Friday, November 20, 2015

A Difference A Month Makes

What an up and down month it's been.
I haven't had the energy or desire to write for awhile and the main reason....very difficult to sit.
It started out with a peri anal abscess but it started to drain on its own, so no need for hospital visit (which I'm always thankful for).  That lasted about 3 weeks before the dreaded discovery that it was now a fistula and leaking out the hole....god that hurts.  I was so afraid to go to the bathroom that I did what most of us do and stopped eating.  I know its not a great idea, but the alternative was pain and I have dropped 10 lbs.  It was at this point that I took the trip to the ER and ended up having surgery but the surgeon couldn't find the fissure so did his best to relieve the pain.  Three days later I was home still with a hole in my body, but no cavity for the fissure to fill so at least I can go to the bathroom with minimal pain.  Needless to say I haven't been able to work work, no money.
Now I have an appointment with a colorectal surgeon and an MRI.  Always before Christmas. Monday is D-Day and see what the surgeon has to suggest. 
Ironically, the Remicade IS working for the rest of the Crohn's, just not the abscesses.

Wednesday, November 18, 2015

You Might Be A Crohnie

If you use your wedding ring as a barometer to gauge how much weight you gain or lose
... you might be a Crohnie

Tuesday, October 20, 2015

My Crohn's Inspired Tattoo

After all the tattoos I have, I finally got my Crohn's inspired tattoo, done like it was put on with a paintbrush to accent my artistic side.
All my tattoos have some sort of meaning and this one is no different.  Not only is it to bring awareness of Crohn's Disease but support for it as well.

Friday, October 16, 2015

You Might Be A Crohnie

If one of the decisions you make for the day, is whether or not to just get out of bed might be a Crohnie

Wednesday, October 14, 2015

Crohnie Quote of the Day

Pain can change you, but that doesn't mean it has to be a bad change.
Take that pain and turn it into wisdom.

Wednesday, September 30, 2015

Remicade : Day 1163

Came in to the clinic a couple of hours ago and my nurse asks me, "did you know I need to take blood from you today?" That's not always good to hear.  Apparently my gastro wants to check my Remicade levels.....also not something I wanted to hear. After my colonoscopy there was a note stating she found "stricture and inflammation".
Maybe she can see something from the bloodwork and hopefully my Remicade can be adjusted.  I'm not feeling "bad" or anything, so not sure what she saw. The treatments have been very helpful towards having a somewhat normal life, I don't want to stop now. I've almost forgotten what life was like prior to Remicade....almost.

Wednesday, September 16, 2015

Crohn's and the Common Cold

It was so easy when I was "normal" whenever I got a cold and cough, I could just take some cough syrup, or decongestant.  That was so long ago.  I use to take some Nyquil at night, fall asleep and wake up the next morning and feel better.  Not completely well, but better.
Since Crohn's, I haven't been able to do anything like that.  Nyquil is now completely out of the question.  If I take it, it goes right through me and makes for one hell of a "messy" night, not to mention the frequent hourly runs to the toilet.  Sometimes even causing abdominal discomfort.  So, what does one do when you catch a cold and have Crohn's..??  For me, just about nothing. 
I did discover that the majority of cold medicines, and there are hundreds, contain the same medicine as a regular, or extra strength Tylenol.  The active ingredient is the same, so why spend the extra money on something you already have in the medicine cabinet. This is what I take now and it seems to work nicely.  Another thing I discovered since my Remicade treatments, Nyquil doesn't affect me like it use to.  I can now take it and not have discomfort, only have to go to the bathroom a few times in the night and have only minimal accidents.
Medicine, like food and drink, for Crohn's is trial and error.

Friday, September 11, 2015

Crohnie Quote of the Day

"How can I hide in the dark, curled up in the fetal position....when it's so damn light outside"

Thursday, August 27, 2015

All 'Pee' and Clear

Sorry that I haven't updated, but have been dealing with my kidneys.  Unfortunately, kidney stones are secondary to Crohn's Disease and I have been suffering through them on and off for 25 years now.  Now I have been researching a low oxalate diet.  Most of the foods and drinks that are high in oxalates I don't take anyway, but now I'm learning that if I were to have something that is higher, then I need to eat, or drink, something with calcium.  Calcium is the key to lowering the oxalate.  BUT, I normally don't drink milk, etc. because of lactose intolerance, so it's been interesting researching what foods have calcium. 
I have the stent removed now (that was "fun") and no longer have the flank pain from my kidney.  The doctor told me it was one of the longest surgeries she's ever done with stones, just over an hour. I had 4 and one almost 1.5 cm.  I had to keep the stent in for a week and a half, but she was able to get them all by either using the basket or breaking them up by laser.  I like to say, "all 'pee' and clear".
I have been taking my time off writing more of my book.  I got the title copywrited and didn't realize when I started writing, that it would be such a long process trying to remember everything over the 27 years of my disease.
It's coming along though...