Dine and Dash - The Adventures of a Crohnie

[sunflower-cane]

Spoons dont come back

Saving energy is vital for spoonies and if our energy isnt used on something we plan to use it on. It usually just doesnt stay.

If i decide the night before that im gonna make two sandwhiches, and then in the morning i only have enough bread for a single sandwhich, i dont get second sandwhich energy back.

A lot of people dont understand why something changing out of nowhere can fuck a spoonie’s entire day up, its because we dont get to just decide that we can go along with the new day, we have to be constantly changibg and fitting the mold of abled people who dont need to worry about energy.

[crohnieblog-blog]

BBC News - Stoma - Why do people experience phantom rectum?

Why do people experience phantom rectum?

YouTube star Hannah Witton grills two people with stomas on life, love and popping undigested peas after having her colon removed.

[crohnieadventures]

The US needs to get their act together like the GB when it comes to IBD.

[spoonielols]

When you want to lay down, but you’re already laying down…

[crohnieadventures]

Mr. Chronically Ill

I wake up at 6am for work, already exhausted before my feet touch the ground. I cannot stay in bed, I must create momentum to get this day started or it never will. The pain creeps in like a burglar sneaking into my home, I do not realize he is there until everything I value is gone.  I step into a warm shower letting the steaming water encase my body in the only relief I will find this day. After thirty minutes, I work up the will power to step out of this protective bubble of falling water. The relief slowly begins to subside, giving me enough time to get dressed before letting the intruder back in. A simple task I have planned out, it has been planned years ago. Now it is just a part of my routine. It is putting on my socks. Bending over causes waves of cramps to shoot through my abdomen so I lay on the bed and bring my feet to my hands instead, carefully avoiding what pain I can. I slide my penny loafers on, not because they are stylish but because I will not have to deal with the pain of tying my laces. This is all intentional and planned. The smallest details are not overlooked. My toothbrush sits on the highest cabinet in my bathroom so I do not have to extend my body in the slightest effort to reach for it. The mental energy used to avoid pain adds to my already exhausting day.  

              I leave my apartment at 7am, ready for work. I look down the three flights of stairs and begin to mentally prepare my journey, no my quest. My quest to reach my car. Like Frodo climbing Mount Doom, I descend into the depths of the world outside of the only place I find peace. I use the hand rails to let my arms take on some of my body’s weight, giving my legs some needed assistance. The arthritic type pain is still there though, like a constant reminder that every action I take will be felt. Upon reaching my car, I lean upon the door before sitting. I look up and the sky is crystal clear. The sun has risen. The birds are chirping. There is a brisk breeze that blows through my hair. It passes over me, filling my body with peace. The pain is still there, but I somehow feel the strength to take on the day.

              I think back to night before as I whisper a thank you to God. I think back to the prayer I have adapted from a quote by Bruce Lee, “Do not pray for an easy life, pray for the strength to endure a difficult one.” Thank you God for making me strong.

[crohnieadventures]

Do Damage

Go Red Sox!

[crohnieadventures]

The “O” Word – Adapting to an Ostomy

Starting in 2015 I had a particularly rough couple of years with Crohn’s. During this time I had developed a perianal abscess, a real pain the ass. This level of pain has surpassed anything I have experienced in my life. After dealing with this for roughly two years it became so bad that the doctors and I agreed to an ileostomy, not without reservations on my part. This would give my rear end the rest it needed to heal.

              My nerves were a wreck before the surgery. I was not worried about going under, waking up was the source of my anxiety. I would wake up and not physically be the same. I would not be “normal”. I would have to carry around a bag that would collect my shit for me. What happens when my stoma farts in public? What happens if it falls off? Needless to say all of these questions would soon be answered, but for now my mind was full of “What Ifs”.

              I woke up to my nightmare. Before the drugs have worn off, a nurse was teaching me how to clean my stoma and change the ostomy bag. I could not bring myself look at the gaping hole in my abdomen. Depression set in quick. I had issues with the bags sealing properly, on a daily basis I would have a shirt full of feces from my uncooperative ostomy. Gas would pass at the most awkward moments, I was left frozen as rooms full of people turned to look at me in shock.

