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gut-wrenching truth about crohns

Living with Crohn's!

“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   

No bake cookies

  
I saw a recipe for no bake cookies on Pinterest the other day and I modified it to make it even easier. 

I used:

– 2.5 cups of gluten free oats 

– 1/2 cup coconut oil

And  2/3 cup maple almond butter 

Mix all the ingredients together. Put a tablespoon of cookie mix on cookie sheet. Then put the cookies in the freezer for an hour, then refrigerate the cookies until they are ready to eat. 

If I were to make them again I would use a little less than 1/2 cup coconut oil. 

Enjoy! 

Thanks for reading! 🙂 

A week and counting 

  

I have been off pain meds for a week and counting. 

I am not a drug addict. 

I have Crohn’s disease and had permanent ostomy surgery on Sept. 28th, 2016.  In November I was admitted to the hospital because I was having extreme abdominal pain. The doctor diagnosed with ileus which is a fancy word for constipation.in the hospital they gave me stool softeners and laxatives and finally colonoscopy prep to drink- yuck! After that things did get moving again! 

 My ileus was basically caused by my pain meds. My nurse practitioner explained that after about 2 months the pain meds start having adverse effects on the colon. I don’t want to be in the hospital again and I want to be in the best health I can be- so now if I need something for pain I am to take Tylenol (NSAIDs like Motrin are harmful to my insides.) I have to say since then my output has been flowing nicely. It’s nice to feel healthier and “normal” again. I have been on and off pain meds for months prior to surgery due to pain and for months after surgery because of surgical pain.  So it’s nice not to be in pain and not have to rely on pain meds to get through the day anymore. 

One day at a time. Each day I am getting healthier and stronger! 🙂 

Thanks for reading! 🙂 

*photo compliments of google image search 

Something in the air?!?

  
I feel like a lot of my IBD friends are having issues this week, including myself. 

One of them is in the hospital for a flare- in which she hasn’t had a flare in a long time. 

Another is in the hospital and might need surgery, again. She’s in the hospital every 4 months it seems. Her body can’t find homeostasis. They might be bumping up her surgery from a few months from now to really soon.

Another friend is suppose to have a reversal surgery next week- but she went for a scope yesterday only to learn that the Drs want to wait– she needs to be put on a medicine that she was on before surgery but the Drs told her to stop taking but now want her back on. Completely heart breaking as she had her heart set on the reversal. 

And I am having mysterious stomach pain. It’s sharp and I am having output still. No nausea or vomiting. But the pain is sharp. Today is day 2 of this pain. I hope it’s not a flare. Boo.

What is in the air that is making having IBD difficult this week? 

Thanks for reading! 🙂 

*photo compliments of google image search 

OstoMY Covers! 

OstoMY Expressions

I am making custom made OstoMY covers! Check out my Facebook page: OstoMY Expressions
Check out my work! I have lots of fun fabrics!
Thanks! 🙂

Return of the C word

  
Cancer. My grandma’s breast cancer has returned. This time in her other breast. She’s in denial about it and refuses to proceed with treatment at this time. I understand her reasons but at the same time it’s hard to hear. She just found out this week so she still has time to change her mind. 

I need to make a conscious effort to spend more time with her. I went to see her today and she is such a spit fire- I love it! Someone called her the other day in regards to surveying people about who they were going to vote for in the election and she told the person on the phone it was none of their business with a few other choice words lol. 

If it wasn’t for my grandma I wouldn’t have been able to earn my doctorate. She helped me with my loans so I could earn my degree. I will forever be thankful to her! She’s helped me in so many ways. I don’t want to waste the precious time I have with left with her. As I am older now, I appreciate her more and laugh with her over adult humor because that’s just the way we are. The more I learn about her, the more I realize how much my father takes after her. Neither one of them is overly affectionate, but they have huge hearts and their own way of showing you they love you., 

She really has a huge heart. I know that me having crohns is hard for her. It was really hard for her to adjust to my dietary restrictions for a while. She shows her love through her cooking. I sure do miss her sugar cut out Christmas Cookies! The rest of the family is probably glad that I can’t eat them because I ate 80% of them, lol. Grandma did adjust to dietary restrictions; she makes me applesauce now. She also took to my Ostomy surgery well. She’s happy to see me feeling better. She always ask how o feel every time I see her now. And prior to surgery she always reassured me that surgery would help. And my disease is something we really never talked about. I love her. 

I treat my dog Suzie like my child. She’s my fur baby. And my grandma also treats her family. She tells Sue that she is her baby and tells her girlfriends about “her doggie” to the point if she’s on the phone and we come over she’s got to go because her doggie is here- not her grand-daughter. Hahaha! 

  
(Suzie) 

Spend time with your loved ones. Say I love you. Hug them. Time is precious! 

Thanks for reading! 🙂

* first photo compliments 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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