#50

It’s not that I haven’t been working on my bucket list the last few months. In fact, I am a year away from crossing off #39 (completing my Master’s degree), for a while I successfully stopped biting my nails (#36) and I’ve been close to #46 (read one book a month). But, for the most part, I have been working hard on #50 – being a mom. I always knew that Crohn’s disease would make pregnancy difficult but I guess I never realized just how excruciating the process would be.

We started officially trying 3 1/2 years ago. After about 6 months of no luck, we saw a fertility specialist who recommended moving on to more aggressive options. Before we started that process, I had a routine colonoscopy to make sure my disease was still in remission and, unfortunately, it was not. That pressed the breaks on the baby plan and I spent the next year working with my GI to get my Crohn’s under control. Finally, at my colonoscopy a year later, we saw no signs of active disease and operation baby was back in motion.

It actually didn’t take us long to get pregnant. After only two months of trying I finally got to see those beautiful two pink lines on a pregnancy test. We were ecstatic. At 6 weeks we told our parents because that was the week our baby’s heart was supposed to start beating. Whether it ever did or not, I will never know. We lost that little miracle at 7 weeks after a night of bleeding and cramping took me to the ER. It was an incredible loss. Up until then I had never quite experienced pain like that. And I have lived the last 19 years of my life in pain.

But we pulled ourselves back up and started again. When we struggled to get pregnant on our own we sought the advice of the experts. After embarrassing and invasive testing, we were diagnosed with unexplained infertility. It is the absolute worst diagnosis because although you know something is wrong you don’t know what it is or how to fix it. They theorized that I have so much scar tissue from my previous surgeries that it is making everything a bit more difficult. So we started IUIs (intrauterine insemination – essentially the turkey baster approach). Our doctors recommended we do three IUIs and if none of those worked that we should move on to IVF.

So we did our three and none of them were successful. It is a cruel and horrific process. Every month there is an indescribable hope followed by a soul crushing disappointment. But our doctors were confident IVF would work for us so we decided to try. I started injecting myself every day with the very expensive medications that were supposed to bring me a baby. Before we started the second medication I had another scope to make sure my Crohn’s was still behaving itself. It was but I had a severe complication and ended up in the ICU for four days needing a blood transfusion.

Whether it was the almost bleeding out from my scope, the wrong drug protocol or some other unknown factor, I simply didn’t produce enough eggs to warrant a retrieval (the next step in IVF). Our doctor recommended we cancel that attempt and try again the next month. I was devastated and after a very emotional conversation with my nurse, they recommended trying another IUI. Why not, right? It only had a 10% chance of working but it was worth a shot. So we went for it. And two weeks later I could not believe my eyes when I saw those glorious two pink lines. We were pregnant.

I went to our fertility doctor’s office to confirm the pregnancy and heard the most amazing sound I had ever heard, our baby’s heart beating strong. It was something I had been robbed of with our first miracle and I cannot properly explain the emotions I felt when I finally heard that tiny little heart beat for the first time.

Unfortunately, I started bleeding soon after. We ended up in the same ER as before and I couldn’t believe we were going to lose another baby. But, again, there was that glorious heartbeat. I was diagnosed with a subchorionic hematoma (a blood clot in the uterus) and was told to take it easy but also not to worry. It’s kind of hard not to worry when you are pregnant yet bleeding every day. We ended up in the ER again a few weeks later after I started to seemingly hemorrhage but, again, everything was okay.

As we got farther along I started to feel a little more confident in the pregnancy. We told our parents, we announced it to my whole family at my grandma’s birthday party, and we told my stepdaughter that she was going to have a brother or a sister. We bought baby clothes, we planned the nursery and, at our 12 week appointment I was wearing maternity clothes to cover my growing belly. At that appointment, we got to see our little baby actually looking like a baby and not just an embryo. We saw the little hand wave at us and again, heard that wonderful sound. The hematoma had grown considerably but I was told, again, not to worry. That everything looked perfect. We had our genetic testing done and my mom and I started to talk about a baby shower. I was out of the first trimester. If something bad was going to happen, it would have happened by now. I was actually going to have a baby.

Because of how complicated the pregnancy had been, I had ordered an at-home baby Doppler so I could hear the heart beat on my own and put my nerves at ease. It arrived the Friday after our Monday appointment and I tried for an hour to hear that wonderful sound. But all I heard was silence. I tried not to worry. I mean this thing was $40 at Walmart, how reliable could it really be? I tried again on Saturday and again on Sunday and still all I heard was silence. Now I was starting to worry. I emailed my OB to see if I could come in Monday to have her find the heartbeat and she agreed. I had done this once before after one of our big bleeds.

