Colitis and Pregnancy

I knew from the start that due to my medical history, I wasn’t going to be able to have a natural childbirth.  I was told early on, after my first surgery that a c-section was the safest way to deliver any future babies. If you haven’t been following along or need a refresher, after a long struggle with Ulcerative Colitis I had over 99% of my colon removed on my 23rd birthday via emergency surgery after I had become septic. This left me with a colostomy bag for a year before luckily, having it reversed.

So, fast forward 3 years and I am pregnant with our daughter Rowyn and given 2 options on how to bring her into the world. The first being to try and have a normal childbirth and risk tearing (pregnancy is glamorous) which would leave me with a permanent colostomy bag.  The second and safer option was to have a scheduled c-section which would reduce the risk of damage to my J-pouch.  Without hesitation, I chose the latter. Recovering from a colectomy the first time was hella difficult, I couldn’t imagine doing it with a baby. 

Pregnancy

I had a very easy and uneventful pregnancy which was a blessing.  We got our OR date and our little one was scheduled to come into the world via c-section June 25, 2018.  I liked knowing when our monkey was going to arrive.  I am not one for surprises and like to be well planned so having a set countdown was great. I also had the "advantage" of 3 prior surgeries, so I knew what to roughly expect and was told a c-section was relatively minor compared to my past experiences. I wasn't nervous about the actual surgery. Any excitement/nerves I had was the fact that they were about to hand me a brand-new human and I was going to be someone’s mama!

June 25, 2018

We weren’t scheduled to be at the hospital until 11:00 am so it was nice to be able to wake up and have (our last) relaxed morning.  I was able to shower and wash my hair -which I wouldn't do for the next 3+ weeks so thank goodness I did.  We didn’t want to pay for 4+ days of parking at the hospital so my dad picked us up and drove us to RUH.  It was an odd feeling walking so calmly into the hospital knowing when we left, we would be a family of 3. We got checked in and suited up for the OR.  The team was amazing.  From our OBGYN, nurses, anesthesiologist, my family doctor even came for the event -everyone was so wonderful.   They took me in first to get a spinal tap to numb my lower half then brought Evan in as they started the actual c-section. I have to add, that if anyone is in a similar position where they have to -or are being encouraged to have a c-section, our experience was fantastic, and I am so happy with how our girl was brought into this world. While the anesthesiologist’s job was done after 10 minutes of the spinal he had to stay in the room as a precaution, he took it upon himself to play DJ and played songs and chatted with us while they worked on me.  It was awesome and a welcomed distraction that kept us both calm. 

Our first family photo

She’s Here!

“I see some hair!”.  I felt a final tug and our girl came into the world! They pulled down the curtain and our sweet Rowyn Sonia was finally here! Evan went with them as they took her to get cleaned off and check her vitals. He brought her back and I got to hold her for the first time.  It was amazing.

first snuggle with daddy

We spent the next few hours in recovery, soaking up baby snuggles and enjoying time just the 3 of us.  When the numbing had worn off, they took us upstairs to a single room and our families got to come in and meet her.  This was one of my favourite memories, getting to introduce our little girl to her family.  There is nothing quite like the instant love of a new family member.  We are blessed with amazing families and thank goodness because the events that followed this day, we would not have made it through without them.

Storm Clouds

The first 24 hours with our girl was filled with love, smiles and cuddles.  It was when day 2 hit that something started to feel off.  I was very tired -which is expected. I was sore -which is normal.  But I felt off.  I knew something wasn’t right.  I knew it in my gut (pun intended) that something was coming.  I’d had that feeling before and I hadn’t been wrong yet.  However, I have apparently learned nothing from my past instincts and tried to brush it off.  Rowyn was doing so well, we stayed in the hospital for 4 days and decided to go home.  By this point I felt drained and nauseous, I tried to tell myself it was from lack of sleep and recovering from surgery. I didn’t even have the energy to walk to the car.  My dad had to find a wheelchair to push me in.

We got home and I collapsed on the couch.  I couldn’t even make it up the stairs on my own. I had barely eaten in 2 days and couldn’t manage to get anything down I felt so nauseous. I was nursing Rowyn that evening when out of nowhere I started throwing up -luckily there was an empty bin close by.  I went to bed that night in a fog with a lot of stomach pain -not from the c-section. When I woke up in the morning, I couldn’t even get out of bed by myself. 

