When I moved in with my boyfriend last year I left Luna, my cat, with my mom. We didn’t think she would handle the change well and I would visit her every week. Then Hurricane Irma happened and I had to take my family’s cats and Luna with me when we evacuated, boy was that fun. A few weeks after the hurricane we had Luna with us for a week while my mom was away and we realized that she was fine. In fact, she never left my side. We talked it over and decided to keep Luna and now our place is filled with kitty condos and scattered with cat toys.

 

Luna can be a pain in the ass, she wakes us up at 4:30 a.m. by gently poking our faces. She cries when one of us is on the balcony and she’s stuck inside. She loves to knock things off my nightstand, including my cup of water. Lesson learned, now I use lids. Despite this, I can’t imagine my life without the little fur ball.

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Pets have the ability to comfort us in ways that people can’t, especially when we are sick. I don’t know how they know, but when I need it the most, Luna snuggles up right next to me. She doesn’t expect anything from me and having her right there manages to lift my spirits, despite whatever physical agony I might be in.

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Last month, during one of my painful partial bowel obstructions, I was on the bathroom floor in pain, crying, throwing up, and I looked up and Luna was right there. I felt less alone in that moment. She’s not turned away by the smells, tears, or excessive cursing that is probably coming out of my mouth. She just wants to be there and sometimes that’s all I need.

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Luna came into my life during a very difficult time. I was a week away from having major surgery, I was about to get my current ostomy. I was home by myself all day long during my recovery and in a lot of pain, also the cabin fever kicked in and I was down in the dumps with no energy. Luna was a little mischievous kitten, all kittens are. She would get into things she wasn’t supposed to and I would constantly have to get up and make sure she wasn’t destroying something. She kept me moving, which was necessary for my recovery, and she kept me company during a lonely time. She didn’t care that I had an ostomy. You can see her using it as a pillow in the picture below, I still had some staples in my incision. That little nugget made a difficult time in my life a little bit easier. fullsizeoutput_14c

In fact, science backs me up on this. It’s been proven that having a pet can reduce your pain, lower your blood pressure, and improve your mental health. Luna adds a lot to our lives. If I’m in the hospital, Kevin isn’t home alone, he has Luna. If Kevin is traveling for work, I’m not home, I have Luna.

I can’t imagine my life without this little nugget. The unconditional love that come with pets is priceless.

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I’ve had my ups and downs this year, as I’m sure everyone has. Hurricane Irma wasn’t fun, even though I know how lucky we were to escape the worst. Medically speaking I had a rough summer and then a rough autumn, but hey, life goes on.

Personally, we lost our family matriarch this past summer. My great-aunt was a grandmother to me and lived a long and wonderful life. Our family got together to celebrate her 90th birthday earlier in the year before her health started to decline. I always imagined she would be at my wedding one day, but I’m grateful for all the time I had with her and that she got to meet Kevin and see how happy I am.

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Speaking of Kevin, this summer we moved into our first apartment together. That was exciting and I’ve had to learn to let him be my caregiver. I’m so used to my mom being the first person I call. That’s been an adjustment … a good adjustment. It’s been fun discovering some of our differences, like when it comes to decorating. I love knick-knacks and Kevin doesn’t care for them at all (even though half of my knick-knacks were gifts from him, ha!).

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Even though it’s not always easy to plan ahead with an unpredictable illness, we still managed to travel; cruised the Caribbean (St. Marten, Puerto Rico, St. Thomas), Atlanta, Key West, Nashville, Vermont, and of course  Disney World.

 

When it came to my health I dealt with painful ovarian cysts and a flare-up that I’m still trying to get through. Hoping my current treatment plan will give me a healthy 2018.

Thank you for reading my posts about life with Crohn’s Disease this year. I know my audience is small (hi Mom!), but I appreciate that you give me a few minutes to speak from my heart or ramble nonsensically.

Here are a few of my favorite posts from 2017:

Adventures in Fashion: Part Deux

Adventures in Fatigue

Adventures in Swimming

Adventures in Dating

Adventures in Intimacy (Most Viewed Post)

Why I Didn’t Want to Fall in Love

Cheers to a happy and HEALTHY new year!

