Crohn's, Sugar Addiction and Avoiding Humira

Week One without Sugar

 

Day Before the Grand Sugar Give-up: I indulge in not one - but two large coconut milk French vanilla lattes. This is on top of baked goods and a decent size serving of pasta.  There's nothing like overindulging before denying yourself. Hmmm, I have a feeling I'm setting myself up for failure if I have to consume vast qualities of carbs and sugar before giving them up. Am I too attached?

So in the last three weeks I have had the pleasure of undergoing another colonoscopy, more bloodwork, and an appointment with my regular GI doctor, who I had piled expectations onto, only to come out of the clinic feeling hopelessly depressed and unheard. 

The scope showed that inflammation was down considerably- due to the steroids. Which I'm about done with prednisone, I wanted Entocort because it has way less side effects for me and for whatever reason Dr. V, we'll call her, would not prescribe them for me. She was willing to write a prescription for everything and anything else but not what I asked for. I'm not sure why. But the side effects are driving me insane. My face is so puffy and moon faced, I don't even want to leave the house.

The scope also showed I had a mass of gross looking tissue all piled up in the area between my large and small intestine, which she snipped for a biopsy. This caused quite a bit of bleeding and I was about ready to go back into the doctor that night, but luckily it stopped. But the procedure this time wore me out and my body felt exhausted- on the inside. Deep inside. 

My blood work was showing improvements in hormone levels, iron levels, and inflammation markers were vastly improved- almost normal. But again, due to the steroids- what happens when I go off the prednisone? 

I had my appointment with Dr. M, we'll call him, and right away I knew he had talked to the other doctor and had already agreed on a plan for care, forget what I want. He wants me on the biologics, - end of story. I mentioned all my concerns and this is how the conversation went. 

"What about the side effects? Cancer?" I asked. 

"We've only seen cancer in a certain age bracket, young men between 20-30, also taking another immunosuppressant. Doesn't effect other age groups." He said.

What? "Well, I've been on Crohn's forums, chat rooms. And there are a lot of complaints about biologics. Concerns like allergic reactions?"

"Oh, yes that. Well, here's the deal. Once you're on it, you can't go off. If you go off, your body will form antibodies against it and yes, you'll be allergic to it and won't be able to take it." 

Mmm, so my body will hate this drug so much, it wants to reject it as soon as it can? I'm feeling better already.

"What about the other side effects people complain about?" I ask, listing them- cancer, fatal fungal infections, an inability to fight infections, even just colds and flus. 

"You shouldn't be on the forums. They're just full of desperate people that the drug hasn't worked for- the people it does work for aren't on there." 

So ignore other people's experiences with it. Don't address my concerns.

"What about liver damage?" I ask, even though he's getting annoyed at my questions.

"Only a hand full of patients had died from liver damage while taking it." He assures me. 

I sigh. Aloud. Staring at him. I'm not feeling any more confident about taking these medications. It's my past history. I react to everything. My grandma reacts to everything. It's in the genes. I'm not sure why. Perhaps it has to do with my messed up immune system. 

"In your professional experience, how many of your patients do you feel like benefit from this medication?" I ask.

He pauses for a second and then answers. "I would say 7 out of 10 see good results."

I nod, it's not perfect odds but better than I thought. Then he keeps talking. "Well, at least 6 out of 10 of my patients benefit from it."

All right, my odds just went down. To almost 50 percent. And why is he changing his statistics? 

Then we start talking cost. How much is this ghastly drug?

Only around $12000 a year. For the rest of your life. 

I think I would have swoon right there if I wasn't feeling so numb by this point. I certainty was biting the inside of my cheek to keep from crying. 

"How much?" I choke out. 

"Well, it's a shot at home, twice a month and each shot is at least $500." This is for Humira. Since I lost disability, I have no insurance. If I get on Hero Hottie's plan, this is the drug I am required by the insurance to try first out of all the biologics. So now my drug choices are being dictated to me by a paper pusher. 

"I have a $5000 deductible with my husband's insurance." I said, trying to wrap my mind around such an expensive medication. 

