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.

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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.

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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?!?

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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.

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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.

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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.

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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.

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It seems almost like clock work that my body goes nuts every summer. Maybe it’s the heat, maybe Mercury is in retrograde and my chakras aren’t aligned, maybe it’s a coincidence, but really it’s just life with a chronic illness.

So where have I been and why haven’t I written a post in over a month?! May and June were both really hectic times for me at work. Usually I blog on my downtime at home and honestly, after a very long day of working on a computer, I didn’t feel like writing some blog posts during my down time. I needed to not think and just have some mindless binge sessions and lots of sleep.

Towards the end of June, I had a painful day that I associated with Crohn’s Disease because you know, if my stomach hurts that’s typically the reason. When it got really bad I went to the ER for pain relief and after a CT scan, I was informed that I had an extremely large ovarian cyst. Now, my gynecologist had been monitoring this for the past year with outpatient ultrasounds and in May he told me that it was getting bigger and we would need to have more tests done and think about removing it.

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Ovarian cysts are common for women and are usually harmless. I’ve had them off and on for years, but they’ve never been a problem. They tend to go away on their own. When they don’t, doctors intervene and surgically remove them with a simple laparoscopic procedure. With my complicated surgical history and less than stellar abdominal anatomy, my situation becomes a little bit more complicated.

My gynecologist would normally perform this procedure, however, he said my case needs to be handled by someone more equipped, a gynecologist oncologist, even though it’s not cancer-related. I can’t tell you how much I appreciate a doctor admitting that they need help. I spent the 4th of July weekend in bed drugged up on pain meds. Ugh. The situation was not improving. I had some follow up appointments scheduled, but in the mean time, I was suffering.

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I can hear the fireworks and smell the holiday BBQs from my bed!

I attempted to go back to work and it was a terrible day. No one was surprised that I ended up back in the ER the following day. I’ve been going to the same hospital for the past 8 years, all of my doctors are there and it’s great because they can all access my medical records and see my history. When I was in the ER for the second time I was informed that they did not have a gynecologist oncologist on staff to help me. WTF? I started to cry because I was going to have to find a new specialist and then try and get an appointment, which can take weeks, if not months! However, the ER doctor had been talking to my gynecologist who said he was going to find a doctor that could help me that day. By the time I got home my doctor called me with the name of a gynecologist oncologist who was about an hour away from me, but was waiting to see me that day! Um, that never happens.

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So many ultrasounds!

I made it, with the help of my mom, to the new gynecologist oncologist. The thing about seeing a new doctor is that you have to give them your entire medical history and you’re not sure what you are getting into in terms of how they treat patients and bedside manner. I don’t like change when it comes to my doctors. The GO (gynecologist oncologist) was great and had been informed of my complicated history. In fact, my gynecologist is the one who trained him. I was in good hands. He explained my options. They could operate to remove the cyst, start with a laparoscopic surgery and open me up if it was needed, but he wouldn’t know until he got in there. Recovery time from a full incision is about 4-6 weeks and extremely painful and difficult. When he examined me he noticed my colostomy, which he didn’t know I had. This changed everything. Surgery was going to be very complicated. I’m pretty sure this is where the tears started to build up in my eyes.

The GO then gave me another option. A radiologist could attempt to drain the cyst with Interventional Radiology (IVR). They would basically stick a needle in my abdomen to reach the cyst and drain the fluid. This sounded like a much better idea than cutting me open. Again, there was a possibility of this not working, but it was worth a shot before we put me on the operating table. The GO said he would have his office try and schedule it as an outpatient in the next few days, however, if the pain becomes intolerable, just go to the ER at the hospital he works out of and I could be treated as an inpatient.

The next day I was back in the ER, but at the new hospital. It was so weird, not knowing where anything was, nothing about me in the computer. I had some of my test results on my iPad and showed the medical staff in the ER. At about 2:00 a.m., I was finally in a room and drugged up to be kept comfortable.

The IVR team doesn’t work on the weekend so I had to wait until Monday to have the procedure. They sedated me to keep me comfortable and when I woke up I had a drain on my lower left side. Flashbacks to my first surgery, where at one point I had four drains in my stomach. Gross. PTSD. Two days later they removed the drain and sent me home.