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Hurricane season is officially over and I feel it’s safe to post my Hurricane Irma recap. I originally had planned to finish this post in November, however, Crohn’s Disease got in the way.

Growing up in Florida was pretty great, Disney World was pretty much in my backyard (kind of, haha). However, living in the tropics does come with some downsides, including Hurricanes. I’ve been through several storms, some major and some minor. They all suck. In fact, right after we moved to Miami, Hurricane Andrew hit and it was a Category 5. I was 6 years old at the time so didn’t really understand everything, but I do remember the walls shaking. It was pretty scary.

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Back in September, we dealt with Hurricane Irma. At one point Irma’s track was heading directly for Miami as a Category 5. Yikes. I recently moved and now live pretty inland so I’m not in an evacuation zone. People who don’t live here don’t really understand what it’s like. There was the assumption that the entire city packs up and gets out of dodge. Not the case. If you live in a safe structure you can stay put, unless you are in a flood zone. Storm surge is the big killer. If it doesn’t kill you, it will strand you and you won’t be able to go anywhere and no one can get to you. This is why you evacuate, among other reasons.

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Labor Day was when we really started to pay attention. I don’t really give it too much thought every time we are in the “cone of death”. It always changes, so why worry? We did fill the car up with gas and grab some water at Target. We already were stocked up with food and figured we would be fine.

By Wednesday my office was closed for the rest of the week and this thing was looking serious. Wednesday night we decided to head up to Boynton Beach, which is about an hour drive. We figured during the day there would be more traffic and we didn’t want to worry about gas so we headed out in the night, like the Von Trapps fleeing the Nazis. We were a little scared and also, his parents were stocked up with food, so I thought that would be great. I had my mom’s cats with me because she was working through the storm and YOU NEVER LEAVE YOUR PETS BEHIND!!

I packed my meds and a month’s supply of colostomy supplies. Right now I’m not on that many pills, so I only have to worry about an injection every 8 weeks and Prednisone (groan). You can’t just walk into your local drug store and pick up colostomy supplies, I have to order them. Thankfully, when I order my supplies, I get a 3 month supply (which somehow lasts longer). When we were first in Irma’s “cone of death” (about 5 days out) I took a quick inventory of my supplies. I had plenty. If not, I would have called the medical supply company and asked them to rush me a shipment. Overnight express is a thing and these are the situations where they are needed.

The weather didn’t start to get bad until Saturday night, so we pretty much sat around watching TV and eating. Kevin’s mom cooked as much as she could because once the power went out the food would spoil. I don’t even know how much I ate and I was having some intense Prednisone cravings.

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Irma was the storm that didn’t end. All day Sunday the weather was bad but we still had power. I’ve been through several hurricanes and usually, they are over in a few hours, Irma was the uninvited guest that didn’t know when to leave.

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I would sneak off to our room for naps because I started to get some intense cramps. It felt like a partial bowel obstruction. I used a heating pad to help with the pain and I was able to endure. I also spent time with the cats during my naps. The cats had to stay in our bedroom because Kevin’s parents were dogsitting Goldie, pictured below.

By 8:00 p.m. Sunday night the worst of the storm seemed to be behind us. We ate dinner and decided to play a board game and pretty much figured that since we still had power we might not lose it. Moments later the lights flickered and then the house went dark. Seriously? The storm was over and THEN we lost power? Ugh. Come on!

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I called it a night and tried to get some sleep in a hot room with no AC, then my intense cramps came back. Well, there was no way to use my electric heating pad or take a hot shower so I had to rely on some strong painkillers. Kevin offered to take me to the ER but with no street lights and still some lingering bad weather I said it wasn’t worth the risk right now.

The next morning we still had no power. I had to change my colostomy bag by flashlight. The month before I had to change my bag in the woods, so I’m just adding interesting experiences to my list of adventures.

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We surveyed the damage in the area and there seemed to be a few downed trees and palm leaves everywhere, minor structural damage. One of our neighbors informed us that our power was on back home, so in the afternoon when we confirmed that the roads were safe we packed up our stuff and the cats and headed back to our place to check for damage and soak in the working air conditioning.

