Dating is hard. I kissed more frogs than I care to admit before meeting my husband. I went on dates with literally every kind of guy you can imagine, everyone from the tall, successful businessman to the guy whose picture looked nothing like him to the guy who "forgot" to mention that he still lives in his mom's basement at age 34 in his dating profile. I have too many stories, so many that some days I wonder if I should write a book!
It has taken me a decade to be so open about the fact that I deal with Crohn's Disease. When I was dating guys before I met my husband I wasn't "out" about my disease until it became a necessity -- say we were on a date and I had to visit the bathroom multiple times, then I would explain the bare bones version of Crohn's: "I have a weak stomach and don't digest certain foods well".
I remember the first serious boyfriend I had, and I knew I would have to "come out" to him about having Crohn's disease once we started dating seriously. I was insanely nervous to do so...what would he think of me? Would he see me differently? Would I unintentionally push him away?
Kudos to that dude because he handled it like a champ. The response was something like "oh...good to know, thanks for telling me". I never went into detail about my Crohn's experiences when I was with him even though we dated for over 3 years. He knew about my struggles, but he didn't know the inner workings of Crohn's because I didn't like talking about it. I was embarrassed. I really didn't see him on a daily basis so he never saw me day to day, where I was fine one minute but on the couch in the fetal position the next.
I vividly remember on my first date with my husband I was having Crohn's issues. I visited the bathroom twice within the 3 hours we were at lunch. I remember cracking a joke: "oh you know, I just drank 3 glasses of water! Goes right through me!" Yeah. Right. Of course at the time I had no idea he would eventually become my husband, or even that we would start a serious relationship. I was also still "in the closet" with my Crohn's, how could I open up to this guy???
It's hard to know how much to disclose and when to disclose it. I personally only opened up to guys I dated for a substantial amount of time about my issues because I knew if they spent enough time with me they would notice something wasn't quite right. For my husband that happened within the first month or so of dating. He was visiting and I was feeling miserable. I gave him my "oh I have a weak stomach and can't digest certain foods" explanation. Which I mean, I guess that's true in a way, but Crohn's is so much more complicated than that. I remember when I wasn't feeling well he would make me dinner and let me relax on the couch. I found out later that he had done some research on Crohn's to know more about it so he could better support me. (Keeper, I know! :) ) Eventually we had been dating for a year and we got engaged, then he saw my decline to what was one of the worst moments I've ever experienced with Crohn's. He showed me that he was in it for the long haul and took care of me in so many ways.
I remember wondering: How do you explain Crohn's when someone is just getting to know you and starting to date you? I have an insanely supportive husband and here's my take, if I could go back and talk to my single self:
1. When you feel the time is right, talk to them about it. It's ok to wait a while before you disclose your deep inner secrets about your gut! I know the topic feels embarrassing and can be awkward to talk about, so give it some time if you need it. On the same token though, don't feel like you can't talk to your significant other about your gut. They need to know!
2. Remember that this person needs to know about your condition, especially if the relationship will get serious. It is hard to hide Crohn's Disease. I did it for 10 years so I know. It is even harder to hide Crohn's from someone who is closest to you. There will be times when something doesn't agree with you. There will be times when you have to use the restroom twice within 10 minutes. It is easier to disclose that information sooner rather than later so that they can support you and be there for you. Trust me.
3. Be honest and educate that person. When you open up to your significant other, whatever that timeframe may be, educate them on your condition. IBD is challenging to begin with and it affects your daily life. It is vital that the person closest to you understands what you deal with and what is going on internally. My husband is my biggest supporter and best cheerleader because he understands what I am going through and makes an effort to help me out whenever possible. He knows when he needs to let me rest and he picks up the slack, hands down.
4. It's ok to fart in front of your significant other. Seriously! Full disclosure........I tend to get the WORST gas because of Crohn's when I eat certain things. I know it isn't the most romantic thing to do, but it's ok to fart in front of your significant other! People try to keep the "mystery" but if you have IBD, it's not good to hold it in either!
5. Lean on your significant other. I can't stress how important this is. When you need their help, tell them. When things aren't going well and you aren't feeling well, tell them. My husband is now a pro at taking care of me and I wouldn't trade that for the world! Besides Crohn's I am relatively healthy. He is healthy as a horse. I knows if I am experiencing symptoms, he will be there.
6. Laugh about it. Poop and fart jokes can be hilarious. I'm really good (bad?) at coming up with bad jokes and puns about my condition. I send my guy Crohn's memes all the time. Some days that is the only way I get through!
