Mesalamine

I got the most wonderful letter from insurance last week which was that they would not be covering my Pentasa medication anymore.

My Pentasa medication that one of my resolutions was to take faithfully every single day, 4x a day, 8 freaking pills.

To pat myself on the back, I have done that super awesomely for the last 8 weeks!

I’m “supposed” to get a colonoscopy every year since I’m “under-treated” and they want to “watch me” closely. But I have a sweet deal with my nurse who basically let’s me hang out and do whatever I want to do.

But I have guilt. And feel responsible for watching my health. And feel super scared after watching Sam go through all the shit she went through.

I mentioned to Ang at dinner last week that I needed to call so after I say things out loud to other people I feel compelled to keep my word so I called on Friday to make an appt. Shocker, it took THREE minutes, and they made me a tele-appt for today, a national holiday.

Making those doctors work on a holiday, so mean. But it worked for me!

Except now I’m sitting here sobbing. (Thanks period, for taking your sweet time to show up and make me so freaking emotional.) J just got to listen to me completely unravel. Which was probably good for us but I’m not sure if it made me feel any better. I’m hoping writing this out will help me process it.

I started Pentasa in July of 2011. Yes, I adore my blog for being my diary.

Almost 15 freaking years on this thing. And it seems like it did initially help me. Although what really helped was starting the SCD diet a full year later in 2012.

I have had many ups and down over this diet. I’m not 100% compliant.

I’ve had 4 colonoscopies over the last 15 years which all have gotten progressively better. The last one having, “Diffuse erythema and erosion were noted in the distal terminal ileum and IC valve” and “patchy scarring” and what my doctor was so completely awed by, was that my pathology on ALL sections was completely normal. Every biopsy they took from inside, all of them, was normal everywhere.

So I don’t have any active ulcers anywhere, just redness or “erosion”.

And Pentasa is a very old drug (1990’s) that was called “Tylenol for Crohn’s Disease” by my doctor in 2011 because he didn’t want to “take a hammer” when something smaller could have worked.

But it doesn’t target the terminal ileum. It targets the lining of the bowl, the colon.

But if I went off of it, my doctors may have fired me. I didn’t want to press it.

But knowing after doing SO much research for Sam the last year… that I have erosion in my terminal ileum, my Pentasa will no longer be covered by my insurance because it’s so damn old (and also expensive – $800 a month), I should probably make a better decision for my health.

Moving to the generic would be a different pill – only two times a day! So it would be releasing differently. And my nurse had to call me back to tell me – as she was writing her notes – that if I would see any issues from it, it would probably be 3 months later when all the medication stopped being active in my body.

What Pentasa has probably helped me with is less bowel movements, slightly better in inflammation, and helped me feel better all those years ago.

But it’s can’t heal in the terminal ileum and can’t stop progression of the immune disease.

But I want to argue with myself that it’s not progressing. It’s stable and getting slightly better each time.

But, it’s not perfect. And having this sit and simmer is probably not the best idea.

And starting the generic version of mesalamine that doesn’t even target that area is… it sounds a little weird.

It is being a buffer though.

But probably not the best buffer.

So I’m going to get another colonoscopy, redo all my labs, and see what’s happening.

But I’m still SO SAD.

I’ve worked so hard for 15 years to control this.

And yet I’ve been given all this time to process it, to work through it, and to NOT have to show up to the hospital and have emergency surgery like Sam did.

I have the choice right now to protect the next 15 years.

But I think I have to cry a lot before I get to that place.

I’m looking over all the newer options right now. I’m sure my doctor will have a recommendation after I get my colonoscopy but never hurts to research. There are a bunch of newer and amazing options that don’t have the bad rap that Humira had 15 years ago.

I don’t have to stop my diet. My diet has protected me so wonderfully all these years. And I truly believe that with the rise in percentage increase of colorectal cancer and Crohn’s disease over the last 30 years, diet plays a role. As does lifestyle and the environment, etc.

I feel like it’s not a huge fear of meds. I’ve seen Sam on these meds and feel fine. So that really has helped me feel better. And there are at least 3 different types of meds (anti-tfn, gut selective, or il-23 blockers) that I can start with. I just still hate it.

I am so sensitive. I am allergic to the most random things. Just like I found out last month that castor oil causes my eyelids so swell up and look like a marshmallow girl, I’m afraid that i’m going to start one of these and immediately break out into hives or something worse.

And some of it is probably the loss of control.

And grieving. So much grieving of having this disease. Of the identify I’ve built around it.

I just need some more time to process it.

Ugh.

At least I get to go see an incredibly sad movie in 30 minutes with the girls so I can be completely justified in crying more.

And I have my colonoscopy scheduled for next month now. Sigh.

Now I have to choose how obsessive i want to be in keeping up with this medication 4x a day. I’ve only missed ONE day – missed taking one of my scheduled pills at 4pm – in the last 8 weeks!

Blah.

Maybe I feel a little better now. I’m going to be fine.

But now I need to replace my kleenex box.