We were so relieved that there was no damage, no leaks, nothing. Kevin had moved everything away from the windows so we spent some time putting everything back. It was almost like moving in all over again. Oy. My mom was without power so we kept the cats at our place for the week, which was interesting. They camped out under the bed until they started to feel comfortable.

My office was closed for another week as people were still returning home from evacuating and power was still out across the county. My Facebook feed was filled with people celebrating the return of electricity or praising the sighting of the FPL (power company) trucks on their street.

Eventually, life returns to normal. We were lucky that we dodged the worst of it, it could have been much worse. You prepare for the worst and hope for the best.

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I’ve tweeted and posted a few things here and there, but no actual new blog post for about two months. Yikes. I’ve been in and out of the hospital the past 6 weeks fighting a flare that just won’t go away. I even spent my birthday in the hospital. Bummer, but I can’t spend too much time being upset about it.

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I’ve started new medications and I try to avoid talking about the medications I’m on because I don’t feel that this space should be used for medical advice, I’m not a doctor. Besides, everyone reacts differently to different treatments, so I just rarely write about my current medications. These are discussions you need to have with your doctor, not some rando from the internet.

Anyways, I have a few posts sitting in my drafts, I hope to get them up soon. I didn’t really have much to say about the joys of living with this disease while battling this flare up. Hopefully, now the worst of it is behind me, so stayed tuned because I probably won’t be able to shut up.

Thanks for reading!

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Living in Florida we have one season, Summer. I’m a Floridan through and through and couldn’t handle the cold weather, I admit this, however, I don’t mind getting to dip my toes in the seasons and seeing what the world has to offer. I swear that everything looked like a postcard, Vermont was beautiful. I wasn’t sure if my photos were going to truly capture what I was seeing, but I soaked in every moment and it truly was a perfect weekend.

Getting There

Kevin and I decided to fly into Hartford, CT and drive up to Vermont (about a 3-hour drive). It was way cheaper and we were going to have to rent a car no matter where we flew into. Getting around Vermont with Lyft and Uber wouldn’t be easy, I honestly didn’t even open the apps to check out of curiosity when we were there.

When researching flight options the best deal we found was with Spirit. I’ve flown them once before and it was awful. I was a little nervous but understood if I had an uncomfortable flight, it was only going to be for 2.5 hours. The deal was too good to pass up. We got lucky. Our flight going up was half full, it was fantastic. The seats don’t recline, but we had an entire row to ourselves so it wasn’t an issue. I downloaded plenty of episodes from various shows on Netflix for my entertainment and I always travel with a book. I know how to entertain myself.

Our return flight wasn’t bad either. It was almost full, but again we lucked out and had the entire row to ourselves. Everyone from Spirit was friendly and based on this trip I would fly them again. If you fly Spirit make sure to pay attention to the carry-on measurements. They are strict about the size and if your bag is too big they will make you check it. The night before we left we used our tape measurer and made sure we weren’t going to have issues.

Our first night we stayed at the Sheraton Bradley Airport Hotel. We arrived at 10:00 p.m. and didn’t want to drive into Vermont late at night. We figured staying at an airport hotel was the better choice and we could get an early start after a good night’s sleep. We didn’t realize the Sheraton Bradley Airport Hotel was actually in the airport. We walked off our flight, grabbed our bag, and walked right into the hotel. Our room even had a view of the plane we just got off. We thought this was the funniest thing. Sometimes we can be easily impressed.

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Road Trip

We picked up our car from Budget, got an upgrade to an SUV, which was pretty cool. I turned on Siri to guide us to our destination and we hit the road. I’m not used to driving through three different states in one day. It takes at least 8 hours to drive out of Florida. Leaving Connecticut and driving through Massachusetts on the interstate wasn’t anything special, but once we were in Vermont everything changed. Also, getting off the interstate and going through the mountains on the windy roads do change the scenery a bit.

Seeing the fall foliage and all the cute towns were just incredible. I brought a book with me to read in the car, but I didn’t open it once. I was just staring out the window taking in all the sights.

