Inflamed and Untamed

If I put on nice clothes does that make me better? Does the makeup I wear, the fact that I know how to do my hair, or that I have great fashion sense mean I am okay? Are my insides as neat and polished as my outside? 

The truth

I don’t know why I am complaining. It’s more of a rant that I just want to get out here on my blog, the space I have created to say all the things I wish I could say to others about my disease. Hopefully this space has educated some of my friends, family, co-workers, the world…

The pictures above I took this morning on my way to a meeting at work. The first time I have been to work since May 25th and only to stop in today for an hour (that turned into three hours because I got my brows waxed and painted my nails and did a starbucks run, and talked to friends!). I wanted to dress up, I didn’t have to. I wanted to because I haven’t gotten out of pajamas much in the past month. I have been sitting at home on my couch trying to catch up. It feels good to wear something pretty and to look pretty sometimes. Then why is it that it bothers me when people tell me they are so glad I am better. Better! Better? You didn’t even ask me if I was better. 

Since I have been home from New Jersey I’ve showered twice. Up until now I only admitted that to one other person. But hey, there’s no shame in my game. TWICE. What do people think I do all day? As if the health of my insides can be determined by how good I look on the outside. The truth is when you don’t see me I am here, on my couch, doing a whole lot of nothing. I don’t lead the normal life of the average person who gets up, takes care of their family, gets ready, works a 9-5, comes home and makes dinner, helps with homework and chores, or if younger goes out with friends and then goes to bed. I work at most 20 hours a week but normally it comes down to much less. No more than 5 hour days ever and that takes everything out of me. There is no going out afterward. There is coming home to crash and that’s it. It’s a horrible and boring life to lead. Don’t get me wrong, it isn’t always like this. I make room for fun but I prepare to deal with the consequences of that fun. During my good days I am able to do more and I live it up because I know it won’t last forever.

I’ve become excellent at making myself look good with little time and effort. I wash my hair once or twice a week since it’s coarse and thick and can handle that. So all the effort I have to put into my hair is just waking up, brushing through it, and throwing a few curls in. Getting dressed takes no time at all as long as I think about what I want to wear the day before. So what does take me time is my makeup and I usually get up super early to give myself ample time to sit at my vanity and get ready. Clothes, makeup, jewelry, hair and all of a sudden that means I feel awesome. According to everyone who sees me and tells me “I am so glad you are feeling better” before even asking me how I am feeling. There is no better because there is no cure. There are just varying degrees of how bad it is and when it’s less bad than normal then to me that’s good. We have to adjust what is normal, or good, or healthy because to the average public they’d never be able to put up with what I go through daily. And I do it like a goddess ;) 

As a female losing weight seems to mean you look good. I’m 5’5” and weigh 103 pounds currently and though I carry weight well and don’t look emaciated my BMI is officially too low. Why? Because I am missing an intestine and the one I do have is worthless most of the time. Yet when I lose weight “I look great!” 

My days are spent inside. Indoors when it’s nice and sunny out and my mind tells me it wants to do things but my body says no way, that’s too much. I have been sleeping ridiculous hours (I slept in until 1:30pm the other day) because I am catching up on the lack of sleep I had while in the hospital and during traveling. My joints and bones ache every single day because of my arthritis, my insides hurt, and I am constantly fatigued. I say this not to complain but to just be real. I don’t complain. I’ve learned to live with what I have to live with and I can do it with a smile on my face. 

Looks are deceiving. I got ready this morning. That doesn’t mean I am all better. But I know that people are just being nice and are happy to see me and are complimenting me. So I graciously accept but still have that twinge of annoyance for the things others will never understand. 

Today I thought i’d talk about my motility disorder since that is a large part of why I ended up in the hospital this last time. I mention my dysmotility in the About Me section of this blog, but aside from talking about it very briefly in a few blogs and videos, I have never really gone in-depth. 

