Rashes & Welts

I saw my PCP today. She thinks that the rash and welts that I have are probably related to my IBD and extraintestional manifestations of it. But according to the National Library of Health, psoriasis is an extraintestinal manifestation of IBD. So, who knows what exactly is going on.

Now I’m on two different strengths of topical steroids to help control the rash and welts. I’m also waiting on getting a referral to see a dermatologist. My PCP said that they’re normally booked out several months in advance. Which sucks. My PCP said that I can cancel the appointment if we get it under control before that but I have a feeling that it won’t be. And I have no interest in having to constantly be putting steroids on my skin.

It’s also a bit depressing to think about. My invisible illness isn’t so invisible anymore. The welts are pretty painful and there was a point where they were making me look like a junkie. And where most of them are showing up is of course on my arm with my new tattoo. I had a new one show up on my collar bone today. And one on my elbow yesterday.

I really hope that they don’t show up on my face or hands. That would be horrible. My hands especially since I work with my hands. I need my hands to make a living.

What I really want right now is to go more than 6 months without something being wrong with me. The last year has been really rough. I got diagnosed with an incurable autoimmune disease. I’ve been hospitalized because of a severe reaction to a medication. Had two different colonoscopies. I was on steroids for 10 months.

I’ve been so exhausted that it was all I could do to get through work. I couldn’t keep up with the chores around the house or have enough energy to go grocery shopping. Luckily a friend came over and helped me clean my house some. I don’t know what I would of done without her.

I’ve been on 5 different medications to treat my IBD and the only one that is working so far(besides steroids) is Humira. I’ve had so many blood draws done and had iron deficiency anemia at one point. Now I have a vitamin D deficiency. I’ve seen three different GI doctors and my current one is now three hours away. I’ve had my diagnosis changed from Ulcerative Colitis to Indeterminate Colitis.

I’ve had to spend a few thousand dollars in medical bills this year along with taking time off of work. Luckily with work I have unlimited sick days but I can’t take off more than 3 in a row before I have to go on short term disability. But the amount in medical bills suck. And I probably won’t be able to really claim any of it on my taxes because of what the income to medical bill ratio is.

And then I’ve dealt with bouts of depression. Which isn’t fun either. There’s times that you get caught up in thinking that this is what you have to look forward to the rest of your life. Countless medications, bathroom trips, shitting yourself, chronic fatigue and constantly battling your body to just live your day to day live.

There’s days that all I want to do is just scream and cry but that won’t get me anywhere. The only thing I can keep doing is trying to take life a day at a time. Be Brave. And remind myself that I am not my disease, no matter how much I feel like I am.

Inflammatory Bowel Disease Isn’t Just About Pooping

IBD Isn't just pooping

“IBD just makes you poop your pants.”

Have you ever had someone tell you that? I have. It was a pretty frustrating(infuriating?) moment. Because IBD is so much more than just shitting.

Now, I can only talk about this from what I have experienced. Everyone with IBD experiences problems with IBD differently. My doctors don’t know which one I have. For now, I’m ok with this but I’m sure that at some point things will come to light as to which one I do have.

How is IBD more than pooping your pants?

It’s the urgency. It’s the fact that your body will let you know that you have literally two seconds to get to the bathroom or your going to be shitting yourself. IBD doesn’t care that you’re not near a bathroom. All your body knows is that it needs to go right fucking now and there isn’t any way to stop it. No matter how hard you try.

It’s the pain. It’s wanting to scream your lungs out because you hurt so much. It’s feeling like your intestines are trying to rip themselves from your body. It’s the fact that you don’t want to walk because the abdominal cramping is so bad and your ass is that raw. It’s the joint pain from either the medications that you’re taking or because it’s an extraintestinal manifestation of IBD.

It’s the dehydration. I’ve been so dehydrated that I’ve had to spend 3 days in the hospital and receive 10L of IV fluid to get back to where my fluid levels should of been. I was literally shitting myself to death. It took two weeks for me to go from a healthy 24 year old to a very sick person who lost 8 pounds in the span of two weeks. As fast as I was taking food and water in my body was sending it right back out.

