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gut-wrenching truth about crohns

Living with Crohn's!

A thought on Mother’s Day

Today at Walmart, the cashier asked me if I was a mom. My reply was only to fur babies. She kindly responded by telling me Happy Mother’s Day. Then while walking to the parking lot I thought how much her wishing me a Happy Mother’s Day meant to me. Recently I decided I would not have any biological kids of my own. I have had several conversations with my family about this and went back and forth with myself about it as well. I watch my friends and how dedicated mom’s they are by planning activities everyday for their children and the energy required to take care of them. In the meantime, I struggle to take care of myself. I think to myself that I don’t know how I could do that, everyday. Additionally, complications exist with my health background of Crohn’s Disease, malnutrition, and ovarian cysts so it would be a true struggle to have a “healthy” baby. Thus, I will only be a mom to my fur babies whom I love very much. I take care of them the best I can and when I can’t my parents help. I will be forever grateful of their unconditional love. 💜

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Does Healthy exist?

In an optimal world, I would like to believe healthy exists. However, in reality, I don’t believe it does.

I am not healthy. I have Crohn’s disease, anxiety and iron-deficiency anemia.

Looking into my immediate family: my dad had a 6 bi-pass surgery and has arthritis in his knees. My mom has arthritis in her joints and her bladder is misplaced despite surgery. She also has undiagnosed anxiety in my opinion. My brother has diagnosed IBS, if not IBD. I know the signs. He has them. My grandmother- diabetes and arthritis. She can barely walk some days. And so on and so forth, I believe I could name anyone and list some form of medical issue. Get my point?

Everyone, and I mean everyone, has some ailment. In most cases, I think we all at least strive for functional, because I am not all that sure healthy will ever be achieved.

That’s my gut-wrenching truth for the day!

Scared

2018 hasn’t started the way I would like. I started the first few days sick and at the end of the month ended up in the hospital for 3 days due to possible blockage/ stool stuck in small bowel. Only to return the day after discharge back to the hospital for severe pain- which now was an abscess the size of a tomato! I was in the hospital for 1 week and had a drain for 3 weeks. I am currently still on disability waiting to see what the next move is as I have two possible other abscesses in my last CT scan.

I am scared of the unknown. What happens next, the potential for more drains, changes of meds, and everything else that comes with Chronic illness.

I have delayed communicating with my GI in Cleveland until I know the full plan from my surgeon here at home. I am fearing knowing he’s going to say I failed yet another drug. I am no longer in remission, or the closest I have ever been to it. I am fearful of hearing the words I have active disease again. This is the fight that keeping on going. Every day is a battle.

I am scared, but I will win.

Poop-ageddon

So I started 2018 a little rocky. I just haven’t been feeling well. I am not sure if it’s because I injured my neck before Christmas, it’s the flu, a blockage, stress, or a flare. I just have a constant headache and my neck hurts on top of my output has been mostly liquid which is not normal for me.

This morning, Jan 3rd, I woke up to poop-ageddon. I had a massive leak, the worst one to date. It was all over my front, my side, and my back side. I am still working on the clean-up. 😂 All I can do is laugh tho and just clean up because shit happens.💩

Keepin’ it real. Thanks for reading.

*photo compliments of google image search

Reflections

Looking back on 2017, it was one of my healthiest years since I was 16. I recovered from ostomy surgery and returned to work full-time, Jan 2nd. While still struggling with some fatigue, depression/anxiety, and migraines- I minimally called off work this year. I attended social functions that I wasn’t able to attend years prior due to being too ill from crohns (including walking a 5K with my co-workers and attending Friendsgiving). My ostomy has not held me back but given me life. I also went swimming again for the first time in years! And I love swimming! I have a rockin’ new swim suit that is roched to hide my ostomy.

I also became and aunt to a beautiful fur-niece, Vera, who is a lab-pei (lab/ sharpei mix).

My parents remodeled their bedroom and laundry room.

I got a new car and am paying for it completely by myself! ADULTING!

I started an ostomy cover business and have fully embraced my new Love for sewing!

Overall- 2017 was good to me and I look forward to all the adventures of 2018!

Cheers!

Wishing everyone health and happiness in the new year!

“Keeping it real”

Not to be a negative Nancy, but to tell the honest “gut-wrenching truth,” I am tired of fighting for my health. My body is absolutely exhausted after my 2 day battle with a partial blockage. Waves of pain and nausea. Forcing myself to drink fluids to stay hydrated and spiking a fluctuating low grade fever. An overwhelming feeling of blah because I want to crawl out of my skin and I want nothing more than to move from the couch but I can’t. 