The Storm

My mom took me to see my GP, Evan stayed home to take care of Rowyn.  I don't remember much of the following 12ish hours but this is what I know: we got to the clinic and I couldn't even sit upright in a chair -they took us immediately to the back.  I laid down on the table and lost consciousness.  When I came-to, an ambulance had arrived and they were trying to get me onto the gurney. I was semi-conscious at this point and remember being so embarrassed -I don't know why- as they wheeled me out through the waiting room and all eyes were on me.  I closed my eyes and cried.  This was not how things were supposed to go.  I was supposed to be at home with my baby girl, soaking up the newborn snuggles, not strapped down in an ambulance receiving IV fluids and pain killers. 

NG Tube & baby snuggles

I was back in the hospital less than a day after being discharged.  I was feeling more ‘with-it’ after some IV fluids, but I still had a strong, constant pain in my stomach and lower abdomen.  I was put on Dilaudid as the naproxen I was on wasn't strong enough to even touch the pain.  The next few days were rough.  After some tests, they found I had a bladder infection, but they couldn't identify the reason for the stomach pain.  I was put on antibiotics for the infection.  They then decided to insert an NG tube. This is when they insert a tube (a lot bigger than I was anticipating) into your nose and down into your stomach to drain the contents of the stomach. Inserting the tube was awful. They fed it through my nose and when it got to my throat, they said to keep swallowing all the while I'm throwing up all over myself. I remember feeling so defeated at that moment. To make it suck a little more, this stayed in for 4 days. I was going through tests, scopes and other invasive procedures, I couldn't see my daughter for more than an hour or two a day, I was in so much pain, and they still couldn't tell me what was wrong with me.

After a total of 12 days in the hospital, barely eating and aggressive antibiotics, I went home.  I was a complete skeleton.  I went into the hospital to have Rowyn at 170lbs.  When I left, I was a weak and atrophied, barely-there 110lbs.  I couldn't walk up the stairs on my own, let alone carry a newborn. Less than a week later a few days after my antibiotics were done, the pain came back; searing abdominal pain, and I was in the hospital again - away from my baby. Barely eating, I was unable to get out of bed on my own.  Back on the antibiotics and some hella strong pain meds, I felt exhausted and devastated.  I felt like my body was failing me and I was failing my baby.  It was the most difficult thing I had ever gone through. 

My Village

looking rough but finally home

In moments like this, it is so important to have your village, and mine stepped up like I could have never imagined.  Both our families were a constant blessing.  My family was at the hospital supporting and advocating for me, while Evan’s family was supporting us on the Rowyn front.  I don’t know what we would’ve done without them.  Evan was exhausted, but still brought Rowyn to the hospital every day for an hour or two so I could feed her and get as much baby snuggles as possible.  

After another 5 days in the hospital, I was discharged again with antibiotics. I was weak but feeling better.  I got my appetite back and was eating small amounts throughout the day.  When I got home, I was thankful to finally be with my little family but it was hard.  I felt like I had missed so much, and I was struggling to take care of myself let alone a newborn.  Evan was a natural at this point and watching him with her filled my heart with such joy. 

The Rainbow

The weeks following were tough but slowly I improved, and every day felt a little more manageable.  It wasn’t until a year later that I had an appointment with my OBGYN to inquire if trying to get pregnant again was even an option for us -more on that later, that she said she believes it was the naproxen that essentially burned through my stomach lining and was wreaking havoc on my insides.  We won't ever know for sure.  However, it has been almost 2 years since Rowyn joined our family and after those few months of hell, we have had the most amazing time as a family of three. 

The Superheroes   

Our village was everything and I don’t know what we would’ve done without them!  My mom never left my side and as always was my voice and advocate -she has gotten pretty good at this point.  My dad was designated the “milk man” and would take everything I could pump (which wasn’t a lot because I had barely eaten) back to Rowyn at home.  My sisters brought me soup, company and even took Rowyn for a night to give Evan some rest.  My in-laws, from meals to supporting Evan and Row, it would’ve been almost impossible without them.  And Evan proved over and over how amazing a husband and now daddy he was and spent the first few weeks learning the ropes of parenthood, solo.  I always knew we made a great team, but this was by far the greatest challenge we’d have to overcome together, and I could not have asked for a more incredible partner.