So here’s some fun facts on the inner makings of my body. I have Crohn’s disease as we all know. I have a j-pouch (or ileo-pouch) as most of you know, and I have small bowel dysmotility, that I don’t think many of you know about. The combination of all of this makes for interesting guess work when it comes to figuring out what is going wrong when I end up in the hospital. And sometimes it can be a combination of a lot of things. What really frustrates me is a problem that can’t be fixed. If it’s my Crohn’s disease flaring up then medications can be adjusted or surgeries could be had and even though all of that sucks big elephant… tusks (geez, where did you think I was going with that!) at least there are some options most of the time. If it’s my j-pouch that is causing the trouble then the same thing goes down - try new medications, try X,Y,or Z, or have the thing removed (way easier said than done) but there could be hope for a better life. With my dysmotility it doesn’t work like that. Motility disorders are pretty rare and there are not many treatments out there. There are a few medications that might help the bowel contract but otherwise treatment is listed as hospitalizations, NG tubes, and the patient feeding themselves either liquid diets, TPN, or some form of tube feeds. That frustrates me because of the ability it has to interrupt my life. 

So without writing a novel I will try to give you a little of my story. It was discovered I had a motility disorder after the removal of my colon when I first started using my j-pouch. Most people who are missing their large intestines need to use the bathroom many more times a day than the average human since they no longer have the organ whose primary job was to absorb electrolytes and water from waste and hold it there until the urge to have a bowel movement is present. With the absence of the colon there is a shorter digestive tract and not as much space to hold waste and therefore the patient would need to use the bathroom more often. Especially a person who has a brand new j-pouch that their body has not adjusted to. I however could not use the bathroom. It stumped my surgeon and for me caused a lot of pain, bloating, nausea, vomiting, and malnutrition. My symptoms mimicked full or partial blockages and we constantly had to investigate what was going on. I was unable to eat without throwing up or feeling like food was just backing up in me so I was on TPN for months. I had to go through things like having a drain inserted into my j-pouch to empty things out and it was just not a fun time in my life. We concluded after months of awfulness and tests that I had a motility disorder. It took me forever to get off of TPN and start eating real food because once i’d come off of it I would eat and throw everything back up. It caused me a ton of pain just to eat and without my TPN my weight dropped to 82 pounds. See! So much of my story that I realize I haven’t even shared here yet. 

It’s quite possible I have had a motility disorder for years and years. Growing up I thought it was normal for a person to not use the bathroom for a week to two weeks at a time. It’s possible that my colon also experienced dysmotility but I was a kid and I didn’t know what was normal or not normal and I attributed all my pain and distension to my IBD. If I wasn’t in an active flare-up that was causing me to go to the bathroom a gazillion times a day and bleed then I was never going to the bathroom. But my colon is gone now and who knows if my whole system was affected or not. No sense in thinking about that now. 

What is small bowel dysmotility? In a human being liquefied foods, digestive enzymes, etc. are pushed onward through the digestive system by muscular contractions. These muscular contractions are called peristalsis. When these contractions are impaired (and depending on how severely) then contents become trapped and pain, bloating, naseua, vomiting, and even malnutrition can occur. For some people symptoms can be absent or trivial but for other patients attacks are more recurrent and severe and can mimic complete intestinal obstruction. When this happens it is called “intestinal pseudo-obstruction”. 

What are the symptoms? Pain, cramps, bloating, malnutrition, naseua and vomiting (especially right after eating), diarrhea for those who develop a bacterial overgrowth due to the dysmotility, or constipation. 

How is it treated? First they must rule out a mechanical obstruction (ie: blockage) causing the problem. Dysmotility is rare and right now there are not many treatments, it’s more about managing symptoms. There are a few medications out there called prokinetics but they are not very effective in most cases. For people with severe dysmotility hospitalizations for fluids, intravenous nutrition, and an NG tube for decompression of the intestine is necessary. However TPN comes with many risks and therefore liquid diets or other forms of feeding like a venting jejunostomy, peg tube, etc., could be more beneficial. 

What does this mean for me? Some people, especially patients who have j-pouches, might think it’s lucky for me that I don’t go to the bathroom. Even with a j-pouch I average 1-3 times a day but still there are days when I don’t visit the bathroom. I was unable to go for 2 weeks! That’s just insane to me for someone who doesn’t have a colon.  It might sound nice but i’m just suffering in a different way. This causes me a lot of pain, bloating, and trouble eating. On top of having to manage my Crohn’s disease which causes me to lose weight rapidly when I flare up because I don’t absorb nutrients, and with my missing colon having to stay on top of keeping myself hydrated and full of electrolytes, I also have to worry about my motility. With dysmotility being so rare there are not many specialists out there to treat it and the treatments are really not awesome. Who wants to keep having their life interrupted to go into the hospital and have NG tubes put in and exist on TPN? I hate it. I just want a normal life. Liquid diets can help but it sucks. I miss food when I can’t eat it. And life revolves around food. I feel so much pressure because socially that is what people do. They want to go out to eat, they want to have you over for dinner or take you out to dinner. This time I could have gone home on TPN which would help greatly but…I don’t have health insurance. So I suffer and my only choice at this point is to go into the hospital when I can no longer stay out. Motility disorders mimic full blockages which is why when I went into the hospital that is what they thought I had going on. My small bowel is extremely dilated and even got bigger when I was in the hospital. 