Somehow though, this time was different. I think I knew, even then, that something was very wrong. I made Josh go with me to the appointment because I couldn’t shake my growing fears. Our OB came in the room and immediately went to put our minds at ease by finding the heartbeat for us. But couldn’t. She told us not to panic and brought in an ultrasound machine. It took just a second too long and I knew, in that instant, our baby was gone. She grabbed my hand and told me that the beautiful sound I had grown to love had stopped. There was no heartbeat. I think mine stopped beating too. It was the most mind-numbing, soul-destroying, unexplainable pain I have ever felt. I thought Josh was going to punch a hole in the wall or jump through the window. I wanted to die. As my world was ending, I heard my phone ring in my purse. I found out later that it was our high risk doctor calling to tell us that our genetic testing results were in. That everything was perfect and we could know the gender.

They were calling to tell me I was having a healthy little girl the very moment I was finding out that she was gone. I don’t want to talk about that anymore.

What followed was a D&C where I couldn’t go home until I stopped crying and I couldn’t stop crying. We named our little miracle Amelia, a name we both fell in love with those 3 wonderful months she was with us. We buried her ultrasound pictures at the base of a beautiful tree on the edge of a cliff in one of our favorite parks. We said goodbye.

It’s been 6 weeks since we lost her and the pain feels as real and excruciating as it did the day we found out. I don’t know what’s next for us. I don’t know if I can do this again. I’m actually not worried that we won’t get pregnant again. I’m worried we will. I don’t know if I can lose another baby. I don’t know if this is the end of the road for us. I don’t know anything anymore.

What I do know however, is that even though our sweet baby girl was only with us for a few short months, I will always be her mom.

 

#31 – The Vegetarian

I don’t think tankthere is any doubt in anyone’s mind who has met me before that I LOVE animals. Obsessively, enthusiastically and maybe a little weirdly. I am the person at the party that is in the corner playing with the dog. I have dogs of my own that I talk incessantly about, fill my Instagram feed with, and talk to and about as if they are
humans.

It’s not just dogs either. I worked at a zoo and knew the names, ages and backgrounds of most of the animals there before I could be bothered to learn who my coworkers were. I loved the zoo so much that it inspired me to get my Master’s in Biology focusing on conservation (soon this will help me cross off #39 as well).

I cannot kill animals (even ants or spiders) or watch them being hurt or killed – even if it’s fake. I religiously check the website Does the Dog Die? before I will watch any movie involving animals. My husband makes fun of me for it and I’m sure I’ve missed a lot of great movies due to it, but if you think I’m going to make the mistake again of watching something like the horrible and traumatic Eight Below you’re insane. Seriously, never watch that movie.

I also think if there were ever a zombie apocalypse, and I had kill animals to feed myself, I would just walk right into a herd of zombies. That’s why it has always been wildly hypocritical of me not to be a vegetarian. I’ve romanticized the idea of eliminating meat from my diet for years but have never been able to do so. To my credit, a lot of this wasn’t my choice. When my Crohn’s was flaring I wasn’t allowed to eat anything with a seed or skin, nuts, beans or kernels of any kind or anything too high in fiber or overly acidic. That didn’t leave me a lot of options. It was meat and carbs for me for years and I took the easy way out and let someone else do the animal killing and put on a giant cloak of denial about the horrors of the meat industry and went on my way. As I got older, I tried very hard to make sure all of my meat (and dairy) was produced cage-free, organic, sustainable, blah, blah, blah. And although those are great things I still felt like a big fat hypocrite.

Then the stars aligned for me. My Crohn’s went into remission from a new drug regiment (wooohooo!) and I was tasked with an “environmental action” in one of my courses on the path to this Master’s degree. So I decided to cross #31 off my list and be a vegetarian for a month. I thought it would be really hard, test my willpower and that I might not be able to do it. But I did. And have continued to eat (majority) vegetarian since the 30 days were up. I didn’t miss meat. At all. The only hard part for me was being so restricted when eating at rescow
taurants. I’ve been food restricted my whole life and it was hard to volunteer to do that again but I just kept picturing a cow before I would order meat and it always did the trick.

