Tuesday, July 28, 2020

You Might Be a Crohnie

If you have a bowel movement every morning at 8 AM, but don't wake up til 9 AM
...you might be a Crohnie

Sunday, July 26, 2020

It's in the Bag

32 years of fighting Crohn's disease has lead me to this... I need surgery for a permanent ostomy.

This is probably one of the hardest things to write about for me, it's taken me a couple of weeks to figure out what to say.
I need the surgery because of the peri anal abscesses, fissures and fistula's I have been dealing with for 30 years. I started getting them just 2 years after diagnosis. We have tried every medication attempting to fix these problems as well as deal with flares and pain.
Nothing seems to have worked, even the biologics. Remicade for 8 years and Humira since January.

My GI and I have talked about this surgery for years now, but I have learned to live with these problems most of my life and the thought of major surgery.... again... just didn't appeal to me.
I had an MRI done recently and it showed there is an abscess "collection" deep inside (that I cant feel) that has tripled in size since my previous MRI in 2017. It's not big, only about 2-3 cm, but that, and the fact my GI is concerned about the possibility of hidden cancer, made the decision for me to suck it up and get it done.

I have one of the best colorectal surgeons doing the surgery, so I feel more at ease about it. She has become and expert in the TaTME (Transanal Total Mesorectal Excision) technique and I will come out of the surgery with a permanent ileostomy and no butthole (Barbie butt).  I now have multiple tests to be done including blood work, CT scan and yet another colonoscopy. So, knowing all that, I have no idea WHEN the surgery will be.  Will I be ready? Sure...physically. I've had so many surgeries, another one is just that... another one. Will I be ready mentally? Not so sure. I haven't had major surgery in over 16 years for my 5th bowel resection and that one left me in hospital for 3 weeks. I remember the length of time to recover AFTER I got out of hospital and the thought of doing it all over again, just doesn't sit well...in my head. Every one I have talked to who have had ostomy surgery, say it is the best thing they have done for their Crohn's or Colitis and have no regrets.

And so, the next stage of my Crohn's journey begins.....

Sunday, July 19, 2020

You Might Be a Crohnie

If you haven't had a "normal" bowel movement since the 80's
... you might be a Crohnie


Saturday, July 11, 2020

Friday, July 3, 2020

2020 WEGO Health Awards

Endorsements are open for this year's WEGO Health Awards, recognizing health advocates for many health issues.  I would appreciate your vote, but there are hundreds of other great advocates to endorse as well.

I am nominated for:

Best in Show: Blog
Best in Show: Facebook
Patient Leader Hero

You can vote directly for me here:

Thanks and good luck to my fellow nominees!!