7. After a colonoscopy be sure your significant other treats you to a meal of your choice. Because you both deserve it!
Monday, November 28, 2016
Sunday, November 27, 2016
Crohn's Disease -- What IS it?
WHAT is it? Crohn's Disease is an autoimmune disease where my immune system attacks my colon, causing inflammation. It causes digestion issues including diarrhea, gas, bloating, abdominal pain, and much, much more. Crohn's can happen anywhere in the digestive tract, from the mouth to the anus. It is diagnosed traditionally with a colonoscopy.
WHY is it a problem? In one word: inflammation. Too much inflammation can cause a back-up in the colon and/or small intestine. It also prevents people from absorbing enough nutrients because the digestive tract is not healthy and doesn't work like a normal person's digestive tract does. When I was originally diagnosed I had actually lost a lot of hair because I wasn't absorbing the nutrients in my food. My iron was also dangerously low and I had to take an iron supplement.
WHERE do you experience Crohn's? Personally Crohn's attacks where my small and large intestine meet, which is apparently very common (something I learned at my last colonoscopy!). Imagine when you get strep throat and your throat gets inflamed. You can physically feel the fact that the throat is smaller than usual. It is uncomfortable to swallow. That same type of thing happens to me, just on a daily basis in my small and large intestines.
HOW does it affect your daily life? You probably get occasional stomach aches, or you ate something and you can tell that it isn't agreeing with you. That is my daily life. In a typical day I have diarrhea, gas, and bloating. The abdominal pain fortunately isn't every day, but occasionally it makes an appearance on my bad days. I constantly am on alert for the closest bathroom. My friends know if they don't know where the nearest bathroom they can ask me and I will know. :)
HOW do you cope with having Crohn's? I take daily pills and I give myself one injection every two weeks to take care of the swelling. However, I still have good days and bad days and I always will. It is not a miracle cure and there is no cure for Crohn's Disease. I will likely need to take some sort of medication for the rest of my life.
WHEN are your symptoms worse? Stress makes my symptoms horrible. My job can be stressful so that definitely does not help. I am also sensitive to lactose in the form of milk and cream/ice cream. I eat yogurt and cheese and generally I do not have any issues, however milk causes my issues to be worse as does cream. I do not eliminate things completely from my diet, but those are among foods that I avoid most days.
WHY is it a problem? In one word: inflammation. Too much inflammation can cause a back-up in the colon and/or small intestine. It also prevents people from absorbing enough nutrients because the digestive tract is not healthy and doesn't work like a normal person's digestive tract does. When I was originally diagnosed I had actually lost a lot of hair because I wasn't absorbing the nutrients in my food. My iron was also dangerously low and I had to take an iron supplement.
WHERE do you experience Crohn's? Personally Crohn's attacks where my small and large intestine meet, which is apparently very common (something I learned at my last colonoscopy!). Imagine when you get strep throat and your throat gets inflamed. You can physically feel the fact that the throat is smaller than usual. It is uncomfortable to swallow. That same type of thing happens to me, just on a daily basis in my small and large intestines.
HOW does it affect your daily life? You probably get occasional stomach aches, or you ate something and you can tell that it isn't agreeing with you. That is my daily life. In a typical day I have diarrhea, gas, and bloating. The abdominal pain fortunately isn't every day, but occasionally it makes an appearance on my bad days. I constantly am on alert for the closest bathroom. My friends know if they don't know where the nearest bathroom they can ask me and I will know. :)
HOW do you cope with having Crohn's? I take daily pills and I give myself one injection every two weeks to take care of the swelling. However, I still have good days and bad days and I always will. It is not a miracle cure and there is no cure for Crohn's Disease. I will likely need to take some sort of medication for the rest of my life.
WHEN are your symptoms worse? Stress makes my symptoms horrible. My job can be stressful so that definitely does not help. I am also sensitive to lactose in the form of milk and cream/ice cream. I eat yogurt and cheese and generally I do not have any issues, however milk causes my issues to be worse as does cream. I do not eliminate things completely from my diet, but those are among foods that I avoid most days.
Saturday, November 26, 2016
I Had a Colonoscopy 12 Days Before I Got Married!
One of my biggest fears since diagnosis was that my Crohn's symptoms would negatively affect a big event in my life. When we were preparing for marriage, I started noticing horrible abdominal pain and my symptoms were only getting worse. This was June. I admittedly had not been in to see a doctor in a few years and my medications weren't working anymore. I thought I was fine because I felt fine, until I didn't.