If it isn’t one thing it’s another! I just get so tired sometimes. My j-pouch comes with certain issues, my Crohn’s disease causes me terrible problems, and when I add to it my motility disorder it’s just such guess work to figure out what on earth is causing what or how to make any of it better. 

To read more on motility disorders you can read the links below: 

http://www.ddc.musc.edu/public/symptomsDiseases/diseases/smallBowel/dysmotility.cfm

http://www.agmd-gimotility.org/2012%20Digestive%20Motility%20Facts%20III.pdf

http://www.ncbi.nlm.nih.gov/pubmed/11096558

http://www.agmd-gimotility.org/pseudoobstruction.htm

Me: “You guys have never watched Salad Fingers?!! What on earth do you watch on YouTube then???” Everyone: “YOU!” 

Before I tell you about my 14 days in the hospital, I want to tell you about my 4 days in New York and New Jersey. This was what revived me, put the strength back in me, and made me feel…human again? Not the words I am looking for. You see, I just spent time with 4 girls who have Crohn’s disease or ulcerative colitis that I have been talking to online. Seeing them right after the hospital made me feel again. I told you before how to survive I am able to shut off my feelings and become mechanical to get through life. That is what I did the two weeks I was in the hospital. I shut down, I stopped feeling, I went through the steps and the motions to get myself through it. Yes I cried and I hated every second of it, but there is no way i’d be able to go through what I have to go through in the hospital without shutting myself off. I do what needs to be done (a lot of the time alone and scared) and I tell myself it’s no big deal. Seeing these girls, being around these girls who have been through the things that I have been through…they put me back together again. Laughing, goofing around and being silly, and then talking about more serious health related things that they understand brought back the human side to me. I was feeling again, and I was feeling happy. I needed that. 

This blog is going to be a little gushy and probably long, I apologize.

My sisters! First I guess I will explain the above picture. One of the girls gave us all bracelets and she wrote us all such sweet notes. Mine is the one that says hope. She said she gave it to me because she thinks I give people hope, and that I needed hope during the past 2 weeks when I was in the hospital (she was right!). It makes me smile to think that I give people hope. If that is how people look at me then I have done my job. The other bracelets are perfect for the other girls too. Now every time I wear mine I will think of my girls and the fun that I had this week with them. 

(So many products for colons and not a single one of us in this picture has a colon to use them. haha!)

I say this all the time. You’re probably sick and tired of it, but it is SO worth it to connect with others in person who have gone through this. I suppose it’s why I always come back here and share with you my stories about who I have met and how we connected and how important it was to me. Attend an event like Get Your Guts in Gear, Camp Oasis, IIF’s Climb for Crohn’s and Colitis, Team Challenge, Take Steps, The Gutsy Walk, etc., or connect in other ways. You will not regret it! Well, unless you meet someone totally creepy. ;p

This particular group of girls I met in different ways online and then I connected us all when I noticed the similarities between us. Though we had already been talking for a long time, the beginning of this year brought about a lot of tragedy, stress, and awfulness into all of our lives and through that we became closer and stronger while helping each other through our individual struggles. The cool thing is we also get to celebrate the fun things in our lives too. Like this Monday we threw one of the girls a Birthday/Bachelorette party. I have a feeling that these ladies will be part of my life for a long time to come and we will get to go through a lot together. Here is how it all came to be…

Enter M: She emailed me after stumbling along one of my videos while she was sitting on the toilet! She emailed me FROM the toilet! And she told me so in that email and told me that I would either find her crazy or that we would connect instantly because from my video she could tell I had a silly sense of humor too. Needless to say, we connected instantly! M and I connected because she has a j-pouch like me and found out later she actually didn’t have ulcerative colitis but she had Crohn’s disease just like how my story went. We had a lot in common with our health and I believe she was the first person I connected with online who had a j-pouch and Crohn’s disease. I loved her silly sense of humor and talking to her was just easy and fun. This girl is hilarious, smart, talented, and possesses so many qualities I wish i had. Luckily I can lean on her and use her strengths when I need an extra push. She’s my tough love! In the most loving way because she is a true friend and a true friend helps you in the ways you need to be helped! 

