Hiking Big Bend National Park, New Years 2013

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blogHey Friends. I have been pretty MIA lately due to a busy life, a growing non-profit and an active social life. All of which wouldn’t be possible with my awesome jpouch. I put it to the ultimate test a few weeks ago though when I went on a 3 day, 4 night hiking trip at Big Bend National Park in Texas. I hiked 30 miles in 3 days and only had to shit outside once, which was a real fear of mine.  In order to prep for our day long hikes, I would start my day with 2 Imodium and something to thicken the stool like a banana. I wanted to start the mornings out as thick as possible as A) I don’t like to shit outside as I am not a bear, and B) because I never knew when we were going to find a regular bathroom. Now venturing into the desert with a jpouch had me so pumped and so nervous, but I got to tell you, it wasn’t so bad. In fact it wasn’t really bad at all. I made sure that the food we packed for before, during, and after the hikes were all jpouch friendly. I made sure not to introduce anything new into the mix, and not to eat anything that would be questionable.

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I made sure that my hiking partner was well aware of my food restrictions and limitations so that there weren’t any surprises or potential for disappointment. Luckily my hiking buddy knew all about my butt and the issues that it brings so this was easy to avoid. In fact I spend a fair amount of time before the trip playing the “what if” game, because I was really nervous that something would come up, or go wrong and my body wouldn’t be able to make the hike happen. I just wanted to make sure we were on the same page.

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Water was a big concern as we were hiking in desert and water supplies are scarce out on the trails. So I bought a hydration back pack that held 3 liters of water, which was heavy but necessary. I also bought hydration salts from REI in case of dehydration but luckily I didn’t have to use those. The temperature was perfect. Sunny and 65 during the day, but at night it was so cold! We were tent camping in 20 degree temperatures so I made sure to wear lots of layers. 2 nights we camped were at a camp ground so there were toilets available and close but fortunately I didn’t have to use them during the night. However, the third night we camped was at a remote primitive site with no bathrooms. When I was told this I kinda of had a mini mental breakdown about all the “what ifs” because as if shitting outside isn’t bad enough, shitting outside in the dark would be much much worse. I can only imagine. So before we posted up for camp that night we stopped at a ranger station to use the bathroom and again fortunately I didn’t have to use it during that night. Probably due to all the thick foods I had eaten during the day.

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Big Bend has a natural hot spring that runs right along the Rio Grande! The water there runs to about 105 degrees! It was a nice rest after our long day hiking and to help heal the cuts from everything that has thorns. And in Texas EVERYTHING has thorns.

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Over all the trip was pretty amazing. I had never been hiking before so I panicked a lot before we left but in reality just about everything was fine. I think my OCD about planning helped and also made anticipating what my body would need a lot easier. Doing a hike like this was no joke. It was long, difficult at times, and strenuous on the body. It proved to me that I’m crazy out of shape and that its time to get my big ol’ diseased ass back into the gym. But more importantly what it really proved to me was that I could do it. So far, every physical feat that I have set for myself I’ve been able to accomplish which feels pretty damn good.

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Guest Post: I have a fistula

So as an IBDer we deal with a lot of shit, literally. But there is no feeling worse than dealing with shit that comes from somewhere it’s NOT SUPPOSED TO, which is what a fistula is. A fistula is an abnormal opening that connects two organs, causing drainage and air and pus and god knows what else to come through whenever it wants. I have a recto-vaginal fistula. So you can only imagine how THAT feels. Having a fistula is not only gross when it’s at it’s worse, but can also be painful, depressing confidence crushing. I know that for myself, personally, it leaves me feeling almost less-than-human. I’ve had 3 fistulas since my diagnosis of ulcerative colitis (which is now Crohn’s) in 2004 and I’ve tried every procedure and medicine out there for the damn things. I’ve had seton drains, vaginal mesh, Graciloplasty surgery, fistula plugs, the advancement flap repair, have been on Imuran, Remicade and am now on Humira to try and keep these damn things at bay.

