“In sickness and in health”.

5 simple words that mean so much to me now. When I was a kid growing up I always dreamed about my wedding. I had everything planned out, the flowers, the way I would wear my hair, my first dance song, every little detail. I dreamed about saying these vows to my future husband but never did I imagine how much those 5 words would end up meaning to me. I’m going to brag about my husband tonight, because he deserves it and so so much more for everything he has done for me. I was 15 when we started dating, almost 10 years ago. Looking back now I know just how young we were, but we were already dealing with very grown up issues. River was with me from the very beginning of my disease, which is a lot for anyone to handle. The fact that he was able to stick it out with me and not run in the other direction screaming is truly inspiring to me. I hid how sick I was for a long time, I was in denial and kept it from even my parents for years. Everyone thought I had an eating disorder, including myself at times. I didn’t understand what was happening to my body and I was too scared to get help. River held my hand throughout the entire thing and encouraged me to seek treatment. For that I am forever grateful to him, but our journey didn’t end there. Throughout the years River has been around for 9 colonoscopies, 1 small bowel resection, 1 blockage procedure, 1 proctocolectomy, about 50 humira shots, numerous infusions, and hundreds of doctors appointments. “In sickness”. Looking back now I realize that our entire relationship has been in sickness. He really meant those vows. Im not throwing a pity party, aside from the “sickness” part we have lived a very blessed life together traveling to 3 different countries and living in 3 different cities together. Our adventures always seemed to have a black cloud over them however. My crohns was always in the background waiting to pop up and ruin the day. As a kid I never could comprehend how important those 5 words really are. I hope many of you never have to deal with the “in sickness” part, but if you do, I hope you have a “River” holding your hand through it all. My rock. Looking forward, I am beyond words excited to live the “in health” part.  For the first time, I am in remission and I have so many plans for myself that I was never able to experience before.

Never take “in health” for granted.

C     

This past week I was fortunate enough to get to come home and do some visiting and relaxing with my family. River and I drove home after he got off of work Friday and had plans to enjoy all fall has to offer in NE Ohio over the weekend. River had to be back in the office Monday, but we were able to go apple picking, get pumpkins, go to an apple butter festival and watch the browns BEAT the steelers. Pretty successful weekend I would say. Im so lucky to have River cart me around, I know it was a lot of work for him to drive here and then fly back to work at the crack of dawn Monday morning, but he did it so I could spend the week here. The plan was that I was going to drive back at the end of the week. As it turns out, sitting in the car for so long was excruciatingly painful (I cant find a comfortable position for the sutures on my bottom) and we decided I wouldn’t be able to do the drive home myself. So now, my loving husband is taking a bus to State College, PA where I will meet him and then he will drive us back to the city. This way I only have to drive 3 hours and he will finish the other 5. It was so refreshing to be out of the city and in the country for the week. Even happier than me were the dogs, who were literally in heaven. The more I think about it the more I know the city life just isn’t for me. Everyone is so…unfriendly. Its so refreshing when your at a store or walking down the street and people are actually nice to you, its something you just don’t see in NYC, everyone is too busy to care.  They always tell you, “live in NYC once, but don’t let it make you hard”. This is a concept I am now able to understand. Being back home has been like a breathe of fresh air. Along that same line, throughout this whole surgical process I am shocked and overwhelmed at the amount of support I got from friends both old and new, family, and even strangers. I started this blog as a form of therapy for myself to help me cope with the medical struggles I was dealing with. Never in a million years did I think anyone would read it or care. My blog is now being followed by people in 15 countries and many people have reached out to me to let me know that my story has in some way impacted their lives. Ive had people thank me for teaching them about crohns, people tell me that I gave them the courage to talk to others about their ostomy, and many other touching stories. I cannot thank you guys enough for this support. You have no idea what you have given me by simply sending those messages of kindness. I come off brave and strong, but I am scared everyday, especially before my surgery, and hearing from people who have been following my story is so touching and helped me in more ways than I can explain. I cannot stress how important awareness is to me and how any small amount helps. For all of you that are looking for ways to help I encourage you to visit the CCFA (crohns & colitis foundation of America) website, share it on your facebook page or with your co-workers. I have had so many people tell me they didn’t know what crohns was before reading my blog and that makes my heart hurt because I remember when I was one of those people (pre-diagnosis) and had I known what crohns was I would have sought medical care long before I did.  I suffered for years before going to a doctor because I thought I would be looked at as crazy for complaining about having what I thought was a bad stomach ache. Awareness…