What We Ate

Sugar and Spice: Kevin used to come to this place with his family over 15 years ago. He said it was exactly the same, a lot of this was a big nostalgia trip for him. This was our first stop in Vermont and I think we were both relieved to get out of the car. There were pumpkins out front (every house/building had pumpkins out front).

I had the waffles and ice cream with a side of bacon, because why not?! Kevin had the Sugar and Spice pancakes, which were DELICIOUS. My prednisone fueled hunger cravings were in full force the entire trip and I was eating everything in my path, including some of Kevin’s food.

The Garlic: I spotted this restaurant on the way to our hotel. I love garlic so immediately I was sold. After asking for recommendations at the hotel, The Garlic was high on the list. They had freshly baked bread that they serve with a roasted garlic that they drown in balsamic vinegar and olive oil. Dipping the bread in this beautiful concoction was delightful. I asked Kevin if he could figure out how to roast a garlic for me because I’m going to want this again and again.

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I had the Chicken Picatta and Kevin had the Chicken Marsala. The entrees were huge and we could have easily split one between us, but hey, we were on vacation. My chicken was so tender and delicious, I stuffed my face. A serious food coma shortly followed, which was perfect. We winded down the evening in our room in front of the fireplace. Oh Vermont, you’re adorable.

The Hatchery: One of our best finds, this place was fantastic. If you ever go to Vermont, you HAVE to go to the Hatchery in Ludlow, Vermont. Freaking fantastic. I found it while looking up breakfast places that would be on our way to Chester. It looked cute, the menu looked perfect and it had good reviews on Yelp.

It was just another adorable Vermont place that had been there forever. We started our breakfast with a tasty Hot Apple Cider with cinnamon. I’m pretty sure it’s a Vermont law that everything must contain cinnamon. I’m all for it. We wanted a big breakfast that would get us through the day and we went to the right place. I got the sausage gravy and biscuits with two eggs over easy and Kevin got the cinnamon bun french toast. We shared both of these amazing entrees, because umm, how could I not have some of that french toast??!

I was taking Prednisone during this trip and I’m pretty sure I ate everything in the entire state of Vermont. I was constantly looking for the next meal. Everywhere we ate was fantastic.

Things to Do

Hathaway Farm & Corn Maze: I’ve never in my life been in an actual corn maze. It wasn’t easy and I’m not sure how long it took us to navigate the maze. It didn’t help that I was starving and desperately wanted dinner. It was challenging but worth it. Not sure how we got out of there, we may have cheated.

After we got out of the maze we explored the actual farm which had a bunch of animals. Adorable goats, sheep, bunnies, donkeys, cows, etc. I’m just not used to seeing farms in Miami.

Green Mountain Railroad: We took the Chester to Okemo Fall Foliage Train Ride. The views were amazing, again, everything looked like it was out of a postcard. Once we arrived at Okemo, we explored the Okemo Mountain Resort and rode the Timber Ripper Moutain Coaster, which was a lot of fun. There was also a Fall to Winter Festival going on, we grabbed a hot cider and a hot dog and headed back to the train.

Killington Peak: I’m not in shape and couldn’t handle hiking up a mountain, luckily there was a chair lift and Gondola ride that took us to the top of Killington Peak. It was overcast, but the views were pretty great. I got a little-winded walking uphill at times, thanks, anemia. I just paced myself and took breaks when I needed it. If the hill was challenging, I’m glad we didn’t take on the actual mountain.

 

Pleasant Street Books: This isn’t an attraction, it’s a bookstore. This may have been one of my favorite things in Vermont. We stumbled onto this bookstore as we were driving through Woodstock, which is the cutest little town. I probably spent an hour in there looking at all the old books, I could have spent the entire weekend there. As a book lover, I was just in awe.

Vermont was amazing and I know there are so many places I’ve yet to see, but I would definitely come back. It was such a perfect weekend and I’m sure I’m leaving a few things out.

 

 

Quick Recap

2010: I had my second surgery and was given a temporary colostomy.

2011: I had another surgery to remove the temporary colostomy.

2014: I had my fourth surgery and ended up with my second colostomy, which I still have.