Then came J: I noticed J when she started commenting on my Inflamed & Untamed facebook page. I would always think that this girl was super smart and always on the same page as I was on. She gave great advice to others on the page and once we connected on our personal facebook pages we started talking a lot more. I could relate to J on a lot of things like how getting sick took away the independance we had worked for. She was losing her house and having to stop working and move back in with her parents. It was so nice to have that connection of knowing what all those things feel like. I felt less alone talking to her and knowing that someone else was going through the exact same things I had gone through. 

Then there was B: I have no idea how we became facebook friends! Did she add me? Did I add her? I just don’t know! I just know that she was on my friends list for awhile and I would always see her pictures and her statuses and want to reach out to her. I think maybe we first found each other on jpouch.org but I am not sure. All I know is that during one of her hospitalizations I sent her a message and slowly we formed a friendship. Little did I know that this girl would become one of my best friends. My twin! B also has a j-pouch and found out later she had Crohn’s disease and our health stories and struggles match up in so many ways. And as we grew to know each other we found out just how freakishly similar our lives have mirrored each others. Seriously, I can’t say how much I love this girl or how much she has helped me. We are wicked (ha!) similar, it’s crazy!

Along came M: It was only a year ago that she emailed me the first time, yet it seems like we have been sisters our whole lives. I’ve written about her before, the wonderful Marisa Troy, so you know just how much this girl means to me. She knows me, the darkest parts of me that I do not share with others, and the bright parts of me I try to share with the people I love most. She makes me feel “normal” because she is just as abnormal (kidding!) as I am. :) 

Why I loved this trip? I came fresh from the hospital the day before. Normally there is no way i’d travel anywhere but when I know that I am going to be with people like me it makes it a million times easier. I wasn’t the only one who was traveling just out of the hospital. One of the other girls was in the hospital the same time that I was, but there was no way we were going to miss getting together. It was a challenge for all of us in our own ways but the reason I keep doing things like this is because each time I learn more about myself. I realize that I AM capable of stepping out of my comfort zone, and I feel a sense of accomplishment after traveling. Seems silly, what normal person feels so accomplished because they went somewhere? But for us, sometimes that can be a big deal in itself. 

What happens when 5 girls with IBD who have never met before get together? 

We wear pajamas all the time. Even to the store and no one cares. No pressure to do a lot, go places, or exert too much energy. Just a staycation of laughs and friendship. 

We worship ones new $400 dollar bidet with heated toilet seat and all. 

We watch our friend juggle donut holes WHILE infusing TPN! So much talent. It’s not just pretty faces here people. 

It was completely fine when I had to excuse myself a few times to go throw up (still dealing with trying to eat again and a few things) and I didn’t feel uncomfortable being somewhere other than my own home. 

There is a plethora of medications to share. 

Stepping out of ones comfort zone in a more comfortable situation, like wearing a bathing suit for the first time after a surgery or trying new foods or stepping out of your daily routine. 

Red solo cups are not for alcohol. They are for the cup song from Pitch Perfect…even if you are way too old for that! http://www.youtube.com/watch?v=kCVmW9E1gFc

Shot glasses are broken out for shots of muscle milk. haha 

Eating or not eating or eating strange is not strange here. 

No worries about bruises from PICC lines, IV’s, or heperain shots showing. No worries about giving yourself an injection, ports or ostomies showing, or infusing iron, fluids, or TPN. 

Plenty of talk about what we have gone through and where we’d like to go from here. 

And “normal people” things too like throwing a friend a birthday/bachelorette party, watching reality tv shows, sitting in the sun by the pool, laughing at inside jokes, and shopping. 

