how do you keep your jpouch healthy?

At the beginning of a very busy week, I figured it was a good idea to write down some thoughts that I have in my own head about how I’m going to maintain health for my jpouch for not only this week, but also moving forward towards a busy summer.

I’ve received a lot of questions lately in regards to how I turned the health of my jpouch around in the past seven months. It was no easy feat, and what I was faced with was serious. Hearing that I was at risk for losing my jpouch took me back to a scary place, one that I never thought I’d have to re-visit. What I needed to realize 5 years ago and in October is that coming out of the dark side of the challenges that life has thrown at me has always made me a stronger person and a better advocate for Crohn’s Disease and ulcerative colitis. Looking back on the hardships and pain that I have faced over the past five years, I can say that I feel better now than I have since I was 22 years old. (I’m 28….I think…lol).

How did I do it? It takes more than just physical health, a lot of it stems from mental health. I was just telling my mom over the weekend that Inflammatory Bowel Disease affects so much more than just your physical health. It takes such a strong toll on your mental health as well. IBD makes you afraid to go anywhere, do anything. I’ve compared having IBD to being in prison, because thats exactly what it’s like. IBD takes away all of your freedom – you can’t eat, sleep, breathe. The pain is unpredictable and unbearable when it does come on. IBD doesn’t just affect the patient, it affects support systems. Every aspect of your life is impacted when you are in a flare.

What’s hard to do as a patient, is get to a place where you are managing your disease, not vice versa. I let my disease manage me. I let it walk me like a dog. My ulcerative colitis chose when I would go to work, when I would eat, when I would sleep, where I would go, everything.

Until now.

There’s a lot that plays into what majorly affects the way I feel, as I’m sure many IBD patients can agree. Stressed at work or with something that is going on in life? I don’t feel well. Don’t get enough sleep? I definitely don’t feel well. Eat something wrong? Pain – which means not feeling well. But, let’s take those main factors and put them into an equation so that the end result is positive. (I started school for web development and I’m currently learning javascript functions which play out like equations, so its all relative).

if (poorDiet) {
console.log(“Meal prep and eat healthier”);
} else if (outsideStress) {
console.log(“Exercise and eliminate negativity”);
} else if (noSleep) {
console.log(“Start a sleep schedule with an early bedtime”);
}

If I typed these conditions into my body, I would feel better – guaranteed. So, thats what I did. I took a step back and I analyzed what choices I was making in life that were causing me to feel so poorly. All three of the above were parts of my life in the fall and winter. I had a poor diet, external influences that affected me in a negative manner (this includes people) was not exercising enough, was handling stress poorly. Therefore, I wasn’t getting enough sleep not just because of stress, but because I was up going to the bathroom constantly again. They all play off of each other. And just like in javascript, that “if…else” statement of my life would keep repeating until something(s) changed.

If you don’t feel the best that you should, maybe its best to take a step back and put your own life into an “if…else” equation. You don’t have to lay it out in javascript terms (I mean, you can if you want…) but definitely write yourself a list of why you think you aren’t feeling good. Chances are, you know why.

If you don’t, start with these questions:

  1. are you stressed?
    1. why are you stressed?
    2. what can you do to eliminate this stress? how can you better manage it?
  2. are you eating as well as you should?
    1. for jpouchers, I’m not talking about green vegetables and fiber. those are both big no-no’s. I’m talking about staying hydrated (with G2 or Powerade 0), eating little to no carbs, and tons of lean protein. No dairy, no carbonation, no sugar.
    2. when i was struggling with my diet in October, i went to a dietician. is this an option for you? if not, do your research, meal prep. plan which days you are going to make what food. get yourself into a routine.
  3. are you exercising?
    1. dr.shen (aka pouch jesus) let me know that exercise for jpouchers is crucial. it not only helps de-stress, but it helps keep oxygen flowing through your blood. any oxygen delivered to your jpouch is GOOD.
    2. just had surgery and can’t exercise? try breathing exercises or go for small walks outside.
  4. are you sleeping enough?
    1. if I don’t get at least 10 hours of sleep at night, i flat out don’t feel good. that doesn’t make you or I lazy. we have chronic conditions that need managed – or they will manage us.
    2. set a time to go to bed. turn off your tv, your phone, everything. that’s one thing I really had to work on back in october – putting down my electronics at a normal time. I turn all of mine off by 10 p.m. on weeknights.

In no way shape or form am I a doctor, but I have been through enough with my ulcerative colitis, pouchitis, and cuffitis to know what it took for me to turn around my poor health. If you are bleeding, going to the bathroom just as much as you did with your ulcerative colitis, in pain in your rectum, nauseated constantly, and unable to rest, you need to contact your doctor immediately.

