The Guilt of Failing Meds

Let’s talk about an uncomfortable topic today: when medications fail you.. rather when YOU failed medications.

There is much guilt, anger, and denial that is not talked about enough, and I hope that through this piece, we can come together and speak about what isn’t spoken about enough: failure. When we were growing up, we were taught that from all mistakes, come lessons. We learn, we gain wisdom, and we grow. But what about when the failures aren’t our fault?

Let’s talk about failing a medication that was supposed to be “one of the greatest medications to treat “disease A” and you immediately fail it. What then? There is a sense of hopelessness that rushes over you of guilt that maybe you are that patient. The patient who doesn’t respond to any meds. “What did I do? Am I at fault? Could I or should I have done something that could have prevented this?”

You are not your prescription failures

(You’re simply a unicorn that is hard to treat because your genes are simply magic).

I’m going to be very transparent in this article. I’m TERRIFIED I will fail this next biologic. There is a certain guilt that resembles shame when you fail a very expensive medication. You are forced to put all your eggs in one basket. It’s not talked about enough.

After you fail all oral medications available to you & realize that the remainder of your life you’re expected to take these drugs to have ANY quality of life & to control active disease. There’s a certain emptiness. And a LOT of guilt.

Fear of failing

There is so much energy (doctors appts, procedures, weekly labs) that go unseen, but the most invisible is FEAR. fear of failing. Time after time. GUILT. That you spend so much money per year trialing new drugs to improve quality of life. No room for error for many of us.

After SO many failed attempts, I don’t blame patients for feeling self-shame, because I’ve been there. I’m there now. I cry when I think of finding out I had RA after becoming allergic to Humira – a blessing in disguise. I cry when I think about the number of attempts we gave Humira.

 

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Photo by Pixabay on Pexels.com

Read the rest in the original article here:https://inflammatoryboweldisease.net/living/guilt-failing-meds/

Before I Got Sick

The following is a piece that would simply not exist without the knowledge you have all given to me. I dedicate these words to all of the generous souls who have let me inside of their personal worlds. On the good days… and on the worst days of their lives. This is my love letter to all of the people who have made an impact on my personal journey.

Before I got sick

I didn’t understand what health was. I had no idea what Crohn’s disease or ulcerative colitis was. I took what I had for granted – I never knew any different. “Health is never valued until sickness comes.” It’s true. Until you get an eye-opening experience or diagnosis, you tend to take things for granted.

I didn’t know what the word “remission” meant, other than remission from cancer. But Remission is real. I capitalize Remission because it is just as more important as any disease. But remission is REAL, and people experience it. I will, too.

I could spend the night at someone else’s house without worrying I would wake up in a panic, sick to my stomach.

I never had to worry about pulling over on the highway puking my guts out or keep an empty grocery bag handy in case I can’t stop going 70mph on the highway, but such is life living with GI diseases.

I didn’t feel guilty about canceling plans.

I had no idea there was a thing called “moonface”.

I could run competitively but chose not to. Looking back, I’m upset with myself that I was not more health-conscious. I’m aware I didn’t do this to myself, but after I put my health (or lack of) into perspective, it was clear that I wasn’t doing what I was capable of doing.

I had no excuse not to eat my vegetables. Now that I have IBD, it’s not even a choice.

I didn’t have to depend on people: my doctors, my parents, my support system. Helplessness sucks. I now depend on doctors offices, medications, and visits to the ER to keep me out of surgeries. To keep me alive.

I didn’t know I would have such terrible luck with incontinence at a young age.

I had no idea my future would be in the care of others. On my journey to wellness, I discovered my heart was in helping others.

I didn’t know how much fight I had in me.

I never asked for help. Luckily, and thank god, I have a support system that knows when I do need help and they go out of their way to help me with daily tasks I’m not always able to do myself.

I didn’t know what real friends were. Anyone with a chronic illness has a certain “you learn who your friends are” opinion.

I didn’t know that I would like take a form of chemotherapy the rest of my life. Before I got sick, I didn’t know that chemo was used for anything else other than cancer.

BUT..

Because I have Crohn’s disease

I have a backbone. I have a say in my treatment. I have learned what it means to be an advocate for myself and give others the tools required to become their own as well.

I am educated. I loved learning about epidemiology in college, looking at the intestinal lining underneath a microscope, memorizing all of the medical terminologies. It’s something I could relate to in a time when I didn’t relate to much around me.

It took all of me to get through 5 years of college, but 2 degrees later, here I am. Despite all of the setbacks, IVs, injections, hospitalizations, and a surgery in my sophomore year.

I treat my good days like gold. I max them out when they happen. Because I have IBD, I know what a bad day can be.

I am a virtual roadmap to the nearest restroom at all times.

I have learned to treasure [uninterrupted] sleep. As a kid, I never slept. as an adult, I envy others who are able to sleep “regularly” in an unhealthy way.

I believe in the healing power of pet therapy.

I’m motivated by the smallest challenges in my everyday life.

I smile more. Generally, I’m 300% happier after accepting struggles and claiming small victories that may just be making it up a set of stairs successfully with no injuries!

Setbacks can be a slingshot forward.

I have the ability to help others struggling with IBD around the world.

I hold family tighter.

