I shit someone else’s bed

Well the title just about says it all, doesn’t it?

Ugh. You guys. I’ve recently started seeing someone new. Someone who I really care about who is so great in so many ways and I just want to gush and gush and throw out smiley emoticons because that’s how I feel. So life is great, right?

No.

Last night I totally shit his bed. This is something that rarely, if ever, happens to me– maybe twice this whole year but it happened last night.  While I was sleeping next to someone else. While we were sleeping in a bed that is not my own. Cue dramatic death due to embarrassment. If you have a j-pouch, you know the feeling of “fuck, I just shit the bed”, but this is like a whole new level. This is, “fuck I just shit the bed, panic in the bathroom for about 15 minutes, create a plan, change the plan, panic again, get a new game plan, go wake up someone you like and inform them that you have just shit in their ridiculously comfortable bed.”  Their new bed might I add.

So I did it. I woke him up, and asked him to go sleep on the couch while I cleaned the sheets up and scrubbed the mattress. For an hour or so, I just kept scrubbing it hoping that while I cleaned the mattress I could also clean my conscious and perhaps scrub away my shame as well.

It was about 3:30am when this happened so after I figured my scrubbing wasn’t actually doing any good, I decided to try to go back to sleep. I grabbed towel and laid it on the bed because what is more fun that shitting bed? Shitting the bed twice. However, the Gods smiled down on me and didn’t let me humiliate myself twice in the same night, and instead just let me sit there and cry to myself about how awful it felt to be me in that moment. I cried until my alarm went off at 6am reminding me that I had to confront this situation again.

I didn’t know what to do. What to say. How to act. So I just shut down, retracted and basically avoided him while I got ready for work until I couldn’t hold it in anymore and just burst out into tears. I cried and he did exactly what you’d want someone to do. He hugged me. He kissed me. He told me wonderful things. He handled it exactly the way that you’d hope someone would. But it didn’t make it any less humiliating.

Right now…this is my life. In that moment every bit of confidence I’ve worked to have and possess seemed to slip away and all I felt were the insecurities that this whole situation forced upon me. Now don’t get me wrong, he is amazing. I couldn’t have asked for someone to handle it better, but it almost doesn’t matter at all how he reacted because it has become this incredibly overwhelming internal battle that I never want to have. ever. again.  And then I started to feel angry, and I hate being angry about IBD things. I work so hard to never be angry about things I can’t help, but this made me so angry, and maybe the anger was there to mask the overwhelming shame that I feel, but I left feeling defeated. I just can’t even…

Am I being perhaps a bit dramatic? Maybe? Does it feel any less mortifying? No. I mean there are very few things that leave you feeling this vulnerable; shitting someone else’s bed will definitely put you in the uber vulnerable category. You can’t help but feel like you’re at the other person’s mercy. Like if they never want to talk to you again…that would be understandable. If they are understanding but still freaked out….understandable. If they are completely accepting and it doesn’t phase them at all…then they are a person to be cherished.

I’m sure I’ll get over this but right now I just feel so much anger and shame. I want to crawl into a hole and die.  Why couldn’t I have shit the bed of my shitty ex-boyfriend? He deserved that.  But no, I had to lose control over my flippin’ bowel while sleeping next to someone who barely knows me. Someone I want to impress, someone I would like to be attracted to me. Someone who has now officially seen me in one of my darkest places.  I get angry about this when it happens to me when I’m alone in my own bed, I just never fathomed what it would feel like with someone else. Granted, I did tell him this could happen. I said it purely as a proactive approach to something I never dreamed I’d have to actually deal with.

I don’t really know what else to say. This post is all over the place and its not funny because I have yet to see the humor in it at this point. I just needed to share with you guys.

A big thank you to my very good friend Katherine who helped me vocalize some of what I felt today.

Dear Future Suitor

Whelp…I’m dating again and because I can’t keep my mouth shut about my butt, I know I’m getting some new hits to this site from potential mates. I’ve talked a lot about dating in some previous posts on Health Central. One about relationship essentials for IBDers, another about dating tips. I figure I’m no ace when is comes to dating so I wanted to reach out to my new visitors with a letter.

Dear Future Suitor,

Welcome to my blog. Congrats on the successful Google search of my name. There are a few things that you should know about dating me. Chances are this would probably be an uncomfortable conversation so lets just skip to the part where I give you information and you choose whether or not you want to talk to me again.