            Being 6 weeks out of surgery im starting to be able to do a lot more. I see my surgeon next week where I am hoping to be cleared to start light exercise again, hopefully yoga, and be told im able to lift more than the 5 pound limit ive had (I cant wait to be able to pick up my buddy Jonah again when I go back to work!). This 6 week mark also means im able to start incorporating more foods into my diet. This is something ive struggled with out of fear. I never fully understood how much this surgery would change things for me. The ultimate goal was that I would eventually be able to eat everything (including all the things I was never able to enjoy because of my crohns). This includes things like salads, spicy or fried food, or raw fruits and veggies. In my head im scared that now that my digestive tract is about ½ the normal length that things will get blocked in my stoma, like I experienced shortly after surgery. This is a common thing to happen to people with ostomys and is “treatable” but its also very painful and scary. Ive had to cope with the way eating feels now, it’s a whole new process. My body just knows that things are different, for example, for some reason I now just instinctually feel that I need to chew my food a ton more than I ever did before, its very hard to explain, but it just happens. Im also dealing with something called tenesmus, which is the feeling that you have to go to the bathroom even when you don’t have to. Obviously, I no longer have any control of when or how I go, it simply just happens into my ileostomy bag. It’s a very strange and painful feeling to think you have to push, but cant. My surgeon assures me that its normal and will pass. He thinks im crazy as I have so many questions and am paranoid about virtually everything. Everytime I see him he has to remind me that my body went through a drastic change and it will take time. I hope hes right, I cant wait until im back to normal and in the full swing of things again.

It’s the small things that matter, for example, last night I ate an apple. Im working on setting small goals for myself, every step counts.

Until next time, C

Today marks a special weekend for me. Friday was one month from my surgery. I have such a hard time thinking about how much has changed in that short month. I guess I never realized how sick I really was until now. When you were as sick as I was for as long as I was, it becomes routine. It becomes normal. I lived in constant pain, discomfort, and fear for 6 years. One month ago that all changed. Its taken me a full month to grasp the fact that I’m healthy…I don’t know how to handle it. I got some blood work results back today and for the first time in 6 years they were normal. Every single result; normal! I, for the first time, can say my crohns is in remission. None of this would have been possible without my ileostomy. I can proudly say that I am an ostomate, and one month ago it saved my life. Today is National Ostomy Awareness Day, a day that I now feel very strongly for. I, for whatever reason, feel no shame about my disease and my ostomy and am happy to share it with the world, but so many others don’t feel the same. There are nearly 1 million ostomates in the United States, and 120,000 more are joining the “club” each year. So many of these people live in fear because society is not always accepting of anyone who is the slightest bit different. To me, this is just ignorance. People who judge others based on a disability that makes them look different is ignorant. But as an ostomate, I also feel it is doing ourselves a disability by not trying to share our unique stories so that society will learn that we are not gross, but rather just like everyone else except we just don’t have to sit down to poop! I look at my ileostomy bag as a gift. It changed my life and for that I am forever greatful to that little bag. On this ostomy awareness day, I urge all of you to help me bring awareness to IBD and ostomys. Irritable bowel diseases, like crohns, are considered “closeted” diseases, meaning they are not often talked about. In the past few years I’ve seen improvements in the amount crohns is talked about, but its not enough.

