Beware of Evil Twin, IBD

Crohnically Ill
Poster for Hemlock Grove,a Netflix original series

Poster for Hemlock Grove,a Netflix original series

For the most part, life is good. My family is happy and healthy; I have a great job; I’m working towards my life’s goals with cheerful perseverance. Generally I’m bubbly, full of energy, and love to laugh. But beware, because I suffer from a curse.

“You? Suffer from a curse? Surely not!”

Yes, it’s true. I’ve been cursed with an evil twin. She’s the exact opposite of me. No, not in a yin yang chi way. Take my friendly, lovely qualities, and she is the precise opposite. She hates laughing, hates people, hates physical contact, hates going out and despises physical activity!

“Do you have a mental illness? Who is this evil twin?”

Nope, no mental illness. My mind is perfectly sound. I suffer from IBD, and all of her complications conspire against me to make me someone I’m not. No, this is not your average “down” day or “bad mood.” (Although my kids believe I just prefer to stay in a constant state of negativity). When my body feels pain, fatigue, nausea, bloating, etc., I’m no longer myself. I’m a half version of me working double time to look normal, because I don’t feel the world should suffer the effects of my ill temper. Yet I tend to fail miserably, and IBD has her way with me.

No, I do not pass all of the blame for my behavior on my evil twin, although she deserves to carry some of it. I’m still in charge of me, and I can control how I behave around others, even when sick.

But here’s the kicker. I don’t stress that I have a mental illness, but I do worry that IBD has managed to alter my brain chemistry. Disclaimer- I am no scientist.

When I come off the pain, I don’t just feel normal. I feel ten times as ready to take on the world.  My mood soars and I go into overdrive, ready to play catch up on all that I’ve missed in life. If this goes on for an extended period of time, with no pain, I go back to the normal me. I’m a low key, but still active and social kinda gal. If, however, the pain returns, I morph into a “depressed” person. Not clinically, but I’m no longer the social, happy me when I’m sick.

So if you’re ever around and you notice my evil twin rearing her ugly head, I suggest you back away slowly and run for your life.

And how about you, belly brigade? How do you cope with your evil twin?

The Trouble with Scar Tissue: Part 3

Crohnically Ill
Come to visit in gowns and gloves

Come to visit in gowns and gloves

This time I choose not to play the hero and accept the wheelchair. As I’m rolled in, I don’t hide how miserable I am. Past experiences have taught me that looking as dire as I feel gets me faster attention than holding it all in and waiting like a good little girl. No, not if I’m at risk for my bowels perforating! I’ve been there before and nearly died. No way am I sitting back if that’s happening again.

A different GI doctor is on call now, and he makes all the difference. He orders me medicine and a CT scan immediately. Sipping on the contrast, I shiver under the blankets, cold and pain playing tug of war with my body. The doctor stays by my side for most of the night, pouring over my chart and talking to me about Crohn’s, asking me questions.

“You seem to know a lot about your disease. That’s good that you inform yourself.”

Why thank you for noticing! I want to say aloud…but my brain is shot and communication skills is the first thing to go in these cases. He talks to me about how they will find a cure, but it’s all mathematical, marking the microbiomes and figuring out the right calculations of bacteria needed to eliminate the autoimmune response. I’ve been reading up on the microbiomes and genetic marker research being done by CCFA, and I think I manage to mumble some conversational piece of my own. He sits by my side, no longer pouring over the chart, but looks worried for me. I realize later he didn’t have to spend so much time in my room…

Meanwhile my dad sleeps in the most awkward position in his chair-head bent and leaning against a steel medicine cabinet. He, too, won’t leave my side until the CT scan results are in.

His other uncomfortable position. And he still went to work the next morning...

His other uncomfortable position. And he still went to work the next morning…

Finally it’s time to wheel me away for the test, the movement inciting more pain, which of course starts my awkward shaking thing. The lady wheeling me keeps asking if I’m cold. How many people do I have to explain to that I’m just a freak and shake uncontrollably when in pain?