In June I called to make an appointment with the GI specialty clinic in my area. I couldn't get in until August 5th and my wedding was August 22nd. Not exactly my plan... I accepted this and waited, and waited, and waited. My husband noticed that when I got home from work I couldn't do very much besides lay on the couch and he was worried for me.
Finally August 5th arrived. I went to a new doctor and she told me that they needed new pictures of my colon. It was actually very cool because they could see my pictures from 10 years prior at my first colonoscopy because of the health system they were using, but obviously a lot can happen in 10 years and I scheduled a colonoscopy for August 10th, 12 days before my wedding.
My dad very kindly drove me to my appointments that morning. The prep work had been just as bad as I had remembered it. I went into the colonoscopy that next day and afterward they told me that my gut was so inflamed at the small intestine/large intestine connection (where my Crohn's is most prevalent) that they couldn't get their scope where they needed to go. They also told me that they needed to schedule a gastrointestinal MRI that same day because they had to see my small intestine too. Since I had already fasted, they wanted to do it that same day.
I didn't eat for 40 hours because of these multiple tests. For the MRI I drank 3 pints of barium so they could get images of my gut. It was a long long day. My dad took me to Perkins to eat but my stomach was still churning from the MRI that I spent more time in the bathroom throwing up the barium than I did eating real food. I had a follow up appointment a day or two later.
At my follow up appointment they told me that my inflammation had gotten pretty bad, which explained my abdominal pain and the fact that they could not get their scope where they needed to go. I was put on Prednisone, a steroid, that same day in order to immediately decrease the swelling. My levels of Vitamin D were insanely low too so I was prescribed some supplements for that as well. He also walked me through treatment options, including an every 7 week IV OR a every-other-week injection. I am on the injection now and I am also on a pill that I take daily.
I had an insane amount of doctor's appointments the two weeks leading up to my wedding. I was incredibly thankful that they accommodated my needs and when I told them I was getting married and needed an answer immediately, they were very understanding. I will forever be grateful that things went smoothly and on my wedding day I felt amazing and did not have any Crohn's issues the entire day!
In June I called to make an appointment with the GI specialty clinic in my area. I couldn't get in until August 5th and my wedding was August 22nd. Not exactly my plan... I accepted this and waited, and waited, and waited. My husband noticed that when I got home from work I couldn't do very much besides lay on the couch and he was worried for me.
Finally August 5th arrived. I went to a new doctor and she told me that they needed new pictures of my colon. It was actually very cool because they could see my pictures from 10 years prior at my first colonoscopy because of the health system they were using, but obviously a lot can happen in 10 years and I scheduled a colonoscopy for August 10th, 12 days before my wedding.
My dad very kindly drove me to my appointments that morning. The prep work had been just as bad as I had remembered it. I went into the colonoscopy that next day and afterward they told me that my gut was so inflamed at the small intestine/large intestine connection (where my Crohn's is most prevalent) that they couldn't get their scope where they needed to go. They also told me that they needed to schedule a gastrointestinal MRI that same day because they had to see my small intestine too. Since I had already fasted, they wanted to do it that same day.
I didn't eat for 40 hours because of these multiple tests. For the MRI I drank 3 pints of barium so they could get images of my gut. It was a long long day. My dad took me to Perkins to eat but my stomach was still churning from the MRI that I spent more time in the bathroom throwing up the barium than I did eating real food. I had a follow up appointment a day or two later.
At my follow up appointment they told me that my inflammation had gotten pretty bad, which explained my abdominal pain and the fact that they could not get their scope where they needed to go. I was put on Prednisone, a steroid, that same day in order to immediately decrease the swelling. My levels of Vitamin D were insanely low too so I was prescribed some supplements for that as well. He also walked me through treatment options, including an every 7 week IV OR a every-other-week injection. I am on the injection now and I am also on a pill that I take daily.
I had an insane amount of doctor's appointments the two weeks leading up to my wedding. I was incredibly thankful that they accommodated my needs and when I told them I was getting married and needed an answer immediately, they were very understanding. I will forever be grateful that things went smoothly and on my wedding day I felt amazing and did not have any Crohn's issues the entire day!
Friday, November 25, 2016
"But You Don't LOOK Sick!"
I cannot tell you how many times I have heard this phrase, especially in the past year. People learn that I have Crohn's Disease and they are surprised at how well I cope and how they had never realized I was dealing with health issues. I "look" healthy. I "look" normal. But...I'm not. For the first 10 years of my illness I purposely hid my disease, so people who I had met in college didn't even realize what I dealt with on a daily basis. I became an expert at finding "hidden" bathrooms and finding reasons to sneak away when I needed to. I became an expert at finding excuses for why I couldn't go out when I wasn't feeling well. That was my fault that I hid my disease, however now that I am open about dealing with Crohn's, I hear this phrase a LOT.
