Breakfast of Champs

Today I’m starting my day out with a delicious 24 oz styrofoam cup of berry flavored barium. If you’ve never tried it, I hope you never have to. It’s nice, chalky texture leaves a beautiful white film all around your mouth and tongue and has you burping up the berry flavoring for hours. 

After you chug it down, you then have to take X-rays of your stomach and small intestines every 15 minutes until it reaches your large intestine. This will help the doctor determine whether you do or do not have Crohn’s disease. This is simply a precaution before I go ahead with surgery as the surgery is not recommended for patients with Crohn’s disease. 

The next and final test I have is a blood test. My GI says it’s a little outdated but apparently it also helps determine whether a patient has Crohn’s or Colitis. 

After I “pass” these, I’m good to go for surgery in November. Lucky me! 

And I’m off for another X-ray!

blessings,

erika

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Surprise!

I was just surprised with a phone call from my surgeons office. It looks like they no longer have November 14th available to them at the hospital so they need to move my surgery up a week. This will be good for a few reasons. It will bring me one week further from Thanksgiving/my husband’s birthday so that maybe I can function a little better, and one extra week to recover before Christmas time. Also, one less week to drive myself crazy thinking about this surgery.

I’ve been obsessively thinking about what’s to come and mentally preparing myself. I’ve also become obsessed with organizing my house before surgery for some odd reason. I swear I need xanax or something. I’m a hot mess. My OB who prescribed me Lexapro for anxiety and PMDD (essentially extreme PMS), told me to up my dosage as she’s concerned about my anxiety level. So today is day one of 20mg instead of 10. We will monitor that for 2 weeks and make adjustments accordingly. I’m hoping it helps.

Tomorrow I have a barium X-ray test just to ensure that I don’t have any disease in my upper GI tract. If I do, that would indicate Crohn’s disease which this surgery is not a good treatment for.  I have had this test once before about 13 years ago and it was awful. I had to drink this chalky substance (barium) which made me gag and almost vomit and then they put me on the table and flipped me around while they took the pictures. You’d think that with all the advancements in medicine they’d revamp the way they do these tests. I’ve heard they now flavor the barium but something in me is telling me that it’s going to make it worse, if that’s at all possible.

I am thankful though that my surgeon did not order an anal muscle test. I’ve heard that it’s common for surgeons to order that test before performing the JPouch surgery on a patient. Although mine did give me a rectal exam, he said he doesn’t feel the test is necessary for me. So, I’ve got that going for me.

I know you’re jealous of my glamorous life. It’s hard being this special but someone’s gotta do it.

blessings,

erika

Mrs. Brightside

Since I last wrote, I have brought myself to a better headspace. I made a decision to focus on the “pro” side of the t-chart. I have become obsessed with preparing myself both mentally and physically. I’ve been organizing my house, catching up on projects, and researching everything there is to know about the j-Pouch surgery. I’ve been watching YouTube videos of fellow j-Pouchers and their experiences and have made an extensive list of things I need to purchase for my new body.

I am still nervous of course. There are so many unknowns and what ifs, but I believe this is the right choice. The reality is, the medications I’ve been on the past 15 years are dangerous. It’s easy to forget that fact sometimes because I’ve never experienced the scarier side effects like brain infections and cancer, but the truth is the risks are still there. The pain I endure on a daily basis is also something I’m looking forward to parting with eventually, not to mention my extremely high risk of colon cancer.

I realized, I owe it to myself, my husband, and my kids to at least make an attempt to better my quality of life. It’s funny because many people in my life don’t even realize the extent of my illness. I do such a great job of hiding it that when they hear I’m having my colon removed they are absolutely shocked. If the only knew the reality that I live in every day.

So, today I’m choosing the bright side. I am putting my faith in God, in my family, and in my body.

blessings,

erika

You Have 3 Choices And They All Suck

There’s this face that my doctor makes whenever she walks into the exam room having read in her notes that I am still not in remission. It’s like a mixture between absolute concern and pity. With her brows furrowed, and that look on her face, today she listed off three options.

1. Join a clinical study for an oral drug that is not yet, but close to being approved by the FDA for people with Ulcerative Colitis who failed at achieving remission with Humira. Because it’s a clinical study, everything is completely covered but I am essentially the guinea pig.

2. Be referred and admitted to a university type setting (I.e. The Cleveland Clinic) to be evaluated and hopefully something innovative would come along to try that would put me in remission.

3. Get a referral to talk to a colorectal surgeon about the J Pouch surgery.

So kids, it looks like I’ll be meeting with a surgeon that my specialist highly recommends to talk more about moving forward with having my colon removed. In the meantime, I’ll be joining the clinical study. The one good piece of news I got today was that she wants me to do a rapid taper off the prednisone so I’ll be done with that in about 3 weeks as opposed to October.

I am not sure what to think. I am emotional and anxious about the whole thing. But today my husband looked me in the eye and said, “I know you’re afraid of this surgery, but I’m afraid of the long term side effects of all these drugs you take. I don’t care if you have a bag, or a pouch or anything else, I just care that I have you.”

So, despite the fact that I am terrified, I owe it to him and my boys to do everything in my power to be here for the long haul with them.

I am scared. But I am strong.

 

blessings,

Erika