I’ve been exhausted from the entire ordeal, but happy that they could find a better solution to the problem than surgery. Unfortunately, the cyst is still there, just not as large. I basically had a large mango sitting on my ovary and crushing my bowels. They removed over half a liter of fluid, yikes. The cyst was almost 14 cm and after being drained it was down to just under 5 cm. For reference, an ovary is on average 3-5 cm. It’s still something to monitor.

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I don’t know how I survived hospital stays before I had an iPad?!

I’m back in the swing of things, slowly, and preparing for a big move. Big changes are happening in my life and it’s nice to have some happy milestones amidst the crazy. For example, I signed the lease to a new apartment with my boyfriend in the ER. I have to laugh at that. This big and exciting moment in our lives happened in the waiting room of an ER. This is life with a chronic illness, you just make it work.

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I thought I would dabble in writing about some of my little travel adventures. I did an entire post about tips for traveling if you have IBD, but this will be a new category  about actual trips I’ve taken, and occasionally I’ll have my own little Crohn’s spin on it.

Over the Memorial Day Weekend we ventured off to Key West. I live in Miami and Key West is about a 4 hour drive. I used to go to the Keys when I was a kid all the time. Before this trip, the last time I was there was on a high school trip when I was 16. The drive is not fun, there is only one road and sometimes the speed limit is 30 MPH. If there is an accident, there is no alternate route. I have a beach minutes from where I live, so a drive to Disney has always been more appealing.

However, Go Busses opened a new route from Miami to Key West and had a special deal of $9 one way. My boyfriend and I decided what the hell, lets do it. Spending $36 round trip for the both of us was cheaper than gas one way . Also, not having to worry about doing the driving was a big plus.

To my South Florida friends, or friends who are venturing to Miami and are also looking to hit up Key West, I highly recommend making the trip with Go Busses. We were on the double decker coach bus, we had the front seats on the second floor, which came with an awesome view of the trip. They give you water, power outlets so you can charge your phones/tablets, there is wifi, but I didn’t really use it. There is also a bathroom which is a plus for many of you, including myself.

We made it to Key West at about 11:00 a.m., perfect time to drop our bags off at our adorable Bed and Breakfast, The Grand Guesthouse. Our room was ready for us, even though it was before check-in time. I grew up in the Hospitality Industry, so I’m well aware of the general check-in guidelines. If our room wasn’t ready we would have left our bags and come back later. We weren’t there to just hang in our hotel room.

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After check-in we rented bikes from the hotel and biked our way to meet some friends for lunch. It was interesting trying to GPS on my phone while riding a bike, but I made it work. We found our friends at a brewery and enjoyed some drinks before heading to find some food.

I forgot to mention that Uber/Lyft is not available in Key West. Key West is pretty small, but when it’s hot as hell and you have your luggage with you, sometimes you need a quick ride. I tried to flag down a cab and was told he was already dispatched and had to pick up the person who called him. I then called and after a few minutes flagged down another cab, who told me you can’t flag down a cab if you called for one. So annoying, but all the cab drivers were super friendly and always giving us tips on what to do. I don’t know how they’ve kept Uber/Lyft out of Key West and I probably don’t want to know.

We decided to eat at The Gas Monkey on Duval Street. It had food and A/C and it was brutal outside. It was your typical local Key West bar. After my not so nutritional lunch and a strawberry daiquiri, it was time to hop back on our bikes and head to the Hemingway Home & Museum.

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If you combine the greasy sandwich, daiquiri, lack of water, record breaking heat, early start to the day, Crohn’s Disease I’m sure, and a bike ride you are asking for trouble, which is what I got. I was leading the way to the Hemingway Home & Museum and felt really tired all of a sudden. I thought maybe it was because my body just isn’t used to this much physical activity and it’s only a few blocks I can endure it, right? Wrong.