1. I like lists.

2. I talk about my butt…a lot.

3. I talk about poop… a lot a lot.

4. There may be times when I choose food or booze. Sometimes my stomach just can’t handle both.

5. I will probably end up in the ER during the course of our relationship if we seriously date. Its just something that happens periodically.

6. For as open as I am about my butt disease, I am very private when it comes to bathroom usage. I will go to the basement, upstairs, or where ever the furthest bathroom is when I have to use it. Please leave me alone when I’m bathrooming. Sometimes I’ll be in there a while, I’m not dying, don’t check on me.

7. I don’t have a colon. That means that sometimes I’m a rockstar boozer and other times I’m a total lightweight. Please be prepared for both. Also be prepared for when I choose not to drink at all because I’m not feeling well.

8. Following #7 I have to be honest. Sometimes during my sleep, I will shit the bed. Now it doesn’t happen a lot and I do everything I can to prevent it but it has happened. This is a terrifying thing that I have to live with. There is nothing more mortifying in your adult life, so if you happen to be sleeping next to me please have a heart. In the same token, if this is something you think you can’t handle (and I don’t blame you), please stop seeing me before we get to the point that we’re sharing a bed.

9. I have IBD and Multiple Sclerosis. Both are a big deal. If it hasn’t scared you off, please do a quick google search and learn a little about both. If that also didn’t scare you off, please be open with me about what you would like to know.

10. I have put my whole life on the internet. This blog and others chronicle my journey into and out of sickness and all the dark paths that I took along the way. If you choose to read it, you will get great insight into my life in a very personal way. It gives you an unfair advantage.

11. I know I put on a really carefree exterior about all of this shit, but sometimes it really starts to weigh on me. I may get overwhelmed and cry about it.

Hopefully you’re cool with all of this. If not, that’s a bummer but my bionic ass is non-negotiable. If you can handle the crazy health disaster that is my life, sweet. Chances are you’ve got my number. Ball is in your court.

 

-Jackie

 

 

 

 

ROLLER DERBY!! Hi, I’m fresh meat!

1798595_720999744590854_1576536325_nSo I started roller derby. I know, right?! After much talking and about a million questions to my good friend Christy over at Ostomy on  the Track, I finally decided (after almost 10 years of wishing) that it was time to start training and work towards getting placed on a team.

Can I skate? Yea, kinda.

Can I skate well? Nope.

Do I know anything about Roller Derby? Just that its fun to watch and it looks like it hurts.

Turns out skating when you’re 12 is way different than trying to skate as an adult. I have so much to say about roller derby now that I’ve been training and know a lot more about the sport, but maybe I’ll post about that another day. What I want to talk about now is fatigue and how it correlates to my new hobby.

You guys I’m tired. Like really tired. I went and had my blood work done and of course, it all came back normal. Which is great except that it doesn’t help figure out why I feel this way. I literally go to bed between 8-9pm and sleep the whole night. I’m having a hard time staying awake during the day as it is, now adding derby on to it has made me really nervous. Its got me really asking, “Can I do this?” Like, really.

After practice on Sunday I went home and slept for almost 4 hours. By the time I woke up it was 5pm and I felt like I lost my whole day and it still didn’t stop me from going to bed at 8:30. I’m really hoping that there are just new demands on my body that are making me this tired. I’ve been skating between 2-4 times a week for the last month many of which are late at night. Well, late for me. For “normies” I know generally its a matter of bodies adjusting to more demanding lifestyles that can make them tired and fatigued. But I’m starting to wonder, “Is this my life?” Will I always be this tired? Will I always have a bigger demand for energy than I produce? Which all leads me back to, can I do this? I really don’t know at this point and I may not know for a few weeks or months. But I’m sure as hell going to try. For the first time in a long time, I am excited about something new. A new place to make friends, and friends that aren’t sick. I don’t have to be “sick” when I’m there and the people there don’t know I’m sick. Well, thats because we haven’t had a chance to talk, although I did wear a GWG shirt to practice on Sunday. Derby is refreshing. Its mentally and physically stimulating and it makes me want to challenge myself and to grow into a better skater. Its giving me goals. I want it so bad you guys, and the idea of simply not being able to do it is really scary.

Everyone always says that you shouldn’t say “can’t”, but what if I really can’t do this. How devastating. So here’s to hoping I’m just in an adjustment period.

Do you have any inspiration for me? Was there anything you thought you couldn’t do and instead surprised yourself?

 

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.

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