Yeah, so I’ve gone back and forth with a colostomy and lived to tell the tale. Today I thought I would talk about what having a colostomy reversed is like. This surgery is commonly referred to as a “take-down surgery” or reverting to my “indoor plumbing” as my surgeon would say.

Before I could have the colostomy reversed, the doctors had to make sure my colon was healthy enough to reconnect. You can’t reconnect diseased/inflamed tissue. I had several sigmoidoscopies to check the rectum and status of the tissue. I honestly can’t tell you how many sigmoidoscopies I had that year. The good thing is that there was no bowel prep involved. The doctor was just scoping the rectum and since my rectum wasn’t connected to my colon there was nothing that needed to be cleansed. Phew. I was sedated for each procedure because I won’t let a doctor near me with a scope if I’m not heavily sedated. Yay drugs!

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I had my first colostomy for about a year until my rectum had healed enough for the take-down surgery. I had no issues with the colostomy and honestly loved it, but I knew it was only temporary. Life before was awful, I was chained to my toilet and could barely live my life. I was depressed and hated life. The colostomy gave me a chance to live my life for the first time ever. I no longer had to sit on the sidelines and watch everyone else have all the fun.

A glimpse into my life when I had my first colostomy. I got to be a regular girl in her twenties.

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I was incredibly nervous about going back to my pre-colostomy days. Would I automatically be chained to the toilet again? Would I be sidelined again? I have chronic illness PTSD and was so worried that life would go back to being a nightmare. Talk about anxiety. Not to mention I still had to go through another major surgery.

The actual surgery was uneventful. I remember waking up in recovery fully aware of what was happening and since I was fully aware, I was in so much pain. Usually, I’m pretty sedated in recovery and have no idea what’s happening. The anesthesia team let me down this time. I also noticed they did not give me a central line and opted for a regular IV right below my armpit. I have notoriously shitty veins and usually have a central line for surgery. It’s just so much easier. My veins can’t hold a good line for more than a day or two and usually, I’m in the hospital a week recovering.  I don’t want to have to deal with multiple failing IV lines. Ugh.

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When you are recovering from a bowel resection your bowels completely stop moving, they become paralyzed. It takes a few days for everything to come back online and you can’t go home until you have a bowel movement and can tolerate food. Passing gas is the first sign that things are going well, this is why every doctor and nurse will be constantly asking you about farting. It’s a good thing.

Not having my bowels move is weird, because my whole life has been trying to get them to STOP. Having the opposite problem is very odd. Also, I had no idea what to expect. For a year I had not gone to the bathroom like a normal person, I had been pooping in a bag. When feces exits the stoma, it would just dump out into the bag. I had no say in the matter. I kind of had to potty train myself again. I couldn’t remember what it was like. How will I know I need to go to the toilet??

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It was probably about 4 days post op, I remember it was the middle of the night. I was fidgeting around and tossing and turning. I felt something in my backside and was super annoyed. Ugh, what is this? Why do I feel so odd? OH YEAH! My body is telling me I have to POOP!! So I slowly (remember I had a very fresh major abdominal incision) got up and sat on the toilet to poop for the first time in over a year. It was very exciting.

I was warned they I could have accidents in the beginning and I may need to wear adult diapers. Not going to lie, I had worn adult diapers during my pre-colostomy days when things were really bad. I used to wear them on the regular. Knowing though, that this time around it should only be temporary, I was okay. It turned out that I didn’t actually have to use adult diapers and didn’t have any accidents as I transitioned back to toilet pooping. I was very surprised and relieved, although if I had to, I’m sure it would have been fine.

My recovery lasted about a month, maybe a little bit more. Since all the diseased tissue in my colon had been removed life was okay, I didn’t revert back to the dark days. I wasn’t chained to my toilet. In fact, a few months later I signed up for Team Challenge, and within a year I completed a half-marathon. I was able to continue living my life without an ostomy. I still had my bad days here and there, but for the most part, I was okay.

 

Unless you were living under a rock, you probably heard all about the Solar Eclipse last month. Living in Miami I wasn’t in the path of totality, so my boyfriend and I, along with a few friends, traveled to Nashville to get the full experience of the total Solar Eclipse and explore a new city.

