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 alligned, 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. 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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I’ve lost count of how many colonoscopies I have had, I can’t remember them all. However, there is one that I will never forget, I even remember the date. It was Friday, November 13, 2009. That’s right, Friday the 13th. I’m not superstitious are anything, but it’s something I remember.

Leading up to this colonoscopy I had not been in great shape for some time, I could barely go anywhere, I wasn’t working. Life for the most part sucked. I was miserable. All my friends were traveling the world and living life and I was barely able to make it out of the bathroom.

I had been seeing a new GI doctor for about six months and he was being very thorough. He had me on the highest dose of Remicade possible and we were hoping it would help close my fistula. It opened right below my belly button so I had disgusting fecal matter leaking out of it whenever it wanted. It was this awful blow hole and it pretty much ruined my life for a long time. I have nightmares thinking about it.

It was finally time to do a colonoscopy so he could see what was going on. The goal is always to avoid surgery, and at this point I had only had one surgery, which was a total nightmare. I was all for avoiding surgery again (and still am). I prepped for the colonoscopy with the pills and it was the worst. I did a recap of preps if you want to hear about how much I hated the pills. Don’t ever do the pills. It’s not easier, it’s worse.

The day of the colonoscopy was pretty typical, nothing unusual. When I woke up in recovery the nurse told me that I was being sent for an x-ray. This is unusual, but I was still kind of groggy and didn’t really ask questions. I was taken down on my stretcher to radiology. When I got there I waited and waited and waited. They told me they were waiting for a female radiologist. Why would I need a female radiologist . . . oh this can’t be good.

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A male radiologist came out to tell me what the exam was, he said it was a colorectography. Basically, it’s a typical CT scan EXCEPT they inject air through the rectum into your colon. What the what?! They told me it was necessary because my doctor couldn’t get the scope in during the colonoscopy. I reluctantly agreed (I now know I can say no and will refuse this test in the future).

I had to lay on my stomach on the CT bed while they inserted a tube to inject the air and it was extremely painful. THEN I had to lay still during the imaging process. They kept telling me to be still, but even if I understand what you are saying and the reasoning behind it, it doesn’t make it easier. As soon as they were done I hauled ass off the table (don’t forget I had been sedated earlier) and ran into the bathroom. There was blood everywhere, I didn’t even make it to the toilet.

I was still in so much pain by the time they brought me back to the GI lab. They brought my mom over to my stretcher and right at the moment she pulled back the curtain I started throwing up all over myself. Naturally this freaked my mother out and she turned to the nurses and asked what the hell did you do to my daughter!?

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I was miserable and now I was thirsty and they wouldn’t let me drink anything because the doctor hadn’t given me the all clear, but they were paging him. I went to the bathroom and drank out of the faucet, I didn’t care. I had zero fucks to give.

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My GI doctor at the time would make you go into his office after your procedure to talk to him, which I hated. Let me go home and go to sleep, this is torture. The news wasn’t good, my colon was in bad shape and that I needed to see a surgeon as soon as possible. I couldn’t really process any of this information, I was miserable and wanted to go home. I don’t think we got home until late afternoon, I probably showered and collapsed on my bed. I spent the whole weekend in bed curled up in the fetal position.

I now understand my patient rights and know that even if a doctor is insisting on a certain test/procedure I can always decline. No doctor has ever suggested I have this exam again and if they do I will most definitely tell them to take a hike.

I don’t want to scare anyone who is about to have a colonoscopy, I’ve had countless routine colonoscopies and felt fine afterwards. Typically you might be gassy and bloated afterwards, all you need to do is lay down and fart. Read my recap of what to expect for a typical colonoscopy here.

The first time I had a colostomy I was very quiet about it. I didn’t start talking about it until about a few months before I had it reversed. I never took a picture, and only told those that I was closest with.

The second time around (that’s right, I loved it so much I went back for seconds) I decided to embrace it a little bit more. Also, I had a little bit more confidence since I had turned to the online IBD community. When you have people cheering you on, it makes it a little easier.

I had jokingly told my mom that I would do a special photo shoot when I recovered from surgery. She went ahead and booked a session for me, I guess I didn’t have much of a choice. I was told not to starve myself before the photo shoot, empty stomachs can fill up with gas and become bloated. I had lunch with my mom at this great BBQ place right next to the studio in Wynwood, Pride and Joy. Amazing pork nachos!!

When I arrived at the studio they did my makeup and hair, and let me tell you, I don’t think I’ve ever worn that much makeup in my life. I wear very little day-to-day, and I’ve glammed up for special events, but this was intense. Later at night after I showered, it still took several make-up remover wipes to get everything off.

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The photographer was super cool, I explained to her that I was here to take pictures showing off my colostomy. I’m not used to having my picture taken, I tend to make goofy faces when someone is taking a picture and I can’t take it seriously. Honestly, it annoys me when people take pictures of themselves staring off into the distance. You’re not that deep, look at the camera! It’s a picture, you’re not in a Sophia Coppola film pondering life.

The photographer guided me through everything, she told me how to pose, where exactly to place my hands, feet, etc. She would tell me when to laugh and when to look serious. When she said, now look serious/sultry not confused, I told her my confused look is my serious look. At first I was a little timid, I was completely out of my element, but that was the point. It didn’t take me long to really get into it and have fun.