The tech is a pleasant guy, all smiles and jokes and questions. Why is he so perky at three am? That should be illegal. Still, his warmth is nice to be around. He compliments my wedding rings, because he has excellent taste, and talks to me about his wife. What he said about her I could not tell you, I just remember her being mentioned which put me at ease. You would be surprised how many times I’ve been hit on at the hospital. No joke. One time I was puking my guts out while being wheeled to radiology, and the guy asked me out on a date! I suppose that IS the highest of ego-boosts…but it’s really awkward to turn a man down whilst chucking up dinner.

I manage to sleep for a while until the results come in. NO PERFORATION! Yay! But the trauma to the area from the dilation is causing all my grief and the very concerned doctor wants to admit me for observation. I’m good with that, because I still can’t stand without feeling like collapsing.

Impressive, no?

Impressive, no?

Someone comes to wheel me away to the sixth floor, my old and dear friend. The lady is new and gets lost on her way to the elevators, slinging me around each time she turns to find her place. The constant turning makes my sensitive tummy full on nauseated, and I’m gonna hurl. For sure.

We make it to my room, puke free, but transferring to the new bed is the straw that erupts my stomach. Fortunately I’ve been gripping the same puke bag all night, so I emptied the contrast (what was left) in there. The nurse got me a new bag (thank God!) and some more nausea meds.

The rest of the morning blurs by, with nurses and techs and medical teams in and out, interrupting my sleep. I forgot how impossible it is to get any rest at the hospital. Through my exhausted haze, I register that the doctors want me to try eating, walking, and they want a stool sample to test for C Diff as a precaution. Joy.

My GI Dr. also stops by in the late morning, but at this point I’m so ragged I can barely hold a conversation. He relates that it’s difficult to know where the “line” is for someone when dilating. Would I have had a reaction if he had only gone to 15mm? Who knows? But in the long run this procedure will be beneficial. Of course as soon as he leaves the room it occurs to me to ask “well why didn’t you bloody do 15 instead of 18?!” Good ‘ol sleep deprivation let’s me come up with responses five minutes too late.

Nurses encourage me to eat, but I have no appetite. My mom brings the kids, and they have to dress up in gowns and gloves in case I have C Diff. Really? I feel dangerous, in a mischievous sort of way.

My dad makes it by before heading to work, and of course my best friend Sydney comes bearing books and amusing conversation I don’t have to donate to if I don’t wish. I order mashed potatoes, which come on a sad looking tray with a wilted leaf and an old tomato. Oh my.

So sad. Like why even try?

So sad. Like why even try?

The doctors put me on oral pain meds, which work much better than IV, and I’m suddenly invigorated enough to walk. My mom and the kids are back, and along with Sydney we all take a stroll through the hallway.

Once everyone leaves, I manage to get some much needed sleep. At two am, I wake up to my husband and second oldest stepson walking in.

“What are you guys doing here?” I can’t believe it. I thought Mike had to work, and since it’s his new job I knew he wouldn’t want to rock the boat.

“I told work you’re in the hospital and came down. I brought TJ so he can drive you back up when you get out.”

Well that’s thoughtful. We snooze some more, until a nurse comes in to draw blood for testing. She pokes me with the needle, but misses the vein. Instead of taking it out, she moves it around, digging in my arm over and over until Mike gets that look on his face which means someone is getting chewed out for using his wife as a pin cushion. We’ve been here before. I sigh, hoping she gives up before my husband rips her head off. Actually, I’m hoping she gives up before I rip her head off because I’m sick of having a needle twisted into my arm. She takes it out, shaking her head and assuring me she won’t poke me again. Whew!

When the morning rounds stop by, I beg for some laxatives as I haven’t pooped in three days now (two? Who knows). So much for testing for C Diff. They order milk of magnesia, a gentle stool softner, and prepare discharge papers since I’m at least holding down food and walking around. The oral pain meds have really done the trick.

Just before discharge, I finally poop and feel so much better! Refusing to wait for a wheelchair, I walk on out with my family to head home. I have a long recovery ahead of me, after which I get to do this again in September. With a high probability that I will have this same reaction. Until the next time, Ashley Tower…

The Trouble with Scar Tissue: Part 2

Uncategorized

“It’s possible, but it’s a very slight chance, that your bowel could perforate from the procedure. It’s your decision, but if you feel you need to come in, we can do an x-ray to check.”