I have eaten meet twice since April 11 (the end of my 30 days). The first time was ham on Easter Sunday and I felt like it was going to make me throw up. The second was chicken on my salad this afternoon. As soon as I ate it, I wished I hadn’t. What started as 30 days vegetarian is going to finish with me no longer eating meat for as long as my body will let me. To appease my conscious, any dairy or eggs I eat will need to be from organic and sustainable farms as long as I can help it.

Now I’ll be the girl in the cornering eating celery and lecturing you on the revulsion of the meat industry. Just kidding.

Maybe.

#26 The Slap

I have always wanted to slap somebody really hard. I don’t know where it came from and feel like I shouldn’t dig too deep into why I would have such a desire. Let’s just chalk it up to too much daytime soap opera watching during long stretches of illness. Either way, I have always had the need to really slap the crap out of someone.

When I met my husband, I was experiencing my fourth year of remission and getting pretty used to the life of a healthy person. Then, six months later, BAM life slapped the crap out of me and my Crohn’s was back.

Trying to explain to a new boyfriend that your life (and theoretically his) is about to change courses isn’t an easy conversation to have, so I put if off. And put it off. And put it off. Until one night, in a very inebriated state, I threw up blood in front of him. Scared and drunk, I broke into tears and laid the whole thing on him. Maybe because he had been drinking too or because I was such a pathetic mess, he seemed to take it in stride and the next day we both pretended none of it had happened.

Until the next blood vomit moment. After that, my health made a rapid decline and my husband proved that he was a person I needed in my life. He took (and still takes) amazing care of me when I was sick, he comforted me when I cried, he went to doctor appointments, he slept next to my hospital bed and he let me slap him really hard.

It all started when he saw the Bucket List hanging on my fridge. He commented that he was going to help me cross some things off like a new good boyfriend would, but then it seemed we both forgot about it. Once my health took a nose dive, I think he relooked at that list and realized just how important it was to me.

Fast forward a week – we’re out with his friends at a concert downtown. As the concert ends and we are walking to a local bar, Josh stops me and, out of nowhere, declares “I’m going to let you slap me.” It took me a second to understand why he would make such a weird offer but I think once I realized what he meant I fell in love a little bit.

On the street in downtown Cleveland, I got ready for my big moment. I lined my hand up with his face, swung back and let my hand fly as hard as I could. And completely missed. I hit him, not on the face, but clear across his neck, leaving angry red finger marks in my wake. It was awesome. I think that’s when I first knew I had met my future husband.               11707578_10108984095412664_9115577411062642561_n

Monster or Misunderstood?

The other day I saw a news story titled “Monster or Misunderstood?” referring to pit bulls. As the proud owner of 2 pit bulls,dogs I actually laughed out loud. The breed itself is far from monsters. My two are the sweetest, laziest, cuddliest dogs on the
planet. However, this isn’t the topic I want to talk about.

With the recent vote in Ohio, it got me thinking that the same title could be applied to a story about medical marijuana. If you talk to one side of the argument they will tell you that marijuana is the devil – the gateway to a life of drug addiction – but if you hear from the other side you’ll hear stories of miraculous healing and disease control. To be clear – I am on the latter side.

As someone who has suffered from a chronic illness more than half their life, I am advocate for anything that may alleviate someone’s pain and suffering. Sometimes the pain of this disease can be so debilitating that sufferers can’t work, can’t take care of their kids, can’t eat, can’t sleep, can’t get out of bed, can’t survive. How can marijuana be worse than that?

You’ll hear that marijuana is addictive and mind-altering and can lead to experimentation of harder, more harmful drugs. But can’t the exact same thing be said for the perfectly legal Vicodin and Percocet doctors have been throwing at me my whole life? Isn’t there significant research that shows prescription pain pills lead to heroin addiction? Is there the same correlation for marijuana?

Let’s lay out some facts:

Side effects of marijuana include (from WebMD):
Dizziness, Shallow breathing, Red eyes and dilated pupils, Dry mouth, Increased appetite, Slowed reaction time (If you drive after using marijuana, your risk of being in a car accident more than doubles.), A distorted sense of time, Random thinking, Paranoia, Anxiety, Depression, Short-term forgetfulness

All not-great things to deal with.