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I stopped at Mile Marker 0 (Good photo opt) to take a sip of water and catch my breath. Then all of a sudden I felt like I wanted to go to sleep, I could barely lift my arm to drink from the bottle and I wanted to throw up. I abandoned my bike on the side of the road and my friends helped me find spot in the shade to sit down. I immediately sat on the floor, my legs couldn’t even support me sitting on a ledge, I had to have my butt on the ground. Kevin was right by my side telling me to take deep breaths and counting with me. My friends ran into the bar (It’s Key West, you’re always right by a bar) to get some ice which was a life saver. Kevin put some on my head and I sipped ice water. I had this weird metallic taste in my mouth. It was very scary. Now, I’ve grown up in Miami and I am used to the heat, but this had never happened to me.

We didn’t rush, we just stayed there.  After about 15 minutes I slowly got back up and went inside to use the bathroom. Kevin didn’t let go of my hand as he walked me through the restaurant. He kept a watchful eye on me. After my scary episode we walked the remaining block to the Hemingway Home and Museum to do some sightseeing. Even though I’m not a big Hemingway fan, I love that house. I love history and cats, so this place is perfect for me. The cats are so chill and are used to all the tourists taking their pictures and petting them. Be warned, you can only purchase tickets with cash, they do not accept credit cards, even in the gift shop.

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After the Hemingway Home and Museum we had some down time before our evening plans. Our hotel was about a ten minute walk away and since I was recovering from Heat Exhaustion we just walked slowly along shady streets. No actual bike riding (we had to get the bikes back to the hotel otherwise we would have just grabbed a cab), but I made it. I took a nice cold shower and laid down for an hour and felt a million times better. I was nice and refreshed and ready for our evening.

My friend Liz  scheduled our evening activities, she’s a big fan of Key West and knows some of the best spots so I trusted her judgement. We had dessert at Better Than Sex, which is an experience in itself. I’m not a big chocolate person (unless you are talking about white chocolate), but I still enjoy a good dessert. It was great and reasonably priced. For our party of six, we spent about $15/person.

I was laying off alcohol, one I’m not a big drinker, two, after my little episode I wasn’t taking any chances. I had one of their virgin drinks, the Goo Goo. Which is ginger ale in a champagne glass with caramel around the rim. Interesting combo that I wasn’t sure about, but loved. A little messy, but when in Rome, or Better Than Sex, go all out.

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After Better Than Sex we headed to the marina because we booked a private Star Gazing Night Time Sail. It was $300 for an hour and up to six people. They provide a cooler, ice, water, soft drinks, and cups. You can bring your own alcohol. We brought champagne to add a little something to the evening.

The night time sail was perfect after suffering in the Florida sun all day. The water was calm and there was a nice cool breeze. Once we sailed further away from the coast and lights of Key West were able to really see the stars. I don’t have many pictures because it’s not something you can really capture and we were living in the moment.

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On the way back, our sail boat got stuck thanks to low-tide. Now, the water was about one foot deep, we could see the coast in the distance, we still had plenty of beverages, and most importantly we all had service on our cell phones. We weren’t exactly reaching for the flares. It took about an hour, but our captain got us moving, right before the Sea Tow showed up. In the end we got an extra hour out of our star gazing sail, no complaints here.

The next day we slept in a little, we were exhausted from the day before. The Grand Guesthouse has a free continental breakfast every morning. Your basics, which is all I need. I’m usually not that hungry so early. I had a bagel and a hard boiled egg. I wanted to make sure I ate a little better and drank plenty of water. We biked back downtown and met up with our friends again.

More walking around and exploring and even a visit to the Key West Aquarium. It’s been around forever, a little small, but if you have the time it’s worth a visit. We walked around a bit more before deciding to head indoors to have lunch, Cuban food this time. We stumbled on the same Cuban restaurant that I went to when I was in Key West with high school back in 2002. It looked exactly the same. Also, it was nice, dark, and cool, just what we were looking for. It wasn’t packed so we were able to have a leisurely lunch and take our time. I think we were there for three hours.

After lunch our friends headed back to Miami in their car and Kevin and I took the World Famous Conch Tour Train around the island. We got the full tour, even though we had already seen some of the sights, but also heard a little bit more about the history of Key West. There are a few stops after the tour and you can get off and on all day, however it stops running at 4:30 p.m.