There was 6 of us in total, three couples. Our best bet was AirbnB. I’ve never used AirbnB, this was my first, but I loved it. The house had three bedrooms and three bathrooms. Everything in the house was brand new and we could tell it was used just for AirbnB, no personal items. It didn’t feel like anyone actually lived there. My friend Liz made all the arrangements and she communicated with the owner about any questions we had. If you are looking for an Airbnb in the Nashville area, I highly recommend you check out this great house in West Nashville.

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The first night we checked out some of the bars Downtown and then headed to dinner at Monell’s. AMAZING. They don’t take reservations, so you have to arrive early and put your name on the list and prepare to wait. It’s family style and you will be seated with other people at a large table. The wait is long, but it is worth it. Once you are seated they start passing around large dishes to share of biscuits, gravy, mashed potatoes, cream corn, mac n’ cheese, fried chicken, catfish, pulled pork, and I’m sure something else that I forgot about. You can eat as much as you want and the servers were great. If I ever find myself in Nashville again I will definitely make sure I go to Monell’s again.

The next day we headed to Pinewood Social. It reminded me of something you would find in Wynwood, very hipster. Along with a great restaurant, there is bowling, swimming, and all sorts of things to do here. We had an amazing brunch followed by some bowling. I’m a terrible bowler, but it won’t stop me from having some fun.

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We weren’t going to go to Nashville and not tour a distillery. We went on a great tour of the Corsair Distillery, where we met this handsome guy Cooper.

The entire reason for our trip was to view the solar eclipse. We originally had planned to do a hike at a park, but it was freaking hot. We still went to the park, just skipped the hike. We grabbed some stuff at CVS, like a picnic blanket, whiffle ball, cold bottles of water, and a mist fan. Getting to see the eclipse was amazing and my words can hardly do it justice. For the two minutes when the sun was completely eclipsed, the sky went dark, all the night bugs started making noise and the temperature dropped.

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Monday night Kevin and I were on our own, all of our friends had travelled back home. We had one more night. A lot of people were in town for the eclipse so hotel rates were high, but we booked one night at The Alexis Inn & Suites Nasvhille Airport. The staff were extremely helfpul and friendly and there was a great complimentary breakfast.

For our last night, we were exhausted but didn’t want to waste it at our hotel. I looked at the map and noticed we weren’t far from the Gaylord Opryland Resort & Convention Center. I’ve stayed at the Gaylord Palms in Orlando and I’ve heard about the one in Nashville and how massive it is. I knew they had plenty of restaurants and cool things to see so we hoped in an Uber to check it out.

This place is MASSIVE. We had dinner at the Solario Cantina, a casual Mexican restaurant. We had to wait for about twenty minutes for our table, which was fine, that gave us time to explore the sprawling grounds of the beautiful atriums. After dinner, we did the boat ride, which had a cute Alice and Wonderland theme. I grabbed some gelato and we watched the nightly fountain show. It was a perfect calm relaxing evening after such a busy weekend.

On our last day, we did a bus tour of Nashville, because we still had not seen everything. There are about 15 stops and you can hop on and off all day, we only had until lunchtime because of our flight, but it gave us enough time to enjoy the entire tour. We grabbed a quick bite to eat before we headed back to the hotel to check out.

Overall we had a fantastic time and would definitely head back there. We’ve already been looking up information for the next solar eclipse and where it will be.

My entire life my mom has always been my health care surrogate. She is the one I turn to when I am sick. Late night/early morning ER visits, overnight hospital stays, bringing me food, helping me shower, etc. This isn’t surprising, I was 9 the first time I had a colonoscopy.

As you get older, the roles people play in your life changes, as they should. New people come in and out of your life. This is something that everyone goes through. However, this is the first time in my life that the caretaker role in my life has drastically shifted. My boyfriend and I recently moved in together. Exciting stuff, right? For me, it’s such a normal milestone, almost too normal. I missed out on a lot of normal milestones growing up, so now it’s time to celebrate the good stuff!

 

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Checking out our new room!