I have found that if I am having a day where I’m having one of the above symptoms, its usually caused by a factor that I can now control.

I also cannot stress enough how long it truly takes to recover from your final surgery. It took 3 years of me shouting to myself, “YOUR BODY WAS NOT MEANT TO WORK LIKE THIS. YOU HAVE TO BE PATIENT,” to finally grasp that it’s true.

Actually, I had to suffer consequences of going back to work too quickly, stressing about what I was going to do with the rest of my life, and eating poorly. I’m glad I did, though. Because now I can look back at that time and realize what I did wrong. WHY I felt the way I did, so that I can help those who are going through phase 3 recovery now.

People who live with IBD are impatient, type-A, control freaks, perfectionists, people pleasers, over-workers, over-analyzers, over-EVERYTHING. I’ve met enough people with Crohn’s and ulcerative colitis to know that we all like to have control over everything we do. Why not focus that control over the way we feel?

Stay positive. Even in your darkest days its important to remember that you will get through it, you just have to figure out how. You have to get to a place where you make yourself responsible for the way your life with a chronic condition is going to play out. Make a to-do list, go to therapy, talk it out with a friend or co-worker, make a doctors appointment, do something that will ensure that you are going to take action. 

Stop letting your disease manage you. You’ve got to figure out a plan, because like many doctors have asked me, “Do you want to live the rest of your life feeling terribly?”

No. I don’t. And neither do you.

remission.

when i first walked into this place on june 27th, 2013, i was told i was losing my life. today, i came simply drop off a diary that was supposed to go along with a drug trial that i didn’t qualify for because i’m too healthy.

finally, i can say i’m in remission.

5 years, 3 surgeries, countless days in pain, millions of bathroom trips, weeks in the hospital, 1 lost colon, but so thankful for the journey and the lessons learned.

if you have crohn’s disease or ulcerative colitis, never give up hope that you will get better and the pain you are experiencing now cannot compare to the joy that is to come. always stay positive, keep your faith in God, and above all, love and put yourself first.

thank you to my family, friends, Companion Magazine for IBD & my editors, the Parker Hannifin Downtown YMCA, Nikki B., all of my doctors, and everyone in between. my remission would not be possible without all of you.

How I Came to Terms with my Ulcerative Colitis Diagnosis

Healthline asked me to write an article a few weeks ago regarding my lifestyle with ulcerative colitis, and how I came to terms with my initial diagnosis. Click here to read the article on healthline.com, or read the article below.

Ulcerative colitis can be described many ways through a variety of symptoms, but only those who live with it every day know how detrimental it can truly be. At first, the pain was terrifying. Coupled with the large amounts of blood I would see in the toilet I knew something was very wrong. Yet I didn’t tell anyone. My father, who is a physician, watched in confusion as I began to rapidly lose weight. My friends would stare with fear as I would run to the bathroom countless times a day.

I hid what I was experiencing from everyone, too afraid to admit the severity of my suffering and how it was affecting my fast-paced life. Looking back on this now, why didn’t I tell anyone? Why was I so afraid to seek help or to tell the truth?

I think I was afraid because I knew in the back of my head how much my life was about to change regardless of the ultimate diagnosis. All the extreme pain, the blood loss, the fatigue, the inability to eat, the nausea that was impossible to ignore, it all had to mean something bad. Something that I wasn’t going to be able to handle, right?

Wrong.

Now 5 years after that initial sharp pain in my abdomen, I spend my days trying to help those who are first diagnosed with ulcerative colitis or Crohn’s Disease understand how important it is to share their initial symptoms with a family member, friend, or co-worker. The first piece of advice I give to anyone that comes to me seeking guidance is that you are stronger than you think. In my weakest moments, when I couldn’t get up off the bathroom floor, when I was shaking in pain, I was actually becoming stronger. I learned and continue to learn more about myself and life from my ulcerative colitis than any class in school could have taught me.

When I was first diagnosed, before I even knew what ulcerative colitis meant for myself and my family, I was uneducated on the disease and how much it would truly change our lives. My first GI doctor was terrible all around, and didn’t help me to grasp the importance of educating myself on Inflammatory Bowel Disease. I knew nothing about treatment options, diet, or lifestyle changes that needed to take place. Surgery outcomes were never even mentioned. No one told me to read blogs, books, pamphlets, anything. I thought that I could continue living my life as a 23-year-old bartender working 18 hours a day.

