said let's try something a little different. I had responded so well to the Remicade, why not stay with that type of treatment. He taught me how to give myself injections of Humira.

Everything was great for about nine months.

But the colitis came back again.

Dr. Z. told me that we had exhausted our options. It was time to remove the large intestine. He explained the series of surgeries I would need to undergo, the potential risks, everything I needed to know. I was 26 years old.

I left his office and never went back.

I found a new G.I. gave him a brief history and started from scratch.

Remicade

After 3 years of prednisone Dr. Z gave up and said we should try this new medicine - Remicade. It wasn't new to medicine, Rheumatoid Arthritis suffers had been using it for a few years. They had just recently started experimenting with UC patients and it looked promising.

Sure. What did I have to lose?

It worked wonders after just one infusion. Never felt better in my life. Again. Colitis gone.

Sure I had to go to the hospital every 6 weeks or so, get hooked up to an IV, and sit there for 3 hours. But it was worth it. I fell in love with my Remicade.

I even ran a marathon - that is how good I was feeling. And I didn't even have an accident doing it. That is a bigger accomplishment than the race itself.

Then the joint pain started. Lime Disease? Lupus? Nothing made sense to my primary care physician.

I figured it out before he did. During one of my infusions, I started itching. I was having an allergic reaction to my precious Remicade after nine months of glorious living. Problem was - I'm not allergic to anything else so I didn't know I was having an allergic reaction. Suddenly everything was itchy - including my throat. I was having trouble getting air in. I started coughing to try to get some oxygen into me.

Ya I'm an idiot.

Luckily one of the nurses saw what was going on, switched me to saline, injected a bunch of Benadryl into the IV and everything got immediately better. She called Dr. Z. and that was the end of my friendship with Remicade.

What Had I Done?

I got a job teaching high school right after I graduated. I was flying high. Colitis was a thing of the past. I had a great job. I had begun dating the most wonderful guy.

I actually remember saying to one of my friends that when we were younger and imagined our futures, I had never imagined it would be this perfect.

And then one morning, I saw blood. Just the faintest amount, but enough to send me into an emotional frenzy.

No. No. No. This is my perfect dream. There is no colitis in my perfect dream.


I called my new G.I., Dr. Z., who I had begun seeing just a few months earlier. I was too old to stay with my pediatric G.I. but everything had been working when I switched so he kept my treatment the same. I just needed him to refill my medications.

I began taking the meds I had been forgetting immediately, but it was too late. The symptoms just kept getting worse.

What Had I Done?

The Ignorance of Youth

The new meds worked wonderfully! College was amazing! I was eating whatever I wanted and living a normal, healthy life. I forgot the pain, the shame, that I had the disease at all. And I stopped taking the meds.

Not cold turkey, and not really on purpose I suppose. By my senior year I was forgetting to take them in the morning. I was so busy rushing to the high school where I student taught; getting up at 5:30am is a huge adjustment for a college kid!

I tried taking them at night but that fell by the wayside too.

But I was still healthy. Actually I had never felt better. It seemed that my colitis was miraculously cured and now I didn't have to deal with all the awful side effects.

The Ignorance of Youth....

Off to College

I wasn't responding to the increasing doses of Asacol, and the prednisone (a.k.a. steroid of the devil) would stop working as soon as he tried to taper my dosage. After a few more colonoscopies, Dr. L nicely told me that there was nothing more they could do for me. I had just turned seventeen.

That was unacceptable to my mother, thankfully. And she made it her mission to find me the best G.I. in the state.

So we went to a pediatric G.I. that was the best in the state. She tried me on a new (at the time) immunosuppressant, mercaptopurine (6mp). I was told that I might lose my hair, and that I couldn't have children. But those seemed a small price to pay to stop the colitis. So we did it. Bi-weekly blood tests checked my liver enzymes to make sure that the medicine wasn't pushing me into toxic levels. And slowly but surely I got better.

Off I went to college to begin my new life!

The Steroid of the Devil

I haven't been on prednisone in a while and I still cringe when I think of it or hear the word.

Most people love prednisone. It seems to fix every problem, right?

Have poison ivy? Take prednisone.
Trouble with bronchitis? Take prednisone.
Inflammation in your bowels? Here's some more prednisone!

