Don't lose hope

I haven't been on here in months.

I started this because i was having a hard time. Wanted some hope, wanted to encourage others. Once i started doing well with my new medication, i stopped. I had felt the best i have felt in years! It was amazing. I have been able to explore new foods. Deal with this new term "constipation." What. Never thought i would know what that feels like (poop baby anyone?)

But as i sit here, feeling the sharp pains of inching out of remission, i feel like i'm losing sight of hope. I talk to no one about it, because no one understands. People can feel sorry for me, but no one will understand what it's like to constantly have the fear that one day, you will wake up and not be well. That you'll have to rush to the bathroom, and pray before you look in the toilet to see whats there. That you will become self conscious of your slowly dwindling body. That no matter what you eat, you will never be satisfied. Fear of losing my rectum. Of it becoming so scarred that it will have no function, and i will have to have it removed.

Almost every year in the fall, i have this issue.

2011-the most painful time of my life. Curling in to the fetal postion before and after bowl movements. Losing 15 pounds. Taking months to recover. Looking back at pictures of myself with "fat face." (moon face, side effect of steroids)

2012-not as bad of a flare, but a flare. Getting a colonoscopy before moving cross country to my new home in South Carolina.

2013-ER visit for my birthday. So.much.blood. That's when i found out i had ulcers in my rectum

And here we are in 2014. I have been on biologics for months with no side effects. I have weaned off Uceris and imuran. And am now only taking Lialda and Cimzia. Once a month, my saving grace arrives by fedex or UPS in a styrofoam container filled with ice packs. This month, when i opened it, two of the packs were melted. There were still many packs in there, and i opened the meds and checked them immediately. They were still cold. So i did my injections. But now i wonder..were they cold enough?


I know i can call my doctor Monday and get another injection in the office if i need one. They have some for people who have "break through flares" before their next injection. But as i sit here crying, drinking my tea, wondering what i did wrong, all i can think about is the dread of the next bowl movement. The ostomy bag. The years of pooping on the outside of my body.

Pity party. I can't do that. Stress is bad for the colon. I know i need to buck up and go on with my night. It's a night for friends :) Plus the husband will be home soon, and i dont want him to see me like this. He need not worry.

 Hopefully we will meet again soon blog, because sometimes you just need to get it in the open.

Biologics and yoga

Happy Saturday y'all! Three day weekend for me, in the wicked cold of South Carolina! Yoga and the indoor shooting range today...and friends all day tomorrow! Love this weekend!

Got my first injection of cimzia about 10 days ago..not sure if I'm just being optimistic, but I honestly felt better within just a few days!

I also had cut out sugar..but I have done that before and still had issues 

Today, my freezer pack of meds finally came. Such a huge box for two tiny syringes. I'm so excited! I'm looking forward to my future. Being healthy, gaining weight, feeling like myself again. (My new self will still not include cow milk--had some yesterday with some Ezekiel cereal..ugh. No bueno) 

Maybe I'm bein too optimistic. But what else Can I do? Cry about it? Pft. Done with that. It's all about my positive outlook on life. And my glorious new future include the Seahawks winning their first Super Bowl :-) we hope...

Cimzia!

Today I finally got my first dose of cimzia! I haven't been waiting a long time..since I no longer respond to traditional methods. The insurance has been fighting this awhile. My doctor originally prescribed me humira, and then decided Cimzia because he said it was safer for people of child bearing age. 

I still have not received my dose from the company, but my doctor gave me a dose they have around the office for break through flare patients. 

I didn't realize the doses were so big! When she grabbed my thigh and inserted the needles, it hurt!! It isn't big, but there is a lot of fluid between those two needles. I was excited for it though, I've just been getting worse. Diarrhea for over two weeks now, and I can feel the sharp pain of my ulcers. Scared and excited! 

He said I should feel a difference within two weeks. But peak within a month. Not sure what happenes if biologics don't work, but I'm staying optimistic! Now it's bed time, between new shots and high doses of allergy shots and a full day if work, I'm pooped! ;-)