Once we found another GI doctor that would ultimately save my life, my UC had rapidly become what he would tell my family and I was the worst case of ulcerative colitis he had seen in 25 years.

Over the next year and a half, we tried everything to ease my suffering. I tried every biologic, every steroid, every immunosuppressant, every home remedy suggested to us. My father even inquired about drug trials, but by the of that year and a half it was too late.

Too late meaning that by the time I met my surgeon, I was days away from bowel perforation. I had 3 days to cope with the fact that I would not only be undergoing a surgery to remove one of my organs, I would be living the next year with an ostomy, which I knew nothing about. That ignorance led to anger and anxiety. Why hadn’t anyone prepared me for this so that I could properly prepare myself?

As soon as we returned home from the Cleveland Clinic that day I immediately went online. I started reading blogs and social media posts from girls who had met the same fate, but with a better attitude. I remember reading an article authored by a young woman with Crohn’s. She was living her life with a permanent ileostomy and was so thankful for it. Her story instantly made me realize that I was blessed to be in the position I was in. She inspired me to continue reading and to start writing to help others the way she had helped me.

Now, my life with a jpouch means less suffering, but the importance of staying educated will never subside.  I take everything my team of doctors tells me and I share it with the world. I never want anyone that is diagnosed with Inflammatory Bowel Disease to feel alone or confused. I want every patient and family member to know that there are so many people out there who are willing to help and answer any questions you might have. I went through my challenges for a reason. I learned the hard way so that I could help make others’ lives that much easier.

I manage my condition today by listening. I listen to my body when it tells me I’m too tired to go out after work and have dinner with friends, I listen to my doctor when he tells me I need to watch what I eat and work out a little more, I listen to my family when they tell me that I don’t look my best.

Rest is so important to any patient, regardless of the stage of diagnosis that you are in. It’s tough to slow down, but understand that rest will help heal you. Education is also essential. Being an educated patient means being your own advocate. The best places to get information on ulcerative colitis or Crohn’s Disease? Blogs or articles written by other patients. Read the blogs that are positive, that don’t scare you, that are informative and that you can relate to. People in the IBD community are the kindest, most generous individuals I have ever known. I’m so grateful to have such an incredible support system that is only one click away.

Even today when I am feeling a symptom that is strange, I look to those who have mentored me through my journey. I ask questions and then I take those experiences to my doctor and ask his opinion.

These days I feel incredible. I live a life that I was afraid of losing and that’s because I stayed strong even though I was afraid. I manage my lifestyle by the same rules I founded five years ago.

I listen even though I’m stubborn, I rest even when I want to be out and about, I research when I’m unsure, and I share when I find the answers.

About Brooke:

Brooke Bogdan was diagnosed with ulcerative colitis at age 22 after returning from a vacation where she caught two different kinds of gastrointestinal parasites that went undiagnosed for 6 months. When the parasites were cured, she was left with severe pan colitis. In the early summer of 2013 as a life-saving effort, Brooke had her colon removed. She underwent 3 laparoscopic surgeries at the Cleveland Clinic. Brooke now lives in downtown Cleveland with a jpouch. She works at Studiothink as a Digital Account Manager and lives the most normal life possible. Brooke founded Companion Magazine for IBD in 2013 and authors her blog, Fierce and Flared.

bbogdanforhealthline

 

 

Twitter: @brklynbouncer

Companion Magazine for IBD: www.companionibd.com

Fierce and Flared Blog: www.fiercelyflared.wordpress.com

what works?

After having quite a rough night last night, I realized that I haven’t shared how my progress has been going since my last scope. It’s probably a good time to write this since my progress appointment with Dr. Shen is on Tuesday, 1/24.

Sidenote: Something told me to call the Cleveland Clinic one sentence into this post. I would have bet $500 that my appointment was on 2/24. Looks like I was about 4 weeks off. I booked this appointment 2 months ago – thats how far out Dr. Shen books, which also speaks to how incredible of a jpouch doctor he is. And how unorganized and forgetful I am. 

Hey! I’m busy. Which is good. I will tell you that the element of this treatment plan that has made me feel the best is my workouts. I’m back to running up to 3 miles (sometimes more), which I haven’t done in a long time. I remember when I had my ostomy my goal was always to be as healthy as possible – assuring myself that if I was my recovery from my next surgery would be quicker which would mean less time in between surgeries. Less time in the hospital.

I was always right.