But anyone who has been on it for an extended period of time knows that it is The Steroid of the Devil.

You don't sleep - ever - maybe 2 hours a night and usually that is in 30 minute clips. There is simply too much on your mind. Always nervous. Everything is a major catastrophe.

And when you wake up, you need to change your clothes. Why? Because you have hot sweats worse than most menopausal women.

Oh and don't get me started on the hunger - might as well order a pizza while you are awake at 3am. I went from 130lbs to 180lbs. On my 5'9" frame I like to keep things around 150. Did I mention the weight gain was in about three months?

My face was so swollen my cheeks hurt. In my driver's license photo you can just about see my eyeballs. It looks like if you stuck a pin in my face water would come gushing out.

It also eats away at your bone density, and your mind. Mood swings? HA! Like a crazy person.

I will never take prednisone again. EVER. I have since found out that I am steroid-unresponsive. It only took 3 years of bouncing around 60mg to figure that one out...

In Circles

So the meds didn't work - surprise, surprise right?

And, now as a 15-year old high school sophomore, I began the challenge of hiding my symptoms yet again. I was lying to everyone. My parents, my friends, and even my boyfriend.

I quit the basketball team.

But then on Christmas morning, as my brother, sister, and I played Mario on the new Nintendo 64 that my parents had gotten us as a gift, my secret was spilled again. I bled through my pants.

Yup. That's right. Kneeling there in front of the T.V., watching my brother master controlling a 3D Mario that could walk in circles and not just forward and backward....

"What's that on your pants?"

Oh Crap. Here we go again. In Circles.

The First of Many

My confession to my mother resulted in a trip to my pediatrician, who in turn sent us to a local gastroenterologist. He was the first of many. Dr. L (to protect his identity) began the litany of tests. Bloodwork, sigmoidoscopy, and then the colonoscopy. And that was it.

I had Ulcerative Colitis.

The doctor put me on a rather small dose of Asacol, a commonly used anti-inflammatory. The first of many meds.

Just what every 13-year-old wants, right? Something that makes them different from their peers. There was no way I was telling my friends. Not even the girl who had been my very best friend since kindergarten. The shame continued...

The Shame

The Shame of telling anyone, even my parents, motivated me to hide my disease for as long as I did.

Finally, sometime around Christmas of my eighth grade year, the truth came tumbling out.

I don't remember exactly what the straw that broke the camel's back was...probably normal 13-year-old stress. Maybe a bad grade on a science test, a poor performance in a basketball game, a boy at school hadn't return my undying affection. Who knows? Whatever it was - it resulted in me instigating a fight with my mother - the way all teenage daughters do when they are pissed off at the world.

And that was it. In the course of a five minute argument, I managed to confess my deepest, darkest, secret to my mother...There was blood in my poop.

My mother, who has become my best friend over the years, says she believes she saw signs of the disease sooner. We just didn't know what we were looking at. I hope that one day Ulcerative Colitis, Crohn's, and all their ugly sister-diseases will be discussed as openly as other illnesses that plague our society. Maybe if we had known what the symptoms were, we could have sought out help sooner. Maybe if I knew what the symptoms were, I wouldn't have hid the disease for as long as I did.

Even now, after the surgeries, people - even those I consider friends - will say "I didn't even know you were sick!" when I explain why I was just recently in the hospital.

A convincing smile. A convincing lie. That is all it takes to hide The Shame.

The Beginning

The Beginning is not easy to pinpoint.

I remember the symptoms of Ulcerative Colitis rearing their ugly heads as early as the age of eleven.

I hid these symptoms from my parents for almost two full years. The cramping, the bloating, the diarrhea, the bleeding. Sure my parents were not happy that I was "in the shower" for 30 or more minutes each morning. But I hid my disease, which was always more active in the morning, with running water and a locked door.

The weight loss, or rather my inability to gain weight, was also easy to hide. My family is tall and thin. Therefore  I was tall and thin. And I loved sports, especially playing basketball. So I hid my gaunt figure behind some baggy t-shirts, mesh shorts and a pair of high tops.

The pain and emotional turmoil? That was the easiest to hide.
Q: "Are you feeling okay?"
A: "I feel fine." 
A convincing smile. A convincing lie.