IBS Study Survey *CLOSED*

**This study is now closed. But I really appreciate all of the responses I got to this post!**

My aunt forwarded me an email from her nursing instructor last night about a fellow PhD candidate who is doing her dissertation study on IBS.

She's conducting a survey of people between the ages of 30 and 50 (may be expanding it to 20 to 60, depending) with IBS. If you'd like to participate and help her out, let me know, and I can get you her email address. After contacting her, she'll send you a packet with information about the study and a questionnaire. You just fill it out and return it to her in the postage-paid packet.

I don't really want to post her email address on here, so email me if you're interested: ibsrachel at gmail dot com (obviously inserting symbols for the at and dot ;). Thanks!


Side note: I'm only 26, but I emailed her, and she's going to send me a packet because she thinks she will be expanding her survey to 20 to 60 year olds.

Imodium update

I feel like I failed with the timing for trying to stop the Imodium. This past weekend went really well, but there were a couple of things that have gone wrong this week so far that are making it hard to tell how I'm actually doing without it.

First is that I'm working 6 days in a row this week, and two of those days are 13 hour days. I don't usually get a chance to eat at work, so that really throws me off.

Second is that I've made some very poor food choices...like last night I decided to have two massive, greasy pieces of pizza, a Pepsi and four big Reese's. I felt like hell after that, and I'm still paying for it today.

Last is that this is the week before my period starts, and that week is always a hell week for me. I'm crampy, bloated, and have urgency and diarrhea regardless of what I do.

With all of that put together, I'm not sure if being off the Imodium is going well or not because I feel like crap right now. I'm going to keep pushing through this week and hope that it's just the factors above that are causing me to feel sick. And no more pizza. Or Reese's.

Tapering off the Imodium

You guys probably know that I've been taking a half tablet of Imodium almost daily to control the most life-limiting effect of my IBS- the diarrhea. It has worked better than anything else I've ever tried before, but I've been wondering how I'd do once I went off of it. My guess was that the diarrhea, cramps and urgency would come back just as strong as before, and almost immediately.

I have a four day weekend (again!) this weekend, so I decided to go for it. At first I was going to taper off- go from taking it daily to every other day then every 2 days and so on- but I wanted results more quickly than that. And, if it doesn't go well, I wanted to have at least a day to start taking it daily again and recover before my 13 hour day on Wednesday.

Today is the day after my second skipped dose. I haven't had any urgency or any loose stools. I'm actually going less often than I have been going the past few days which is definitely interesting. There was one kind of strange thing that happened after stopping it though- I'm not sure if it's a complete coincidence or what, but I thought I'd mention it. I skipped my first dose Friday night, and I was taking a nap last night- around 24 hours after my first skipped dose- and I woke up. My intestines felt incredibly weird. Like numb and tingly, but only certain stretches of my intestines were numb. After I walked around a bit while getting ready for bed and spent some quality time with my heating pad, the feeling went away.

It could have been that I was sleeping in a position that put pressure on a nerve and that section literally just fell asleep- I was sleeping on a full size bed with two dogs and a cat who thought they owned the bed...

Anyway, I bought a bag of BBQ chips Friday and there's only 1/4 of the bag left, and I'm still doing just fine. I don't know about you guys, but BBQ chips were my favorite growing up and they would absolutely kill me if I overdid it before the Imodium. Hopefully it stays like this and I don't have to take the Imodium every day. I'm not a fan of taking meds, so taking one daily annoys me.

By the way, thank you guys for the increase in comments I've been getting recently! I love interacting with people out there going through the same things I am.

Vacation

I've been playing video games since I was a little kid, but it was always just casually. At the end of last year, I took an active leadership role in a gaming community that was internet-based. Its members were mostly based in the US, but we had quite a few from overseas as well. To communicate, we'd either play online and talk or tweet back and forth on Twitter. It's pretty amazing how well you can get to know people you've never met through the internet.

I bring this up for two reasons. The first I'll get out of the way so we can move on to the second. IBS sucks. People think we're being overly dramatic when we say that it has ruined our lives, but let's be honest- it has. Most of us can't or don't like to go out and be social because we could be caught in a situation that leaves us rushing for the bathroom or worse. Either that or the social function revolves around food we can't eat and we'll no doubt get asked over and over, "Why aren't you eating?"