I think the longest I stayed in the hospital after a surgery was 3 days. That was after my first surgery and trying to learn how to live life with an ostomy. Dr. Strong would always come into my room like Batman – unexpected and swift. He would look at me with amazement and pride and tell me that I could go home the next day. When that time came after each surgery, I would jump out of my hospital bed and jump back on the treadmill as soon as I was allowed. After my second surgery I disobeyed (ME?! Disobeying?! NEVER) and started working out too hard too quickly, and earned myself a bowel obstruction and another 4 day stay at the Cleveland Clinic. Whoops.

But the point of that is my intentions were good. I wanted to be as healthy as possible. What happened to that mindset? How did I let that slide? I can think of a million excuses and reasons why, but at the end of the day, I am to blame for the nervousness that I am feeling to see Dr. Shen on Tuesday. No one put me in this place but me. Which has been tough to carry. I’ve learned that having forgiveness for yourself and your mistakes is crucial for moving on so that I can be the best version of myself for my family, my friends, my co-workers, and my boyfriend.

On a lighter note I feel incredible. Do I have my days? YES. and nights. I always will. It’s learning how to bounce back from them so that I have fewer. My eating and health habits have changed, but changing my personality is even harder. I’ve learned more about myself and my disease in these past 3 months than I have living with the condition for 5 years. Living with a jpouch is a consistent learning curve. They don’t lie when they tell you that everyone’s body is different. I was blessed with the curse of cuffitis, a high stress temperament, and anxiety at night that could keep me up for days at a time if I didn’t have help from Aleve PM.

I’ve learned that stress affects my body and my colitis more than anything. Sure, my diet has led to ischemia of the jpouch and some pretty intense pouchitis. But my stress and emotions cause bleeding. I know when I go to the bathroom and see blood, I should probably be slowing my roll and resting. When I make a bad decision food wise, I feel more nausea than anything, which I hate more than pain. Last night I had pain in my rectum that was radiating up my spine. The first thing I do when I feel pain now is reflect on everything I did that day. How can I make a busy day less stressful for myself next time? Yesterday, I  had 2 major meetings with clients that I was nervous about, expanded a lot of energy yesterday getting to those meetings, running them, and putting my all into answering clients questions and reassuring them.

I love what I do, sometimes a little too much. But that makes me who I am. I’m passionate and hard-working. Changing that would be impossible, and I don’t want to change it. The difference now is that I understand the importance of stress and how intensely that does have an affect on the health of my jpouch. Balance is key. I’m still practicing that one.

I finished almost all of my Hyperbaric Oxygen treatments. What a great idea from Dr. Shen. After 3 weeks, I felt incredible. If you have a jpouch and are struggling with pain, bathroom trips, fatigue, anything – ask your doctor about HBO treatments. They are tough, no sugar coating. Going to the hospital for 3 hours every weekday and undressing, taking off makeup, brushing out hairspray and not having a phone or really being able to move is tough. But its another commitment and choice that I had to make to be healthy. Sure, laying down for 2 hours a day might sound easy to some, but it wasn’t. The pressure can give you a headache, it gets very boring (technology addiction) and its hard to move. Also, my eyesight is currently a disaster; which will improve. The aftermath and how incredible I feel now makes up for the emotional trauma those treatments caused me in the beginning.

I workout with Nikki once a week, I was with her twice a week for the first 2 months. She has taught me skills that not only help ease my stress, but has been an incredible friend, support system, and therapist through all of this. Our workouts are fun gossip sessions that result in an escape from the stresses of daily life.

I no longer dread running and cardio. I found an app called Aaptiv – which has coached me to be the best runner I have ever been. The app offers workouts ranging from easy to hard, from running to strength training. If you are having trouble getting through the same old boring cardio workout, I strongly suggest you give this app a try. http://www.aaptiv.com *not an ad  – I truly love it.

My nutritionist taught me the importance of reading nutrition labels, how great lean protein makes me feel, how to use probiotics to defend my body, that cutting carbs instantly slims you, and has motivated me to want to make better choices.

I have to say that after all of this I’m proud of myself for picking myself up and figuring out how to fix this. I’m still learning, I’ll never be perfect. The support I’ve received from everyone I love has been incredible and so inspiring. Pfizer has opened my eyes to other jpouch patients who struggle and I have been able to help offer advice from my own tribulations – and I’m lucky that they share theirs with me.

Those times of great suffering have never been a reason for me to hide and feel self pity. You have to take the challenge that is put in front of you and be the strongest, most positive person you can be so that others who are not as strong can learn from you.

Life with IBD or any chronic illness wasn’t given to me or anyone else as a way to live life full of excuses. If you think about it, when you are at your weakest, you are really at your strongest.

