My Story: Crohn’s Disease and My Journey Back to “My Happy.”

My Story: Crohn’s Disease and My Journey Back to “My Happy.”

By Claudia Merandi.

Right around the time I was six years old, I started to get horrible stomach pains. My dad suffered with Crohn’s Disease and it was not uncommon to hear him cry when he was in the bathroom. I used to put my pillow over my head, so I could muffle out his cries.

My stomach would continue to worsen over the years and by the time I was in court reporting school, I would experience full-blown Crohn’s flare accompanied by painful obstructions. The stress of owning a court reporting agency and working as a reporter would bring on debilitating flares.

Right around my 30s, after I had both my children, I asked myself, “Where the hell did everybody go?” The only people I surrounded myself with were my daughters and my mom. All my friends disappeared. Eventually, my illness would rob me of my fiancé, my business, my career, and any connection I had to the outside world. The “healthy” people, as I would refer to them, all disappeared.

There were too many occasions when I would eat poorly, and without fail, I would get admitted to the hospital the next day. My doctors would tell me to watch my diet and I would say, “Oh, my Crohn’s is too bad; my diet has nothing to do with going in the hospital.” Or I would talk myself into believing that I’m just sick; stress or no stress, I’ll still be sick.

Before I knew it, I became a person with Crohn’s instead of a person living with Crohn’s. I started to identify as a sick person. “Oh, I can’t go because I’m too sick.” Or I would tell my then fiancé, “We can’t have sex because I ate today.” (Boy, I sure wish I could turn back the “sex” clock.”)

Who the hell would want to be around me? I started to hate myself. If I hated myself, why would anybody love me?

I was very private about my hospital stays and my depression. I associated depression and illness as a form of weakness. If I was depressed, I was weak; if I went in the hospital again, I convinced myself that I could have waited longer before I went in. It was the” mental emotional Crohn’s Disease cycle.”

When you grow up in an Italian household, you don’t complain much. And if you did, your mom would throw her slipper at your head.

But it becomes hard no to complain. I think any painful chronic illness tears you down physically, emotionally, and mentally. But I just got tired of living like that.

I woke one day, after spending too many days in bed, and I looked in the mirror and I said out loud, “This shit stops today.” I decided I was going to deliver Meals on Wheels.

My mom would tell me, “You have to help others in order to help yourself.” For some reason, that morning was the day I decided to transition into a healthier, happier Claudia.

I would pick up my meals at the meal distribution center. I would gag because they stunk. I took my daughters with me when I would deliver the meals. My people would wait at the door for me to arrive with their meals. My girls would put a smile on their face. Delivering those meals made me feel better than the people that were receiving them. I’ve always enjoyed working with the elderly, so I completed my training to become an advocate for the elderly. Between both volunteer positions, it started to give me back my confidence.

Prior to volunteering, I would avoid talking with the other moms or friends because I felt sad and I didn’t want to be a burden on others with my sadness. I was always the: “I’m fine, thank you for asking” girl.

I was a classically- trained vocalist and I was involved in theatre, so I had an intrinsic stage presence. I could feel some of my “stage presence happy” slowly starting to return.

My mom’s identical twin died in 2016 and I wanted to lift her spirits. I hated to see her so sad. She took care of me and my girls while I was in the hospital for 20 years and it was my turn to take care of her. So, I decided to enter a fitness competition and bring awareness to Crohn’s Disease. I knew the monumental task that was ahead of me: I had to stay healthy, train daily, and eat perfectly clean if I was going to wear a bikini and five-inch heels on stage.

There was one problem: I surrounded myself with some negative people.  After my first weigh in, I decided all the negative, hateful people need to exit my life and that included family and friends.

There was this one girlfriend that was always negative, always talking badly about others, and seemed to thrive on gossip. After I would leave her, I would feel “fat with anger.”  She was the first to go.

We’re Italian so I needed to maintain cooking large meals for my family. But no matter what I cooked, my willpower would prevail.  When you diet, there’s people that try to sabotage your diet. You learn who they are quickly. But nobody could deter me from my goals. I was working too hard to let food destroy my gains.

Slowly, I started to retrain my mind into a positive lifestyle. Great things always start with something small and sometimes it’s those small changes that are the most effective.

Every morning, I would wake up at 4:30 a.m., make my girls’ their lunches, and I would pray the same prayer on the way to the gym: “God, give me the strength to diet strong, train strong, advocate strong.” That pray has never changed.

Now, I would still get sick and land in the hospital but I no longer self-loathed. I didn’t feel the guilt attached to the hospital stays. I had increased the frequency of my Remicade and I started on a small dose of daily opioids and that helped immensely with achieving remission. I still had the frequent bathroom trips; but instead of 40 daily, I was down to 15 daily.  Instead of being admitted every 14 days, it was every four months. It was around that time I had decided to have my breast implants removed. I was desperate to find my way to “my” healthy.