              After a month I started to get the hang of things. I could clean and change my stoma without wanting to kill myself. I managed to fix the leaking bag issue. I even figured out that if I hold my hand over my stoma applying slight pressure when a gas urge came, then no sound would emit. I was adapting. The best part was living pain free. On top of that, I no longer had to worry about finding a bathroom due to Crohn’s. While not what I had planned with my life, it was clear to me that this was a huge improvement to my quality of life. I soon started going to concerts without a concern in the world. I walked the city freely. I went to restaurants and enjoyed myself. I went to baseball games. I even have a trip planned to go out of the country soon. These are all things that I would never have considered doing before my ostomy. Before I knew it, I was telling myself that I could actually enjoy parts of life that I couldn’t before.

              Is an ostomy “Normal”? I say fuck normal. What is normal anyway? Can anyone answer that? If you can, I bet I can find something about yourself that does not fit your own description. Whether we are stuck living with an ostomy or some other quality of life improving device, it is not about fitting in. It is about adapting and accepting that our new selves can experience a better life. I have an ostomy and I am awesome!

[anxietyproblem]

[crohnieadventures]

As a spoonie, I endorse this message 😂

[crohnieadventures]

Crohn’s and Relationships

While we have various sorts of relationships such as family, friends, co-workers, etc. I am specifically referring to that special person in your life and how Crohn’s plays a part in finding that special person. Crohn’s is like that buddy of yours who is always a third wheel on your dates. You lean in to kiss your date goodnight and there he is, butting in with a bad joke. But it does not mean we have to let it ruin our chances at happiness.

              Patience is key. Patience in finding the right person. I am 40 years old, have been divorced twice and I have finally met someone who has what it takes to handle my condition. Had I been patient in my younger days and knew what to wait for, I could have avoided a lot of pain and heart break. But, like they say hind sight is 20/20. When looking for a significant other, it is ok to be selfish in what you are looking for. This means do not settle. Having a chronic illness does not mean we cannot find happiness. It just means we need to be extra aware of what it takes to be that right person. Those qualities will be different for each of us. I met that person when I was in my worse condition (let’s call her “Red Sox Fan”). I met Red Sox Fan after I had to have surgery to put an ostomy into place. I thought that was the end for any chance of finding someone. When in fact, it allowed me to find someone that truly loved me for me. I did not hesitate to tell her about my Crohn’s or my ostomy as soon as we met. I have learned quickly that this is not something you want to hide. To my great surprise, Red Sox Fan responded with “So what” when I told her. So what? What do you mean so what? She said, “Does the ostomy define who you are?” She saw me for me. Since the day we met, she has completely embraced my Crohn’s. She does research, finds diets, and looks for new medications. She helps so much that it makes me embarrassed that I never took such good care of myself. After only a few months of dating, we had a fight and were on the rocks. I had to have a surgery, and she did not hesitate to come to my house and take care of me for two straight months. Despite our rocky situation, she bathed me, fed me, and made sure I was being nursed back to health. Did I mention she left her job for two months to do this? Needless to say, I am a lucky man.

              This post seemed to turn into me bragging about my “Red Sox Fan”, and I don’t mind bragging. I will brag to world because I am that lucky. But that is not my intention here. My intention is to pass along the message that given time, the right person will come along who can handle your chronic illness. Do not settle, be selfish in what you are looking for, and take your time. We all deserve happiness in our lives. Go Red Sox!

[dissolutionandcreation]

If you need to rest, that’s perfectly okay. Resting isn’t laziness.

[positivity-in-pain]

[hidradenitis-support-selina-blog]

“Take 2 Tylenol and i’ll see ya in 2 weeks!”

[crohnieadventures]

Sad but true

[crohnieadventures]

On Laughter

Crohn’s is one of those diseases that sit right in that sweet spot of misery. You will likely not die from it, so you get to enjoy a nice long life dealing with it. You do not appear sick to other people, so you get little understanding from them. For most of us, we are just sick enough that we can still work but so sick that it is hard to put 100% into your job. Needless to say, this disease invites depression into your life with doors wide open. We cannot live a life with both this disease and depression.  How do we kick depression in the butt? I find that laughter has helped me deal with both the disease and depression tremendously.