"Well, that's better than $12000." The doctor assures me with a smile. 

No, it's not. Not in my financial world. 

I agree to  blood work to make sure I don't have TB or hepatitis, because apparently if I do and I take a biologic, it can kill me. And in a month the nurse is going to call me and see what I've decided. This gives me time to figure out insurance, finances and such. I can also apply for the financial aid from the drug company.

But how can I commit to a drug for a lifetime? At that expense. Damn colon. It needs to behave.

So I think. And I ponder. And I cry. I cry in lattes, and glasses of wine, and I scream at God for a burning bush. 

And then I come upon the autoimmune paleo diet, that has been used successfully by some patients with Crohn's. No potatoes, no tomatoes, no sugar, no artificial anything, no grains and no lattes. 

And I think WHAT THE HELL, WHY NOT? 

The odds have to be just as good as the 6ish patients out of 10 or so, I'm the doctor making statistics up on the spot, chances anyway. I go to the forums again, sorry doc, and people's reactions to the diet are mixed. Some are on it and no drugs. Some have mixed it with drugs and find both work really well for them. And some said they couldn't stay away from the no-no list and the diet didn't work. 

Day One: I have bought garden worth of groceries for the week. Salad, veggies, some fruit, and sweet potatoes. When I bake potatoes for the family, I'll just throw a sweet potato in there for me. I'm ready to go. And the meals are delicious. 

Day Two: I dream about coffee and creamer, and wake up with a furious urge to drive to the store and buy some almond milk French vanilla creamer and drink it straight from the carton. Never mind it has 4 tsp of sugar for every serving. I NEED some sugar. I make some peppermint tea instead, say some prayers, and remind myself that I'm trying to find a more natural way to treat the Crohn's before I commit to, what I feel like is a drug of last resort. 

I start really reading labels. Calculating the amount of sugar in what I'm eating. What I'm feeding my family and I'm shocked. No wonder the sugar content is hidden in plain sight by listing it as grams instead of teaspoons or tablespoons. 4 grams of sugar is equal to 1 tsp.

The bottle of BBQ sauce I was using in the sloppy joes meal- I end up feeding my family 52 tsps. - yes, 52 teaspoons of sugar in one meal.

Yogurt: 4 -6 teaspoons of sugar per container

ketchup: 1 tsp sugar per 1 tablespoon

Wow, the sugar was adding up fast. No wonder I was addicted. No wonder my family was addicted to cookies and ice cream. Sugar just feeds on more sugar. 

Day Three: I'm taking a shower and using my pomegranate face scrub and it smells so sweet I start to think about eating it. Yes, eating my face scrub- in the shower. Okay, I just might be going crazy.

But not to get too personal, the bathroom part of the Crohn's is almost normal. What? I don't even know what this is suppose to be- but I don't run to the bathroom ten times a day and even the kids notice that I'm not desperately hurrying off to the bathroom in a madness of worry and frustration.

The doctor writes that "patient seems to understand" what he is telling her, in my medical records. I feel vaguely insulted, because I do understand- I'm just not happy with my options. I decide a third opinion in a big city might be worth the money and start to research for a doctor with a holistic approach to treating the Crohn's. 

Day Four: Baby Blueberry has kept me up and I have to function without coffee. But I can't, so I drink some. My Mom bakes cookies and I have three. But I pay later for my cheating. Perhaps the diet is working. I find some paleo cookies in the store made with almond flour and very, very little sugar. I buy one because they have chocolate in them. They're surprisingly good, if not overly sweet. And they settle well on the gut.

Day Five: Still find myself thinking about coffee creamer and lattes at odd points during the day. Suddenly I'm having trouble with my emotions. There is a lot of stress going on in my life at the moment, and without even realizing it- before I was handling my emotions by drinking more sugary creamer. Now I couldn't, and the emotions were much sharper, more painful, like barbs on a wire. I knew I had a habit to eat my emotions but I didn't realize it was this bad. 

I doubt my plan. What if I'm wrong and the doctor is right? What if what I need to do is take the medication and call it good. I have a dream that I'm looking at things from the wrong perceptive, but that doesn't tell me what is the wrong way. 