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We ended our trip by biking back to our hotel to check out. We had some time so we enjoyed the The Grand Guest House Happy Hour and just relaxed in the common area before heading back to catch our bus home.

Now that I know about Go Bus, I can’t wait to go back, probably after Summer when it is a little cooler, and when I go back I’ll make sure to hydrate better. I would love to have more time to bike around the island, it’s the best way to see Key West.

Key West is great and for all my Crohnies if you are walking around and looking for a bathroom just go to any bar and walk towards the back, that’s what I always do. There’s a bar on every corner just about. If you happen to be on a cruise and have a stop in Key West, make sure you get off to walk around, get some Key Lime Pie, have a drink and see some of the sights. It’s definitely worth a visit.keywest4

 

Have you ever wanted to have your DNA tested? Not in the “You are not the father” kind of way. Wouldn’t you like to see a report on your genetics? Find out if you are a carrier of a genetic disorder? 23andMe is a company that was founded to empower individuals and develop new ways of accelerating research. They believe having access to one’s genetic information is good. How could it not?

They offer a home-based kit for you to send your DNA to the lab (you just spit in a tube, no blood or anything extreme) and then after a few weeks you receive comprehensive reports about your DNA.

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The Health & Ancestry service is $199 and the Ancestry service is $99. I was able to try out their service at no cost, as long as I agreed to enroll in a study about understanding the role genetics play in the onset and progression of IBD. 23andMe partnered with Pfizer (a manufacturer developing new drugs to treat IBD) to learn how our genes and enviornment could play a role in IBD drug treatment, and how they relate to IBD risk and progression. There still is no cure, and there are treatment options, but some crohnie veterans are running out of options because for me some treatments don’t last like they used to or I don’t even respond to it. Research is vital to finding more treatment options and maybe one day an actual cure.

After I signed up and 23andMe confirmed with my doctor that I do in fact have Crohn’s Disease they sent me a kit. In the kit there was a tube and little plastic bag. I had to spit in the tube (enough to fill it to the line) and put it back in the box and ship it back. Postage was already taken care, all I had to do was seal the box. It took only minutes.

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The website says that results take 6-8 weeks, however I got mine back in less than 3 weeks. My mom also completed the test and we linked our reports, which is pretty cool. I also confirmed I am her daughter.

The Maury Show DNA test the results are in

Reading my reports was fascinating. For instance, they are able to tell that I have a 60.78% chance of having no unibrow. I have a 90% chance of having no cleft chin (I don’t).

Carrier reports are extremely useful. For instance, since my mother is Jewish there is a small chance that I could be a carrier for Tay-Sachs Disease. My father is Catholic so the chances were slim. If both parents are Jewish most doctors will tell you to be tested before having children. The report indicated that I am not a carrier, or a carrier of any other genetic disorder that can be detected.

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My ancestry composition was pretty cool, but not surprising. I’m 100% European, in other words, I’m white.

All in all, this was a really cool study to participate in. The IBD study is now closed, but you never know. If you ever have a chance to participate in something like this, don’t pass it up.

I was not compensated for this post. My opinions are my own.

The first few years after my diagnosis I was told that my case wasn’t surgical. At first, my doctors discusses removing my colon because it was basically garbage, but the disease was also affecting my small intestines as well and they decided there was no point. Putting me through a major surgery was not worth it if I was still going to be suffering afterwards. Made sense. I didn’t understand that this could change, because it did, drastically.

About 7 years after being diagnosed I had graduated from my pediatrician and now had a new doctor at the adult hospital. Lame. I’m 31 and would still go to the children’s hospital if they let me, which they don’t. I had a new doctor that I barely new and it was a bit of a shock how different it was. I was surrounded by sick adults and that was scary.

During this transition I started to have bad days that consisted of constant sharp pains, but the pain would subside the following day. Since the pain didn’t last I didn’t think much of it, clearly it’s not a lingering problem if the pain goes away, right? The title of the post is a spoiler, so you know where this story is going. Everything was fine and world piece was also declared.