But let’s look at the side effects of Vicodin (also from WebMD):
631-004_North_Page_1_Image_0001Abnormally Low Blood Pressure, Dizzy, Drowsiness, Feel Like Throwing Up, Feeling Faint, Feeling Weak, Incomplete or Infrequent Bowel Movements, Inducing of a Relaxed Easy State, Not Feeling Well, Spasm of the Larynx, Abnormal Nervous System Function Affecting Mental Alertness, Bronchospasm, Change in Pulse, Collapsed Portion of Lung, Confused, Fast Heartbeat, Significant Decrease in Lung Function, Slow Heartbeat, Trouble Breathing, Acute Infection of the Nose, Throat or SinusLess, Anxious, Backache, Blood Pressure Drop Upon Standing, Blurred Vision, Condition in which Stomach Acid is Pushed Into the Esophagus, Double Vision, Dry Mouth, Excessive Sweating, False Sense of Well-Being, Feeling Unhappy or Unwell, Fluid Retention in the Legs, Feet, Arms or Hands, Head Pain, Intense Abdominal Pain, Involuntary Quivering, Joint Pain, Kidney Problems Causing a Decreased Amount of Urine to be Passed, Loss of Appetite, Low Energy, Mood Changes, Muscle Pain, Muscle Spasm, Narcotic Addiction, Nervous, Night Sweats, Problems with Eyesight, Sluggishness, Spasm of the Ureter or Tube Connecting Kidney to Bladder, Temporary Redness of Face and Neck, Throwing Up, Urinary Tract Infection, Acute Liver Failure, Acute Pustular Eruptions on Skin, Decreased Blood Platelets, Decreased Neutrophils a Type of White Blood Cell, Decreased White Blood Cells, Deficiency of Granulocytes a Type of White Blood Cell, Depression, Discolored Spots and Small Elevations of the Skin, Giant Hives, Hallucination, Hearing Problem, Hepatitis caused by Drugs, High Blood Pressure, Increased Spinal Fluid Pressure, Inflammation of Skin caused by an Allergy, Involuntary Muscle Movements, Itching, Muscle Stiffness, Reaction due to an Allergy, Ringing in the Ears, Stevens-Johnson Syndrome,Toxic Epidermal Necrolysis, Vocal Cord Swelling, Chronic Trouble Sleeping, Irritation of the Stomach or Intestine, Nightmares, Spasm of a Bile Duct Tract

Ummm – how does this make any sense? If both alleviate pain why is the one with greater, more severe side effects been mjthrust upon Crohn’s patients as a viable treatment option and one a ticket to the big house? For people who have limited options, why not give them every opportunity to have some relief from the everyday pain they are facing?

One argument is that marijuana is not FDA approved but I am about to be put on a drug (after failing every other option) that’s also not FDA approved for Crohn’s disease and has side effects including:

Acute Infection of the Nose, Throat or Sinus, Head Pain, Infection, Low Energy, Throat Irritation, Backache, Depression, Itching, Muscle Pain, Signs and Symptoms at Injection Site, Appendicitis, Bone Infection and Inflammation, Brain-Capillary Leak Syndrome, Cellulitis ,Diverticulitis ,Erythrodermic Psoriasis, Giant Hives, Inflammation of the Gallbladder, Inflammation of the Lining of the Stomach and Intestines, Life Threatening Allergic Reaction, Malignant Tumor or Cancer, Pneumonia, Pustular Psoriasis, Sepsis Caused by Bacteria, Sepsis Syndrome, Severe Infection, Skin Cancer, Skin Rash with Sloughing, Spreading Cancer of Skin’s Surface Cells, Hives, Urinary Tract Infection

How is marijuana worse than a drug that has EIGHT potentially FATAL side effects? And that is just one of the 10 drugs currently prescribed to “treat” my Crohn’s disease. Just take a minute and think about that. I know I will.

#30 The Save

I am the lucky (?) owner of three rescue dogs. Although I consider the last one my one true “save”, I’m going to tell you about my first guy – Jack.

Jack came from a very bad situation. He was found broken and battered, a suspected victim of a dog fighting ring. jackAlthough Jack isn’t a pit bull or a “fight” dog his rescuers suspected he was a bait dog. (For those of you sensitive to animal abuse now is the time to cover your ears.) A bait dog is a dog that is sacrificed and slaughtered in order to teach the fight dogs how to kill. They are drugged, muzzled and typically have their back two legs broken so they are unable to fight back. Jack was lucky because somehow he had survived whatever terrible situation he had been in.

However, as many trauma victims know: surviving isn’t everything. I personally knew that first hand. A while ago, I survived my own traumatic experience. Surviving, however, isn’t the same as living.