Granted, since I started Humira my fistula has remained calm and even closed a majority of the way. But, after having a plug surgery last week to get the thing to ‘fully’ close I am having more drainage than I had BEFORE the surgery and am back to feeling pretty low. With this disease we go through highs and lows, what ifs and ‘should we?’ and constantly question our next move. I have a hard time planning ahead because I don’t know if I’ll still be able to do said activity once the day actually comes, and with a constant draining fistula, it makes these decisions even harder. The fistula affects any regular activity: standing, walking, sitting…etc. If I do any of these things too long I can expect to suffer the draining, burning consequences.  Not to mention sex. Sex is a whole other subject.  I’ve kept my fistula issues a secret throughout most of my relationships but as I’ve gotten older I’ve juggled with how to let my significant other know what is going on, with as little detail as possible. Regardless of my constant struggle with fistulas I have managed to: graduate from college, hold a full time and extremely demanding job at an ad agency, run in a 5k, travel to various cities and states, and workout. Basically what I’m saying is there are times when dealing with fistulas is rough, sad, frustrating, gross and painful. But I’ve realized that life continues to go on and it’s all about learning how to deal with it one day at a time.  Ok, brb, got some shit to tend to.

A month of uncomfortable.

I’ve been going to therapy lately, and my therapist gave me a task for the next month. Be uncomfortable.

I’m uncomfortable with the idea of being uncomfortable. When she said it, my skin started to crawl, and I was all “yea, I don’t think that’s gonna be a thing”.

However, here’s her logic (which is actually pretty good). I am a control freak, but I lead a life where I don’t get to control a lot of things about my life, like if/when I get sick. So since I feel so out of control about my body, I control everything else that I can. I tend to obsess over things, things that went wrong, or went right. Things from that past that I wish I could change, and my own behaviors that I don’t understand. I process and analyze and process and analyze and drive myself crazy. I don’t like being out of control of myself and part of how I do that, is by not putting myself in uncomfortable situations. By not looking stupid. By not trying new things. By repeating safe behaviors because they are familiar. I am not a risk taker, I mean, I do dumb shit but I’ll plan out my dumb shit.

So my therapist said, in order to keep moving through this stage in my life where everything sucks, I need to get uncomfortable and break out of habits and patterns. Even good patterns. I need to change-up my life. So she gave me a task of being uncomfortable for the next month. And in reality, it will probably be longer than a month. But she encouraged me to go to things alone, try new activities, and generally just do things that are way out of my comfort zone in an effort to connect with myself. To hopefully stop torturing myself with all my processing and analyzing and perhaps even learn a thing or two.

The question now, is what do I do?

There is a yoga class for people with MS that I think I’m going to go to. I have done yoga once…and hated it. I’ll know no one, and can’t bring a friend.

There randomly is a Buddhist monastery by my house that teaches meditation on Saturday mornings. I can’t think of a place that I belong less than there, so I might try that.

And then the panic sets in. Where do I park? What if I walk in the wrong door? What if I ask a dumb question? What if monks don’t talk and just use hand symbols and I don’t know the hand symbols? What if I think too much about not thinking and I can’t actually meditate? And this is why I don’t ever do new things.

My goal is to do a bunch of uncomfortable shit in the next month. What are you uncomfortable with? Any ideas for me?

 

Now Its Raining Cats and Depression

A few months ago I wrote about how it felt like it was raining cats and bowel problems. It felt like everyone I knew was having some issues with their IBD/jpouch/Ostomy. Like for whatever reason, the IBD gods were smiting us all. It sucked.

Well now its raining cats and depression. I have countless friends that are going through deep and severe bouts of depression right now. Myself included. I’ve found that when I get depressed, like this, there are very few things that I want to do. Most of them involve self medicating and sleeping. Wallowing on my couch has been a favorite activity for the last month. And then talking to my other friends about why they are depressed and if/how we can help each other.

What I’ve learned about having depressed friends is that it is a blessing and a curse. Its just like having other chronically ill friends. Sometimes you can relate to each other so well, that its incredibly comforting know that at least someone out there kind of understands why you haven’t showered in 5 days and are ok living on a box of cheeze its for an extended period of time.

