The new me

It’s been quite a long time since I’ve updated on here. A lot has changed. Mostly for the good healthwise. In 2016 I was diagnosed with Severe Crohn’s disease. I struggled flare up after flare up. I have been on 3 different biologic drugs. Two that completely failed me. Right now I am on Stelara and azathioprine to control my symptoms and it has been going pretty well. On December 6th 2018 I underwent  a bowel resection along with ileostomy surgery. For those of you who don’t know, An ileostomy is an opening in the belly (abdominal wall) that's made during surgery. The end of the ileum (the lowest part of the small intestine) is brought through this opening to form a stoma, usually on the lower right side of the abdomen. Therefore now I poop in and ostomy bag and empty it. Here’s what it looks like. 

Honestly as scary as this may seem to most people, I feel the best I’ve felt in a very long time. It isn’t too difficult to manage. I havemy ups and downs about it but mostly I’m just happy I feel good. I finally feel like I am winning this fight I’ve been having with crohns. Even though there is no known cure forcrohns managing my crohns has so far been very successful. 
My kids are doing great Gavin is going into middle school next year. How? 

Miss Kynlee will be in 1st grade next year, she’s doing amazing as well! 

My husband and I will be celebrating our 10year wedding anniversary in August we can’t wait to celebrate! 

That’s all for now! I plan to update a lot more often now that I’ve been feeling better. I will be talking more about my ostomy and to try to raise awareness on ostomies and Crohn’s disease so maybe I can help others with my experience. 
💜Ali

It's gonna be MAY, oh wait it is...

I've had so much negativity in my life lately. I recently had to deactivate my facebook because I just couldn't handle how upset it made me. With my Crohn's Disease I do not need that negativity and stress in my life. I plan to eliminate anything that causes me distress.

Since my last post, I have been put on a new medication to help treat my crohn's. I had my second loading dose of Enytvio. It is an infusion that I will get every 8 weeks for the rest of my life (or until it stops working which I hope does not happen). It's a 30 minute appointment which is a big change from the 3 hour appointment with the Remicade infusion I was on. I found out in November that I had developed antibodies to Remicade, so therefore was switched to Entyvio. I am also on a 40mg taper of prednisone. I cannot wait until I no longer depend on prednisone because it is such an icky drug. Day sweats, night sweats, bloated "moon face", constant hunger. YUCK! I've been feeling pretty good so lets hope this continues.

I have also had some stress with my job. I work for a contractor, and recently the contract was up and we didn't know whether we would get to keep the contract or if a new company would come in, well a new company came in and took over and it was a complete mess. I had to go to a job fair to apply for the job I already had. Needless to say, I got to keep my position but lost ALL of my benefits I had worked a long hard almost 3 years for. FMLA, health insurance, life insurance etc. So here I am wishing and hoping for the best and that I don't flare and get fired from my job. Luckily my husband was able to get health insurance through his work to help the family out. We are still waiting for coverage and I'm hoping it hurries. I need my infusions pre-approved before my June infusion.

I don't think people see or understand all of the stress I am under because they continue to put me in stressful situations. I try to handle and control everything and try not to show weakness.

The kids are doing great, Austin is doing great. School is almost out for Gavin for the year. I can't believe he will be in 4th grade next year. I am hoping to get Kynlee in preschool here soon.

Not much else to report.

-Ali

Pot of Gold Champs 2017

Not much going on over here, just trying to get through the week. My 29th birthday is in a couple weeks and I am trying to think of something fun to do. At this point, I would just be happy with going to Red Lobster and going home and going to bed these days. I have been feeling pretty good, and trying to get out and get exercise. I have lost about 10lbs in the last 2 months, which makes me feel good. I've been watching what I eat and haven't had much of an appetite so I think that's helping out. Last weekend Austin and I went out for St. Patrick's Day because he had a bowling tournament. He was bowling with his dad, uncle and cousins. It was a very fun night, and they won 1st place! They all bowled awesome. I am so proud of them!

 

On Sunday we took the kids to see the new Beauty and the Beast. It was really good, we enjoyed it!

 

 This weekend we really don't have any plans, Austin works day shift on Saturday so I kind of want to plan something fun. I need to get my butt in gear and start getting some wedding stuff done for my sisters wedding. It's not until November, but I want to make sure everything is perfect for her special day and the parties leading up to her special day. Here's to a good rest of the week, and a fun weekend hopefully.

-Ali