Don’t talk to me about slight chances. I’m usually not so lucky.

“Well, it really hurts.”

“As bad as before your procedure?”

“No…it hurts to even sit or stand up.” My voice cracks at the end. I’m such a wuss.

“You know your body, so come in if you think you need to. Give the ER my name when you do.”

My mom rushes me in. I try to hold it together, for her and myself. It’s ok. I’m sure you’re just really sore and nothing major is wrong. I try not to think about the possibility of a bowel leak. Not again. Please not again. I don’t wanna die.

The hospital guard offers me a wheelchair, but like the masochistic idiot that I am, I walk to the ER. Hunched over like a granny and wincing all the way. I lean on the counter, fumbling to hand over my ID cards and explain my situation. The nurse looks bored. My mom asks for a chair, and the nurse points me to a room. I lie down, hoping someone will come soon. It’s an ER, so no one does.

My body shakes uncontrollably. Great. Forgot about this lovely side effect I have to pain. When it gets really bad, I shiver like my dog in a lightning storm. Paramedics bring in a patient on a stretcher, and I hear them say “cancer patient.” At least I don’t have cancer, I half-heartedly tell myself through violent shakes which make the knives in my stomach pierce deeper. Could be worse. From the hacking and groaning going on down the hall, I know that’s true.

A PA comes in, and I explain my symptoms. No fever, no vomiting, which is a good sign. I hope to get some pain relief and go home. Wake up in the morning like this never happened. He says he will get me some pain meds and order an x-ray. I give him the name of the GI on call I spoke to. He exits the room, and I try to hang in there. Someone should be in soon.

No one is ever in soon. Why do I tell myself this nonsense?! Eventually an attractive Filipino nurse walks in, sunglasses on her head (it’s 9 in the evening), eyes darting about like a lost little puppy. “If I seem lost, it’s because I’ve never worked in this ER before. I usually work in the ER at the main hospital.” Great. She writes down my info on a paper towel since she can’t figure out how to put it into the computer. Inspiring more and more confidence. My mother, as always, is sympathetic. “It’s so hard to come to a new place.” I’m sure it is. Just not in the understanding mood at the moment.

She leaves, again, for a while. Will I ever get pain relief? I have to pee. Moving, at all, makes the pain worse. I ease out of bed, hobble down to the restroom, where I struggle to urinate as using any muscles in my lower abdomen burns like the dickens. By the time I make it back, I’m full on shaking and twitching. The nurse comes in to place the IV. As she sets up her needle, gauze, and wipes, she stops to take a look at her epileptic patient. (sorry, too far with the analogies?) Her eyes widen. “Are you scared or are you cold?”

“I’mmmm….in…pain. I..get…li..like this wh when I..hurt.”

My mom lifts up my shirt to show off my impressive scars. “Look at what she’s been through. You think she would be scared of a needle?”

I love my mom. They get medicine into my system, and my body sinks from the weight of it, and my shaking stills. It’s still a heavy amount of pain, but I can manage now.

I get the x-rays, where I have to stand and lie down. I start shaking all over again. I forgot how short lived those IV pain meds are. They give me more, but it turns my stomach with nausea. The results come back negative, and they prepare to release me. I’m no better pain wise. As my mom goes to get the car, I start vomiting. They tell me to come back if I have fever of 104 and/or worse vomiting.

“104? If we wait that long you’ll be dead,” my mom says. Very comforting.

My kids meet me at the car, helping me walk into the house and up the stairs. My mom protests that I stay downstairs, but I’m stubborn. I crawl into bed, unable to hide the tears and trembling from my children. I hate that they have to see me like this. I hate that everyone doesn’t know how to help, because they can’t help. There is nothing to be done. I don’t want them to watch me suffer.

A few hours later, the pain and vomiting increasing, we check my temperature. 101.8. Heck no I’m not waiting for it to get to 104! Back to the hospital I go…