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