I am reminded of the scene in the movie “Dumb and Dumber” when Harry (played by Jeff Daniels) drank a heaping cup full of laxatives that was secretly put into his drink by Lloyd (played by Jim Carrey). It did not take long before Harry was squirming and desperately looking for a bathroom, finding one just in time to explode on the toilet. I was a teenager when I first saw this and the sophomoric type humor had me rolling in laughter.  Years later, while battling depression over Crohn’s I came to the realization that the situations I have been through are extremely funny when looked through the same lens that I was using while watching “Dumb and Dumber”. Is it funny to deal with the issues related to Crohn’s such as rushing to a bathroom or even worse not finding a bathroom? Not at all. But after those nightmarish situations pass, I find that if I look back at them with the right viewpoint I can honestly laugh at them.

Laughing at your own stories of desperation does not work for everyone. We each have to find our own way to cope with our situations. For me, reverting back to the child who laughs at farts and poop jokes does wonders. In closing, I ask you to do one thing. Pull my finger….hehehe.

[crohnieadventures]

It could be worse....

Unless you are someone that has it worse, do not tell someone with a chronic illness that it could be worse. I will not feel guilty for wanting to live a better life.

[spoonie-isms]

TMI

You never realize how important pooping regular poop on a reasonable schedule is to your life until you don’t have it anymore

[disabilityhealth]

Bringing up proof when someone doesn’t believe in my illness

[Gif of Melissa McCarthy throwing a book over Sandra Bullock’s shoulder and into the face of a man sitting handcuffed to a chair.]

[crohnieadventures]

Yes indeed haha

[crohnieadventures]

Not All Crohnies are Created Equal

One of the main challenge concerning Crohn’s, Ulcerative Colitis and other Inflammatory Bowel Diseases is that there is a huge range of what works and what does not work, what causes a flair up and what does not between each individual. Each case has its own unique challenges. After reading a variety of blogs, I realized that some of you who have just been diagnosed can benefit from my experience. While there are many things that hurt me and many things that do not, I wanted to make a post on some of the top foods I stay away from and some of the top foods that actually help me.

              Let’s start with what will put me into a flair up. My full list is long but here are the top three items that will guarantee a run to the bathroom. Refined sugar is number one.  I will leave out all the science on why sugar is bad for anyone, but I suggest you do some research on it. What makes this so bad is that sugar is addictive. Some have argued that it is more addictive than narcotics. Ever try to give up sugar cold turkey? Your body will go into withdrawals. Regardless of that, a simple bag of candy gives my Crohn’s fits. Next up is caffeine. There is also an addictive quality to caffeine making this one a very hard thing to stay away from. It gives you energy and makes you feel great. Waking up to a cup of coffee is near heaven. Except, I might as well drink it while sitting on the toilet. The third on this list is alcohol. Some alcohols are worse than others. I find that I can have a glass of bourbon now and then and be ok. But it is best to just stay away. No sugar, caffeine, or booze? Talk about a real bummer right? It is ok though, I rather enjoy a calm stomach.

              Moving on to what actually helps. What we are looking for here are foods that slow down the activity in our guts and reduce inflammation. The most important item on this list is rice. Your body actually fully digests rice. This means that if you ate nothing but rice, you would never have a bowel movement. It is easy on your guts and also slows down digestion, allowing nutrients from other foods to be absorbed. I eat rice daily. Plantains are number two for me. There has been recent research that shows plantains can actually override some of the horrible things Crohn’s does. I took it upon myself to try it, and yes they have helped me tremendously. Rice and plantains together is my power meal. I live in South Louisiana so eating just that is a shock to my taste buds because it is so bland. So let’s talk about seasonings. Turmeric and cumin are both known to reduce inflammation and aid in digestion. I use them with every meal. To fill in the gaps, I eat lean white meat. Usually chicken breast or turkey. While this is not my complete diet, this is the majority of what keeps my bowels healthy.

              I will end on the same note as I started. We are all different when it comes to inflammatory bowel diseases. Just because these foods might trigger or might help me does not mean it will hurt or help you. But knowledge is power. Find out your triggers and what actually helps you and then be consistent. Consistency is key. If you have trigger foods or foods that help you and would like to share, please respond to this post. We have to stick together and beat this together.  

[crohnssupport]

Me: Takes one bite of food. My stomach: Bitch! How DARE you eat food! Feel my wrath! *gut punch* Me: *sprints like an Olympian to the bathroom*