Keep fighting!

Brooke’s Story – No Filter on Hypberbaric Oxygen Treatments

To put it lightly, I’ve been through a lot. Quite a few surgeries, an ostomy, countless hospital stays, all the drugs that pharmaceutical companies could make, pain, nausea, all of it. What I tend to do all the time, is censor my true feelings. I am guilty of putting a “filter” on my IBD.

This week is about taking that filter off and showing what it’s truly like to live with ulcerative colitis. It is painful, scary, unpredictable, and the treatments are tough and exhausting. My latest struggle, which I won’t go into detail about because you can read it on my blog here: (http://bit.ly/2gzf740) has caused me to break down in ways that I haven’t experienced in a long time.

Those hyperbaric chambers are intimidating looking. I felt a lot of emotions, the main ones being disbelief and disappointment. I couldn’t believe that my poor choices have resulted in me having to spend 2.5 hours of my day, every day, laying in a space-age looking tube. Normally I’m not sure where my anger or disappointment should be directed, right now I know for sure.

My anger and disappointment are directed at me.

hyperbaric_chamber_image

This is what the Hyperbaric chambers look like.

The fight that I’m going through right now has to be one of the toughest in my journey with ulcerative colitis. I told my boyfriend the other day I feel like I’m breaking. I work for a PR agency (which I love), I advocate for people living with IBD (which is my mission in life) – now on top of all of that, I’m back on maintenance drugs for my UC. 4 suppositories every single day. It’s so fun to shove those capsules in my butt every day. (Hey, we said this was unfiltered, so don’t expect anything less).

I’m working out intensely with a personal trainer twice a week, along with yoga and my own workouts the other days. I try my best to have a social life, I have a boyfriend who is also my best friend that I love spending time with, I have friends that I want to catch up with, I have a family who makes up my whole heart who I want to be around as much as possible. I have to cook, clean my apartment, go to my check-ups at the doctor, and now I have to go to Lutheran Hospital every single day for 2.5 hours and lay in a pressurized oxygen chamber.

No matter what “unfiltered” challenge you are facing with IBD, always stay positive. We will beat this together.

This is my life with IBD right now, unfiltered.

img_0458

My #IBDunfiltered image. I took this after returning from seeing the Hyperbaric chambers for the first time. I was angry, confused, and felt really alone. Knowing that I had another challenge to face was tough, but sometimes crying and letting out your most “unfiltered” emotions out is the best way to heal and prepare yourself. Now the chamber treatments are a breeze – I actually really enjoy them! I had to face my fears to get to that state of mind, though. The best advice I could give is, accept the fact that there are going to be difficult times, but that doesn’t mean you won’t overcome them.

#IBDunfiltered Campaign – IBD Awareness Week

img_0970We are so excited for IBD Awareness Week and the fun campaign that we have worked so hard to crunch out the details of. Since the relevance of our beloved Snapchat has grown to extensive lengths, we thought it would be perfect to “unfilter” what it’s like to live with Crohn’s Disease and ulcerative colitis.

Don’t lie to yourself (or us). You love that pretty filter, dog filter, and especially the deer filter. They’re a great way to laugh with your friends and hide your flaws.

But – IBD Awareness Week is about sharing our flaws. In order to help spread awareness, we want you all to see us, unfiltered, out from underneath our security blanket of the ‘pretty filter.’

Living with Crohn’s Disease and ulcerative colitis life changing. There’s no filter to cover the hardships that we go through with these diseases. We do our very best, fight every single day just to be what society considers ‘normal.’

Well, this week we are done covering up our fight.

Let’s stop censoring our tenacity and start showing the world how tough we are.

Starting today – all of the editors from Companion will share our ‘unfiltered’ selfie, along with a few paragraphs describing how we overcame a tough time in our journey with Crohn’s and colitis. A time when any filter could never hide the pain we were experiencing.

You are not alone in this fight. The days that you feel the absolute worse on the inside, but find the inner strength to filter yourself so that you look beautiful on the outside, makes us the strongest people that I have ever had the honor of knowing.

Let’s do this. No filter needed. 

*If you would like to submit a selfie (NO FILTERS) and a sharing a few paragraphs about one of the most challenging times of your journey, please email both the photo and essay to companionibd@gmail.com. We will do our best to post all submissions on our website. 

i’ve been lying.

screen-shot-2016-11-28-at-1-57-44-pmI’ve been acting strange lately. I’ve been going through a lot over the past few months with my colitis and my jpouch and not blogging or telling people about it. Which is not usually like me. Since my diagnosis, I have always wanted to find a way to bring more awareness to inflammatory bowel disease, to talk to as many people as I possibly can about what I was feeling, the pain I was in, and what I have learned through my journey. I’ve shared every detail of every surgery, every infusion, every hospital stay, all of it.

