Today marks 3 months since my surgery, and I have so so so much to be thankful for this year. Minus the freezing cold weather, this is my favorite time of year. I love the holidays and everything that comes with them. I love the food, the decorations, the family…One year ago I began my drastic downward spiral in my disease. I had just moved to New York and was lost, physically and mentally. I had to cut ties with all of my trusted doctors and move to a completely new place, almost blindly. I was so sick I had to leave my job and attempt to focus on my health and figuring out what was going on. I spent both Thanksgiving, Christmas, and New Years in a tremendous amount of pain and suffering and I missed my favorite time of year and ended up in the hospital for a week. These are memories I will never forgot. This year, I feel like I am looking at the world through an entirely new pair of eyes, a healthy pair. I am able to finally see the beauty that the holidays have to offer and I couldn’t be happier about it. Its become more and more evident to me that the city life isn’t for me, but even I have to admit that the city comes alive during the holidays, it really is magical.

            Thanksgiving is my favorite holiday of the entire year. Rivers birthday always falls in the thanksgiving break, and it’s a lovely way to kick off the holidays. We were fortunate enough to be able to spend a week in Cleveland for Thanksgiving and it was just what the doctor ordered. Anyone who knows me knows that my sisters are my absolute best friends in the world. My younger sister Kyra is my mini me and it was so hard to get through my surgery without her by my side. Before thanksgiving I hadn’t seen her since before the surgery. I couldn’t wait to show her my new “accessary” and tell her all about it. Needless to say, she thought it was pretty impressive. We spent the weekend acting like hooligans and of course, eating like pigs. Naturally, Sunday was spent at my dads watching the Browns win. Of course this wasn’t done easily and they had us on the edge of our seats all day. Chagrin falls feels more and more like home everytime we go there, again, especially during the holidays. On Rivers birthday we were lucky enough to get massages. Leave it to me to get major anxiety about a flipping massage. This is the first massage ive had since getting my bag and I haven’t yet been able to lay comfortably on my belly. Of course I had nothing to worry about, they were very compassionate and understanding and I wasn’t their first ostomy customer so they knew exactly what to do. For Rivers birthday dinner we went to our traditional birthday dinner location; benihana with my family and Rivers.  Although this week was supposed to be a “break”, anytime we are in Cleveland we make lists and lists of things we want to do, yet we never seem to scratch the surface. On Wednesday we went to the Cavs game. The atmosphere is so insane now that Lebron is back, its amazing the things he is doing to unite this city. Still goosebumps…

            Thursday was of course Thanksgiving. My mom, as always, cooked an amazing meal and we spent the day cooking as a family and playing games, it was wonderful. This thanksgiving felt different for me (as many things now do), and I spent a lot of time thinking of all the things I have to truly be thankful for this year. My family. Of course every year I am thankful for family, but to really see how much they are there for you in a time of need makes it so much more special. My family has never once judged me, but instead goes above and beyond to make me feel comfortable. Really I am not able to put into words how thankful I am for them, but they all know, so I will leave it at that. I am thankful for my job. Not only am I thankful to have a job, but I am thankful to have found a second family within my job. When I was sick they could have easily let me go, but instead they told me to take all the time I needed for my recovery, and sent me numerous words of support and encouragement. I am a lucky girl. I am thankful for my medical team. With a condition such as mine, that requires me to seek medical care often, it is so important to me to feel comfortable and confident with my doctors. I put all decisions up to my doctors and my surgeon, and when I thought I wasn’t going to make it, they gave me faith and found a way to change my life forever. The fact that I have their cell phone numbers and they often call just to see how im doing speaks worlds, I am not just a number to them, but a person. I feel beyond fortunate to have amazing insurance that provides me with this world class care, and I never take it for granted. Ostomy supplies are extremely expensive, and I will not require them for the rest of my life. On average, my monthly shipment costs around $600. That almost $7,500 a year, and if I live to be 84, it will cost me around $500,000. How someone could manage this without insurance is beyond me. I am thankful for my friends, both old and new. Even if we haven’t spoken or seen each other in years, your words matter to me equally. I am thankful for each and every call, text, message, email that I have received in the past few months letting me know that you are here for me. I love you all. I am thankful for my fuzzy boys who I attribute much of my recovery too. Animals have an amazing 6^th sense where they can tell that something is wrong. My dogs personalities changed when I was sick and they are finally back to being happy dogs now that they see mama is healthy and happy. Lastly, I am extremely thankful for my disease. I understand how that sounds, but it is true. I have gone through more highs and lows in the past 6 years than I hope any of you will have to go through in a lifetime. This disease has helped me find out who I really am. With a medical condition you learn so much about not only your body, but your emotions. I have had to dig deep to places I never knew existed to find a strength I never knew I had. But now I do. I am an IBD warrior, and I always will be, and I am proud of that.

This week is IBD awareness week, and I am so touched by all the support that I have seen. I cannot stress how important awareness is. Someone you love has IBD and fights everyday for a cure.