It was a great trip and I am so happy we were all able to make it. When we first started talking about planning a trip I didn’t think it would ever happen. I am really proud of these girls for doing this because I know a lot of it was outside of their normal comfort zone. I just want to say that there are SO MANY of you who I could picture myself hanging out with like this too. If only I could travel the globe! I’d head to down to Australia and see Carolyne and Kelly, to Europe to see Stew and Erik, up to Canada to see Pearl, and Brenda, and Justin. You get the point! I just hope you know how many of you have really touched my life and that I wish that i was able to do this with everyone. Wish I could have seen more of my east coasters this time but it was such a quick trip. I can’t quite express in words how much my life has changed since meeting people who share these things with me. It is such a helpful experience to talk to people who know what it’s like. I hope that you are all able to do things like this. 

I feel like I shouldn’t have to explain this but I guess because I put myself out there so publically people feel the need to make assumptions about my life thinking they know it all when they only get a glimpse. The last time I traveled I received some comments wondering how I paid for my travel and suggested that I was a liar when I complained that I didn’t have any money. What a joke! So let me tell you that this recent trip I took was all on borrowed money. That I wouldn’t have been able to do this except I have some really amazing people in my life. The truth: One of the girls I came to see loaned me the money for my flight and made me promise to not feel guilty simply because she wanted to have me there. Another friend helped me book my tickets and use her credit card and really just did so many things she didn’t have to do to help me out. And another one of the girls I came to see helped me get a flight home when I needed to adjust plans. So that is how I did it. In fact, to get into even more of what you don’t see is that once I arrived in New York I was trapped at the car dealership for 2 hours because I don’t have a credit card in my name. Why don’t I? Because I can’t get a credit card. Why not? Because medical debt has screwed me over so bad that I am completely dependant on others. It sucks. It sucks bad. So don’t be fooled by the happy pictures and the fun times. There is so much more that goes into my life that I don’t share. Keep that in mind and be kind. Share in my happiness that I get to enjoy these times because they are what gets me through the hard times. 

As soon as I am able to articulate in words what happened to me in the hospital I will update you guys. For now know that I am still working on getting better.

With love, 

Sara 

P.S. To you four girls, I seriously hope you know how much I adore each one of you. You are all so beautiful, strong, and pretty hilarious too. I had so much fun the few days we were together. It went by too fast! Thank you for all of the laughter, it came at such a needed time. I really do love you and I hope you know that you have a friend in me forever. 

Still chuckling to myself that this conversation occured:

Nurse: So you have a j-pouch?

Me: Yes

Nurse: What side is it on?

Me: dhlewjke! 

In good news my distension has come down a lot and the bruising on my belly from heparin shots isn’t as bad. This is the first day I’ve opened my computer in 2 weeks. I will update shortly. 

I wonder why they had to double check my age. Did my side pony tail and My Little Pony shirt throw them off? haha

Cancelling sucks!

I’m on a blogging role today. I guess I have a lot on my mind. This time it’s guilt. Ohhhhh guilt! You suck as much as cancelling plans sucks. 

Tonight is my cousin’s bachelorette party. I LOVE my cousin and I would love to be there for any one of my family members and the things that are important to them, because they are important to me. But I am due for remicade in a couple days and because my body is so dependent on it I start to flare up the week before. If you checked out my last blog you know what sort of shape (round shape) I’m in. 

I don’t know why it’s so important for me to make others understand, but it is. It all comes back to having an invisible disease and that if people were to see me I look like a healthy young lady. But it’s such an act. A hard act to keep up a lot of the time! To put a smile on my face and appear to not be suffering when I am not feeling well. I know you all know what I mean. Of course I could give up this act but who wants me to go around complaining all the time? No one. I know those type of people and it’s just not me. 

This week has been hard on me in a lot of ways. I only returned from New York on Tuesday and have been working ever since. And what you have to understand about me working vs. a normal person working is that I only work 5 hours a day and sometimes a lot less than that because that is all I can handle. And I only work 20 hours a week, but more often than not it’s much less than that. It makes me feel sad and inferior and like such a low life but that is all I can do. And when I come home I am on the couch or in bed the rest of time. It’s so much for me to do anything more than that which is why I am hardly out with friends or doing anything. But because I am awesome at doing my hair and makeup and selecting the perfect outfit and shoes people are tricked into thinking I am fine. I wake myself up 3 hours before work so that I can get ready slowly because most of the time I am dizzy and in pain and tired from not sleeping the night before. 