Because its ostomy awareness day, I wanted to talk about my ostomy and explain how my bag works a little bit. Before I had this surgery I knew next to nothing about ileostomy bags or how they worked. I had never seen one or known anyone who had one. However, now that I have one, I’ve learned so much about them and have found out that several people I know have them and I just never knew. The bag is very easy to hide and doesn’t have many restrictions associated with it. Once im cleared surgically, I will be able to do everything I was able to do before. Having this bag is not a handicap, I will still be able to swim, play sports, run, and do just about everything else. I probably wont be playing contact football anytime soon, but that’s ok! There are 3 main bag supply brands; Hollister, Coloplast, and CovaTec. There are limitless styles of bags and I’m still experimenting with which style works best for me. The companies are very helpful and I have a case manager at each company who has been helping me find the best style and size for me. They have all sent me different samples of the kinds I want to try and once I find the one I like I will be able to place a bigger order for them. There are different types of bags for different purposes, for example, there are mini bags that can be used when you are trying to hide the bag, during swimming or intimate moments. There are also one piece bags that are very easily hidden under clothes because of how smooth it is. I have narrowed down what I like to two basic styles. There are one piece bags, that you stick directly over your stoma and you cannot take off until you change the bag, and there are two piece bags that have a flange that you stick to your body over the stoma, and then the actual bag clicks directly on to the flange. The two piece bags can be taken off any time without having to change the whole appliance. I have tried both and prefer the two piece bag because I like the idea that I can take it off when I shower or if I’m just feeling claustrophobic. My main issue with the one piece bag was when I tried it I felt trapped that I couldn’t take it off if I wanted to, I had a mini panic attack about it and had to take the whole thing off because of it. The whole appliance is changed every 4-5 days, and the bag is emptied about 5 times a day. The process of changing the bag starts by eating marshmallows. I know it sounds silly, but eating two marshmallows about 30 minutes before you change the bag slows down your intestines and prevent stool from passing while you have the bag off. This trick can also be used when you shower or take a bath if you choose to do so without wearing the bag. Next, you use an adhesive remover to get the sticky part off (its like a giant very sticky Band-Aid). Next, you clean the area around the stoma. The stoma is the intestine that was pulled out of my abdomen. The stoma is about one inch in size and round and red. It feels like the inside of your cheek, its supposed to be wet and red. I have no feeling in it, so it doesn’t hurt. When I was in the hospital (and high on drugs) I named my stoma Rudolph because he looked like Rudolph the red nosed reindeer. We now call him Rudy for short. Cleaning the skin around Rudy is the most important part. The skin is pretty sensitive and having an adhesive on it 24/7 can cause irritation. When I change my bag I try to let the skin breathe for a little while to prevent irritation. Before you re-apply the flange (sticky part that the bag clicks onto) you apply a skin barrier/protectant to protect the skin from getting irritated. So far I haven’t had any skin issues, but if I ever get them I have an ostomy nurse at the hospital who is trained in just ostomys who can give me suggestions on what to do. Next, you basically just click the bag into place. There are a bunch of other smaller little steps in between, but that’s the general idea. The whole process takes about 15-20 minutes and I do it twice a week. Emptying the bag takes about 2 minutes and depending on the day I empty it about 4 or 5 times.

Overall it certainly has been a major adjustment, but I have to look at it as a blessing. The amount of time I spend in the bathroom has been cut in half and the crohns pain is gone! I hope I was able to teach you something you didn’t know about ostomys today so that if you ever encounter someone with one you will know a little bit about it.

Until next time, C

The stoma "Rudy"

Cleaning the skin around the stoma 

Applying the flange 

Finished!