Thank You

How does one get through dark times? Surround yourself with people who will help and support you.  This was not my initial strategy in my battle with Ulcerative Colitis (UC).  As many people do when they suffer from IBD, I kept things to myself and masked the truth of my condition.  It was because I finally reached out and allowed others to help, that I am still here today.  I wanted to dedicate a post to all those who pulled me through and kept me going when I was ready to give up. If you know someone with a similar journey, I hope this gives you some ideas on how to reach out to someone who is pulling away.

Woof.

Health Care

I owe my life to many people, the obvious being the doctors and nurses who cared and looked after me through my countless admissions and 3 surgeries.  My GP is an incredible person and went to bat for me many times.  She came to visit me in the hospital on many occasions and even came on her day off when I was being rushed into my first emergency surgery.  She went above and beyond her doctorly duties and I owe her my life. 

RUH -The Good, The Bad, The Compassion

Even though the emergency department at RUH gets a bad name for the long wait times, I have nothing but wonderful things to say about the staff and their care.  I came to know multiple staff members well in the ER as I was there often and when they saw me, they knew it was bad and I would be admitted quickly.  If you have read my past blogs you know that my trips to emerg usually ended in aggressive steroid treatments, blood transfusions and/or surgery. There was one nurse, Jason that also went above and beyond his job description.  I was always very anemic, and it was difficult to insert an IV.  Jason could always get an IV started on the first try and even came to the hospital on his day off when multiple nurses and doctors failed after 16 attempts.  If you have ever had an IV, you will know that 16 (yes I counted) failed attempts is a painful experience.  We called Jason our angel nurse for always being there. 

I was very fortunate to have a wonderful surgeon who is very thorough and caring.  I had another doctor who really “dropped the ball” and was a main reason I almost didn’t make it to 23, if it hadn’t been for my surgeon and his team my story would have ended years ago.  I still see my surgeon a few times a year for check up and scopes.  While things have been quiet, I have had some infections and abscesses that have been UC related. 

The Kindness

To anyone who visited, sent food or messages.  My extended family and in-laws were all so supportive.  They kept my spirits up and were there for my family who also struggled so much during this time.  Fun Fact: You can send letters to people in the hospital through this website.  They print it off at the hospital and deliver it to your room like a mailing service.  It is a nice change from the traditional text and a welcomed surprise.  I always enjoyed when people sent a personal note along with a joke or “when you’re out we’re doing this…”, it helped to get my mind out of the present-day gloominess and look forward to the better days that were ahead.

The Most Important

Now the most important support system and the biggest thank you(s) go out to my family.  My sisters for always coming to visit me in the hospital, bringing soup and smiles.  Having to deal with my steroid induced mood swings and having my back during the good and bad times.  My now husband, but then boyfriend, Evan for loving me and making me feel beautiful no matter how moon faced I got or how scarred my tummy.  It is hard, at first, to feel beautiful with a colostomy bag but somehow, he made it possible.

Finally, to my parents.  My dad would always bring whatever food I was craving/allowed to have. He would work all day and then spend hours with me in the evening playing backgammon or telling stories of school or family history to take my mind off my current reality. Finally, to my mom.  My champion, voice and strength.  She brought me into this world and 5 years ago she fought like hell to keep me in it.  She spent hours -I’m talking 12+ hours a day at the hospital with me.  Sleeping in chairs, dealing with doctors and telling and re-telling my story/symptoms when I was too weak to do it myself.  She is the reason I am here today.  I am blessed with many things, but my fearless and loving parents are at the top of that list.

My crazy crew!

It's the Little Things

It is easy to get wrapped up in our own lives.  We’re all busy and get caught up in our daily routines.  However, if you know someone who is struggling with their health (IBD or not), even reaching out through a text just to ask how they are or if you have time to stop by, set up a short visit.  I pulled away from many people when I was sick and sometimes felt forgotten -after cancelling plans so many times without a detailed explanation I couldn’t blame them, but it meant the world to me when people took the time to pull me back.  The smallest gesture truly can make a world of difference.

