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Coffee or Soda?
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hannahleigh89 posted:
I know that caffeine is generally a bad idea for IBD patients, as it tends to worsen symptoms, but which is the better of two evils?

I personally don't care much for the taste of coffee, but I do like french vanilla cappuccinos, and Folgers happens to make an instant coffee in that flavor. I bought some yesterday, but I haven't tried it yet, as I hear coffee often causes diarrhea. Seeing as how I already have that and I now have to be out all day long, I'm kind of frightened to see what might happen. I think I'm going to try it tomorrow morning, but I'm not sure yet.

I'm currently downing about three Mountain Dews a day. One when I first wake up, one on the way to school, and then one on the way home from school. I know for a fact that I can't keep this up though. I'm only on day three, and my kidneys are pissed. Plus it doesn't seem to matter how much immodium I take, I'm still using the bathroom way too frequently and having a lot of cramping, partially due to the caffeine, and partially due to the sugar, I'm sure. My body just isn't used to soda anymore. When I was diagnosed, I tried to cut it out completely.

I know that obviously the best solution is to get more sleep and not needing the caffeine, but that really isn't an option. I have to get up at 5:30 every morning to get ready. My body is currently used to a 12/12 cycle. I'm in bed for 12 hours and I'm up for 12 hours. Although I'm not usually asleep the whole 12 hours, I'm laying down and trying to rest, so that's a lot easier on my body than being up and running around. I'm currently getting about 6 hours of sleep at night. So that is a huge difference. While I'm hoping I adjust to it eventually, I've got to have something to help in the mean time.

Right now, I get out of clinicals at 1:15 PM. If I could come straight home every day, which won't happen, but in a perfect world.... Anyway, if I could come straight home, I'd get here around 2:30. I've been trying to nap when I get home, but that isn't going to last for very long because I'm already behind on homework, and like I said, it's only day three.

Anyway... I'm trying to do everything right. It isn't going to happen, but I'm trying, and I still need the caffeine for a while. So what are your thoughts on this? Would I do better with the coffee, or is soda my best option? I can't run to the bathroom all day. There are many reasons for this, but currently, my biggest one is that it's not private at all. I have a huge issue with using the bathroom in public, and we have a teeny tiny bathroom right across the hall from our class room. It has three stalls, and one sink. It is SMALL. Any noise made in here will be heard by anyone else in the vicinity. And I'm still terribly embarrassed about it. I'm even having trouble peeing there. I held it for like four hours yesterday, and it was awful, lol. My bladder doesn't work real great (side effect from Bentyl) and I feel real awkward sitting in there for ten minutes trying to pee before anything happens.

I think I'm going to ask my instructors if there's a more private bathroom that I might be able to use, but I'm not holding my breath. We're set up on the second floor of a hospital, and it's not really designed to be a school type setting. We get interrupted all day by announcements over the hospital intercom, for example.

I'm just looking for advice because I'm just getting started and I'm already struggling. Please let me know if you have ANYTHING, even if it's not related to anything I asked about. Thanks for letting me vent guys, and thanks in advance for any tips.
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OyWithThePoodlesAlready responded:
Well, crud, I just took 15 min to reply and its gone - hopefully it will show up later - if not I'll try to write again

(webMD *please* fix this, this is the 2nd time in a week the page has eaten my response)
 
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hannahleigh89 replied to OyWithThePoodlesAlready's response:
I've started copying everything so that if they lose it, I can just paste it back. Hopefully it shows up, but it's been two hours so I dunno.
 
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OyWithThePoodlesAlready replied to hannahleigh89's response:
Yeah, I was pasting into another window for a while and then I got lazy - which is not a big deal when its a short post but would have been good today...

I'm sorry the first 3 days have been so rough...

For me, caffeine makes my back hurt so I'm not sure if its the same (how much I can tolerate depends on how bad my crohn's is), but I seem to do better with energy drinks than just straight coffee (better as in I can get more of a buzz w less back ache). 5 hr energy has a bunch of b12 (if you're absorbing that at all)- I use that or Monster energy drinks. I know its horrible but I just can't focus some days with out it

if you want to stay away from the energy drinks, coffee and tea are suppose to affect you slightly differently, so you might find some success with alternating the 2. If you can find a good chai tea, that can be good with milk and sugar. And an easy way to make a sweet coffee is to add ice cream or chocolate milk to strong coffee

no matter what the type, I build a tolerance pretty easily (of course I've been doing this for 15 years...) so I try to only drink until I get enough buzz to keep going and periodically try to cut back bc no matter how healthy I am, I can't tolerate more than 2 cups in a day... so if I just keep drinking more and more, it'll get to the point where I can't use it to stay awake, so I try to taper off on weekends or breaks

Along the staying healthy line of thought - if you can tolerate water, I can often stay allert with a ton of water (of course this won't help w the br trips...) I can really only tolerate Dasani or the walmart version) or Pur (not brita) in a contigo bottle that is REALLY clean but most days I can drink that. Its probably more a reflection that I'm tired from being dehydrated but what ever helps...

also, if you're still running a fever, are you taking tylenol or anything? I know I often have to take tylenol to keep going if I have any kind of fever

sorry for the disjointed thoughts. wanted to respond since it looks like my orig is gone

I hope you start feeling better and can find something that works for you
hang in there - you have an amazing spirit and perseverance!
~Ali
 
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miserable_sob replied to OyWithThePoodlesAlready's response:
Geez I love how the reply I posted in this thread this morning never popped up here. I'm sure others have had this same problem happen to them here. It sure would be nice if Web MD fixed this glitch already.