Day 6: I have never had this much control, even when I was in remissions. I'm starting to lose weight, which I desperately needed to do. The steroids had messed with my appetite and I had gained 5 pounds from taking them, except I was already overweight to begin with. Pasta and rice is starting to lose their loudness. I'm not even missing them. The lattes, well, that's another story. Even Baby Blueberry isn't consuming too many cookies.

I firmly decide that I'm experiencing something totally different in the state of my Crohn's on this diet and decide that I will continue with it, until either it's not working, or I get a third opinion and they can reassure me why taking the biologics would be my best bet. So I haven't decided against any drugs- I just going to try something else first. Besides, there is the fiancial aspect of the drugs, which I haven't figured out yet anyway. 

Day 7: The week was worse than I thought and better than I thought. I wonder how I can be so addicted to a food product. Because sugar is addicting. I'm still craving creamer- for the sweetness. But perhaps sugar is bad for you- it is processed and bleached. How can putting a bleached product in your body be good for you?

I decide to give it another week and see what happens. And I buy a bouquet of flowers for the kitchen instead of something sugary to snack on as a treat after grocery shopping.They are bright and beautiful and haven't gone to my thighs.

My Crohn's is Out to Kill Me

And I'm sure my Doctor is in on the Plot

Gibson knows exactly how I feel right now about my Crohn's and the doctor visits that result from flares up.  Actually he probably doesn't, but this photo of him represents how I feel on the inside about the Crohn's flaring up.

Depressed. (and just to clarify, should my readers start to worry about Gibson's sad state of affairs, he wants to live in the dog park. I think if we bought a house next door with a puppy gate and allowed him to come and go as he pleased- he would not be so pitiful appearing.)

Last summer or so the Crohn's started to flare. I wasn't completely surprised, as it seems like after my hormones settle back from my pregnancies and breastfeeding, the Crohn's decides to raise it's ugly head. But since I did so well with the Crohn's during my most recent pregnancy and I had over a year after birth without any major issues I was hoping that it wouldn't change. 

And then we started some serious weaning and I think the resulting hormones changes screwed me. That and I think my sugar addiction really plays a bigger part in the Crohn's than I realized, but more on that in a later blog.

For months I tried to get things under control, to no avail. My trips to the bathroom became more frequent, more painful, and more uncontrollable. There is nothing like being in your thirties and having little or no control over bodily functions. 

Since I didn't want a repeat of my last flare up, which nearly killed me. And when I say, nearly killed me, I seriously mean I almost DIED. I was dying. And dying is not a state of being I wish to be in anytime soon.

I decided it was time to see a GI doctor. 

And because there is only one small clinic of GI doctors for the entire Western half of our state, there was nearly a three month wait to get in and see...

the PA? 

All right. I will take whatever appointment I can get and in the meanwhile, I will watch my flare up get worse.

A long wait later...I finally had my first appointment with a PA that I had before in their urgent care. Great PA in urgent care. Had just moved to the GI department and had spent the night reading my case file. Also did not know a lot about Crohn's yet.

I have to give her credit there, learning about my case before the appt. I'm sure I didn't make interesting reading. Anyone want help getting to sleep, read my tome of medical records. It's a dry and boring read, except for the parts where patient tends to not listen to the doctors.Those parts are exciting. 

Anyway, I wanted some steroids. Entocort. To be exact. 

But first, we have to run tests.

And tests. And more tests. Did I tell you that doctors like to order tests? 

Bloodwork. Colonscopy. And MRI with barium. (Mmm, two containers of barium please. Can I take that shit home and drink it for fun? It's just so good and tasty. Oh, and I hope I don't glow in the dark afterwards.) 

So two weeks to wait for a scope. If you haven't had a camera stuck up your ass before, you should definitely try it. First the process of having to empty your bowels by drinking a gallon of chemicals- which will plug up your kitchen sink should you spit it out) and then having to spend hours and hours on the toilet- is an experience no one should miss. 