Thank you

Colitis Journey Part III

Ba-Bye Colon

It was a Sunday morning, March 1st, my 23rd birthday, I underwent surgery to remove over 99% of my large intestine.  My surgeon (I’ll call him Dr. K) saved my life that day and I will be forever grateful to him and his team for everything they did.  The surgery did not go according to plan.  The plan was to remove my large intestine and create a j-pouch out of my small intestine -this would act as a surrogate colon.  However, my insides were much worse than anticipated and their main goal was keeping me alive. The pouch would have to wait.

Hope

I woke up in recovery 4 hours later in a lot of pain but this time it was different.  I felt like the infection that had been attacking me for over a year was dead.  However, not all was well.  They had removed my colon and replaced it with a colostomy bag.  Yup, those things comedians/tv shows make fun of for old people having -I was barely 23 and I had one of my very own.  This was difficult to process.  What would people think? What can I wear with this attached to me?  Can I still workout? How does this thing work?  Can I still have children? Will this be permanent? Everything seemed to come crashing down.  The next few weeks were difficult.  I had to learn how to empty my bag, how to change it, clean it. It made sounds. I couldn’t control it. But I was alive.

Learning to Cope

As much as it sucked, I felt better.  I slept through the night for the first time in over a year. I got used to having “Stella” the stoma.  I became comfortable changing my bag and my hair stopped falling out.  I had lost roughly 75% of my hair; between that and the weight loss this gave me a very “Gollum” look.  To add to this sexy look, my hair started to grow back in short tufts, so I also looked like a kindergartener who got a hold of mom’s scissors.  Yup, get in line boys.

August 7th, 2015. I said HELL YES!!

As the months went by, I got used to Stella. I wasn’t as embarrassed anymore.  It meant I was strong.  I had survived a year+ of hell and I came out alive, and I didn’t have to fake it anymore -I was happy.  I had so much to be thankful for in life.  I had a wonderful family who was by my side through everything, plus I (miraculously) got through my first year of education and did well. To top off my blessings -that summer, despite everything that had happened, Evan asked me to marry him.  I could see the light at the end of the tunnel although I knew there were a few more bumps along the way. 

Next Step

Second surgery post op. Featured is a jp tube, incision from the first surgery colostomy site, and my new loop ostomy and bag.

After a scare in August that I might have Crohn’s disease as well (a lab tech messed up some testing) I was scheduled for my 2nd surgery in September.  During this surgery they created my j-pouch out of my small intestine. This was a tough recovery and I woke up with a loop ostomy (so I had 2 holes in my stomach instead of 1) which was an unwelcome surprise.  I also had a jp tube coming out of my side which helps to drain excess blood and fluid and hurts like a mother when it is pulled out. This was major surgery and I didn’t leave my hospital bed for almost 3 days.  With a catheter and colostomy bag, I literally didn’t need to leave the bed.  I was discharged after a week and finally got to go home. I was sore for a couple of weeks, but I was one step closer to getting back to (my new) normal.    

I was in a good place.  This surgery that once seemed like the worst thing in the world ended up being a blessing.  The next few months consisted of online classes and getting my strength back.   I was anxiously waiting for the call for my 3rd and final surgery. In this surgery they would remove my colostomy bag and close the holes in my stomach and “hook me back up” essentially.  The diseased part of my colon was gone but they left just enough to be able to reverse my colostomy.

The Finish Line

A few hours after my 3rd and final surgery. A little drugged, a lot happy :)

I got the call on Monday November 30th.  “We’ve had a cancellation, are you available this Thursday, December 3rd for your colostomy reversal?”.  HELL, YES, I AM!! I was over the moon excited!  I had been running this Colitis marathon for so long and the finish line just popped up in front of me! The next few days flew by and when Thursday arrived I was practically skipping into the hospital! Surgery seemed like such a normal thing to me at this point and I didn’t feel nervous at all walking into the operating room.  There were a dozen people all prepping and getting ready for the surgery.  Everyone was so wonderful, and I felt at complete peace as they talked me through the process of what was about to happen.  My mindset at this point was “knock me out and let’s do this!”.  Before I knew it, a nurse was waking me up in the recovery room.  Everything went well. I was done. I felt my stomach; no bag, no stoma, just a few staples.  I cried.  (I’m crying now).  Everything that had happened in the past 2 years was behind me, I had survived the storm.