Otherwise since I dislike coffee, I can't speak for it. Soda, pop, Coke or whatever you want to call it, doesn't get along well with J Pouches. I usually wind up drinking the Caffeine Free Diet Coke since I don't feel any difference with or without Caffeine, so why should I digest it if that's the case?

From what I've seen so far with 20 plus years of my J Pouch is diarrhea is a way of life. I've had it every day with this lousy thing. I knew my pouch wasn't going to be perfect but if I could go back to my diseased colon now, I'd take it. Sometimes going against the laws of nature or God's will is a big mistake.
 
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hannahleigh89 replied to miserable_sob's response:
Yeah, I expect to have diarrhea, it just seems like there are some things that make it worse. Caffeine is definitely one of them for me, but as I said, I have to have it. Diarrhea is better than dying in traffic because I fell asleep during my hour drive to campus, lol.

My doctor keeps insisting that if I try the things she tells me to, she'll be able to get me down to one or two bowel movements a day. This to me doesn't seem possible, but every time I go she says the same thing. I've tried a few of what she recommends, and some of them do legitimately help. They're just expensive or they taste bad or they give me gas or there's always some kind of down side. The last thing she recommended are Benefiber fiber chew things. They're really, really gross. It's like $10 for a bottle of 100, I think, and that doesn't sound bad. But you're supposed to eat 9 of the damn things a day, and they're huge. I'm just not going to make myself eat 9 gross things a day. I'm not that dedicated. So yeah, maybe if I ate three packages of Metamucil fiber wafers and ate 9 Benefiber fiber chews and used four packages of the weird crap she gave me, maybe I wouldn't have diarrhea. But I don't have the money for that, and I wouldn't get to eat anything besides fiber supplements. Then I'd end up constipated or something and she'd be yelling at me for eating too much fiber. You just can't win sometimes, lol.

But I have to find something. Going to the bathroom all day long just isn't an option like it is when I'm at home.
 
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miserable_sob replied to hannahleigh89's response:
I understand what you're going through Hanna. The sad part is they expect you to consume foods that you have no real love for, for the rest of your life. For example, right now I'm sick of Metamucil. When I do buy it I just buy the no flavor Walmart brand. That's mainly because all I can find Metamucil in is that orange flavor, that tastes more like it came from Dupont Labs than an orange tree. So I'm happier with the no orange taste, that I can find in the Walmart brand for less $$ too. Although I can only take so much of that grit taste. I only wish they could at least try to make Metamucil in chocolate flavor. But than again chocolate grit still doesn't sound yummy.

I can also understand why you're anything but happy with the Benefiber Chews. Since I have Fiber Choice Chew Tablets sitting around (looks like I gave up on them) I'm going to try them again. It's just not easy to make a habit out of these things though. I just ate some Fiber Choice Chews, and all I could think was "not bad but they're anything but a pleasure to consume too." I forgot how much I paid for the bottle of them. I'll take your word though that just like the Benefiber Tablets, they too are a total rip.

As for only 2 bowel movements a day, I believe the last time that happened to me was long ago when I still had my colon. As far as my J Pouch is concerned though, I don't even bother to count how many trips I make to the rest room with it. I just try to eat as strategically as possible depending on what my schedule is for the day. That means I try to eat at a time where I know my pouch isn't going to haunt me somewhere on the road. I never met one person in this world who enjoys using public restrooms. Every time I use one, I keep thinking to myself "why the hell are people such slobs? Why can't they just be as clean as me?" Believe me Hannah if everybody was as clean as I am, the days of seeing all kinds of trash on the streets would be long gone. In fact I chew people out who I see carelessly littering in this great country of ours. As corny as it might be the old crying Indian commercial must have really worked for me http://www.youtube.com/watch?v=m4ozVMxzNAA
 
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miserable_sob replied to hannahleigh89's response:
I understand what you're going through Hanna. The sad part is they expect you to consume foods that you have no real love for, for the rest of your life. For example, right now I'm sick of Metamucil. When I do buy it I just buy the no flavor Walmart brand. That's mainly because all I can find Metamucil in is that orange flavor, that tastes more like it came from Dupont Labs than an orange tree. So I'm happier with the no orange taste, that I can find in the Walmart brand for less $$ too. Although I can only take so much of that grit taste. I only wish they could at least try to make Metamucil in chocolate flavor. But than again chocolate grit still doesn't sound yummy.