Thanks to the internet, I can still be social without being put into these situations. I love it.

Now on to the second reason. I've met some AWESOME girls through this gaming community and we've become friends, but tweeting/skyping/and google chatting wasn't enough- we wanted to meet each other in real life. We got this great idea to meet up and go on vacation together- god knows we all need that! I was having so much fun talking about vacation and coming up with places we could go that I forgot about one very important factor- my stinkin' IBS.

All of those ideas about going to exotic places (or anywhere outside a 50 mile radius of my house/bathroom) came crashing down. I couldn't spend hours road tripping in a car across the country, *quickly* stopping at gas stations for bathroom breaks and fast food joints for meals. Thinking about traveling by air on an 5+ hour ride on a plane with two bathrooms literally made my gut wrench. Another idea was a cruise- stuck on a ship in the middle of the ocean, swaying back and forth, with food provided only by the ship? Uh, no.

The worst part is that I had been so into the plans and then had to tells the girls why I was suddenly seeming reluctant. They were obviously very understanding, but I just get so tired of being the one that everyone else has to make exceptions for. The one holding everyone back.

I'd love a vacation, but the thought of actually leaving home, using unknown bathrooms and eating unknown foods makes me incredibly nervous. Who knows when my body will decide it's time for a extra gnarly episode? Even thinking about going with my boyfriend, who knows every intimate detail about my issues, makes me nervous. There are too many "what ifs" and things that could possibly go wrong and leave me miserable for the whole trip.

It doesn't help that every other vacation I've been on has been difficult. When I was little, my family was always frustrated with me asking to get off the highway and let me use the restroom all the time. Back then, I'd eat out with them wherever the whole family was eating and always be the only one with the upset stomach and not know why. Luckily, then I couldn't put two and two together and relate the symptoms back to certain foods- so I didn't have to avoid my favorite pizza place or the fried chicken at the crab shack. Now, I have to be especially careful when eating out and pick things that most likely won't upset my stomach. We're on vacation- we should be doing things and eating at places we've never had before, but instead we have to stick with the places that are known to have "safe" foods. Even then, I've ended up in the bathroom all night on recent vacations. What am I supposed to do? Bring all of my safe foods on vacation with me? :/

Now that I'm out of school and will be able to afford to go on vacation again, I really want to. So tell me- what do you guys do to ensure you have the best vacation experience possible with your IBS?

Graduation!

Hey all! Once again, I'm sorry it's been so long since my last post. I find that it's harder to think of something to write when everything is going fairly well. Another reason for my absence is that I'm now SEVEN DAYS away from graduating!!! I'll be graduating with a Doctorate of Pharmacy and a Bachelor of Arts in Spanish.

As far as my IBS goes, I've been having a "fun" time trying to figure out how to manipulate my Imodium dose to walk the fine line between diarrhea and constipation. I tend to figure it out right before my period, and since I usually get loose stools during my period, that completely throws me off. I'm finding that I'm more constipated than not when I'm not menstruating and having pretty normal stools when I am menstruating. I feel like I'm getting closer to really controlling it, though, so hopefully in a few more months I'll have something figured out.

A new thing for me is that I've been eating chicken almost every night. If you're new to my blog, I'll fill you in- this round of IBS was started off with a round of food poisoning caused by chicken wings at BWW which means I've spent the past 7 years or so avoiding chicken. So far so good! The first couple times I was incredibly nervous and had a couple mini episodes, but I quickly realized that I was going to be just fine. I've found some Lean Cuisine meals that work well for me- they cause a minimal amount of bloating and cramping as long as I eat them slow enough. They're just so darn good that it's difficult!

Anyway, I hope this post finds all of you feeling well. See you in another couple months ;)

Weight Loss: My Experience

valeracities commented on my last blog post about weight loss. She said that she thought weight loss was always a symptom of something more serious, so I wanted to comment on that in a post.

While weight loss does often tell you that something more serious is going on, I don't think that's always the case. Take me, for example. The reason why I'm losing weight is very, very apparent. I know why without even keeping track of anything, but my food log on caloriecount.about.com backs me up. I'm simply not able to find enough food I can eat without causing me problems to get the amount of calories I need every day to even maintain my weight. In fact, I get 500-1000 calories less than I need each day which is making me lose weight. Not to mention the diarrhea that causes weight loss from water weight being purged.

