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.