Flare Update

After being on prednisone for 5 or 6 days I finally resided to the fact that the rectal pain was not going to go away on it’s own. I called my GI on Monday and left a message for his nurse. I heard back from her a couple of hours and she said that I could use the hydro-cortisone suppositories that I used in December when I last had rectal pain. It worked then so I’m hoping it works now.

If the suppositories don’t work it’s on to plan B. My nurse didn’t say what plan B involves but I’m pretty sure my GI would want to do some sort of scope. Whether it’s a colonoscopy or a flex sig. And I don’t want either. I’m really hoping that between the prednisone, hydro-cortisone and Humira that my flare will finally be gone by the end of the week.

I will be so happy when I get off of this prednisone. I hate prednisone brain. It makes me all emotional and over react to things I wouldn’t over react too. I can’t wait to be off of it.

I’m so ready for this flare to be over. I want this rectal pain to go away so I can go back to walking and sitting without pain or discomfort. It’s getting nice out and I want to be able to walk my dogs more. I was also trying to work out more so I can get this prednisone weight off that I’ve had for two years now. I have stuff that I want to do and I feel like my body is holding me back. Fingers crossed that this round of meds work and that I can get back to as ‘normal’ as life gets when you live with a chronic illness.

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VlogBrothers: Why Are American Health Care Costs So High?

VlogBrothers on why American healthcare costs are so high.

In which John discusses the complicated reasons why the United States spends so much more on health care than any other country in the world, and along the way reveals some surprising information, including that Americans spend more of their tax dollars on public health care than people in Canada, the UK, or Australia. Who’s at fault? Insurance companies? Drug companies? Malpractice lawyers? Hospitals? Or is it more complicated than a simple blame game? (Hint: It’s that one.)

For a much more thorough examination of health care expenses in America, I recommend this series at The Incidental Economist:http://theincidentaleconomist.com/wor…
The Commonwealth Fund’s Study of Health Care Prices in the US: http://www.commonwealthfund.org/~/med…
Some of the stats in this video also come from this New York Times story: http://www.nytimes.com/2013/06/02/hea…

2016 New Years Resolutions

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The day after his surgery

First blog post of the New Year! It’s hard to believe that 2015 is over. The last day of the year was not a very good day in this household. My beloved dog Jäger had a partial bowel obstruction and had to have emergency surgery. He was able to come home that night thankfully and I didn’t get a whole lot of sleep. I’m so glad that he’s ok and didn’t have a full bowel obstruction or a perforated bowel. Now we’re just focusing on him healing and so far he seems to be doing well.

There are a few things I want to work on in 2016 for the New Year:

  • Focus on what I can do, not on what I can’t.
  • Be more active physically when I can.
  • Get better at meditation
  • Ask for help when I need it.

I think these are the three things that I’m really going to try and focus on in 2016. There’s so many other things that I what to do, like blog more, lose weight. Try to keep my house clean. But I really don’t want to over whelm myself with things to do. Life can be hard enough as it is. Which is why I always try to focus on what I can do. And still need to improve on.

My fiance says that this is me to a T

Asking for help when I need it is another thing that I really need to work on. I always feel like I should be able to handle everything myself. I’m a pretty strong independent woman and I have a hard time with this. My fiance has also told me that I need to get better at asking for help so that I’m not so angry when I finally do. I have a bad habit of thinking that I can get everything done myself and I can’t always do that. At the Girls With Guts retreat in October we talked about how there’s nothing wrong with asking for help and I really need to remember that.

So here’s to a new year! I hope that everyone has a good one and wish you all the best.

Girls with Guts Retreat 2015

Going to Girls with Guts retreat in Gresham, OR was one of the best things I’ve done for myself since I’ve been diagnosed. I had an amazing weekend with around 70 women who all have Inflammatory Bowel Disease. I also got to meet two friends from Twitter who I have been talking to for months. I feel blessed to have had the opportunity for us to actually be able to meet in person and hang out for a weekend.

The Girls with Guts retreat is an amazing thing to experience. You realize that you’re not alone. That so many others out there share your struggles, your doubts, your hopelessness. This retreat is an opportunity for healing. To make new friends who will be there for you no matter what. To become part of a sisterhood that will withstand anything.

What all did I do at the Girls with Guts retreat? A lot of things! We had a couple of guest speakers come to teach us about various subjects.2015-10-10 19.27.18 We broke down into mini sessions to discuss various topics and how other women at the retreat deal with those issues. There were some activities to do like zip lining and riding on a giant swing.