Once I retrained my mind, I knew if something or someone caused me stress, it needed to be eliminated. 

Now, my diet was clean, I’m training at the gym daily, my friends are positive, my faith is strong, so I started to live by the 4 Fs; “Faith, fitness, fortitude.” And if you don’t like it, you can F off. (that’s the fourth F.)

I started to go out more. I was no longer accompanied by a large shawl that only an elderly lady would wear. I loved who I was becoming. And I knew it was just going to get better.

But there’s one factor that you can’t get away from when you’re a person with Crohn’s and a patient advocate: COMPLAINING!!For me, complaining is wasted energy but it’s rampant in the pain community.

When I created the Don’t Punish Pain Rally movement, there were several obstacles that would stunt my “mental growth.” There’s a massive amount of negativity and complaining in the pain community. I needed to find a good place where I could be a presence, help effect change, but block the negativity. That’s where my lifestyle would be my saving grace. You see, when you create an amazing lifestyle, even with Crohn’s Disease, those negative forces can’t take you down.

Two days ago, we celebrated the second Don’t Punish Pain Protest. We organized 80 protests. My training never stopped but my diet definitely isn’t as clean as I would like it to be.

Many people believe dieting is difficult. It starts off as a diet but it leads into a lifestyle. Training daily, praying daily, eating clean, surrounding myself with good people, those are all pieces to being the best that I can be. But you must find the pieces to be the best that you can be.

Be good to your body. Be good to your soul. Be good to your illness.

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Authored by: Claudia Merandi

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Julia Heath

Love ya Claudia! I’ve got your back. And whenever you need a prayer or a breath of fresh peace and positivity, you’ve got my phone #. Praying for you – for all of us – to continue to be a strong and unified voice for those with chronic pain, until we win back our right to feel as good as possible!

Mike Crail

Hello, do I understand where you are coming from. No 62 at 28 I started having stabbing pains in my abdomen. My fife in life was to be able to trouble shoot myself. I eliminated all food I ate, started with bologna sandwiches for days, then added one other food and another, til I found it was milk, then cheese, then ice cream and so on. After years of this I boiled it down to WHEY! Found they put it in everything. Start reading the ingredients. Found it in processed meats. If you can eliminate this, over half of food intake, you will end your flair ups. It hides the affects. You eat it, it forces you to the bathroom, them it clamps down your systems muscles for days causing sharp pains in your abdomen, then more whey forces you to evacuate with pain till your guts feel all twisted up. Read for WHEY. Advoid it as much as you can and you will feel better. You can feel your intestines muscles contracting but not all the time. Constipation it caused by Whey and it’s a milk product but processed to the extent it’s overloading the body. The body can’t break down the overdose the food chain is putting on us. Lactaid milk adds the enzymes to break down the WHEY. WHEY is my enemy!

vicky swift

thanks to everyone who posted and Claudia…you go girl! most impressed. so it sounds like a link between exercise and regaining health. I’ve re-started weight training 2 days week. and i walk my dogs a lot. Thanks for such a positive post!

David W Cole

What an inspirational post, thank you. I’m a CPP that has peripheral neuropathy, bone on bone arthritic shoulder with two tears and a tendon, a left ankle that needs reconstructive surgery, etc and now after 3 yrs going to the Gastrology Clinics, three different doctors an RN all telling me I have IBS and I should eat a high-fiber diet drink lots of water. I finally said BS and went and told my new doctor, all my symptoms point to Crohn’s. I’m 59 years old she tried to tell me that Crohn’s is a kid’s disease, then told me if I don’t like you Her diagnosis maybe I should get a second opinion, then just went off on me, at that point I just stop listening to her I was so pissed I wanted to punch her in the face.
I’ve come to the conclusion doctors think patients are stupid. However she did start ordering the test and by God they all come back with IBD Crohn’s. These idiots damn near killed me I was so weak of 3 years of not being able to eat properly and stress, anxiety and depression. Then I have these idiot doctors telling me I need to cut back on my pain medication by / 2/3. I guess what I’m trying to say is you have to develop a positive attitude and do what you can be your own advocate look for the good in life. Or Crohn’s and all the other elements people have at the same time will get you killed, if you don’t put a bullet in your head, It’ll be a slow painful death. I’m sure everybody knows prednisone will put Crohn’s in check, I just wanted to let everybody know that I started taking Budesonide, this is a steroid that just stays in your intestinal tract, this helped quite a bit, I wanted it all gone so I called the doctor and said I hope there’s something else we can do here, she also prescribed Pentasa (mesadlamine) this stuff is expensive $1,600 a month. I’ve already met my $5,000 deductible so it’s free until the first of the year. Don’t know what I’m going to do then. I just wanted to let everybody know there are things you can take. God bless all of you

Holly

Very inspiring Claudia! Today I am going to try to stop complaining! It’s funny how things slip in your life and you dont realize it until someone or something calls you out on it. When I was hospitalized for so many infections I would start to see that there were people way worse than me and I became grateful! But with the opioid cutbacks etc etc. I have fallen and lost that thought. There is someone worse off that you! Thank you. You helped me today! Keep healthy and stay strong!