 I fight for my health everyday. EVERYDAY. Everything I do is a calculated move to improve my health or maintain a somewhat “neutral” health status.  I am on a highly strict diet because my gut is extremely sensitive. I want to eat a burger and drink a beer without dire  consequence. Stress can result in sleeping for over 12 hrs to heal from the “trauma” that most people may just shrug off. I want to binge eat skittles and drink soda to “treat” my stress but I would be so sick as a result. I hate that when I feel like garbage, all my energy is drained by only going to the store for 5 minutes. 

I am tired of the fight my body has to endure to maintain a “normal” life. This is exhausting after 17 years. Everyday for 17 years!

I am just tired. I have decided that if I won the lottery I would not immediately pay off my student loans or debts or buy a house. I would hire a personal chef and a driver. The driver would take me to my medical appointments that are out of state. I should mention that I am not a great cook. Cooking requires a lot of energy and creativity especially with my dietary restrictions. So that’s shy I would hire a chef. I would alleviate a lot of stress. 

Until then…

Give me my toilet! 

  
I need to vent about this. I ordered my Ostomy supplies February 9th, they shipped the 13th. I usually get them 2 days after they are shipped. The 15th came and went. I called the company they said Saturday I should get it. Saturday I used the last wafer ( part that sticks to my skin). I called today again bc I still have no supplies. My Ostomy company is now irritated as well and was directed to call FedEx. FedEx is now searching for the package
Are you kidding me?! 

Then the FedEx guy ask the contents of the package and I say Ostomy supplies and I instantly know he has no idea as he asks me to repeat myself. Dude it’s my toilet! That’s what I wanted to say. 

I also want to throw a bag shit at the FedEx delivery guy because I watched the FedEx guy pass my house 2 times on Saturday. Then maybe next time he will be more considerate of the being timely with his job and not thinking “it can wait; it’s not a big deal.” 

I hope I don’t have a leak before I get my supplies. 😐

End rant. 

Thanks for reading. 😊

I pooped in the shower

  I pooped in the shower today. It wasn’t the first time either. 

Let me explain. 

I have an ostomy and I had a leak so I was taking what we ostomates call a “naked shower” otherwise known as showering without your bag. (As a side notes – naked showers are glorious and don’t happen everyday. So those of you without an ostomy don’t take showering and cleaning all your skin everyday for granted.) 

Anyways, my gut decided it was going to poop in the shower today. I wanted to get mad because I had to stop the shower to clean the poop out of the shower. Then I popped on the floor outside of the shower. So I had a lot of cleaning before resuming the shower. But I did not get mad. I just took a deep breath because shit happens. Shit happens everyday, at anytime, and at any place. The shower is not the worst place to poop and it’s probably one of the easiest places to clean up. 

Thanks for reading! 

*Image compliments of google image search 

Gut instinct 

I wanted my first post of 2017 to be positive, but I can’t promise that. I can promise honesty and possible inspiration

I have been on disability for 6 months. I had permanent ostomy  surgery on September 28th, 2016. I also had my rectum and anus removed, otherwise known as “barbie butt” surgery, lol. Due to the nature of my disease the doctor didn’t sew my butt shut but rather left it open to heal from the inside out due to my perianal and rectal disease. My wound is still open but minimally. The better news is I am finally off the prednisone. YAY! 

I am returning to work on Monday (January 9th, 2017). I made the decision to return to work. My surgeon lets his patients decide when to return to work because they know their bodies best. However, I am getting mixed responses when I tell people I am returning to work. Some people are excited for me, while others question my decision. Thus, this makes me rethink my decision the past few days. Am I ready to return to work? Is it too soon? Am I strong enough

Ultimately, I have not changed my mind. I am returning to work on Monday. I am following my gut instinct. 

When I had my first surgery in 2008, most people were concerned I was going back to graduate school too soon (3 months after surgery) and that I would not make it. I proved them wrong. I did well that year and continued on to get my doctorate in 2011. I am determined to prove the nay-sayers wrong again. 

   

 

Make 2017 FIERCE! 

Thanks for reading! 🙂 

*photos conpliments of google image search   

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Dylan B. Nelson

Live life to the fullest! CoFounder @MEDI+SWARM Living with Crohn's Disease, Avascular Necrosis, Enteropathic Arthritis and an Atrial Septal Defect

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