We got to meet Niki Strealy. She is known as the Diarrhea Dietitian. She spoke to us about the microbiome, micro-nutrients, diet treatments and nutrition during a flare. What she had to say was pretty interesting. We also got to get a copy of her book The Diarrhea Dietitian. One thing that was nice about Dr. Strealy was that she is able to relate to what we’re going through because she suffers from irritable bowel syndrome.

I asked Dr. Strealy if she knew any dietitians that she recommended where I live at in Oregon and she didn’t know any. But she is willing to take me on as a patient and do Skype visits which I think is pretty awesome. I’m hoping to be able to set this up with her soon. I’m very interested in the Low FODMAP diet to see if that helps me out at all.

2015-10-11 09.03.49Dr. Megan Riehl also came to speak to us at the retreat. She is a Clinical Health Psychologist at the University of Michigan Hospital Systems. She came to talk to us about quite a few things. She went over the GI stress cycle and how it affects our bodies. She went over the best ways for us to be able to learn how to stop these cycles before they get to the point where they’re causing GI distress and elevated heart rate. This is something that I personally need to work on a lot. Stress tends to make me have to go to the bathroom.

Dr. Riehl also shared a few quotes with us in her presentation and this one is my favorite:

“There comes a time in your life when you stop focusing on those who don’t understand your illness and you just focus on YOURSELF.”

She went over coping mechanisms for dealing with stress. She had us break down into groups to talk about our stressors and to come up with new ideas on how to deal with that stress. What I plan on doing is trying to meditate and I want to try yoga. So far for mediation I’ve been using a website called Headspace. They have some series on how to deal with stress that I want to try out after I make it through their foundation basics.

Here’s a few key points that I took away from her presentation:

  • Sometimes you just have to tell people that you’re not doing well.
  • Women with IBD are at a higher risk of having anxiety(2015 study)
  • Sometimes you have to do what’s best for yourself
  • People aren’t always worth the emotional responce
  • Sometimes people just aren’t going to get it or don’t want to get it

All in all, this retreat was well worth it. I plan on starting to save up money next month to go next year! It’s going to be on the east coast somewhere and I can’t wait to see everyone again.

 

For more information on Girls with Guts, please visit www.GirlsWithGuts.org.

Yearly Gastro Checkup

Today I saw my GI doctor for the first time in a year. Which to me is a good thing. It means that I wasn’t sick enough to have to go in for a visit. I did get sick a few times over the last year but they worked with me over the phone thankfully. It’s a three hour drive one way to go see them.

One thing that I was irked about when I first got there was filling out the paperwork for past medical history.2015-09-15 12.44.59 There wasn’t any place to put down that I have Indeterminate Colitis. Only Crohn’s Disease or Ulcerative Colitis. I ended up writing it in myself. In my opinion this needs to change. Indeterminate Colitis need to be recognized nationally. I shouldn’t have to write in what I have on a piece of paper that lists forms of IBD. I also should have the right diagnosis in my chart.

Anyway, my doctor so far is happy with how I’m doing. The only thing he’s concerned with right now is the joint pain. There isn’t a whole lot that he can do about it right now because I’m already maxed out on the Humira. And the only other option is chronic steroids which I don’t want to do right now. Long term steroid use is NOT good for you. Which leads me to believe that my GI thinks I might have arthritis. Or at least joint complications due to the IBD.

So right now I’m stuck dealing with the joint pain. It’s the worst in the mornings and sometimes at night after a long day at work. During the day they don’t always hurt once they’re warmed up and I’ve been using them for a while. I should also start doing some daily hand exercises to see if that helps. I already found a few online and saved them to Evernote. Hopefully they help and make a difference.

I also got some blood work done today. I’m hoping those labs will be back tomorrow. My WBC count is being checked along with a ESR panel. I’ve never had an ESR done before but it checks for inflammation levels in your body. Hopefully my labs will be back tomorrow! I’m interested in seeing how I’ve been doing since last year.

On my clinical care summary that my doctor always writes up before I go home it mentioned that my BMI is above normal range and that I should talk to my PCP about weight management. Which did bum me out a bit. I was on steroids for 10 months last year and that did not do me any favors weight wise. I was working out regularly earlier this year and did manage to lose somewhere between 7-10lbs. I definitely need to get back to the gym and get in shape. I have about 10 more pounds to lose before I’m back to where I was before I got super sick in December of 2013. Looks like it’s time for me to find some motivation to get back to it.