But other times, you tend to bring each other down and its a slippery slope. My friends and I try to check in on each other daily and if I’m having a good day and they are having a bad day, I’ve noticed my feelings can change. And the same vice versa. Sometimes I have to tell certain friends that I can’t be their support network right now because I am not strong enough in my own life. Being depressed almost always revolves around some level of being selfish. Maybe you’re ignoring your friends calls. Maybe you cancel plans. Maybe you’re not a listening ear when someone else needs it. I think all of that is fine as long as you just give people a heads up on why you’re doing it. I have told people lately, that I’m have a really difficult time in my life right now, so I find myself retracting and isolating, so please don’t take it personally. And that’s all I have to say.

Some days are ok. Some days I wake up already hyper focusing on negative issues and things that I can’t change. Those days I take a lot of Xanax and when I get home I have a glass of wine. Is this the “right” way to deal with it? Nope. But right now sometimes I have to just shut my brain off, and that is how I choose to do it. Depression is a weird thing that is unique for everyone. All that I really know is that its very difficult to crawl out from it and that a lot of people I care about are down in this hole with me.  But I am doing what I can to crawl out, step by step, day by day. I take my anti depressants. I take my Xanax. I go to therapy. I talk to my friends and I try to set small daily goals so I can feel like I accomplished something. Sometimes that goal is just getting the mail but at least I did it.

Just know that many of us who are chronically ill deal with depression in varying degrees. Mild to severe. Frequent to periodically. I know that it does get better, even though it feels awful right now. It does. It will. In time.

 

 

 

 

 

Dehydration – The obvious and no so obvious

I am currently starting a new medication for MS called Tecfidera. Much to my chagrin, the first month of this medication has patient reports of mega GI issues. So “mega” that many patients with normal colons stop the medication. Jackie, why are you such a dumb dumb and taking this med? Well, in terms of MS medications the options are limited because I am not “compliant” with taking injections. Which basically means no matter how many times I start an injection therapy, I forget, don’t want to, or whatever other excuse there is for not taking it. Last year I tried Gilenya, which was the first oral medication released for MS, and well…I can’t take that one either. So I’m here, trying Tecfidera and all was well for the first week or so but now, its just dehydration all over. My poop is 100% liquid, and I haven’t been eating much because it makes me feel super nauseous. I even had an accident last night because the stool was so loose. This literally NEVER happens to me. So this brings me to my favorite IBD delimma, to ER or not to ER. Before you give me the lecture, just know that I will probably wait until the last minute to go because its what I do.

BUT the whole point of this thing is symptoms of dehydration because so many are obvious and a few are not so obvious. So when I’m dehydrated, here is what I feel.

  • Extreme fatigue (I’m sleeping like 11-12 hrs a night and its not helping)
  • Nausea
  • Dry and itchy eyes
  • Sore throat or a “sick voice”
  • a heavy head, it feels difficult to keep it held up
  • It feels like I poop liquid more frequently, almost as if my body is tying to deplete itself
  • Contrary to most people, I don’t feel thirst. I actually do not want to drink at all
  • Dry skin on my face and hands
  • Constant headaches all over my head, unlike a cluster headache
  • light headedness
  • difficulty with breathing
  • everything is slow, my walking, my talking, my thinking, everything
  • fever or hot flashes
  • I also feel very cold and get chills often, regardless of the hot flashes
  • heavy heart beat. When I lay still I can feel my heart moving my whole torso when it beats.
  • Sore back between my shoulder blades

So what do I do about it? First I get really frustrated and angry. Then I load up on Smart Water (because I truly believe it works). Then I sleep a whole lot. I’ve been pretty depressed lately, so I’m doing my best not to cry. There are these hydration packets that I think I’m going to try this time. Frankly there is a huge part of me that wants to just give up on the home hydration because its exhausting and very frustrating. But someone once told me the importance of taking control of your health even when its going down hill. I recently learned that the way you do or don’t take care of yourself can frame how someone views you. I always make jokes about my future, and how pitiful it maybe, but I learned that not everyone thinks those jokes are funny.

Frankly, I’m tired of taking care of myself, but you know what? You do what you have to do and hopefully this time won’t involve the ER.

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