Change in Perspective: This Is Not a Poop Disease

A few months ago, I was reading through a colitis forum. A poster who had struggled for years with medication and side-effects asked, "Anyone just say forget it, I’m done with the drugs and try and deal with it through diet and healthy living?"

A few responders said "diet and healthy living" worked, but their symptoms were mild. Several said they had tried, but regretted it because their condition deteriorated and they quickly returned to their medications. Most stressed "do what works best for you, but don't compromise your health." 

But one poster's response caught my eye:

"UC is not a GI disease. It is an autoimmune disease that primarily manifests in the colon. You cannot eat your way out of an autoimmune disease. Medications are essentially required with UC…like most autoimmune diseases."

It was if someone smacked me alongside the head.

From the beginning, I have thought, I have a poop disease.

I realize now, no, I don't. I have an autoimmune disease.  

Wow. How did I not see that? How does that change things? Does it change anything?

Well, yes. First, when someone asks about my health, I say, "I have ulcerative colitis, an autoimmune disease, where my immune system attacks my colon causing bleeding ulcers." Some people respond differently now, when they hear the words "autoimmune disease." They may not know what ulcerative colitis is, but they understand what "autoimmune disease" means.

Second, I am more diligent when it comes to, not just my health, but the health of those around me. If I'm sitting in a meeting and the person in front of me starts coughing, I waste no time masking up, protecting my body and its wonky immune system. Before, when I had a "poop" disease, I didn't give someone coughing much thought. (Except for grandkids. Don't get me wrong, I love my grandchildren, but young children are just brimming with cold and flu germs.)

Third, and this kind of goes with the first thing, people are more aware around me. Before, my "stomach problem" was not enough reason for someone feeling under the weather to avoid me. But knowing I have an autoimmune condition, if they have even slight symptoms of a cold or flu, they are more inclined to keep their distance.

Fourth, there are way more people living with an autoimmune condition verses ulcerative colitis. Therefore, that means there are more supportive and understanding people out there than I thought.

Fifth, and this may sound silly, but my self-narrative is better. Having an "autoimmune disease" feels so much better than having a "poop disease." Even if I have to occasionally wear a diaper. Seriously.

Over the years, I have had several "change in perspective" moments. It is like driving through a canyon, going over a hill, and having the whole valley suddenly appear before you in a beautiful, vast, vista view.

It often takes your breath away.  

So are those times when my perspective changes. And this is one of them.

Other Posts

 © Colitis Senioritis 2023

Update October 2023: My Brain Melts But My Body Stands

Insurance craziness

Well, this has been an interesting month for insurance. About two weeks before I ran out of Rinvoq, I called the specialty pharmacy to see if I had to initiate the next month's supply or if the pharmacy would automatically send it. They looked on their computer and said there was a problem with my insurance and I needed to call them. I did, and they said they never received authorization from my doctor. (This was despite the fact that I had a letter which said the insurance HAD okayed Rinvoq.) 

I had a routine doctor's appointment the next day, so while there, I told my doctor's assistant what they told me. She was not happy, as she said she had sent the authorization long ago. She faxed it again, and asked me to watch so I could witness the authorization being sent. She then asked me to call my insurance a few days later, which I did.

I spent hours going back and forth between Abbvie (the Rinvoq people), my insurance, and the pharmacy. I thought everything was worked out, including my being put on a program that reduced Rinvoq's very expensive price, which is what I thought was already in place.

However, days later, with only a week's worth of medication left, I received an email from the pharmacy saying I needed to contact them immediately. They said there was a problem with payment. So back to the phone I went. 

Over the course of three days, I spent hours on the phone, both talking to people and on hold. (Thank goodness for laptops! I was able to get much done on my laptop while on hold.) Again, I bounced between Abbvie and my insurance, ending with a lot of time talking to the specialty pharmacy people. Honestly, I don't know how people do it. I consider myself an intelligent person, but dealing with this situation was mind-boggling, mind-numbing, and brain-dissolving.

I was finally told that an escalation team would contact me the next day. I informed them I was going out of town and would be out of contact. I left on my trip fully expecting another round of hours-long phone calls when I returned. 

On returning home, my husband noticed a package on the porch. It was the Rinvoq. I was extremely relieved because I had run out of pills, but nervous because of the cost. I checked my email and there was a receipt for payment of the Rinvoq, and it was the lowered amount I thought I had been approved for before. I am grateful, but also befuddled.

So here we are.

I STILL don't know if my pharmacy will send the next month's supply out automatically or if I have to initiate it myself.

As this is October, I can say it. Be afraid. Be very afraid!

How I'm doing physically

When I started tapering down the budesonide, my stool went downhill. I hoped the Rinvoq would help, but after restarting it a month ago, I'm not seeing much improvement. My stomach still aches now and then, but not badly. I did have a small accident a few days ago, thankfully before I entered the garage as I was headed to the grocery store, so I was able to clean up first. If it had happened ten minutes later, I'd been in trouble.

There is good news. My husband and I unexpectedly received free tickets to a PGA tournament held within driving distance from our house. We spent two days there. We walked the entire course on the first day, and most of the course on the second. My body held up! I was able, mostly, to keep up with my in-very-good-shape spouse. There were lots of portable bathrooms all over the course, but in two days I only needed to use them once. I was extremely worried about the trip, both the driving part and the being on the golf course part, but it turned out quite well. And we did have fun.

However, because of going off Rinvoq for six weeks and not improving after getting back on, we'll see how I'm doing in two weeks. Just in time for one of my favorite holidays, Halloween. (Sigh.)

Next update: November 2023, On The Downhill Side (Not a Good Thing)

Previous update: September 2023, Can You Say Budesonide? (Not Really.)

Other Health Updates