Until the past few months.

One of the biggest flaws of those of us with IBD, is that we lie. You’re probably lying to yourself right now. “What is she talking about? I never lie. I always tell the truth about my symptoms and they aren’t even that bad. I’m managing my disease. I’m fine.”

We lie to our doctors because we are afraid of next steps. We lie about how many times we go to the bathroom. We lie about how bad our pain is. We lie about how much blood we are seeing. We lie about our emotions, about our depression and anxiety. We lie to our family and friends because we don’t want them to worry. We lie to ourselves because we don’t want to believe that we are living this way; we live in a constant state of denial. But sometimes facing the truth is the only way we are going to get better.

You know what my favorite lie is? “I’ll be okay.”

So, as hard as it is for me to admit that I’m actually not okay, here’s my current truth.

The past few months, probably since August, I have felt absolutely terrible. The pain in my rectum is inexplicable, my joints ache so badly that I can barely get myself to be comfortable enough to sit on the couch without a heating pad. Every time I moved I would have to go to the bathroom. If I laughed, breathed too hard, anything – back to the bathroom. “How could this be?” I thought. “I had those surgeries so I wouldn’t have to live like this.

On top of all of my colitis symptoms returning, the never-ending list of life’s daily tasks prevent me from falling asleep. I can never stop being stressed out. I have no patience, I want to work all the time. I want to eat good food, drink vodka sodas, and be out all night without getting overly exhausted or feeling sick the next day. I long to be just like my friends.

So, I did. I worked 10-14 hours a day. I ate whatever, whenever (and I mean WHATEVER) I wanted. Pizza, carbs, fried food, I drank pop, went out to eat constantly, didn’t drink as much G2 as I should. I drank enough Tito’s to fill Lake Erie. I definitely wasn’t working out which resulted in me being the heaviest weight I have ever been in my life. (PS this is all very difficult to write and embarrassing to admit, but this is how I’m going to heal. Plus, if it means helping even one person find an answer to why they can’t manage their IBD, then it’s worth it.)

Worst of all is that I haven’t put myself first for over a year. ONE YEAR. That’s 365 days of taking shitty care of myself and telling that same lie over and over again. “I’ll be okay.” I would rather drop whatever I’m doing to rush to work, answer a client phone call, push myself to go somewhere just because of FOMO, I go out and eat terrible food from restaurants I shouldn’t be eating at, taking shots of fireball, staying up all hours of the night on my phone, and constantly stressing about things that I can’t control.

Moderation is a word I know the meaning of in a literal sense. But if you asked me what I do in my life moderately, the answer would be, “nothing.”

I’m the biggest hypocrite I have ever met. I have vowed to make it my mission in life to help those who live with Crohn’s Disease and ulcerative colitis. I blog about what’s right, how to take care and manage your disease, who to listen to, how to talk about it, what to eat, how much you should sleep. Do I currently practice any of that advice?

No. I don’t. What kind of role model is that? What example am I setting for those who look to me for inspiration?

When it came time for my yearly scope on October 13th I prepped like I normally do. Made jello, drank the Miralax and survived on popsicles for 24 hours. My boyfriend and I drove to the Cleveland Clinic. Mike knew I had been going to the bathroom a ridiculous amount of times. I told him that my cuffitis is probably just really flared.

Side Note: Rectal cuff inflammation (sometimes called cuffitis) is inflammation in the part of the rectum that is left after ileal pouch-anal anastomosis (IPAA) surgery, which is more commonly known as j-pouch surgery.

I’ll never forget when I was first diagnosed with cuffitis. Dr. Shen said to me, “When your rectum is sick, you are sick.”

That couldn’t be truer.

My boyfriend Mike, my dad, and I waited in the lobby of the Crile building at the Cleveland Clinic for over 4 hours. I was supposed to be scoped at 1:00, I wasn’t brought back into the exam room until 6:30 p.m. For those of you who don’t know who Dr. Bo Shen is, I’ll give you a small synopsis. He is the best jpouch doctor you will ever find. People travel from all over the country, even the world to see him. I had someone refer to him once as “pouch Jesus,” which is why we had to wait so long for me to be scoped. If you ever have a problem with your jpouch, you go see Dr. Shen. The wait is worth it.

Click here for more information on Dr. Shen if you are interested.