Today I woke up with what I call “the bleeding feeling” in my gut. When you know that you’re flaring. I had to make the choice to eat and not be hungry or dizzy but be in terrible pain and bloated or to not eat and be dizzy and nauseous throughout my work day. So I didn’t eat until I got off work. And since I am due for my infusion and not feeling well my energy is so low, i’m in pain, and yada yada yada. Gosh, I even hate to hear myself complain here. 

Anyway, I was supposed to go to my cousins bachelorette party tonight that started at 8pm. It’s crazy to me that I find 8pm too late! What am I, 80? But the thought of drinking and dinner and dancing…well, I know I just can’t do it. And I have to work again tomorrow and right now I have to reserve all that I have for the 5 hours I am at work tomorrow. The problem is is that I feel terrible. I feel so guilty. Because I REALLY want to be there. It sucks to have to cancel plans and then have people who don’t fully understand get upset with you. I feel like dirt. And yes, I know it’s not my fault but that doesn’t make it suck any less. 

I sometimes do know what the person who posted “will I ever be normal” means (we discussed this in the IBD Round Table #3). It’s a longing to be like the people who don’t have to deal with things like this. I get it. However while I sometimes feel sorry for myself, I am able to quickly move on. This is me, it’s who I am and there is not a thing I can do about it. I can only do my absolute best. 

Love you guys! 

Gooooodness you guys! I can’t believe I am posting these but I know I’m not the only one who deals with this. 

I wish I could say that these pictures were edited but aside from the lighting they are not. Gotta love Crohn’s disease! I’m not pushing my tummy out either. It’s super hard and distended. Yowsa! Only ate once today and had very bland soup and pasta. Woke up feeling pain so rather than dealing with this today at work I dealt with hunger instead. :/ 

Fun times. 

We all have our opinions. It’s what makes the world go round. I dig it. 

I hate the implication that this disease is my fault. I think it’s one of the worst things you can do to a person who is suffering with Crohn’s disease or ulcerative colitis is suggest that the person did something to cause it or that they can do something to make it go away. WHY would I cause this? I have nearly lost my life. The suffering I have been through is insurmountable. The things I go through and have been through I would never wish on my worst enemy, let alone enjoy keeping around. This is not my fault! It’s not yours either. 

I laid here for six months straight and underwent things that my mind has blocked out. I have been in and out of the hospital so many times and my whole life has changed in so many ways. WHY would I go through that if I could just make a simple change? And don’t you think I have tried?! That WE have tried? 

I hate having to bite my tongue but I was put in that situation yesterday. I listened as someone told me that her brother has ulcerative colitis and that he got it because he leads a very unhealthy lifestyle. She proceeded to explain to me that he got the disease as an adult and that it is because of the food he eats. Yo! America as a whole eats terrrrrrrible! And sure, the rise in auto immune diseases could be attributed to the enviornment and the lifestyles human beings live. But blame evolution. Blame my ancestors. Blame western civilization. Don’t blame ME. This disease didn’t start with me and it is my guess that I eat better than the people telling me that my diet is causing my disease. In fact, before I got to this point I used to be a competitive dancer, played sports, worked out, and ate right. I’m not saying nutrition isn’t important because it is. Eating McDonalds every day isn’t good for ANYONE. 

As of now Crohn’s disease and ulcerative colitis have no known cause. This disease is an autoimmune disease, not a simple dietary issue. Genetics play a role for sure and I bet my life there are a lot of contributing factors. But making the patient feel at fault for their suffering. I just can’t even…

I had to listen to this lady tell me about her brother and I couldn’t say a thing about it because I was in a professional setting. I felt for him. I don’t know her brother but I wanted to hug him listening to his sister (an older adult) tell me how he caused his disease because of his lifestyle and that he would be better if he changed his ways. I was suddenly angry because I had to sit there and take it. Listen while she made me feel like I was at fault for all of my suffering. Listen while she made me feel like I caused this or that I could make it better. I have tried every diet I could find. Long before my surgeries I tried the SCD diet, and my doctors had me trying all sorts of things. Would I get my whole large intestine removed if I just had to eat a certain way? (Again, not saying diet isn’t important). 