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One of the photographers told me that he also has Crohn’s Disease and was impressed with what I was doing. Small world. We went through all the photos, I picked my favorites (but we purchased the whole package), and some were selected for finishing touches. I have the photo shopped files saved, I’ve never posted them. I thought it went against what I was trying to do. When I compared them to the unedited versions the changes weren’t that significant.

The next day I picked one photo from the 400 and shared it with my friends, family and the world (or my 1500 twitter followers). Everyone’s supportive comments were overwhelming. I’m not sure I can put that feeling into words. I took something that has been a black cloud, something that I’ve been ashamed of, and turned it into something fun and beautiful.

I think this is something anyone can relate to. We envy this perfect body image, and lets be honest, it’s not real. These images of perfect stomachs that are plastered over the covers of magazines are shoved down our throats, so when we look in the mirror and see that we are different we feel ashamed or disappointed. I’m glad I don’t look like those models. I’m glad I’m different. It may have taken me awhile to get here, but I’m proud of my scars. They are proof of all the battles I have won and reminders of how strong I truly am.

I highly recommend that all women (not just women, guys too!)  should do this at some point. You can look up studios on Groupon, that’s where I found Image 1st Miami. If you are in Miami, I highly recommend them. Great service!

I’ve shared a few of these on Twitter and Facebook over the last year, but here are a few of my favorites.

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Thanksgiving is my favorite holiday. Food and family, it’s everything I love! When I was 17 I had the flu and despite barely being able to hold my head up, I still tried to participate. I remember putting just a spoonful of mash potatoes on my plate and a tiny piece of turkey and looking down at my pathetic plate and realizing I should have stayed in bed. I wasn’t about to miss out on Thanksgiving. The year before that I was admitted to the hospital for a  flare-up a few days before Thanksgiving. I basically begged the doctor to discharge me the day before Thanksgiving, even though I should have been in another day or two. He reluctantly agreed to my pleas.

 

There are things that are outside of our control, hello Crohn’s Disease and the flu. However, there are some things that we can control. Like avoiding foods that can be upsetting to our stomachs, enter my home made corn souffle. Growing up this was my favorite dish, my mom’s friend made it every year, and I was always the first  one to grab a serving, and then go back for seconds and thirds.

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The famous corn souffle that I made this year!

This year I made it for the first time by myself, quite an accomplishment at 31. I decided to make it for the Thanksgiving pot luck at work. Normally I sign up to bring drinks and paper goods. Everyone was shocked that I made something and probably equally shocked that it was good. I had a little, knowing that it was a risk and I end up being okay.

It all went downhill later that day. I got cocky. I made an extra plate of leftovers to bring home for dinner. I don’t mind eating Thanksgiving food every day of the year, I will never get tired of turkey. Pack up all the leftovers. The night before Thanksgiving, I heated up my potluck leftovers and decided to relax and enjoy my food. Thanksgiving morning I woke up and wasn’t feeling great. I didn’t eat all day, and then the painful SHARP cramps started to hit me. I made it to our friend’s house and sat down and thought I can get through this. My plan was to eat very little and power through with a smile on my face. I enjoy everyone’s company, I didn’t want to miss out. FOMO is a side effect of most chronic illnesses. After about five minutes I decided it wasn’t worth it. I grabbed an Uber home, took a hot shower and a Percocet and tried to sleep it off.

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I knew it was a partial obstruction and I knew it was my own fault. I planned to try and weather the storm. If I could get through the night and make it to the morning everything would be okay. If morning came and I was still in pain, I would go to the ER. I know the drill, they give me some pain meds, see how bad the obstruction is and usually send me on my way. Every ER trip is $300, and a pain in the butt, so I try to hold off unless I am absolutely miserable. Midnight I woke up and threw up a lot, which concerned me. Of my typical symptoms, vomiting isn’t one of them. I cleaned myself up, drank some fluids (you don’t want to get dehydrated), and waited a bit to for my stomach  to calm down so I could take another pain pill. I didn’t want to take something and then immediately throw up.

I started watching The First Wives Club on Hulu, a 90s gem. Honestly, streaming services are a life saver. Back in the day I would just watch infomercials at 2 a.m. I knew a lot about the George Foreman Grill.

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You got to love the drama in an infomercial

Morning came and the pain had subsided. I knew the obstruction had cleared and to take it easy. I pretty much avoided food most of the day and then had soup for dinner. I still had a long weekend to enjoy, I wasn’t going to ruin the rest of it. If I didn’t tell you about my horrible Thanksgiving, you wouldn’t know, unless you paid attention to the fact that I just had a little soup Friday night.

I’ve had Crohn’s Disease for 16 years, this isn’t new information. I know what foods I should avoid, I know better, and yet I still find myself being a complete moron. I ruined my favorite holiday because I couldn’t resist a serving from my favorite entree. It wasn’t worth it. I’m not saying the corn souffle was bad, it was really good, but it wasn’t worth the agony I endured all night. I really hope I learned my lesson, but I’ve been known to repeat my mistakes.

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All GIFs courtesy of giphy.com