Autumn Gabriel

That was a great write up, Claudia! Only know you from Don’t Punish Pain & now feel a bit more informed about your story. Your strength, fortitude, & determination are an inspiration. KUDOS to you!!!! God Bless!!!! 😉

Teresa Tomsic

Very uplifting! I have the same problem. I’ve stopped eating because it hurts too bad. Don’t know what to eat because I have a bladder disease as well. It sure is not easy. Too many days in bed, No friends, Depression, Thinking I’ll never be normal or be able to do things others do. Thank you for such an inspiring account. 🕊

Kat Koe

Claudia, your story is so inspiring, how can it not be! I bet that’s why I felt the positivity coming from Don’t Punish Pain over the other 15-20 pain advocacy groups out there. I’ve been sick non-stop for the last 13 years and in the last five weeks I’ve been empowered to get a hold of my illness and stop letting it define me. Knowing that mornings are my best time of day, I’ve been walking nearly
1 1/4 miles, seven days a week and going to the gym four days a week. Mornings are when my pain is at its lowest so my workouts are completed by 8:30 am and my 1 1/4 mile daily walks are done by 7:20 am. It’s amazing what we can accomplish when we set our minds to it.
Best of luck to you and everyone!

cindy

Great column. Amazing story. I recently realized that I have become my pain. That’s my identity, since it limits me so much. It’s gotten worse over the years as the cumulative effects have worn me down so much. I can’t imagine changing that as Claudia has done, but maybe finally I will. Maybe my new planned attempt at medical marijuana will work. My first attempt failed, and cost a lot of $.

But, I think there’s a difference between “complaining” and “explaining” that all too frequently gets lost.
When I decline an invitation or suggestion, I explain that I have no choice b/c, for example, I’m not able to sit for the length of time required to go to a movie. I think that people think I’m complaining, but I’m really not. I feel that I need to explain why I’m home so much and do so little and why my house is so out of control. But I really am not complaining. As poor as my quality of life is, I’m much luckier than many other people. I have excellent disability insurance until I’m 65 and that insurer got me thru the SSDI process easily and so the super important accompanying access to Medicare. I’ve had mostly good pain managers and have gotten most of what I need from them. Once in a blue moon, I do feel like a normal person and while I need to use those occasions to do errands, it still feels great to get out and behave normally. Some people never have even those rare days.

Years ago, I was in a town center, and I saw a man who was not even in a wheelchair; he was on what looked like a hospital gurney. On the sidewalk. So completely disabled. I’ll never forget that. I don’t know how he got there or why or what he was doing, but he was there.
I always try to look at the cup as half full and I do succeed for the most part.

That was inspiring! My illness is part of who I am. My limitations are part of me, just as are my talents. Accepting myself for the whole package, is necessary to being able to function.

Virginia

Now that, my friend, is one of the most positive and uplifting, encouraging posts I’ve read yet on these blogs!
Praise the Lord for a woman like you! I too had to do something for someone, or something else to get out of the ‘poor me’, and the ‘why this?’ syndrome.
So I felt a leading to help the elderly and those worse off than me; which actually tended to be mostly end of life/hospice caregiving, full-time live-in situations.
Just yesterday I lost my best friend, pastor/mentor of 35+yrs. And his dear wife back in January this year.
I was to come help his wife in January to care for him, but she died 2 days after I got here. I’ve been here since, watching him suffer with dementia and Parkinson’s while totally incapable of anything except sucking a straw, talking, for a few months, urinating, thru a catheter, and waiting for someone to move his position, clean his behind and clean him, feed him, and give him medical care. 95yrs old.
Now that put the breaks on my complaints, and put the love of God from the depths of my heart out through everything I could do for him, and alot I couldn’t but for the strength of the Lord. Which gave me love, joy, and peace; even though there was plenty of heartache and sadness as well.
So I’m with you, dear, if possible, help someone else. That’s what we’re here for. To love one another. To love our neighbor as ourself. There’s always someone worse off than you.
And, you can always pray. I pray for each and every one of you, trust that.
God bless you all,