Saturday, October 30, 2021

One year ago.....

 As we watch Hocus Pocus (as we do each year) and the kids carving pumpkins in the kitchen, I think back to just 1 year ago where on Halloween day my doctor called to tell me to get to the ER as soon as possible... I was in acute renal failure.

To take you all back, I had temporary loop ileostomy surgery in September and was recovering at home while waiting for permanent ileostomy and proctectomy surgery (aka Barbie/Ken butt).  I needed to wait as I had multiple fistulas with my perianal disease and the temporary ostomy diverted stool away from the rectum in hopes to calm it down.  During my recovery at home, and unknown to me, I was losing too much liquid through my ostomy.  Was it watery? Yes.  Did I know any better? No.  I called my surgeon several times and was told it was part of the recovery.  But when I started to have dizzy spells, nausea, vomiting and passed out, I called my doctor requesting blood work.  The next day he called, it came back showing a GFR of 4 (low) and creatinine of 1049 (high) and to get to the hospital asap and he will call ahead for them to expect me.  I was in acute renal failure because of my ostomy.  I went by ambulance in case I passed out along the way, but I didn't.

I was put on drugs and saline as soon as I entered the ER and was waiting for a call from my surgeon at a different hospital.  I was in this ER for Halloween waiting and the next day I was transferred via ambulance to another hospital to treat my kidneys and await my other surgeries.

Fast forward 1 year.  The ostomy and proctectomy surgeries went well (6 hours).  I spent 27 days in hospital including my first time in the HICU (High Intensity Care Unit) because of my kidneys and blood transfusions.  It has taken 11 months for my GFR and creatinine to come back to "normal".  Still low, but way out of danger and looks like no kidney damage.  I now have a new doctor to add to my list, a nephrologist.  Side note... all my doctors (family, surgeon, specialist, nephrologist, and urologist) are all women and I thank them all.

It was 1 year ago when I got scared again for my health.  The thought of renal failure on top of everything else I've been through with Crohn's scared the hell out of me.  I was so close to either needing dialysis or a kidney transplant.  I am glad I requested blood work.


Friday, October 22, 2021

You May Be An Ostomate If...

 If you subconsciously check your bag while driving through the country because of the pungent air might be an ostomate


Wednesday, September 15, 2021

You May Be An Ostomate If...

If you are having a get-together with family and friends and all you can think to yourself is, 
"I'm totally pooping right now" may be an ostomate.


Friday, September 3, 2021

"crohns & stuff"

 All of us that suffer from IBD have secondary illnesses (and sometimes 3rd, 4th, and 5th) in combination with our main diagnosis.  Extra "stuff" so to speak.

So having said that, I introduce my "crohns & stuff" collection on my Redbubble page.

Simple. Straight forward. Black and white. 3 words say it all.

Please come by and take a look!!


Wednesday, September 1, 2021

COVID 19 3rd Dose Booster

Crohn's and Colitis Canada has recommended that people who have IBD on medications that suppress the immune system be included with other immunocompromised people getting the 3rd booster shot in the fight against COVID 19.  See here:


As does the Crohns Colitis Foundation:


And Crohns and Colitis UK:


Please contact your local governments to push adding immunosuppressed IBD patients to their 3rd dose lists.  With the Delta variant becoming more and more prevalent, and with the millions of people NOT vaccinated (for whatever reason) the risk of catching COVID is still there.

Thursday, August 26, 2021

You May Be An Ostomate If....

 If you say "Ahhhhhhhh...." when taking off your ostomy belt when you get home from work may be an ostomate. 

Tuesday, August 24, 2021

You May Be An Ostomate If...

 If airport security asks, "Can I look in your bag?" and you lift your shirt may be an ostomate.


Saturday, August 14, 2021

All Together Now

 If you would like to read all my "You Might Be a Crohnie" lines, they are all on one page.

From the main page, click on the "You Might Be a Crohnie" tab, or click here:

You Might Be a Crohnie

See how many you can relate to 😁

Wednesday, July 28, 2021

Wednesday, July 21, 2021

10th Annual WEGO Health Awards

Once again I am humbled for being nominated in 5 categories in this year's WEGO Health Awards. Endorsements are on now until July 31 and if you would like to endorse me or this blog, please click one of the badges below to endorse. 

The WEGO Health Awards have proven to be one of the best ways to honor, recognize, and celebrate the work of patient advocates, influencers, and healthcare collaborators who are changing the patients’ lives and transforming healthcare.

Thank you in advance and good luck to all the nominees !!!