After a few months, those painful days become more frequent. Then one day everything changed. I was visiting with family that was in town and I was fine, slowly the pain started to take over. I ended up curled in a ball on the floor. I asked my brother to take me home, I couldn’t drive. I got home and ran for the shower. A hot shower, ginger ale and bed would take care of everything.

My mother stepped in when she saw that I was curled in the fetal position. She called 911 and I finally caved and started crying. Yes, this is the worst pain ever, do something, call in the national guard, just make it STOP!

The ER doctor was not nice, he pressed down on my stomach, which I get he needs to do, however it made me scream out in pain, so he did it again. His bedside manner was lousy, I was scared and he could have been more empathetic and calming, he honestly didn’t seem to care.

I was in and out of it but remember waking up again in pain and seeing my mother at the foot of the stretcher, with her head down, barely asleep, worried sick. I hated that sight. The not so caring ER doctor finally came to talk to us. He explained that I had an abscess and was probably going to need surgery. He seemed happy to get us out of his hair, we were now the surgical team’s problem.

I barely remember being admitted, they loaded me up on all the drugs. The surgeon came in to talk to us and tried to explain that I needed immediate surgery, but he didn’t have a lot of answers. I wasn’t used to doctors not having all the answers. I was scared. The surgeon didn’t know if I would end up with a colostomy, didn’t know how much intestines he would need to remove, all he knew was that I needed surgery and I needed it right away.

I wanted to someone to tell me that everything was going to be fine, this happens all the time. No one could tell me that, there were too many unknowns.

Pre-op was scary. I don’t know if the pain or the fear was more overwhelming. I was still curled in the fetal position when the nurses asked me for another urine sample (did one the night before in the ER). My mother stepped in and said that I could barely move, they decided the pregnancy test from 12 hours before would suffice. I was in so much pain I couldn’t grasp the pen to sign the consent form. I think my mother signed it for me, I honestly can’t remember.

My brother came to see me in pre-op and he managed to help me calm down somehow. It wasn’t long before I was taken in and put under the anesthesia. I woke up in recovery for a brief second, I knew that I had made it through surgery, but didn’t know all the gory details. My mother filled me in when I woke up back in my room. I had a drain, no colostomy, put the abscess had burst and perforated my colon.

The doctors told us that a patient is discharged after about 5 days post-op. They warned me that I wasn’t going to be discharged if I was having fevers, which I was. I was barely able to get up, I was so lethargic. I asked them for TPN and a PICC line. My veins are so crappy that a PICC line is necessary. TPN is great because I’m basically being fed through my veins and I was not eating a thing.

I ended up staying in the hospital 9 weeks, which is insane. It was a total shit show and nightmare. I’ll get into that in another post, it’s a long story. Emergency surgeries are not fun and basically a living hell. Thankfully every surgery since then has been planned (well, almost).

This is one of those worst case scenarios and I don’t want to alarm or scare anyone reading this. I have a severe case of Crohn’s Disease and several things contributed to everything going wrong. I ignored symptoms for a long period of time, if you take anything away from this please see your doctor when you are in pain. Pain is a signal from your body that something is wrong! Learn from my mistakes.

Even though life with an ostomy has been great, there can still be issues. Having an ostomy is not a cure for IBD. I don’t want to worry or alarm anyone with an ostomy, but there is a small chance that a minor complication may arise. Wound Care Advisor did a great post about stoma complications that you can read.

Lets go back to February 2015, about 7 months post ostomy. I was starting to have leaks all the time, occasionally it happens, but I could barely go anywhere, and on top of that I was having a bit of a flare up. Not a fun time. I was supposed to run in a half marathon around that time and I ended up dropping out and giving my spot away.

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I assumed the many bag leaks were due to the flare. A higher output, especially a more liquid formed stool, can compromise your seal. At one point, as I was cleaning my stoma and I noticed it looked smaller. It was practically beneath the skin, which makes it impossible to put a secure seal on. For the record, a normal stoma protrudes about 2 – 2.5cm above the skin. A quick google search confirmed (AND a trip to my surgeon) that I had a retracted stoma.

A retracted stoma is usually caused by obesity, a significant change in weight, tension of the intestine, poor stoma placement or a thick abdominal wall. We weren’t really sure what caused mine, it had nothing to do with my weight.