After about 5 different nurses trying 30 different times to get an IV in, I was finally able to be wheeled back. I was ready to hear the usual, “Your cuffitis is flared, your rectum is red, stop eating carbs, eat lots of lean protein, red meat, no sugar, stay on your Canasa and Hydrocortisone suppositories.”

None of us were even remotely ready to be told what we were. While in the recovery area, even though I was drugged on versed and valium; the concerning look on Dr. Shen’s face said it all. When he pulled my dad to the corner to show him the pictures of my jpouch, I knew it was bad. Mike and I sat there, trying to listen. Mike’s face went from emotionless to concern. I could hear snippets of the conversation, “not good” – “weight is high” – “cutting off blood flow to the pouch.”

My dad rushed to my bedside, he wasn’t angry, but stern. “You’re done with the pizza, done with the drinking. You’re done living a life that you know you aren’t supposed to be living and making the choices you aren’t supposed to be making. Your weight is the highest it has ever been and it’s cutting off blood flow to your pouch.”

My jpouch is dying. I have what’s called ischemia of the jpouch. Ischemia is an inadequate blood supply to an organ or part of the body. The tissue that surrounds my bowel is inflamed from the fatty and high carb foods I had been eating, which caused that tissue to swell and cut off circulation to my pouch. As if that wasn’t enough to hear, I also have severe pouchitis and the cuffitis from my rectum systematically moved up to my distal pouch (the lower part of my jpouch).

My dad kissed me on the head and left. Mike and I sat there in silence. I immediately felt a wave of extreme anger come over me. “How could they be sitting here calling me fat? How could they possibly think that this is my fault? This is bullshit.”

I wanted out. I wanted out of that recovery room, I wanted out of that hospital, and I definitely was not going to make the effort to listen to what anyone had to say.

I spent two days feeling sorry for myself. Refusing to eat. All I was focused on was the fact that they called me fat and were blaming me for the state that I was in. I turned off my phone, I cried, I screamed in anger. I felt humiliated. I was sick and incredibly pissed. I didn’t want to talk to anyone and I didn’t want to hear any advice. I needed to have that meltdown.

I finally realized that hiding under my covers was not going to solve anything and it certainly wasn’t going to save my jpouch. I thought back to the day I found out I had to have an ostomy. How embarrassed I was for acting like such a brat to my surgeon and nurses; when in fact, that ostomy is the best thing that ever happened to me.

That’s exactly how I was acting then, too. Like a stubborn, ignorant brat. 

Enough was enough. I took a deep breath and turned on my phone. I had at least 50 texts along with an epiphany. All of these people love me. All of them care about me and my health. Every single one of them was worried about me when they hadn’t heard from me after my scope.

I called my dad and Mike and apologized to them. Seeing the look on my dad and Mike’s faces when Dr. Shen explained what was going on is something I will never forget. It’s one kind of pain to actually physically live with and feel IBD. It’s another to hurt the people that you love the most because you aren’t managing it the way you are supposed to. I made so many poor choices that I gave colitis the power to rule my life. I was no longer in control, my disease was.

I had to figure out how I was going to get the control back. It’s similar to a drug addict or an alcoholic hitting rock bottom. I hit my rock bottom. I HAD to hit my rock bottom, I’m glad I did. I hurt the people who love me the most and that is a selfish way to act.

When you are sick with a chronic illness, it’s not just about you and your pain. It’s also about the people that you love and the pain that they feel. When you are sick, your entire support system suffers.

I woke up the next morning and went to work. I sat down with my boss and my co-workers and explained to them what was going on. Admitting that I was sick again. Admitting that I am out of control and have made poor choices. Admitting that I was ready to change and most importantly, admitting that I need help. Seeing the sadness in their eyes as I explained to them how sick I am was hard, and it made me realize how much they all love me and want me to better. They listened, they asked questions, and they offered advice. Now every single day since then they have helped push me forward.

I’m so blessed to work for a company and for a boss who understands – who knows that I’m going to have bad days and that fixing this is going to be a journey. My boss and co-workers don’t judge me for it, and they don’t make me feel like a burden. They make me feel loved and accepted.

I work in downtown Cleveland at a PR agency in the Galleria. Across from my office is a brand new YMCA. I walked over there, explained to the person at the front desk that I wanted to start working with a personal trainer twice a week. I know how to run and I know how to work out so that I lose weight. I don’t know how to work out to heal my body. I need to strengthen my core and learn how to build myself up so that I can feel the very best I can.

There was another young girl standing at the opposite end of the counter. She had overheard me explaining my medical issue and needs and how I have ulcerative colitis. She told me that she is a nutritionist and her brother has Crohn’s. Perfect.