Anyone who has an invisible illness like mine can tell you that they have heard this phrase over and over again. "You don't LOOK sick!" People who say this typically mean well, and this is nothing against those people; they are just surprised and not sure what to say. Yet, this is one of the worst things you can say in response to someone with an invisible illness and here is why:
1. It makes us feel like we have to "prove" our illness. This is the worst feeling, when you feel like you have the flu because you have gone to the bathroom repeatedly, but you are still pushing through it. It feels like people don't believe you, and that makes us feel even worse.
2. It does not validate the symptoms we deal with on a daily basis. When I say "chronic illness", I'm talking about 24/7, 365. Chronic illness does not take days "off". It does not let you get through a holiday dinner just because it's Christmas. It does not give you a break. Honestly some of my best days are probably days where most people would stay home from work. I don't know when I will have to excuse myself to use the bathroom. I can't predict if I will have a good day or a bad day. Some days start great and then suddenly I get abdominal pain. It's unpredictable and it's exhausting.
3. It sounds like you don't believe us. You mean well. We get it. BUT it is really hard to explain how it feels to have Crohn's Disease -- or any other chronic illness for that matter -- on a daily basis. We look fine, yes, but we are NOT fine. Please believe us the first time.
4. Most of the time, we suffer through a bout of our illness at work, in social gatherings, etc. Personally in the past 11 years I have missed only ONE day of work solely due to Crohn's symptoms. One. However, I've suffered many, many other days without complaint. I often feel guilty if I miss work due to my issues with Crohn's Disease so more often than not I suck it up.
You may be asking, "what can I say instead? I mean well!" Here's a list of some phrases you can use instead:
1. "I'm sorry you haven't been feeling well." Simple and to-the-point. We simply need understanding and empathy from the people we care about most.
2. "Please let me know what I can do to help." This is huge. I finally opened up to my coworkers about my disease in January 2016 and now I know if I need to use the restroom urgently, I can give my co-teachers a look and say "restroom". They have been wonderful about helping watch my class for a few minutes while I take care of business. Having people understand what I am going through, especially at work, is a huge step and makes me feel so much better about my situation.
3. "I am here for you." Again, simple and to-the-point. Knowing we have an understanding ear when we've had a rough day is a big, big deal in the world of chronic illness.
Anyone who has an invisible illness like mine can tell you that they have heard this phrase over and over again. "You don't LOOK sick!" People who say this typically mean well, and this is nothing against those people; they are just surprised and not sure what to say. Yet, this is one of the worst things you can say in response to someone with an invisible illness and here is why:
1. It makes us feel like we have to "prove" our illness. This is the worst feeling, when you feel like you have the flu because you have gone to the bathroom repeatedly, but you are still pushing through it. It feels like people don't believe you, and that makes us feel even worse.
2. It does not validate the symptoms we deal with on a daily basis. When I say "chronic illness", I'm talking about 24/7, 365. Chronic illness does not take days "off". It does not let you get through a holiday dinner just because it's Christmas. It does not give you a break. Honestly some of my best days are probably days where most people would stay home from work. I don't know when I will have to excuse myself to use the bathroom. I can't predict if I will have a good day or a bad day. Some days start great and then suddenly I get abdominal pain. It's unpredictable and it's exhausting.
3. It sounds like you don't believe us. You mean well. We get it. BUT it is really hard to explain how it feels to have Crohn's Disease -- or any other chronic illness for that matter -- on a daily basis. We look fine, yes, but we are NOT fine. Please believe us the first time.
4. Most of the time, we suffer through a bout of our illness at work, in social gatherings, etc. Personally in the past 11 years I have missed only ONE day of work solely due to Crohn's symptoms. One. However, I've suffered many, many other days without complaint. I often feel guilty if I miss work due to my issues with Crohn's Disease so more often than not I suck it up.
You may be asking, "what can I say instead? I mean well!" Here's a list of some phrases you can use instead:
1. "I'm sorry you haven't been feeling well." Simple and to-the-point. We simply need understanding and empathy from the people we care about most.
2. "Please let me know what I can do to help." This is huge. I finally opened up to my coworkers about my disease in January 2016 and now I know if I need to use the restroom urgently, I can give my co-teachers a look and say "restroom". They have been wonderful about helping watch my class for a few minutes while I take care of business. Having people understand what I am going through, especially at work, is a huge step and makes me feel so much better about my situation.
