Homesick

“I want you get better, Mommy. I want you with me.”

Yesterday my babies came to visit me at the hospital. I’ve been here since Tuesday after my flare became so severe I was extremely dehydrated and writhing in pain on the floor. Before they left my little one asked me if I still had boo boos in my tummy and then blurted out the quote above. 

He’s 3. 

My heart breaks to see my children worry for their mommy and it aches for their hugs and kisses. Being separated from them these last few days has made me feel so isolated. It’s as if I’m missing an arm or a leg. 

Tomorrow I will get to go home. Tomorrow I will be with my babies. Tomorrow.

blessings,

erika

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Hard Love

“Would you like to come to the playground for a picnic with the kids?”

It seems like a simple enough question to answer. Normally, people wouldn’t weigh the pros and cons of taking a simple trip to the playground. Normally, you wouldn’t have to calculate how far away the nearest restroom is and if you think you could make it when you inevitably have to run there. Normally, a mother could take her children to the playground without worrying she’ll literally crap her pants while she’s there.

It seems so silly, that saying no to a trip to the playground that your children have played on a thousand times would take such an emotional toll on someone. But for me, it breaks my heart. The idea that my children have to spend even one minute not doing something they’d enjoy because of this disease makes me angry and sad.

I have been begging God to give me peace about this upcoming surgery. I have been anxious and obsessive and praying non stop. I’ve been convicted about having so much anxiety as the Lord has told me not to worry for He is for me, and yet I still do. I’ve been asking Him to change my spirit and my attitude about what’s to come and it seems He has answered. I have been so sick with abdominal pain and waves of nausea that I am counting down the days in anticipation of November 7th when this ball and chain will be removed from my body and I will be free.

See, sometimes, just like us parents, God gives us hard love. He changes our perspective in ways we didn’t anticipate or necessarily want, but He changes it none the less. I am thankful. Tired, but thankful that He has found a way to change my spirit.
blessings,

erika

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

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

It’s 3am, I must be lonely

Just kidding, it’s only 1am. I keep trying to fall asleep but you know, prednisone. So now I’m on one end of the couch across from my dog, who is not supposed to be on the couch at all, watching Mean Girls and eating Twizzlers.

Tomorrow I have to take my fourth shot of the new medication. I am hoping that it magically starts kicking in after this dose but I’m not holding my breath. I read that it could take up to 12 weeks to reach its full potential and here we are.

When I started taking these shots my four year old got very nervous. He was so concerned that I was going to hurt myself and began to cry when I pulled the shot out to warm it up. I wasn’t really sure how to handle the situation so I let him watch me inject it so that he could see for himself that it wasn’t painful or scary. He then proceeded to tell everyone that he saw for the next two weeks that his mommy is sick and needs shots to make her feel better, oh but don’t worry they don’t hurt. So either all these random people in the grocery store now feel bad for me or they think I’m a drug addict. Either way, he feels better about it so I’ve got that going for me.

Speaking of my kids, they’ll be up in about 5 hours and I’ll be a zombie if I don’t try to fall asleep. Wish me luck! Goodnight, friends.

 

blessings,

erika

I Prednisone Hard

IMG_0028After yet another sleepless night due to prednisone insomnia, I am up early before my children to start pounding coffee like it’s the last life sustaining force on my dying day.

Like many other chronically ill people, I have a love/hate relationship with prednisone. On one hand, it usually works quite well to subdue a stubborn flare. On the other, I gain weight mostly in my face but everywhere else too, I can’t sleep, I never want to stop eating, and I’m much more emotional. Not to mention the risk of osteoporosis, diabetes, pressure changes in the eyes, etc. Its like those commercials for the new drug that will cure your restless leg syndrome but could also cause seizures and your arms to fall off. You wonder, “Who in the world would ever take that after hearing all that?” Well, I’m one of those crazy people I guess.

Today I tapered down to 30mg from a start of 40 four weeks ago. I am to taper by 5mg every two weeks which brings me right up to the first week in October. I am in a wedding that week, and as of now will definitely not fit into my dress so hopefully being on such a low dose at that point will allow me to lose some of this prednisone weight. Ah, the joys of being a UC mama.

Well, my coffee maker just alerted me that my magic potion is now complete. Now I will sit here clutching my coffee cup like its a life raft until my children wake up. Wish me luck!

blessings,

erika

My Story

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I was diagnosed at 16. The age that a young girl starts coming into her own, becoming a woman. One day I noticed some blood in my stool but with no other symptoms, I overlooked it. It was only a week later and a toilet bowl full of blood that prompted me to call my mother in the bathroom with fear and worry of what this could mean.

Time seems to all sort of mesh into one unpleasant clump of history for me after this. That moment of panic turned into one doctors appointment, then another, then my first colonoscopy, a promise of it not being Crohn’s disease (which my aunt suffers from), a diagnosis of Crohn’s disease, a doctor with no bedside manner, a new pediatric gastroenterologist, more and more tests, 23 pills a day, steroids that made me gain 30 pounds in a month, enemas at night, more colonoscopies, two 3 week hospital stays with bowel infections, and finally a real diagnosis of Ulcerative Colitis by the time I was 18.

Finally after this, I fell into remission with the help of a drug called Remicade. I would go into the hospital’s pediatric cancer infusion center once every 6 weeks to get an infusion which would then reduce my immune system down to nothing so that my body would no longer fight my colon. See, Ulcerative Colitis is what they call an autoimmune disease. Imagine that you’ve received a lung transplant and your immune system rejects it because it’s not technically yours. Well, somehow my immune system got its wires crossed and treats my large intestine like a foreigner which causes the inflammation and disease.

I stayed in remission with Remicade for about 5 years when I eventually built up an immunity to it. We switched to Humira (an injection I could do at home every other week) which carried me through another 4 years, one healthy pregnancy and one really, really rough pregnancy. After my second son was born I faced the worst flare of my life. It began just before my pregnancy and steadily got worse throughout. We were very concerned with the development of the baby, I was on high doses of steroids throughout, checking my blood sugar constantly and losing weight steadily. Luckily, by the grace of God Uriah was born perfectly healthy at 38 weeks.

After that, life got difficult with a new baby, a two year old and a colon that was in really rough shape. We switched to another infusion called entyvio and that seemed to do the trick for another year and a half. Fast forward to the winter of 2017 when I caught a nasty stomach bug that pulled me right out of my cushy remission life into the depths of yet another flare. Now we’ve moved on to another injection called Simponi that I inject at home every 4 weeks, prednisone which leaves me with a nice bout of “moon face” and a flare that just won’t let up.

We aren’t sure what comes next, as I’ve exhausted many of my non surgical options. There is an option of removing my large colon all together, but the idea of it really freaks me out for lack of a better term. I have a follow up with my amazing gastroenterologist next Friday and hopefully we can come up with some sort of plan. For now, I am just trying to focus on summer fun with my boys.

 

blessings,

erika