In order to survive what happened to me, I jumped into a much too fast relationship with a not-so-nice guy. At the time I was looking for a savior, someone to protect me, and I thought I had found that in him. I was wrong. When I started to heal, to come back to myself, to want to do the saving instead of being the one saved, he quickly ended whatever it was we had had. He wanted a victim and I no longer was.

Inspired to be the rescuer, I found Jack. He too was healing and I thought we could save each other. This time I was right.

Having Jack gave me a reason to get out of bed when I didn’t think I could. He gave me the opportunity to take him on walks and to the dog park and meet people and make friends. He gave me the chance to be happy. I, in return, gave him love and safety. We were healing each other. And then, quite literally, he saved me back.

jack attackI had a neighbor’s pit bull get loose from their home and rush at me when I opened my door. Jack, being Jack, ran in front of me to protect me. It was one of the most horrific moments of both our lives I think. (It’s time to cover your ears again). I was holding Jack, face to face with the pit, as Jack screamed, cried, pooped himself and fought to live – again. As a team, after a full 5 terrifying minutes passed and several people came to help, we got Jack free. He needed 10 staples in his neck but he proved, once again, that he was a survivor. And so was I.

Years later, I got my second rescue – Tank – and accidentally made myselftank the owner of my very own pit bull. Tank’s litter was found in a cardboard box at a gas station and he was adopted by a family that decided since Tank was not housebroken at 9 weeks old, he was too much work. They told me he was a boxer mix and I was happy to take him off their hands. Although his life had not been as terrifying as Jack’s, he still needed to know
the meaning of unconditional love and I proved that when, as he grew up, it became obvious he was no Boxer.

I am a sucker for helping dogs. I can’t tell you how many times I have seen a loose dog, pulled over and spent hours trying to catch them and return them to their families. I took home a dog that was abandoned at a dog park, I found homes for unwanted pups and I volunteered for rescue organizations. But the one dog I KNOW I saved was Apollo.

He had gotten loose from his home and I tried desperately to find him. Finally, someone responded to my Craigslist ad that apollothey thought a post by the City Pound included Apollo. A rescue organization had posted pictures of dogs (ear muffs) scheduled to be euthanized the following day, and low and behold, in cage 17 was Apollo. I left work, rushed to the pound and adopted him on the spot. His fight was not over yet, however. He had developed kennel cough that progressed into life threatening pneumonia from his time in the big house. Several emergency visits with hefty price tags later, Apollo was given a bill of health and I had fallen in love.

Sometimes I hate having 3 big dogs (including now two pit bulls) but when I’m feeling sick, or sad, and they lay next to me (or on top of me) with their heads in my lap, I know they are giving me much more than I could ever give them. Maybe, in the end, I was the one who was saved.

dogsall

The List

Many years ago, when I was wee young thing, I wrote my bucket list. It wasn’t because I thought I was going to die but because I wanted to live. I was feeling similarly to how I am now – sad, helpless and broken. At the time I wrote it I was looking for a reason to fight back. I’m doing the same now.

In this fleeting brevity of life we only get a moment to be adventurous. To be bold. To make an impact. There is just not enough time to be depressed or beaten. There is too much living to do.

Lately, I’ve been in a very “woe is me” mindset and it’s infuriating. I am not that person. I have never been a victim. I have been and will be a fighter. A doer. A maker of Bucket Lists and a cross-it-offer.

So here’s the bucket list I made then and here’s the one I’m making now. Some things have remained the same – I will always want to cage dive with sharks – and some have changed. I’ve removed items because I really only had them on there because I thought it was something I should do, not something I wanted to do or because it sounded cool to have “wrestle an alligator” on there. I also removed things that I no longer have a desire to cross off – running a marathon for instance. I have run 3 half marathons and knowing that how I feel at the finish of those races would only be the halfway point in a marathon proved to me I had no desire to ever run a full.

This is only the starting point. I have a feeling I will add things faster than I cross them off but isn’t that the point of life – to always be seeking your next adventure?

I hope you join me on this endeavor and make a list of your very own.

Next up: How saving an animal actually saved me.

