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.

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.

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...