It irks me just as much when people tell me that stress is the cause of my disease. If that were the case then why doesn’t everyone in the world have Crohn’s disease or ulcerative colitis? We all have stress. In reality the world is a sad place. We are going to experience losses, trauma, etc. because life is hard. Stress does not cause IBD in the same way that diet does not cause IBD. I get so sad hearing from so many people who are suffering so badly and their loved ones are making them feel at fault. “If you would just eat better” or “If you weren’t so stressed” is a terrible thing to say. We WANT to feel better. I hate the pain and the terribleness that I have been through. Don’t tell me what to do because believe me, I probably have looked into it. 

People have told me that my disease is the result of childhood stress or trauma. You know what? I know young people, CHILDREN, that come from very loving homes. I have met their parents online or in person and know for a fact that these kids have parents who would do anything to see their child feel better. These kids are living with love, support, etc. They live in safe happy homes. They didn’t cause this! Their parents didn’t cause this! And I know that so many parents try everything possible to get their kids feeling better again. I started going into the hospital as a baby and every year after that. How much damage could I have done with my diet in only 10 months? It is insane to me to make people feel like they are the root of the problem. How horrible and sickening. 

It is hard to live with one of these diseases and feel so alone. The pain, suffering, fear, and isolation is extremely difficult and it makes it even worse when loved ones or strangers are telling us that we are sick because we are too stressed or because we ate a slice of pizza. Get real! 

Diet is important for every human being. It is no lie that nutrition is important and I am sure that the way we eat does play a role in our health. I do not disagree there. I also think that eliminating stress has huge benefits for everyone whether they are sick or not. Diet and stress can aggravate our disease but the disease is already there. It did not/does not cause it. 

PREACH.

I still don’t know how to put my feelings into words on the past 5 days. I tried to two nights ago and wrote a blog at 2:30 in the morning from Marisa’s house but woke up the next morning and deleted it because I don’t know if it correctly displayed what I have been thinking. My emotions are all over the place. 

Behind the Scenes

I think it’s because of what went on behind the scenes vs. what can be seen in pictures or during videos. Marisa and I have been thinking about this a lot and honestly it’s been weighing heavily on our minds. World IBD Day (to me) is all about awareness and getting the real word out there as to what these diseases are and how they can impact lives. Instead you see me scaling the walls rock climbing… 

(I don’t feel like this year I did World IBD Day justice. Maybe I am being hard on myself, but I didn’t have time to write my own blogs or put together my own videos. I was so busy getting ready for NY and so busy while I was there). 

What goes on behind the scenes is what I would like to talk about regarding this weekend. My health never gets much better than this. I call this “good” even though a normal person would not. But you learn to live with your new normal and really I am thankful to be here in comparison to how awful it has been. 

A picture is worth 1000 words…

If you look at this picture everyone looks fine. It’s a great example of the whole “you don’t look sick” thing. Smiles on faces and everyone having fun doing athletic things. The truth is that these people are not doing fine. There is prednisone, humira, remicade, uceris, methotrexate, and a ton of other medications between us. Two of us have had to have our entire large intestines removed and live with an ostomy or a j-pouch. There is current active disease and a lot of fear, anxiety, etc. that lurk behind those smiles. That is what I want to talk about. I also want to talk about how proud I am of everyone here for having fun, for stepping out of their boxes, and for trying. It was pretty awesome. 

The Thinking

My disease causes me constant thinking. It is like my brain will not shut the worry off. The constant anxiety and worry and how these diseases rule everything you do and every decision you make. At least that is the way it is for me and many other patients. Not all patients…I can’t speak for everyone and clearly there are people who are in remission or who are doing better or who have a mild form. To travel is a HUGE deal to a lot of us. Though I have been talking to Marisa online for a year now and we have grown so close, we had still never met in person. There are all the things one would worry about like if we will “click” or if conversation will flow, but then there are the things that are always on my mind. I don’t stray much from my home. Traveling causes me a lot of stress and anxiety but every time I do it I learn that it was worth it afterward, even if things do go wrong. It’s why I keep doing it, because it makes me feel proud of myself. It is always difficult to be in a new place and away from the things that make you feel safe. I wonder how my health will be and how the bathroom situation will go and I worry about that and so much more. 