It’s the fatigue. The fatigue can be the worst at times. You’re so exhausted from your body attacking itself. And from having iron deficiency anemia that it’s all you can do to get through work. Let alone get things around your house taken care of or go grocery shopping. You get exhausted after having a bowel movement. No matter how much ¬†sleep or rest you get, you’re still tired.

It’s the side effects of your medications. And let me tell you, those side effects can be terrifying. There are times the side effects of your medication are scarier than the disease itself. But, you have to decide whether those side effects are worth the risk or if you just want to continue to have your IBD run/ruin your life. There also aren’t a whole lot of medications to treat IBD. There are also times that people will find a medication that works(like Humira) and then build antibodies for it and then they have to find something else that works.

It’s the horror. I’ve seen stuff come out of my body that has terrified me. You know it’s not normal, but there’s nothing you can do about it. Seeing that stuff can start to make you feel kind of hopeless. You wonder if you’re ever going to get better.

It’s the depression. You realize that when you have this disease that you will be dealing with it for the rest of your life. This is what you get to look forward too. Yeah, you can be in remission, but you also feel like a ticking time bomb. You don’t know when your next flare is going to be or how bad is it going to be. You don’t know if your medications are going to fail or if your going to have such severe side effects that you have to stop taking them. You don’t know if your going to have to be hospitalized again. You don’t know if your IBD is going to get so severe that it requires surgery. ¬†All of these things weigh on you.

It’s being invisible. With IBD, you don’t look sick normally. Just because I look healthy doesn’t mean I am. I could be having a really bad day when it comes to symptoms but I might just look tired. It’s not obvious that this disease is wreaking my body. If I could show you what my colon looked like during my bad flares, I’m sure that things would be different.

It’s the weight fluctuations. This can go both ways. You can be gaining weight because your on Prednisone and it makes you hold onto water. Or you could be having so many bowel movements a day that your body can’t keep up digesting and absorbing the nutrition it needs and you start to lose weight. You can also lose weight from not being able to keep up with the fluid intake that your body needs while in an active flare.

These are the things that I deal with as someone who has Indeterminate Colitis. This is a look into my world and into my head. These are the things I deal with and think about on bad days. I do my best to not think about these things on my good days. But it’s always there. Lurking in the back of my mind.

On my good days, I do my best to hold onto the good. To enjoy life. Because I never know when things are going to take a turn for the worst.

Good News from the Insurance Company!

The old insurance I was under finally got everything reviewed and I now only owe the hospital several hundred dollars instead of several thousand! I’m pretty ecstatic about this. It’s a huge weight lifted off of my shoulders. I need to call the Prometheus lab tomorrow to see if they have received payment from my insurance company. I sure hope so!

I Am So Angry Right Now

I feel like raging against the world tonight. You try to get ahead in life and as soon as things start to look up life decides you need a good kick in the teeth. That’s pretty much been my night tonight. I finally got the bill from my hospital stay back in December and it turns out that I now owe the hospital several thousand dollars. On top of that lab test that I’m still appealing with the insurance company.

I’m so fucking mad that I have several thousand dollars owed in unpaid medical bills. Like are you fucking kidding me?! There are things that I wanted to do with my life and now I have another bill every month to deal with. I have to have it paid off in two years otherwise I have to take a loan out through the hospitals financial vendor. I’m going to be calling the insurance company tomorrow to ask them what the hell was going on. Hopefully this is just a terrible mistake but very very very few things in my life actually turn out that way.

At least Aetna is no longer my insurance company though. I’m really wishing that I had switched to my employers insurance before now. I would definitely not be in the fucking mess that I am now if I was. Hindsight is 20/20 though right?

Long story short; Fuck inflammatory bowel diseases & fuck insurance companies. Also, fuck the medication that landed me in the hospital in the first place.