My surgeon sent me to a wound care nurse. The first option is never surgery, you must exhaust all other avenues first. The wound care nurse was very helpful, however, didn’t really provide me with any new tricks. I was already doing everything that one could in that situation. Thanks friends on twitter! However, I don’t want to discredit her, please don’t miss an opportunity to speak to a health care provider over advice you find online.

I spoke to Hollister and they sent me a bunch of different wafers to try out. There are different cuts and shapes that are designed for smaller/retracted stomas that can help “push” it out. I always use a convex wafer since my stoma was small post-op. I tried different rings, paste, anything and everything I could get my hand on. I was a mad scientist of ostomy supplies.

Changing your bag too often can irritate your skin. Just think, you are pulling off adhesive from your skin, it’s going to do some damage. My skin is sensitive, so it wasn’t long before it was irritated. Problems on top of problems because now it is impossible to put a new bag on. I would use a prescription ointment (Which is a big no no, your wafer will not stay on), dab it down. Then apply stoma powder to absorb the ointment, remove the excess powder, followed by a skin barrier prep to cover the powder. This would allow me to get the bag to stay on for a day or two, enough time to let the ointment heal my poor frail skin.

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It was a nightmare, I would honestly hold the bag down when I felt output coming out. I remember being at a lunch meeting and worried about a leak. It was mentally exhausting. I retreated from public life for a bit, why would I risk a leak out in public. I would go to work and then home, which is my typical behavior when I’m sick (or trying to save money).

After about 6 weeks I went back to my surgeon. He had hoped that the stoma would protrude on its own, which is the case for most people suffering with a retracted stoma. Since my stoma failed to pop back out, I had to undergo another surgery. Groan. The good news was that this would be a minor surgery, two days in the hospital top with no major incision.

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A month later I was preparing for my fifth surgery. I had to do the usual pre-op check (blood work, EKG, chest x-ray) and a bowel prep (I did the Miralax prep). My surgery was early in the morning on a Thursday in May 2015 and I was out by Saturday afternoon. I didn’t even need pain meds for home, it was no big deal. Well, it was surgery, so kind of a big deal, but the ordeal itself was nothing.

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Following surgery my stoma was HUGE, but went down because the enlarged size was due to post-op swelling. Life is so much better when you can trust your ostomy, you can go and actually have a life.

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If you have any questions about retracted stomas hit me up!

I’ve gone back and forth on writing this. How do I begin to tackle this topic? I was single for much of my twenties, so I have some stories. Crohn’s did sideline me for a few years because I let it get the better of me. I thought I would share a few  stories of my dating adventures from the past. This isn’t a post with tips or advice, just some funny moments from my previous dating adventures.

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Lets begin with Mr. No Cake. I would give them nicknames in my phone, nothing degrading (unless they deserved it),  just to make it a little less intimidating and try and have fun. Besides, why learn names and get attached? Mr. No Cake hated cake and bread and everything that I liked. In fact, on our first date I told him that I don’t trust people who don’t like bread, while I was shoving dinner rolls down my throat. Not sure if I need to tell you that I love bread. He immediately told me that he doesn’t like bread. Weirdo. I ignored my instincts and continued to get to know him, despite this glaring flaw.

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After a few dates things were starting to get serious, we were talking all day every day. I thought I liked this guy a lot and I was pretty sure we were hitting it off. After our third/fourth date, can’t remember which one, hands were roaming and I was worried that he would notice my scar. I had mentioned previously that I have Crohn’s Disease, but I kind of down played it. He didn’t know anything about it, and I didn’t really enlighten him. All he asked was, “But you’re okay now?” I said, “Sure . . .” In the middle of making out with him I awkwardly blurted out that I have scars (no colostomy at the time). I showed him and he only really asked when they were from. There were no real follow up questions (red flag) and not much really said after that. The date ended and I didn’t pick up on his disinterest. He stopped responding to my messages after that and I never saw him again. Really dude??  A month later I was in the hospital having major surgery, it was good I found out sooner than later how superficial he was.