Behind the scenes to get through these days I didn’t eat all day because I didn’t want my stomach to hurt and I didn’t want to have to worry about how my j-pouch would react. It’s been a finicky jerk lately. I climbed those rocks with a headache and dizzy until I had 1/2 a piece of pizza and a drink at the end of the night. A picture doesn’t let you know that. When we got back I ended up having an accident at night (thanks j-pouch). This has been happening to me a lot this year and it’s got me worried and I am wondering what is going on. It also only makes me want to isolate myself even more and not go anywhere. Luckily I was in the company of “my people” which makes it a bit easier…but still.

Oh but hey! Did you read that? I rock climbed!! That was pretty rad. I am so proud of myself. :) 

The next days continued this way for us. Constant worry about timing, food, what to wear, how we will feel, etc. The thinking never stops and sometimes I just want a break. My stomach was bothering me and I had another accident on the last night and it was just…a lot. 

I don’t want to lose my voice. I don’t want to not share these things with you guys or appear as though everything is easy for me. I have just been struggling with how to get all these thoughts out without it coming off as complaining. 

Now here is where I tell you all the GREAT things about my time in New York…

Meeting Marisa was everything I hoped in my heart it would be. She really is my sister and to have a friend that just gets me the way she does is so comforting. We share so much in common with the way our disease has impacted our lives and to talk with her in person meant so much to me. I had so many laughs with her and really truly felt comfortable and right at home in her house with her parents and cute doggies. I have very few friends who get me the way she does and those people are so important to me. 

I also got to meet Mal! Mally emailed me almost 2 years ago and I just KNEW we would make great friends. We connected because we both have a j-pouch and Crohn’s disease and the same wacky sense of humor. Spending time with her and Ris was like we had been friends forever and not like we had just met. I can’t wait to do it again in a few weeks. I love how we can talk and laugh about things that other people just wouldn’t get or things we would never want to tell others. ;)

Spending time with Frank, Jim, Deidre, Stephanie, Janna, and everyone else at the event was awesome! I met some new people and reconnected with friends I had already met before. It was really great to be in their company and they sure are “my family”. 

I have to specially thank Brian Greenberg from the Intense Intestines Foundation for inviting me out for the weekend. It was a great time and I had a blast at the event and doing all that we got done. 

Overall I want to say this: My IBD Family keeps expanding. Attending events and meeting friends who have Crohn’s disease or ulcerative colitis in person truly saved my life and it is the best form of therapy I have found to get through this. I love everyone I have met through Camp Oasis, GYGIG, CCFA events, online, etc. I lived for so long hiding my disease. I never wanted to talk about it. I couldn’t talk about it. To be able to talk about certain things with these people and laugh hysterically about stuff or relate on levels no one in my real life could ever relate is something I can’t express in words. Please, if you are living with this alone, reach out! It is difficult to step out of your comfort zone but the anxiety leading up to it is the worst part. You don’t have to do this alone.  

I can’t keep myself out of the bathroom today! Luckily I am not working, just a doctors appointment to attend later. 

I went to a meeting at work like THIS last week! lol 

I had an accident a few days ago sleeping. Awesomeeeee! :/ 

I *think* I have been seeing blood in the toilet for the past 3 days. I say think because I can’t tell if it’s blood or something red that I ate. Then I try to go through the things I have recently consumed and can’t recall anything red. But I argue with myself that perhaps I did eat something red and have just forgotten about it. Blood…I don’t have time for blood! I don’t have time for this! 

Pain is there too but not severe enough to make me worry. Is it weird that it takes a lot to make us worry these days? Had a doctors appointment yesterday where they were concerned about my extremely low blood pressure. It’s always low I say…but I have been feeling especially dizzy this past week. But is it the disease or side-effects of medications, or something else? Round and round in circles my mind goes. The littlest of things are taking all of the energy that I have. I worked 2 hours yesterday and didn’t work today and all I can do is lay around. 

I eat or drink and it hurts and my belly becomes hard and distended and then I start to feel caught. Do I eat and suffer with the pain or do I not eat and suffer with lack of energy and fatigue and dehydration? 

But really, I DON’T HAVE TIME FOR THIS! I leave for New York in 2 days. My whole summer is full of exciting plans and things I do not want to miss out on. I can’t be getting sick! And so my mind pleads with my body. It tells me to just wait, remicade is at the end of this month, maybe you will feel better then. It tells me that this will pass in a few days and to just keep pushing through it. Isn’t this life now anyway? 

My friend Lisa put it really well today when she said: “For as much as I share and discuss, I hide twice as much.”