3. "I am here for you." Again, simple and to-the-point. Knowing we have an understanding ear when we've had a rough day is a big, big deal in the world of chronic illness.
Wednesday, November 23, 2016
My Story
My life with Crohn's Disease is far from simple. It affects me every single minute of every single day whether I like it or not. My life, though not dominated by my disease, will always be affected by Crohn's Disease. This is my story.
I was 17 years old when I was diagnosed. I started experiencing symptoms about 8 months before "officially" being diagnosed with Crohn's. I was hoping it would go away, but once my parents started noticing my symptoms and how bad it had gotten, we went to the doctor. I underwent numerous blood tests. I went through many, many procedures. I tried cutting out gluten. I tried cutting out dairy. My doctor went through every non-invasive procedure possible until he told me I would need a colonoscopy. As a teenager this was the LAST thing I wanted to do, so it took me a couple months to open up to the idea. Finally, I got sick of being sick and I asked my mom to schedule one.
I had to be on a liquid diet the day before of course, and I was at school during that day...so much "fun"! Fortunately the day after I had a morning procedure and things went smoothly. In the recovery room my GI specialist told my mom and myself that I had Crohn's Disease, a classic case. He also prescribed medication which we picked up that same day, a medication which I would take for 8 years after that.
Fortunately after that point I generally started feeling better. I had lost over 50 pounds and was starting to lose hair because I was lacking nutrients. I had to take iron supplements because my iron count was dangerously low. I finally felt "normal" again, though I will never be "normal".
I have had two colonoscopies since then, including one 12 days before my wedding. I will document the steps of my journey in future posts on this blog, including medications, frustrations, changes, and everything in between.
This all began 11 years ago. It has been 11 years of immediately searching for bathrooms every time I enter a new store or restaurant. 11 years of stomachaches. 11 years of medication. 11 years of doctor's visits. 11 years of good days, and bad days. I am infinitely better at coping with my disease now, however it is hard to know that I will never be 100% cured. I choose to face it with positivity, however that is not always easy. I put on a happy face even when I'm struggling.
This blog will document the ups, the downs, the struggles, the humor, the hard times, and the lessons learned through my illness. It does not define me, however it has absolutely helped me to become a stronger person. The biggest thing I have noticed in the past 11 years is that no one, and I repeat NO ONE talks about Crohns' Disease, or colitis, or IBS because they are embarrassed and afraid of it. Yet so many of us suffer through it silently. I am done being silent about my disease. It's time to erase the stigma.
I was 17 years old when I was diagnosed. I started experiencing symptoms about 8 months before "officially" being diagnosed with Crohn's. I was hoping it would go away, but once my parents started noticing my symptoms and how bad it had gotten, we went to the doctor. I underwent numerous blood tests. I went through many, many procedures. I tried cutting out gluten. I tried cutting out dairy. My doctor went through every non-invasive procedure possible until he told me I would need a colonoscopy. As a teenager this was the LAST thing I wanted to do, so it took me a couple months to open up to the idea. Finally, I got sick of being sick and I asked my mom to schedule one.
I had to be on a liquid diet the day before of course, and I was at school during that day...so much "fun"! Fortunately the day after I had a morning procedure and things went smoothly. In the recovery room my GI specialist told my mom and myself that I had Crohn's Disease, a classic case. He also prescribed medication which we picked up that same day, a medication which I would take for 8 years after that.
Fortunately after that point I generally started feeling better. I had lost over 50 pounds and was starting to lose hair because I was lacking nutrients. I had to take iron supplements because my iron count was dangerously low. I finally felt "normal" again, though I will never be "normal".
I have had two colonoscopies since then, including one 12 days before my wedding. I will document the steps of my journey in future posts on this blog, including medications, frustrations, changes, and everything in between.
This all began 11 years ago. It has been 11 years of immediately searching for bathrooms every time I enter a new store or restaurant. 11 years of stomachaches. 11 years of medication. 11 years of doctor's visits. 11 years of good days, and bad days. I am infinitely better at coping with my disease now, however it is hard to know that I will never be 100% cured. I choose to face it with positivity, however that is not always easy. I put on a happy face even when I'm struggling.
This blog will document the ups, the downs, the struggles, the humor, the hard times, and the lessons learned through my illness. It does not define me, however it has absolutely helped me to become a stronger person. The biggest thing I have noticed in the past 11 years is that no one, and I repeat NO ONE talks about Crohns' Disease, or colitis, or IBS because they are embarrassed and afraid of it. Yet so many of us suffer through it silently. I am done being silent about my disease. It's time to erase the stigma.
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