Now, if you're having weight loss, but you're still getting plenty to eat every day and, unlike me, you drink enough water every day to make up for water loss from diarrhea, you will want to go get that checked out with your doctor right away. I'm only saying that while weight loss can be associated with something more grave, it isn't always.

With that said, I feel like I've entered a new stage in this IBS mess. My pharmacy rotation I just completed was at a grocery store pharmacy. The grocery store also has a dietician on board, and I got to work very closely with her this month. Naturally, my IBS woes came up and she was very eager to help me find things I can eat to start feeling better and getting back up to my ideal weight. She gave me a lot of good ideas, but I think the best thing to come out of it was that I felt motivated to make a meal options list after meeting with her.

On this list, I listed out all of the different things I could eat at each meal that usually don't cause me any problems. I'm a very picky eater...probably worse than most kids. Growing up I only ate things like PB&J, Spaghettios, or Mac 'N Cheese and my tastes really haven't changed. So when I open up my fridge or pantry and don't see anything I can just grab and whip up quickly, I grab cereal or a bagel instead. It doesn't help that a lot of things in my pantry send my insides for a loop.

So having this list plastered on my pantry door really helps me see that cereal and bagels aren't my only options. She also really stressed building a plate. If you all didn't know (I didn't!), the new thing nowadays is called My Plate. It's really simple. It takes your plate and divides it into different food groups. Your plate should look like this at every meal. What I was doing before My Plate was taking one thing- a bagel, spaghetti or cereal- and eating just that. Sure, I like yogurt or could stand a little cheese, but I was only focusing on one part of the My Plate structure. Now that I keep My Plate in mind, I'm enjoying eating now. I feel like I have options again and that eating isn't just to maintain my energy and weight.

Not every one has plain tastes and is lazy when it comes to putting together a meal like I am, but I think everyone could benefit from trying to organize their plate like My Plate suggests. I know it has helped me a lot.

Need some ideas for meals? Obviously, everyone is different but here is my meal list so far:

My diet lately

I need a better way to keep track of time. Without tests and projects due, rotations are throwing me off. Since pretty much all I have to do is show up to my rotation site, there isn't too much to base the movement of time off of. I can't believe it's been almost a month since my last post.

I wanted to post tonight about what I've been eating lately because I've recently realized how horrible my diet is. So here it is:
-Bagels with peanut butter
-Cereal
-Healthy Choice Garlic Herb Shrimp frozen lunch
-Smart Ones Fettuccine Alfredo (I'm cutting this out as it's done more bad than good lately)

Did you get that? That's it. There are some random, snack-like foods I eat like Ritz Crackers with peanut butter or Wheat Thins, but that's about all I can handle lately. How sad is that? I usually end up having a bagel & peanut butter for breakfast and dinner every day and my Garlic Herb Shrimp for lunch. Every.single.day. EVERY F*CKING DAY.

I don't express my anger very often on here, but it is SO exasperating to have such a limited diet. I'm sure I could expand it somewhat, but A) I'm anything but a cook, so I don't know what else to try and B) I'm so afraid of something going horribly wrong after trying something new. If I had more time off to experiment, I would, but even though I have Friday and Saturday to try out new things, I've been sick or feeling sick every weekend.

I know for a fact I'm not getting enough calories or nutrients which is depressing. I got so close to my goal weight of 140 (I'm 5'10.5") but then started going back downhill again after I started having more episodes. Now I'm hanging out around 130. I don't like looking or feeling this thin. While people always ask me what I'm doing and then ignorantly say, "Well I wish I could have IBS so I could be that thin," I would give anything just to be able to gain some weight without making myself feel like hell.

I'm loving the Imodium because I don't have diarrhea anymore except around my period and when I forget to take it, but the other IBS symptoms are killing me. The gas pains/explosions are unbearable most of the time, and I still just get that sick feeling after eating something bad. Even though it doesn't end with diarrhea anymore, I still get the feeling that it's going to happen.

I need to take the time to sit down and find more meal options to add to my diet, but with Career Day for my pharmacy school coming up in a couple weeks, I'm too busy freaking out about the SIX interviews I have that day to make time for it or to have time to deal with the consequences of trying something that doesn't work out.

I'm just so tired of having such a boring diet. Does anyone have any tried and true meal choices that don't cause a ton of gas or diarrhea?