THE LIST

1. Cage dive with sharks

2. Get a tattooBack Camera

3. White water raft the Gully River

4. Take a trip alone

5. Complete “El Camino de Compostela”

6. Go sailing

7. Go on an African Safari

8. Invent somethingBack Camera

9. Get published

10. Live alone

11. Run a half marathon

12. Sing Karaoke

13. Sit through the first Halloween movie

14. See An Affair to Remember and Casablanca

15. Read the Bible

16. Milk a cow

17. Complete 1,000 piece puzzle

18. Eat something bizarre

19. Ride in a hot air balloon

20. See the original 3 Star Wars

21. Make a real 3 point shot

22. Swim with dolphins

23. Go to the Super Bowl

24. Visit AustraliaBack Camera

25. Shoot a gun

26. Slap somebody really hard

27. Fly first class

28. Smoke a cigar

29. Drive a motorcycle

30. Save an animal

31. Be a vegetarian

32. Be on TV

33. Learn another language

34. Be the Boss

35. Buy a House

36. Stop biting my nails

37. See a meteor shower

38. Stay at Lake Placid Lodge

39. Get my Master’s degree

40. Get my PHD

41. Go to Italy

42. Visit Spain

43. See the Northern Lights

44. Go to the Food and Wine Festival in Aspen

45. See Alaska

46. Read one book per month

47. Read all the “100 books you should read before you die”

48. Cook one great meal

49. Get certified to teach Yoga

50. Be a mom

Fight Song

So I guess my last post was a little dark. And depressing. It didn’t feel that way to me when I wrote it – it just felt like the first truly honest post I had made in a while – without a veil of humor and ease. That being said, it’s very uncommon that I let myself get sad and hopeless and even more of a rarity that I let other people see that side of me. It’s just that I was so tired. Tired of pretending to be okay. Tired of smiling when I wanted to cry. Tired of acting like this disease is anything other than a horror show masked as my life. Tired of being tired. And afraid.

This may seem cheesy and dorky since I’m not a 13 year old girl, but what snapped me out of my funk was a song on the radio – Fight Song. I really listened to the lyrics, I shouted them at the top of my lungs and I felt inspired to write my own. So here is my “fight song”.

Take Back My Life SongFullSizeRender
My life seems to not exist without Crohn’s. When I went into remission, I faltered with who I was and what I represented without Crohn’s in my life. How sad is that? How did I let myself forget the person I am? Not Katie with Crohn’s – just Katie.  My life weaved so thoroughly with my disease that I seemed to lose who I was at the core. I was living, breathing and working Crohn’s disease. I had been fundraising for digestive diseases for 7 years, living it for 17. Spending 40 hours a week surrounded by doctors, disease, hospitals and procedures and then going home and spending the rest of my life surrounded by doctors, disease, hospitals and procedures. Enough was enough – I needed to take my life back. Make a life without Crohn’s.

So I quit my job. I walked away from a career tract most fundraisers would kill for because I needed to get away from something I’ve been trying to escape half my life. I took a new job fundraising for a Zoo. I’ve only been here a week and I already feel the old me peeking through. The happy, fun, goofy Katie I used to love. Maybe spending your lunch watching the elephants instead of the triage of sadness in a hospital lobby is all you need to feel a little happier. Maybe walking away was actually walking towards something.

Prove I’m Alright Song
I constantly feel like I need to pretend to be alright so friends and family don’t feel bad for me. But constantly pretending is exhausting and makes me resentful. So why am I pretending? Why can’t I actually just be alright?s6yryzl

But how exactly do I do that? By taking control of the things I can when I feel like nothing is in control. I cut gluten out of my diet recently because it is one of the most inflammatory substances in existence and anyone with an inflammatory disease isn’t doing themselves any favors by eating it. It sucks and I have no idea if it’s helping or not but I feel like I am doing SOMETHING – anything that may help me beat this thing. And anything feels better than nothing.  Anything makes me feel like one day I will actually be alright.

My Powers Turned On
I’m ready to get back to living. I’m ready to get back to a life that doesn’t revolve around a disease. I’m ready to do the things I want to do and stop feeling like the Crohn’s coming out of remission put living on hold.bucketList

Years ago, when I was really, really sick I wrote a bucket list. Not because I thought I was going to die but because I knew
that being sick was going to limit me on some things I wanted to do. I wrote the list to inspire myself to fight harder, to get tougher, to beat this flare so I could do the things on my list. I haven’t seen that list in years – until last week. I pulled it out, crumpled and battered, to turn my power back on. To do the things I want to do in this life – with Crohn’s or without. That’s where I’m going to take my life and this blog.  I’m going to stop writing about the things I can’t do and start writing about the things I still can. And do them. Stay tuned.