The Calm After the Storm

I had my life back.  I went to sleep that night in the hospital, and it felt like a massive weight had been lifted from my heart.  I reflected over the past 2 years and everything that led up to this moment.  I gained a new perspective and appreciation for life.  These were extremely difficult years and I am finally in a place that I feel comfortable sharing my story.  If you are going through something similar, know that you are not alone.  Just remember that the pain, frustration and everything that comes along with this disease may currently consume your life, but if I can offer any comfort at all, it is that this is only temporary.

Thanks for listening,

Erika     

Colitis Journey Part II

A Dark Place

After 3 months of being hopeful, reality came crashing down in January. I ended back in RUH emergency (basically my second home at this point) as the Remicade infusion treatments were no longer working.  I was exhausted.  The abdominal pain was back in full force which led to many sleepless nights. I was losing my hair in massive chunks due to the treatment and stress.  The physicians decided to try the Remicade infusions more frequently in hopes that would keep the Colitis flares at bay. 

For reference most people with Colitis can stay in remission with minor medication and keeping diet and stress in check.  I am a very rare case that these drugs and treatments did not work.  -My mom always said I was special!

Arms Full of Scars

I was anemic again but not low enough for another blood transfusion.  I was discharged after 4 days, back on prednisone and went to the infusion clinic for another dose of Remicade.  Being anemic it was extremely difficult for nurses to start the IV. It took them 9 painful tries to finally hit a vein and I came very close to passing out.  My arms have permanent IV scars, but they remind me of how far I’ve come. 

Downward Spiral

The prednisone calmed the flare again, but after the 8 weeks were up I spiraled into another flare.  This was the worst yet.  I had zero energy.  I was back sleeping 1-2 hours at a time and would crawl up the stairs in the morning.  The pain was excruciating. I was severely anemic and pale; I hid it well. Every morning I would paint my face with foundation and bronzer to make myself look alive.  I would go to school and fake a smile.  I’d pretend nothing was wrong, pretend to care about assignments, pretend to be happy.  This disease is invisible. 

Now, the end of February, I would lock myself in my room and just lay in the dark and wish the pain away. Over a year of pain, treatments, disappointment, exhaustion, weight gain, weight loss, anemia, no answers, no solutions.  Why wasn’t anything working? What was my next option? Was there another option? How much longer could I live like this? Dark thoughts entered my mind and it scared me.

All I wanted to do was sleep, but I couldn’t.  Too much pain, dashing to the bathroom, frustration.  If my Mom hadn’t forced me out of bed and back to RUH on February 27th, I would have died within that week. 

Dance with Death

Back at the hospital I was put in a private room that used to be a broom closet -at least I was alone. They gave me 4 injections of Humira, 2 in the leg and 2 in the stomach. These were extremely painful. After that, not much was done. No tests, scans, scopes, nothing. My mom finally ran into a resident ( I’ll call her Dr. “Angel” because that’s what she is) in the hallway. We had dealt with her on a previous stay and Mom pleaded for her help. She immediately agreed and ordered some blood work. By this time I had a fever and was having a hard time staying conscious. They came back and took my blood again, which seemed strange as they were taking a lot and I knew I didn’t have excess to give. Dr. “Angel” came back but this time she wasn’t alone. I was septic. They wanted to operate that night, but I was too anemic. They scheduled the operation for the morning and I spent the night under close observation, receiving multiple blood transfusions so I would survive the surgery. My mom slept on a cot beside me. One chapter was ending but another tough journey was about to start.

Part III coming soon.

Colitis Journey Part I

What is Colitis?

Before I was diagnosed, I had never heard of Ulcerative Colitis.  I was ignorant to the disease, its symptoms and the hell that came along with it.  For those who are in the same boat as I was, here’s a quick overview.  Colitis is an autoimmune disease. The immune system sees the large intestine as an intruder and attacks it causing inflammation, ulcers and bleeding.  This leads to cramping, constant abdominal pain, running to the bathroom 20+ times a day and anemia. Yup -it’s shitty.

My Intro to Colitis

My dance with this sexy disease started in January 2014, although I wouldn’t be diagnosed until May.  All the above symptoms started and being only 21 years old I was foolish and tried to ignore the symptoms in hopes they would just resolve themselves.  When 4 months went by and my symptoms continued, I finally went to my family doctor (I owe this saint of a woman my life).  She listened to my problems and referred me to a gastroenterologist and said she suspects it to be Crohn’s or Colitis -two words I’d never given a thought to and didn’t realize were about to become my entire life.

