Thursday, April 28, 2016

Short-comings in health care

5 long months ago, I started documenting a journey that I referred to as "The What's Eating Jacob" saga. Nobody at the time could predict that 5 months later, we're still playing the What's Eating Jacob game. Here's a brief recap for those that are new to my story:

In November 2015, I had my Cook Entuit Gastrostomy Tube (GTube) inserted into my stomach. In English now, that's a fancy way of saying my "permanent" feeding tube. At this point, I had lived with a Covidien NG Tube (a tube from your nose to stomach) and the frequent, heavy nosebleeds that I was having with it for about 8 months, as well as a persistent sore where the tubing touched my nose. Two days after having my GTube inserted, I broke out in a widespread rash that the doctors believed to possibly be chicken pox. I spent 2 weeks in the hospital on anti-virals until they determined that I didn't have chicken pox and almost jokingly tabled "perhaps it's an allergy to the tube materials". Atarax (anti-histamine) helped to take away the rash, itch and pain. Until even that stopped working and you could see that wherever I taped the line to my skin, had blistered so badly that it ate a trough through my skin and I had to literally gently pull the line out of the mess. Thankfully, there's an "easy" fix for that: avoid touching the tube to the skin. I used DuoDerm, a protective sticky that forms like a second-skin, to prevent the tube from touching me, and it was no longer a problem. Unfortunately, I still had a lot of soreness and inflammation around where the tube came out of me that wasn't so easy to fix. I had to wait until the beginning of January to be able to switch the tube for a different one because you are not supposed to do any tube changes until the hole into my stomach heals - 6 weeks post-surgery.

By the time January came, I was really struggling with the pain from the tube and was really looking forward to replacing it with Halyard Health's MicKey Low Profile Gastrostomy Button. It's so small that there is no way to tell that I have it and the best part was not having a tube hanging off of me, and the massive amount of tape used to secure it. I thought that this would be the end of the What's Eating Jacob saga. I looked forward to that a lot.

But the saga didn't end. I stayed on the Atarax medication for a few weeks after I had my MicKey placed just to deal with the leftover rash. I then stopped it. Big mistake. A few days after stopping the medication, I started to break out in an itchy rash. It turned out this time that it was an infection. The doctor gave me more Atarax for the itch and antibiotics to deal with the infection. 2 weeks later I was again off the Atarax and had finished the antibiotics. Guess what came back? No, it wasn't the cat, it was the rash. Worse.Than.Ever. And back we went to get some more advice. This time there was no infection present, but Atarax was clearly helping to keep the rash response down to a minimum. Then it started to lose it's effectiveness. I started having problems with granulation tissue forming, and having breakthrough rashes come out of nowhere. Clearly, something was going on here. Our hospital's GTube team said that my mom was doing everything perfectly for managing what was going on, but things just kept getting worse. I think we were all feeling pretty stuck in trying to come up with solutions.

About two weeks ago, things reached a critical point in this journey. I started to have major leakage of stomach acid from the GTube site. So much that even with sponge dressings, I'd quickly soak through my shirt/pants, etc. With the help of our GTube team, we ruled out a problem with the tube itself as a potential cause. Again, we were feeling pretty stuck on figuring this out.

Fast forward to yesterday, the GTube area had started seeping blood for 4 days at this point, and it was majorly painful. I couldn't sleep more than 3 hours without waking up screaming in pain and screaming from the itch. There was clearly something very wrong.

Yesterday I met with Dermatology and the GTube team. Dermatology had referred me to an allergist for patch testing back in January, and the allergist said that he wouldn't see me until the dermatologist sent him a list of ingredients that are used in the medical products that were the likely offenders. So my dermatologist went on a research mission. You would think that a doctor could access this information easily, right? At least I would assume that as a medical provider (or even a medical consumer) you could easily access a product ingredient list. The answer is quite shocking: this information is often hard to come by and a strictly guarded secret.

Imagine this, a medication you take comes in three different brands, each with a slightly different formula. You use each medication for a one month time period, one after the other, and note a similar reaction to all of them. You would want to know what ingredient was in common to all of these products so that you could find out what was likely causing the reaction so you could avoid it in the future, right?

Well, for medications they do list all the ingredients, but for medical products such as feeding tubes, or dressings, the answer isn't so easily found. My doctor attempted to contact these providers and found that they wouldn't give up their secretly guarded information because other people could copy their patent.

Whoa, wait a minute here. You mean to tell me that I, the consumer who pays (or at least my mom pays) mega money on medical supplies doesn't have the right to know ALL of the ingredients that are used in my own medical supplies? I understand that all medical products have to be safety checked and approved, but don't medical companies have an obligation to disclose this information when it causes an adverse effect? I can't imagine that I'm the only one in the world that has had such a reaction.

I sit here now, in pain, with tears forming at my eyes with no immediate end to this saga in sight. The dermatologist is going to try to push us into an allergist ASAP for patch testing. There is a different tube available that does not contain silicone, but at $500 a shot they want to make sure I'm not allergic to the materials of it first (I'm thankful for that!!). They have scheduled me for my next set of scopes and biopsies on May 17 which will tell them not only how the Crohn's treatment is going, but will allow them to have a good look at what's going on around the GTube site on the inside of the stomach. There is some speculation that whatever is causing the reaction on the surface is likely going to be causing some problems on the inside too. What I do know is that we could have had a direction to go to find answers earlier if we could have found out what was in my medical supplies, and it might have helped me to avoid so much pain and tears.

*I was going to place photos for a clear picture of what I'm talking about, but have decided that no one wants to see that. Essentially, I have an orange-sized circular patch of raw, bleeding, inflammed skin surrounding the tube, and a blister-type rash spreading on the edges. It pretty much looks like a pretty bad case of road rash. I have stomach acid pouring over it constantly so it burns no matter if I have cream on it or not. It's extremely painful*

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