Starting Right Now I’ll Be Strong
Starting right now I will be strong. I will no longer wallow in self pity or be consumed by things I cannot control. I will fight. I will kick ass. I will be me.

I’ll play my fight song. And I don’t really care if nobody else believes.

Cause I still got a lot of fight left in me.

I Am Angry

I am angry.

imagesA little over a year ago, I had my third surgery (second resection) because of this stupid Crohn’s disease. It was long overdue but up until the day of my surgery, all my scopes were clear. Nobody could ever find the cause of my pain because nobody could find signs of disease through a colonoscopy or endoscopy. That’s the problem with using scopes to assess disease – even with a double balloon endoscopy, they could only ever see around 10 feet of my intestines, leaving roughly 14 feet as perfect hiding grounds for a nasty little stricture. When I couldn’t take the excruciating pain any longer, we decided surgery was the only option and it wasn’t until my surgeon saw it first hand that we really knew just how bad it had been.

But none of that mattered the day after surgery because I woke up in remission. There was no sign of active disease anywhere in that now 23.5 feet of intestine – something I hadn’t experienced in the last 5 long years. It was going to be a new life for me. My first surgery bought me 5 pain-free years of disease-free living and I was fully expecting to be granted a similar reprieve this time. To be extra sure I was buying myself as much time as I could, I started a new medication a month out of the hospital – the last of the biologics I hadn’t failed. I was ready to live my life again.

My husband and I got married 6 months before my sickness spiraled so to say we never experienced being newlyweds would have been an understatement. I was ready to enjoy life. I was ready to bring a new life to this world.

I’d always known pregnancy with Crohn’s disease could be dangerous, particularly if you had active disease, but I always figured somehow it would work itself out. Because I was a good person and I was bound to have one thing go right in my life. Right? Wrong.

My husband and I tried to get pregnant for a year – 12 months of budding hope and crushing disappointment. We were about to take the next step in our fertility process when my GI suggested a routine colonoscopy to dilate a stricture formed from the scar tissue from my first surgery. It’s something I need to do every year, so we thought it best to do it again before pregnancy. My mom drove me that day, unknowingly, into something that would change my life.

I am always groggy after a scope but my clarity sobered after seeing the look on my GI’s face when she came to tell us the results. She looked like she was about to tell me someone I loved had died and, in a way, she did. She told me she was sorry but there were signs of active disease again – EVERYWHERE. She took 11 biopsies because there were significant erosions and ulcers throughout my whole colon and all the way into my terminal ileum. I felt the breath leave my lungs like I’d been kicked in the chest. How could it be back? It had only been a year from surgery. I was supposed to still be in remission. I was supposed to be living my life. I was supposed to have a break from this.

I still haven’t recovered from the news. I actually feel like I’m drowning. Crohn’s has taken so much from me and now, for the time being, it’s taken my chance at being a mom. I’m devastated, heartbroken and mostly just angry. It’s just not fair. I deserved a break. My husband deserved a break. I deserve a body that won’t fail me all the time.

For the last 17 years, I have always tried to look on the bright side of this disease. I’ve rarely let it take me down for long. I can usually take the hit, brush myself off, and stand up again but I just can’t seem to do it this time. It brought me to my knees and I don’t know how to stand again.

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Lost

It feels like my whole life I have been the girl with Crohn’s. When I was diagnosed, over 16 years ago, it seemed like I was the only one who’d ever had the disease and everyone in high school knew me by that alone. It could have been because everyone in high school is labeled for something – you might be the guy who smoked pot, the girl who was having sex, the kid who scored a 1500 on their SATs. At some point, everyone in high school does one thing that gets them labeled the rest of their high school career. Having had a pretty uneventful adolescence, when I was out of school for two months and came back with a diagnosis of a disease no one had heard of – I became the girl with Crohn’s. Or at least that’s how I felt at the time.

I think that’s why I tried so hard to hide my disease in college. I even tried changing my name from Katie to Kate. That might not seem like a big deal, but to me it meant a new identity. A chance to not be labeled by a “gross” digestive disease. At first, it was pretty easy to hide. My symptoms were under control going into my freshman year so I didn’t have to worry about people questioning frequent trips to the bathroom or extremely restrictive weird eating habits. The problem was, I was enjoying life as a normal coed so much that it wasn’t long until my attempt to hide it led to me skipping doses of medication and then to not taking them at all. You CANNOT stop medication when you have a chronic, lifelong illness. No matter how good you think you’re feeling. It will lead to having to leave school and be rushed home for emergency surgery. At least it did for me. And then the cat was out of the bag and I was Crohn’s girl again.

