Sunday, September 25, 2011

Back to zero

I was really hoping that I would make it a full two years symptom free, but alas it wasn't meant to be. Still, I had a pretty good run at it. Twenty-one months, most of them without medication, was pretty nice. However, I was really discouraged at becoming sick again. When the symptoms started back up, it happened gradually. I tried to get more sleep and cut-out stress...but I had a lot of stress that I couldn't get rid of. I'm not sure it would have made a difference anyway.

Once I was sure it was a full-blown flare-up (no pun intended), I immediately called my GI doctor. Unfortunately, they were booked with no appointments available for a couple months. I scheduled an appointment, but by that point I was desperate for help and begged the nurse to have the doctor call a prescription in for me. The doctor was out on vacation for a week and the nurse said she couldn't call in a prescription without his authorization since I hadn't been in in over 18 months. I must have sounded pretty miserable because she thankfully took pity on me and called him on his cell phone. My doctor and his nurses are pretty great. He called in a prescription for Asacol and I called my  husband and asked him to pick it up.

My husband called shortly after that and said that he had just left the pharmacy. I could tell from his voice something was wrong and I asked if he got the prescription. He said no because it would cost $275 for a two week supply. And we have insurance! We tried to see if there was anything else the pharmacy could give us, like a generic drug, and they said there wasn't a generic and we should check with the doctor for something cheaper. Since the doc was out, and I was miserable and wanting to start the medicine as soon as possible we went ahead and bought it.

But, I was really stressed out. $550 a month is a huge amount for us. This was on a Friday and I worried about money all weekend long. Needless to say, by the next week I was even more sick! When the doctor was back in, I called the nurse and told her we needed to find a cheaper medicine. Things were complicated by the fact that I haven't finished weaning my baby, so we had to check to make sure the different medicines were okay to take while I was nursing. I spent over three hours calling the GI office, the pediatrician, my insurance company, and the pharmacy. We finally found one medicine (sorry I can't remember the name) that would only cost me $50 a month and the pediatrician said it would be okay for me to take while nursing (even though the pharmacy said it wasn't...). But, I looked up the medicine online and read about the side-effects and it sounded horrible. Everything from calcium depletion to lowering your white blood cell count. My mother is on Arimidex for breast cancer and the side effects are similar and it makes her miserable. I was so discouraged, but I didn't know what else we could do. I had to have medicine and there was no way we could afford the $550 a month.

My sister suggested I call my insurance company and see if they would let us change insurance plans that is offered at my husband's work to one of their different one they offer that would cover the medicine. I didn't really think there was any chance they would let us, but I called and asked anyhow. The insurance company said it was up to our provider (my husband's work) to decide if we could change. We were past open enrollment, so I didn't really hold any hope that we could change, but I decided it wouldn't hurt to try. So, I called and wonders of wonders, HR said they could try and work it out! They said we would still have to pay for the prescription we already got, but they would make an exception and let us change plans! Forty-eight hours later and we were on a new insurance plan. When I went to go get my next two weeks of medicine, it only cost me $25! It felt like a miracle. I had been so stressed about the money that once we got the news, the depression I was in over being sick completely went away. I'm still sick, but mentally I am happy and optimistic and I am hopeful that I will be back to normal within a couple months. I have my doctors appointment in a couple weeks and we'll see what he thinks.

In other news, blog reader Andy asked me to share a website that those of us with UC to possibly help each other out. I'm not at all affiliated with the website, and don't know much about it. However, I am interested in the items the website is looking at. This is what Andy wrote:

Basically the theory is lots of people sign up for the site and rate the various treatments they have had for Colitis, what they think triggered their colitis, and they can track various metrics such as hours sleep, exercise, etc and the site is partnered with several universities with which it shares the information.

The reason I am writing, is that once they have 1000 patients rate the various treatments, they publish the results, which they have done for Crohns:

I would really like to raise awareness among the UCUC section is below:


  1. I'm afraid I might be encountering the same thing. It was a heck of a good time while it lasted though. I know we'll have ups and downs. I am grateful for the ups, and grateful that I have people to share with like you and the other UC bloggers. I hope you get stabilized soon and can keep on truckin'. Thanks for sharing.

  2. I just happened across your blog as I also going through a flare up after almost 9 months of being symptom free. Not fun! I emphathasize with what you are going through. I wish it did not take soooooo long to get a GI apptmt. Thankfully my family doctor is great and can prescribe me the meds I need. Also, Asacol is def. expensive. I have been on it for months now and if I wasn't for my insurance plan, I would not be able to afford it. Anyways, hope you feel better soon and thanks for the post! I am going to read more posts now!

  3. Hi,
    Just checking out blogs of fellow moms with UC and came across yours. I went through exavtly the same deal a few months ago. I love how the additional stress of dealing with hospitals leads to a worsening of the UC. At any rate. I ended up paying (with insurance) 150 for a month supply of Rowasa enemas (which you probably know is the same thing as asacol but a suppository). I have insurance -crappy insurance through my husbands work. But my question is- didn't your monthly med insurance payment increase to get the 25 dollar med rate? I may look into switching within the company (though I just applied to get covered under his- long story).anyway- thanks for the blog! hope you feel 100 % soon!

  4. Thanks for all of your good thoughts!

    Sharon - I agree, people with UC shouldn't be subject to hospital stress! I tried to address your question about insurance in my next post.