As always, tell those you love how thankful you are for them and how much you love them.

Happy holidays, C

The past few weeks have held major turnaround for me. Today is officially 2 months since my surgery and looking back I cannot believe that much time has past. The past 8 weeks I have been through hell and back but now I am able to see the big picture, which is the light at the end of the tunnel. Not to sound corny, but I am basking in that light. In the past week and a half a switch just flipped and not only do I feel AMAZING, but I feel worlds stronger than I have ever been. I have sure had my share of ups and downs and there were many days when I just wanted to crawl under the covers and give up, but all my perseverance has finally paid off and I couldn't be more grateful, I am truly blessed. The problem is no longer not having energy to do things, it's having too much energy and trying to do too much. At my last GI appointment, my doctor told me he waited to see me back in 6 months. SIX MONTHS. I am used to living in my doctors office, I know everyones name by heart. The fact that I now dont have to go back for half a year is crazy to me, although I am not complaining. I still have to have follow up appointments with the surgeon (who is totally gorgeous by the way!) and with the derm for the shingles (which are gone but still give me some pain). 

So, instead of filling my time with doctors appointments, I have found bigger and better things to do. Firstly, I started back to work. I use the word work lightly because I strongly believe that if you love what you do you wont have to work a day in your life. When you work with babies as I do, missing 2 1/2 months of work is worlds in baby time. When I left my buddy was hardly crawling and now he is a maniac running all over the place. I dont know if I would have had the energy to keep up with him before. 

We have also gotten to spend some time exploring the city, seeing people we haven’t seen in years, and doing things weve wanted to do but just couldn’t. One of the hardest things for me post proctocolectomy was traveling, and in a city like New York that made things very difficult. When getting places takes 45 minutes on a train and you have a condition like crohns, your basically screwed. Because of this we missed out on so many opportunities to do things that we would have liked to do. I for the first time feel like I am in control of my disease instead of it being in control of me. If I want to do something, damn it, im going to do it. No more apps that locate bathrooms or planning everything around meal times (when I had the most issues). I cannot fathom how anyone would be embarrassed of having an ostomy or a bag. It gave me my life back and I am so happy about it I could just shout it at the top of my lungs to everyone I know. I have to restrain myself from telling everyone I meet “Hi I’m Celina, isn’t my ileostomy bag cute?!” However, when I think of people who are embarrassed and hide it, it brings me back down to earth about how although at this point in my life I am in a good place medically, I wasn’t always, and I wont always be. We need a cure. As great as I feel in this moment, Im not an idiot, and I know, chances are, my disease will come back and find me further down the road. With my surgery, after 5 years, 30% of people will develop crohn’s in the small intestine. Each year the number goes up. 80% of crohns patients who have had surgery will require another one. I have had 2 and im fairly confident I will need another one. But that’s ok. It gives me motivation everyday to live my life to the absolute fullest while I still can, and if the disease flares up again, ill be ready and face it head on.

Something River and I both share a love for is Cleveland, and with that, Cleveland sports. We can almost always be found wearing some type of CLE clothing and watching a game. Since Ive started feeling better we have discovered the Browns Backers, which is a group of Cleveland fans living in the city who get together at a bar to watch the games. Basically a little piece of Cleveland heaven right here in New York. I think they have BB in every state and in several different countries, its awesome. Not only do we get to watch the Browns play, but its really nice running into friends we haven’t seen in years. Not to mention, I CAN FINALLY EAT CHICKEN WINGS without pain. Hallelujah. We also went to watch The King’s return to Cleveland. Although we didn’t get the W we wanted, seeing Lebron in a Cavs uniform again gave and continues to give me goosebumps. If your not from Cleveland, you wont get it, but to us, its deep.

Of course, everything cant always go my way. With the many ups ive experienced in the past month, come some downs. For starters my macbook crashed…the day after I deleted all my pictures off of my phone. Losing those memories tears at my heartstrings, but it teaches me to back it up next time. For once, River has been having some health issues. Nothing longterm serious, but stressful and painful none the less. He started complaining of some throat pain last week. At first we thought it was muscular, but over the days we noticed a lump was starting to form and effect his breathing. Long story short we ended up in the ER on Halloween and to both of our shock, they decided to admit him because they couldn’t quite figure out what it was and wanted to give him oral anibiotics. They probably wouldn’t have admitted him if it was anywhere else but his throat, but they wanted to be sure it didn’t cause any major breathing problems. So we spent the weekend in the hospital. He was only there for 48 hours, but I was EXHAUSTED trying to balance work, the dogs, the house, and of course being at the hospital every second I could be. I have no clue how river managed it for months. My hero.

The holidays are coming up, my favorite time of year. I cant wait to celebrate them HEALTHY and surrounded by the people I love. Life is amazing, enjoy every minute of it, try new things, pay it forward, and tell those important to you that you love them every day. 

“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!