 

Over the course of our relationship, Kevin has been there for me when I’ve been sick or simply when I wanted to stay in and just watch TV. When I dealt with my ovarian cyst issue earlier this summer (I’m actually still dealing with it because the cysts are back!), I leaned on Kevin more than I had in the past. He dealt with Miami afternoon traffic to get me to the ER (which was way on the other side of town). He stayed with me until I was admitted to a room at 2:00 a.m., even though he had class the following morning at 8:00 a.m., and even though I kept telling him to leave.

Adding a significant other to your list of emergency contacts is a big freaking deal when you have a chronic illness. Listing someone as your health care surrogate is pretty much the highest level of trust. I’m basically saying, I trust you with making decisions regarding my care in case I cannot. It sounds intimidating but I explained to Kevin that if that ever happens the doctors will/should explain everything in a way where you will be able to make decisions for me.

Yes, I am very excited about this new chapter in my life, but at the same time, I was nervous. I wasn’t nervous about Kevin, it was more of a mental block for me. The past year and a half have been amazing, I didn’t want to taint it with the burden of my illness. That’s the best way I can put it in words. I understand the best relationships survive the good and the bad, it’s just easier said than done for me to completely let go of this part of my life and let someone else take control.

He’s been willing since day one to take on more but I wasn’t ready to put that on him yet. Over the past few months, I’ve definitely allowed him to take on more as my caretaker or health care surrogate. Well, one time he just showed up at the hospital even though I told him I was fine, but I was glad he didn’t listen to me and was there. He was right. Don’t tell him I said that.

I’ve had to learn to rely on my mother less and lean on my boyfriend more. You don’t just go cold turkey and completely switch over. It’s a gradual change. Let’s be real, my mom is still going to be there and involved. We’ve even scheduled some of our doctor’s appointments together, typical mother daughter day, right? Haha.

In the mean time, I’m not letting any of my mental blocks get in the way of this new exciting chapter in my life. Yes, my mom isn’t going to be the first person I call now when I need to go to the hospital, but she will still be there whenever I need her. Some things don’t change.

One important thing that MUST happen when your significant other takes on more responsibilities with your health care: you have to have the TALK. Every person who lives with a chronic illness knows what I’m talking about. In the event that you are unable to make decisions regarding your care, what are your wishes? We are talking worst case scenario here, but you need to make people in your lives aware of what you want.

Having an Advanced Directive is a big plus. I have it all written out and signed, it’s super official. Making sure your partner fully understands what you would want along with having it in writing is one of the best things you can do.

I’m still going through this transition so I’m still learning here. The best thing I can say is to just keep your partner in the know as much as possible and let them take on more when it comes to being your health care surrogate.

Right now you can find me trying to find every form that needs to be updated with my new address and emergency contact information.

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Have I told you about the time I got my current (and second) colostomy? I think I’ve told the stories in bits and pieces. In honor of my stomaversary (although very late), I thought I would share this tale.

Let’s go back to Summer 2014. Life wasn’t that bad. I was working, trying to be social, and even dating! You can read about some of those stories in my Adventures in Dating post. I was also training for a half-marathon with Team Challenge on the international team, I had my heart set on running the Rock n’ Roll Half Marathon in Dublin.

There are times in our lives, well those of us with chronic illnesses, that we tend to forget we are sick or suppress it. Just because I’m sub consciously ignoring my illness doesn’t mean I’m not sick. I had been in a flare-up and tried to continue with normal life. I didn’t realize that if I was home I was always sleeping, or that I skipped meals and paid no attention to it. Red flags. I kept on trudging.

You can only ignore your illness for so long. Eventually, you will lose the battle. It was Friday the 13th and I had a date. It was my third date with Coast Guard Boy from Tinder. The date was uneventful, we had a great time, blah blah blah. I stayed in bed all weekend, I was running to the bathroom non-stop. I first thought it was from the food we ate Friday night. We went to this awful place called the Drunken Taco in Ft. Lauderdale. Sunday came and I felt like death. I started to notice something during one of my many trips to the bathroom. The tell tale signs of a vaginal fistula. In case you need me to spell it out, I had feces coming out of my vagina. Awful.