I matured faster than those around me in certain aspects of my life. I will likely be a child for the rest of my life in many ways, as sometimes it helps to cope living freely, lightly, and with child-like humor. Sometimes, it’s fun to be a kid and feel disease-free again.

I love my body more today than I did yesterday. I see scars and stretch marks and reflect on the milestones that have made up my life.

 

 

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Read the rest of my article here: Before I Got Sick

What Types of Doctors Should I See with IBD?

For many of us living with IBD, it seems like our care team is bigger than our immediate families. But there are very important reasons to have these specialists on our teams. Do you know which doctors you should have on your team and why? Below we give a few examples of why it’s important and how they can each individually help us as patients to live a successful and proactive life as a patient.

Ophthalmologist

There are many complications that may arise in patients with IBD. One obvious symptom of something going wrong with inflammation in our bodies is when our eyes look irritated, red and glossy. It can be an obvious sign of inflammation for those that look for it. But did you know that there are some eye manifestations that could cause permanent damage if a professional does not catch it in time? When your regular eye doctor examines you and finds out you have an immune-mediated disease, he/she will likely recommend a good Ophthalmologist that can help oversee your case. In certain cases, like Uveitis or Scleritis, it’s important to see your specialist as soon as possible to prevent further damage, like vision loss or impairment.

Urologist

Often times, a Urologist may come into the picture when we have trouble emptying our bladders or when certain circumstances pop up, like fistulas. Because of the complexity of these manifestations, a Urologist may order certain types of therapies to help with the course of your disease. Many women experience muscle weakness and may require pelvic floor therapy. Therapies for IBD, especially in women, have come a very long way since even 15-20 years ago. A Urologist may help you strengthen certain muscles that have atrophied or have been affected by surgeries or by the complex nature of the course that is IBD. Again, IBD is different in many patients and you may never need to see a Urologist.

Endocrinologist

There are many times patients with IBD find themselves at an Endocrinologist. Because of the side effects prednisone has, GI’s may be quick to send a patient who is in remission but still experiences fatigue and unusual symptoms. A quick check of the thyroid provides each doctor a baseline on how you may be reacting to certain medications and also helps rule out any additional medication anomalies dealing with the Endocrine system, in addition to thyroid issues.

High risk OBGYN

This is important especially for patients who want to start a family, in addition to female patients who are affected by IBD in their reproductive parts, like Crohn’s Disease of the Vulva. Seeing someone who knows what they are looking at is extremely important. Ask your GI if they can give you a referral to someone who can help manage your case.

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Read the rest of the article here: What Doctors Should I See?

some days are better than others

there’s been some silence over the last few weeks on my part. it’s not that i dont have anything particularly special to say.. the truth is, it’s hard to post something positive when it’s not truly how im feeling and it’s not the state i’ve been living in.

i dont want to broadcast only and bring others down, when all small victories should be celebrated. but that’s just not the case and lately it’s very hard to be transparent. i desperately try to balance out my posts to encourage and help others, but sometimes i need to back away and just decompress, because going quiet is the only way i know how to cope. i know that’s not the greatest way to handle things, but we’re working on getting me more stable in that way.

a few weeks ago, after my endoscopy, when i had my esophagus stretched in quite a few places to help me swallow. it helped for about 2-3 days, but again i started having awful choking and vomiting episodes. when i would try to eat solid food, i would chew, chew, chew and still choke. and when things would go down, they would come up about an hour later – liquids included.

so i had a follow up with my GI team and they said that in my biopsies, things looked okay but my muscles were having a very hard time doing their job from my esophagus to my stomach, thus the nausea and vomiting. what i wasn’t expecting to hear was that i would be spending more months with my picc line in than we had originally planned. and now, i am on a strict blended and juiced diet until my tract sees massive improvements.

here is where my guilt steps in.. another summer spent not eating food. sticking to the same frozen foods, blended and or steamed and drinking all of my calories in order to try to get my muscles functioning enough to eat more of a solid food diet vs. soft mechanical or pureed diet.

immediately, you think of all the things you can’t do, right? mainly because of my central line. ive recently fought many infections, one in my face. because im constantly massively dehydrated, im still on 3-4 IV infusions per week because my body just cant keep up with fluid intake. with and increase in temperature here in WI lately, and more combos of antibiotics, i can’t go out in the sun for lengths of time. i dehydrate so much quicker in this weather and im truly exhausted but 12pm. i sleep from 12-15 hours a night right now because my body is so exhausted. this is quite the opposite of my norm of 3-4 hours of sleep a night.

because of my picc line, i cant get it wet, which is no easy task. by the time im ready for a shower, im exhausted and spent most of my time sitting in the shower on a chair. picc lines also mean no pool and lake time. im desperately wishing my current therapies will get me back on track in order to have my line gone by mid july to celebrate my birthday, but that doesn’t seem to be the case. for the time being, ill continue therapies via IV for the next 2 months and see where things have improved with my esophagus & gut.

right now, im traveling to the hospital for treatments and various appointments 3-5x a week. the weeks ive been there 5 days.. they get long. im thankful that i have support that sends notes of support. i have been blessed the past year, as i approach my next birthday i really have faith things will be better than they’ve ever been.

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