It’s now the end of November and I already feel so much better. It’s incredible. I had to complete a round of Tindamax, which wasn’t easy. A few days of vomiting, everything tasted like metal, blah. But my bathroom trips immediately lessened once the round of antibiotics was over. I’ve been working with my personal trainer, Nikki, for 6 weeks now. She has made me realize working out is so fun and stress relieving. She listens carefully to me and knows exactly what I should be doing to strengthen my core so that my body can heal.

A very large portion of my diet is now organic. I eat a lot of baked chicken, sweet potatoes, and turkey. I LOVE turkey bacon. My favorite breakfast is 2 egg whites, a few pieces of turkey bacon and greek yogurt. I love making protein pancakes. I’ve stopped drinking alcohol completely and we don’t eat out at restaurants nearly as much as we used to. We pick one night a week to eat out. I have cut out all carbs. My stomach and face have thinned out. I’m already down 10 pounds. My goal is 10 more.

I’ve changed my entire life and I’m starting to feel so amazing. Part of my treatment plan is Hyperbaric Oxygen therapy, which I start today. I get a lot of anxiety thinking about being in one of those chambers, but I have to do it to get better. Just like working out is literally one of my medications, so is this hyperbaric chamber.

Hyperbaric oxygen therapy (HBOT): is a medical treatment which enhances the body’s natural healing process by inhalation of 100% oxygen in a total body chamber, where atmospheric pressure is increased and controlled. We are trying to increase the oxygen and blood flow to my jpouch.

hyperbaric_chamber_image

That’s what the HBO chambers look like.

Nothing is ever easy, I’ve had some roadblocks along the way. I was in the hospital last week from passing a kidney stone. I had hand, foot, mouth disease. (Gross). I had blisters all up and down my throat, throughout my voice box and on the tops of my feet. I couldn’t eat or swallow for 3 days. People with no colons get dehydrated WAY easier. Your colon is responsible for drawing the water out of the food you eat and replenishing it into your body. I don’t have that. Which is why I have to drink G2, which has the right amount of sodium and electrolytes that my body no longer retains from the food I eat. Too much water can actually dehydrate me further because it flushes everything out.

I cannot thank my parents, sisters, and friends enough for the support that they have shown me over these past 6 weeks. It’s been tough. I honestly think it’s even tougher than when I was going through the surgery process. You get one chance at having a jpouch. I’m so disappointed in myself, but at the same time, I’m proud of myself because I am working really hard to fix this.

Mom and Dad: thank you for always loving me and supporting me, even when I eat too much pizza 🙂 I’m sorry that I let this get so bad, I promise to continue working really hard every day to make you proud. Seeing you two upset and knowing that you feel helpless is awful. I promise to turn this around. Everything I do is to make you proud. I love you both more than words could ever say.

Mike: You came into my life at the perfect time. I have spent the past 5 years looking for someone who would care enough about me to understand what its like to love someone with a chronic illness. I know this hasn’t been easy for you, but you are the strongest person I know for loving me. You’re my best friend and you make me want to be a better person. You motivate and inspire me every day. Thank you for all that you do for me. If we can make it through this, we can make it through anything.  You have completely changed your life to accommodate mine and that is the truest love I have ever felt.

Christine and my Studiothink family: There aren’t enough words to thank all of you for how much you support me. I can’t imagine how hard it is to work with someone who has been absent quite a bit lately, who may be angry because of pain, or who may be difficult to read because I don’t want to put you through any more stress than what we deal with when it comes to our work. I know I can always count on every single one of you. Eleanore – to sit in the ER with me just so I didn’t have to be alone. Christine– for taking me to my HBO orientation because you knew how afraid I was to face those chambers. Steve, Tony, Meg, Missy, Bev, Kara, and Sue – thank you for lifting my spirits, listening and truly trying to understand what I’m going through.

Kristin, Gaylyn, Rasheed, and Emma: No words needed. Our bond is one that will last a lifetime and I consider you family. All of you saved my life and taught me compassion, understanding, and have given me a love for life with IBD because it brought us together.

To all of those who I’ve met through mentoring, Pfizer, or social media – the bond that we have is incredible. I stay positive and fight as hard as I do so that you know that no matter what, you’re going to be okay. You have to work hard and take care of yourself. The fact of the matter is that we are different. If you don’t feel good, don’t push yourself. Listen to your body and always take care of it. We get one chance at this thing called life, let’s make the best of it.

Most importantly, let’s stop lying and start asking for help when you need it.