I was aware of vaginal fistulas, and had already had experience with another fistula, just not vaginal, which was a nightmare. I lived with it for too long and there was no way in hell I was going to live with this one. Out of the question. I was also in pain and just all around miserable. The following morning I went to the ER because I  needed instant relief.

surgery 2

I found out that I was severely anemic and in need of a blood transfusion and I was definitely in a severe flare up. No surprise, I was admitted. I received my blood transfusion later that evening, the team of doctors came by to ask me a million questions.

Both my GI and surgeon did not doubt me when I told them I had a vaginal fistula. However, there was a surgical resident who wasn’t buying it simply because he couldn’t see it with a CT scan. I rarely get angry, but when I have a young male doctor, who isn’t familiar with me and has only known me for five minutes, suggesting that maybe I don’t have a vaginal fistula, because maybe I’m not sure about my own anatomy, and then proceeding to suggest that many women continue to live with vaginal fistulas, yeah, well that will piss me off. I know the young residents are trying to prove themselves and I’ve had a lot of good experiences with them, but this one I wanted to punch. First doubting me and then telling me I could live with my vagina literally leaking shit. How would you like it if I told you to go live with a broken penis?!?

surgery 1

 

Anyway, this resident ordered a barium enema x-ray and I told him I didn’t want to do it. My surgeon knows I have a bad history with them and I only agree to do that test when it is absolutely necessary. The resident told me he would cancel the test. Great. Then an hour later I was taken down to radiology for that exact test I told him I didn’t want. The radiologist told me that the doctor is insisting I do the test. Not knowing that he was talking about the resident and not my surgeon I reluctantly agreed. The actual barium enema x-ray was not terrible, it wasn’t fun, but I got through it. It’s what happened after. The barium was so painful that they rushed me for a STAT CT Scan to make sure they didn’t perforate my colon. I spent all night throwing up and in severe pain, it was awful. The following morning my surgeon came in to apologize and I was told the resident had been put in time out, or whatever it is that happens to residents who make mistakes.

surgery 3

After I got through that ordeal I was sent home until my surgery was scheduled for the following week. I was able to go home and prepare everything for my recovery. Clean up, dig up my old colostomy supplies, take care of things at work before I had to take a month off, you know, the usual stuff.

surgery 4

The surgery was uneventful and I woke up in the ICU. I spent maybe 2-3 days there before being moved to the regular floor. Since the surgery wasn’t a laparoscopic surgery, I had a very large abdominal incision, which is incredibly painful. Do you know how often you move your abdominal muscles? Every. Time. You. Breathe. It fucking sucks to recover from these surgeries, I’m not going to sugar coat it.

surgery 5

I was in the hospital for about a week before I was sent home. They won’t discharge you until your bowels are working and you can tolerate food. It takes about 4-6 weeks for your appetite to come back, so you kind of have to force yourself to eat during this time. It’s not easy, and you always feel so weak, but it takes time.

Considering this was my second colostomy my adjustment was pretty easy. I knew what to expect. I did have issues with leaks in the beginning because I still had staples in my incision and everything was still swollen. I kept in contact with my stoma nurse and even went in a few times to see him for help. It was frustrating, but eventually, things got better.

The good news was my vaginal fistula was gone and I don’t regret taking drastic measures to take care of things. The doctors who didn’t know me kept asking me, “Are you sure you’re okay with getting a colostomy?”

Umm, hell yeah! Do you have any idea what it is like to live with Crohn’s Disease? An ostomy is not a cure, but it has been a total game changer. I won’t ever have a takedown surgery, there’s no point. Occasionally I’ve had some issues with my stoma, but I will take that any day over crapping my pants in public and all the many bathroom runs I made with my indoor plumbing. If you don’t have IBD you have no idea what that life is like. It’s miserable.

I originally wanted to write this post for my third stomaversary (June 27), however, if you read my previous post you can see why this was delayed. Short story is I got my second colostomy because I had a broken vagina and I lived to tell the tale. No regrets.

Oh, in case you are wondering (and didn’t read my Adventures in Dating post), Coast Guard Boy did not stick around after finding out I was sick. That’s okay because the guy I did meet not too long after this did stick around and he was worth the wait.

surgery 6