Emergency Round One

I physically couldn’t wait for my specialist appointment and ended up in the emergency room later that month as my pain had become so aggressive. Besides the pain, I had lost so much blood I was dizzy and faint every time I stood up. I was admitted for a week and received IV steroids (prednisone), along with a drug to treat my symptoms long term as steroids are only a short term fix, they are very hard on the body and have terrible side effects in themselves.  However, the prednisone did its job and the inflammation subsided and I was discharged with oral steroids to taper down for the next 8 weeks.  All was good…. for 8 weeks.

Starting to get scary

Once I finished the prednisone, despite being on another medication my symptoms returned almost immediately.  This time they were worse, more blood, pain, humiliation…I was now 22 and living my life in a dark hole.  I wouldn’t leave the house or go anywhere unless I knew the location of all private bathrooms.   I didn’t sleep longer than 2 hours at a time as I was constantly going to the bathroom and had chronic pain.  I was exhausted. I tried to be tough and wouldn’t take any pain medication -not that Tylenol or Advil could have touched the pain.  I was in a dark place. By this time, it was August and I had a trip planned to BC with Evan (my now husband) and his family that I was determined to go on.  However, a few days before our trip I could barely get out of bed and up the stairs by myself.  My mom (another saint who I would not be here without -there will be a separate post on the amazing people who got me through all this) took/hauled me into RUH emerg for the second time.  They admitted me immediately when they saw my hemoglobin (the amount of blood in one’s body) was at 62. For reference someone my size should be sitting at a number roughly around 120.  Yup -I had half the amount of blood in my body as a healthy person.  I was put back on IV steroids and was given my first blood transfusion.  If you have ever donated blood -thank you. If you’ve wanted to donate but don’t know what it’s about, check out this link. 

To be honest being transfused was a little freaky.  Watching someone else’s blood go through my IV made me a little uneasy and I had to look away for most of the hour.  But none-the-less, thank you anonymous donor!

A Rare Case

I was discharged 4-5 days after the blood transfusion and went home slightly better but still not great. By this point I was down about 10lbs and my muscles had atrophied from not having the energy to do more than lay in bed. Unfortunately, a few days later I was back in the hospital again.  My insides were so sore and inflamed that they put me on a clear fluid diet for 4 days.  Everyday I only had 2 cups of soup broth and a few pieces of Jell-O, (I hate Jell-O to this day).  This time I was put on an infusion drug called Remicade.  This is a drug that must be administered directly into your system through an IV.  I would have to go to an infusion clinic every 6 weeks and have an IV drip for 4 hours for treatment. This drug is also very expensive as each infusion cost $3,000.  Thankfully we qualified for exceptional drug status and the government covered 98% of this cost and our insurance covered the rest. This drug seemed to do the trick and I was discharged feeling better and down another 10lbs. Yup- 20lbs down in just under 3 weeks. I was so weak and discouraged.  I was feeling better but I never let myself get too hopeful, I knew it could all change overnight.  Prednisone took care of the weight loss problem and I gained all the weight back plus another 10lbs within the month. Prednisone side effects for myself included:

·       weight gain and what people refer to as “moon face”,

·       mood changes/aggression/agitation -I would get so angry and it would come out of nowhere.

·       Headaches -I never got headaches before this

“moon face” mugshot

A visible side effect of prednisone, along with excessive weight gain. The other side effects were not visible but they were frustratingly felt.

But despite all this I wasn’t in constant pain and tried to get back to “normal life”

False Hope

Life started to get back on track. I began my first year in the College of Education, made some life-long teacher friends and pretended that life was going to be normal from now on.  I knew in my gut (lol) that this wasn’t the end.  The infusions were working.  I tapered off my prednisone and this time I didn’t have a flare.  September, October, November, went by and I was feeling like myself again after almost a year. My body stopped attacking itself.  I started to socialize again, workout and go places other than my house and university.  I hung out with my new friends and went to a few parties like a regular student and even hosted my class’s Christmas party.  

It looked like I was going to end the year on good terms and have a fresh start come January. Unfortunately, that’s not what my new year would bring.

Part II coming soon.