I’ve almost made it to one month mark! its definitely been a stressful month, but I’m starting to see improvements everyday.  Of course, once I started making positive steps, something had to go wrong. Last week I noticed a small rash on my back that was unlike any rash I had felt before. It was small, but it was extremely painful. I watched it for a couple of days and realized that it was becoming raised up and growing. I’m majorly paranoid that something is going to go wrong; every grumble of my stomach is an obstruction, every rash is an infection, etc…  My main concern with this rash was that it was a sign of a bigger problem inside, my first though was I had an infection that manifested itself as this rash on my back. I got a hold of my surgeon and sent his office a picture of the rash and they told me it looked like shingles and I needed to go to a dermatologist immediately. Upon researching shingles it made absolute sense, all my symptoms matched. For those who don’t know much about shingles, its essentially the chickenpox virus that stays dormant in your body from childhood. It can “wake up” later on, and comes in the form of shingles. Typically it occurs in older people or people whose bodies are stressed out or have a weak immune system.  I’ve dealt with some pretty painful things in my day…like a major surgery just 3 weeks ago…but the pain from this rash was absolutely UNREAL. I would just cry for hours it was so painful and nothing could relieve the pain. It literally felt like someone was stabbing me with a burning hot knife over and over again. It was also extremely itchy, but I got no relief from scratching it, only more pain. Basically misery. Luckily I had a dermatologist who hopefully could get me in quickly. With my luck, when I called I was told that my derm had left the practice. COME FREAKING ON. Getting to these appointments is a huge struggle these days. Although I’m more mobile now, its hard to be up for long periods of time and in the city it takes forever to get to my appointments. Taking the subway is extremely difficult and this was just one more thing that I did not need to deal with. When all was said and done, yes, I was diagnosed with shingles and started on an anti viral. A week later the rash has definitely gotten smaller, but the pain is still there. Shingles grows on nerve roots (why its so painful) and people sometimes experience pain for weeks, months, or even years after the rash is gone. Hoping this doesn’t happen to me…

            Earlier this week I met with my GI doctor for the first time post-hospital. At this point, because of the surgery, the crohns is in remission. I achieved remission because we were able to remove all the areas that had active crohns (colon, rectum, anus). This doesn’t mean, however, that the crohns cant come back in my small intestine. Originally I had active crohns in my small intestine, and had 9 inches of it removed in 2012. After my first surgery my doctor chose to not put me on any medication. Looking back, this was a major mistake and makes me think that this surgery could have been potentially avoided if I was put on a drug post surgery. The goal of this GI appointment was to brainstorm what maintenance drug they wanted to put me on. They explained to me that we would be able to try some of the meds that hadn’t worked in the past in hopes that they would work now that ive had the surgery. For several months leading up to the surgery I was taking a drug called 6mp, which is actually a chemotherapy drug that is used in severe cases of autoimmune disorders, like crohns. This is a pretty intense medication, and not necessarily what I wanted to take long term, but it was plan A. When my doctor found out I had shingles he was very concerned and said I needed to stop the 6mp immediately as it was a rare and serious side effect of the drug. That means, another drug to cross off the list. I had been taking the anti viral for the shingles for a week while also taking the 6mp, which my doctor explained was essentially feeding the shingles virus. Greattttt. We eventually decided on humira, which is an injectable anti TNF drug that I had taken for a couple years with mixed results. It worked for a while, but then stopped. They are optimistic now that my body is healthy it should work in keeping the crohns from coming back. We have to totally wait until the shingles virus is completely gone before starting the Humira, I have an appointment in 3 weeks at which time well start it.  

            As far as the recovery goes, I am right on track where I should be. My appetite is back, but I’ve had to reteach my body how to eat. I’m only able to eat very small amounts, so I’ve been eating around 5 small meals and snacks a day. I still am not able to eat many fresh fruits or veggies aside from bananas, potatoes, and cooked carrots. It seems like every girls dream to be able to eat nothing but garbage and not have to worry about getting fat (im trying to gain 10+ pounds) but once junk is all your able to eat it gets old so fast. I would die for a giant salad nowadays…The major struggle is energy. I’m working on getting up and doing something small everyday. I’ve been able to take the dogs on very short walks during the day, which they love. Its amazing to me how tolerant they have been of me. They know something has changed with mommy and they are very gently and patient with me. Ive also started pushing myself to do some bigger things. We went out to dinner with Rivers mom, Arden, Amber, and cousin Cori a couple of weeks ago and this past weekend we went to the dog beach. Although these “excursions” are exhausting and hard, they give me a glimpse of how fun life will be when im back to normal. At the beach I was majorly proud of myself for showing off my bag, no shame!

            In the coming weeks I have another appointment with my surgeon, dermatologist, and then GI in a few weeks. Everyday im setting small goals to achieve to start building my endurance back up. In the middle of October im taking a trip to Cleveland for a week to do some recovering with my family and get out of the city for a little bit…cant wait.

Until next time, C