And then having to go to the clinic with a raw and sore ass and allowing complete strangers to run a camera up your intestines is worthy of a blog. Just kidding, I will not go into details and I have to say all my nurses were caring and compassionate, but there is a vulnerability to having medical procedures done, regardless of how well taken care of you are. Obviously, nurses with empathy make the experience bearable. 

And Hero Hottie was waiting to bust me out of there as soon as I was awake.

The colonscopy did not go well. The doctor couldn't get pass a section of intestine because of how swollen it was. 

Bummer. 

Can I put my clothes on now? Hospital gowns just aren't stylish. 

Now, you need a MRI with barium so we can see the rest of your intestines. 

Another two weeks of waiting for an appointment. 

Then another two weeks waiting for a follow up appointment with the...PA?

With the PA again? Not even the doctor? 

And the paperwork the one doctor sent me said something totally different than what the other doctor told the PA was wrong with my large intestine. Off the same MRI results. Really? 

So here I am weeks and months into a flare without medication and I'm finally at the appointment where I should get something. 

And the doctor and I have a mild disagreement, through the PA, over how to treat the Crohn's. She wants me to go right onto biologics and I'm saying...

NO. 

But there are limited options on how to treat Crohn's. The best we can offer you are drugs with a list of side effects that include but aren't limited to...

deadly allergic reactions

cancer

fatal fungal infections

TB

fatal brain infections

suppressed immune system

Mmm. Death and cancer. Plus thousands a dollars a treatment.

I don't know if I ever mentioned this but I hate Crohn's. 

And of course I have to ask myself, perhaps these are my best options. Perhaps I just need to do the biologics and hope for the best. I certainty don't need the Crohn's flaring into complications like I had last time.

Fistulas. Hell. Massive infection. Hell. 

But I don't react well to most medicines, do I really think I'm going to respond well to a class of medications that have more people complaining on Crohn's forums than touting praises? No. 

So I state that I want steroids, since that has worked in the past. If those don't work, than we can discuss other options.

The doctor has told the PA to say NO to everything except the biologics. She wants me on biologics. The PA can't just prescribe me the steroids, she has to have permission and so she will have to talk to the doctor when she's back in the clinic and call me.

Another two days and I still can't have anything to treat the Crohn's. There is nothing like waiting months to treat a flare up.

Two days later, and the PA is on the phone. The doctor will agree to prednisone if I agree to another scope in three months, followed by biologics. 

I want Entocort. It worked so well for me during my last flare up.

The PA puts me on hold to talk to the doctor who is in the same room, gets back on the phone, "Nope, she won't give you the Entocort." 

A mild disagreement occurs, in which the PA is working the middle, instead of the doctor getting on the phone with me and discussing the issues with me. 

But the doctor wouldn't bulge. A huge dose of prednisone with all it's glorious side effects. 

Crap. 

Why wouldn't the doctor prescribe me a drug that has worked for me in the past? Wouldn't you give a patient something that has worked? That has put their Crohn's in remission before? Wouldn't you at least try it? 

Instead, because I'm desperate for something to treat the flare, I start the heavy doses of steroids, watching my weight balloon, my face turn into a fat, jelly mess of water retention and puffiness, and noticing that it isn't doing much for the Crohn's symptoms. 

In the meantime I make an appointment with a different GI doctor that I have had in the past and tends to listen to my concerns better. It will only take three months to see him.

In the meantime, I have another scope and more bloodwork and a flare up that isn't correcting itself. 

All before I run out of insurance at the end of the month, because I also found out I no longer qualify for disability, even though I'm in a major flare-up. That seems ironic. 

That also means a huge cut in income every month.

Nothing like stress to make Crohn's worse. 

I'm pretty sure a beach in New Zealand would be the perfect cure. Or at least it should be. 

But because I can't end on such a note of negativity and doom- it's a fault of mine to be positive most of the time. On the outside. We can hide sadness on the inside- I think I hide my sadness in my gut.

Let's talk about what toddlers do? Hide their clay covered lizards under their crackers on their dinner plate. I nearly threw them out because I didn't see them at first. What thoughts go through a toddler's head as they hide toys under their food? I wish I knew.