After a few failed attempts to separate myself and my identity from the disease, I decided to change courses and embrace it. If you can’t beat ’em, join ’em, right? I actually threw myself into it. I brought it up any chance I could, inserted it into every conversation, became involved in advocacy and education and even focused my career around it. I worked at the Crohn’s and Colitis Foundation and then began working at a hospital fundraising for physicians trying to cure IBD. Soon, my whole life seemed to revolve around a disease who’s existence I’d once tried to hide. Most of my friends were people I had met through CCFA who also had IBD, I went to support groups, 40 hours a week I learned and talked about the latest treatments and research studies in IBD, I got a Crohn’s awareness ribbon tattoo and for fun I wrote a blog on the subject. Simultaneously, my disease was progressively getting worse so every single moment of my life I was feeling the affect the disease had on my body and spending copious amounts of time in doctors’ offices, ERs and hospitals. It changed what I ate, what I wore, where I would go, and who my friends were. It was hard to see where the Crohn’s started and I began. Who was I really without this disease?

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And then I had the surgery that put me in remission. And I’ve never felt so lost.

I feel guilty being anything other than over-the-top excited that my life isn’t consumed by pain, needing to know where the closest bathroom is at all times and the excruciating choice of whether or not to eat. But without all of that in my life, I don’t really know who I am anymore. I’ve been the girl with Crohn’s for so long that I don’t know how to just be me. Is there even a version of me without Crohn’s anymore? And I know that this remission is, as always, temporary and the Crohn’s will come back but until then, what do I do?

And that’s why I haven’t written in so long. This blog was started to talk about my experiences with IBD but now (thankfully) I am symptom free. Where do I go from here?

The Big O

The Big O. What everyone dreads the moment they get their diagnosis of Crohn’s or colitis. An Ostomy. Oh, that’s not the O you thought I was talking about?

As soon as you get the diagnosis and spend more than two minutes googling IBD, the fear sets in. It’s escalated by everyone and their mother asking if you have one or will have one with that wrinkled half grossed out/half pitying look on their face. An ostomy is made out to be a worst case scenario from the get go and no one ever wants one, right?

Wrong. I wanted one.

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That may be a weird statement for some of you so let me explain. I have had Crohn’s almost as long as I haven’t. This birthday it will be 16 years, half of my life. For 16 years I have dreaded having an ostomy and this last surgery there was a real, even probable, chance I would at least have a temporary one. When I first heard the news, I was devastated. Hysterically-crying-in-the- middle-of-the-hospital-scaring-small-children-devastated. But then, like I always do, I wiped the tears and prepared for what was to come. I reached out to friends who have had or still have ostomies and was met by overwhelming love and support. These were men and women I had admired for years, awed by their strength, and if they could do it I knew I could (with their help).

I started using that She-Devil Google and at first could only stand to research ostomies for a few minutes before getting overwhelmed. Every day I would read a little more, look at a few more pictures, get my game face on. When surgery day came, I was ready. I was prepared, as much as anyone can be at that moment at least. And then I woke up without one.

And was slightly disappointed.

Ostomies are a badge of honor. These are the bravest, bad-assiest men and women out there. They have had the “worst” happen and they have adapted, they have smiled, they have lived. It’s a small and strong community and an honor to be a part of it. They are brothers and sisters, united in their battle against social stigmas, ignorant people and discrimination.  Look at the lovely young woman who was brave enough to post her bikini picture, ostomy unhidden, and the way this community rallied around her. Sure, ignorant people made jackass comments but it was drown out by the love and support she received. This was a community I wanted to be a part of, at least for awhile.

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To say I was sad I didn’t wake up with a permanent ostomy would be a lie. But I was ready for a temporary one. I just felt like if I finally had to face the Big O, at a time when I was prepared for it, before kids, with a loving husband to support me, I could have done it. And like all things, once the big scary thing was a reality it would turn out to not be so bad. Now it’s still out there, this looming dread of one day needing one. The good news is, after being entrenched in the IBD community and knowing how very un-scary it should be, it’s now a small o. Maybe even a baby o.

Sarah, Kristen, Katie, Linda, Dana and everyone else I’ve met who wears this badge: thank you for showing me it is something to be proud of, not ashamed. It is not the end of the world. It’s a new beginning.