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Lets move on to Coast Guard Boy. Nice guy, we had some fun together. I think we went out on three dates, on the last one we both got pretty drunk. Looking back on that I can’t believe how stupid I was to get drunk with someone I barely knew, but thankfully everything was okay. Stupid younger me!

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A few days after our last date I ended up in the ER. I never even told Coast Guard Boy I had Crohn’s Disease. How would I tell him that I was in the ER? He was traveling for work and was texting me from the airport while I was laying on a stretcher. I didn’t tell him where I was or what was going on. By the time he was back in town I was getting ready for major surgery. I sent the world’s most awkward text. Something like, “Hey . . . so I have this chronic illness and I’m having surgery tomorrow, no big deal, I bounce back fast.” So ridiculous. My surgeon was curious to know if he would stick around. Well, he didn’t. He told me to feel better and then I never heard from him again. I didn’t expect anything, and I was so consumed with prepping for a major surgery, that I barely had anything left in me to be remotely upset about it. All my energy needed to go towards my health.

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So brace yourself for the story of Dr. Hawkeye. We met one night and well, I ended up having a one night stand with him. He was a surgeon. Nice guy, he didn’t care about my scars. Clearly. Several weeks later I ended up in the hospital because I had a vaginal fistula. You don’t get vaginal fistulas from sex, that’s not what happened. Crohn’s Disease causes them and in other cases child birth can cause a vaginal fistula. I was able to laugh at my situation. I was in the hospital with a broken vagina and my recent one night stand happened to be a surgeon at the same hospital. Hysterical. This actually happened, I’m not lying. How can you make this up??

Dr. Hawkeye did find out I was there and came by to visit me. My mom thought he was a doctor who had ordered a test that made me sick and almost yelled at him. No mom, this is my one night stand. Talk about being in an awkward situation!

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I’ve also dated multiple guys with Crohn’s Disease. It was great because I knew this person completely understands and I don’t have to explain anything. Each instance didn’t work out for one reason or another, nothing tragic. Sometimes it doesn’t always click. You kind of need more in common than just inflamed bowels.

There was one Crohn’s Boy (his actual nickname is his last name so I will omit that from this story) who I went on a few dates with years ago. We actually met at a speed dating event, really fun, do try it if you are in the market. He was very nice, but we really didn’t have much in common. We were supposed to have a Saturday night dinner and I wasn’t feeling great. I asked for a rain check and he said he would check on me in an hour to see if I changed my mind. I expected someone with Crohn’s Disease to understand that this isn’t a “one hour thing” it’s more of a “I’m done for the day, kthxby.”

He sent me a nice text two weeks later and that was that. We weren’t on the same page, no harm done. That’s dating.

I almost forgot about the law student (he was around before I gave nicknames, boring). We met for bowling one night, weren’t we cute? He asked me to tell him a random fact about myself. At the time I had a colostomy (my first one) and all I kept telling myself was “Don’t tell him you have a colostomy! Don’t tell him you have a colostomy!” Instead I blurted out, before I threw the ball down the lane, “I have Crohn’s Disease.” Maybe not the best moment, and probably not the random fact he was looking for. I think before our third date he told me he forgot about other plans he had and we would reschedule. Still waiting for that rain check. Not sure if he bailed because I have Crohn’s Disease or my bowling skills were sub-par.

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There were others, many were nice, others not so much, but that’s life when you are putting yourself out there and meeting new people. It can be awkward, intimidating, and nerve wracking, but it can also be fun and totally worth it. Currently I’m in a serious relationship and he was worth the wait. Bad dates are worth it in the end, because when you find someone you really do know how to appreciate them. I’ve learned to open up during my more vulnerable moments and let someone in. He has been very supportive and is constantly asking those follow up questions. Red flag if there aren’t follow up questions when you tell someone you have a chronic illness.

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For those that are dating, all I can tell you is to have fun with it and don’t let it get you down. No one is worth your aggravation, try and find the humor in it if you can. Did you not read the part where I talked about my broken vagina?! I’m still standing.

Names have been changed, not to protect anyone, but because I don’t want to deal with any nasty emails. If they didn’t want me to talk about them then they shouldn’t have been such assholes.

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