I can also understand why you're anything but happy with the Benefiber Chews. Since I have Fiber Choice Chew Tablets sitting around (looks like I gave up on them) I'm going to try them again. It's just not easy to make a habit out of these things though. I just ate some Fiber Choice Chews, and all I could think was "not bad but they're anything but a pleasure to consume too." I forgot how much I paid for the bottle of them. I'll take your word though that just like the Benefiber Tablets, they too are a total rip.

As for only 2 bowel movements a day, I believe the last time that happened to me was long ago when I still had my colon. As far as my J Pouch is concerned though, I don't even bother to count how many trips I make to the rest room with it. I just try to eat as strategically as possible depending on what my schedule is for the day. That means I try to eat at a time where I know my pouch isn't going to haunt me somewhere on the road. I never met one person in this world who enjoys using public restrooms. Every time I use one, I keep thinking to myself "why the hell are people such slobs? Why can't they just be as clean as me?" Believe me Hannah if everybody was as clean as I am, the days of seeing all kinds of trash on the streets would be long gone. In fact I chew people out who I see carelessly littering in this great country of ours. As corny as it might be the old crying Indian commercial must have really worked for me http://www.youtube.com/watch?v=m4ozVMxzNAA
 
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hannahleigh89 replied to miserable_sob's response:
Haha, I know you understand what I'm going through. More so than anybody else here, probably. Unfortunately for you, lol.

And I COMPLETELY know what you mean about people being slobs. There's just no reason for it. It's sickening.

I tried coffee this morning. I drank two 8-10 oz cups. I was still almost falling asleep on the way to school. I don't know if I just got less sleep or if it's the cumulative lack of sleep over the course of the week, but I seemed more tired with the coffee than I did with the Mountain Dew. It was quite yummy though, lol. Folger's French Vanilla instant cappuccino. I drank it and had a S'mores poptart for breakfast, lol. I put a heaping teaspoon of Benefiber in each cup, and I took two Imodium. I drank a bottle of water during class and half of another on the way home, and I made it from roughly 7:20 until I got home at 2:30 without really even needing to use the bathroom. So I guess the coffee isn't too bad if you add Benefiber to it.
 
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miserable_sob replied to hannahleigh89's response:
I'm afraid I can relate a lot to the life you're living too now Hannah. Although didn't you say something about a misdiagnosis and they gave you a pouch even though they suspect Crohn's is your problem? If so we have our differences. Although I'm stuck with a J Pouch now Lactose Intolerant. And living the rest of my life with those 2 demons just plain sucks.

I am wondering how much sleep do you suspect you had last night since staying awake wasn't easy for you? I believe I slept somewhere around 6 hours last night. That sucks but my body seems to know that it's not going to get much better than that. I don't know if I ever slept 8 hours straight after I got the pouch. In fact I remember long before I even came down with Colitis how I could sleep around 12 hours straight if I had the time to do it.

My breakfast was the same as usual, it's not much but I keep it that way so it doesn't come back and haunt me when I try to exercise outdoors in the morning. What I did was rip open one packet of regular flavored instant oatmeal, and added about 5 grams of grounded flax seed to it (I used one of those serving cups that comes in Metamucil) plus some chocolate soy milk and a little dash of chocolate syrup to give it some flavor. I did substitute the flax seed for Metamucil because it's not as gritty as Metamucil and blends right in unlike the gritty Metamucil. I don't believe it has as much fiber as Metamucil has but still the Mayo Clinic recommends it http://www.mayoclinic.com/health/flaxseed/AN01258 I guess that soy milk and oatmeal is a healthy start, even if I add chocolate to it. I got in lots of exercise without feeling that I needed to use the restroom.
 
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hannahleigh89 replied to miserable_sob's response:
Yeah, my diagnosis has been an interesting process. I was diagnosed with GERD shortly after my symptoms first started. Then they added UC to it. Then I went in with pancreatitis from the Azathioprine they were using to treat my UC, and they found inflammation in my small intestine so they changed it to Crohn's. It went back and forth a lot between Crohn's, UC, IBS, and some combination of the three for the next few years. They were convinced it was UC towards the end because I wasn't having much luck with Crohn's treatment and most of my inflammation was in my colon, because the Crohn's treatment had cleared up my small intestine.

They looked and decided it was for sure UC and then scheduled the surgery to take out my colon. They sent off my colon for testing, and it came back positive for UC. Then I had the second surgery where they took out the rectum, because if it's UC, that would have cured me and eliminated any risk of cancer. They also made my pouch during this surgery. They sent off my rectum and it came back positive for Crohn's. The I had the third surgery and they attached my pouch. They said because it was Crohn's, there was about an 80% chance the pouch would take, and 20% I'd end up with an ileostomy forever. And if I get Crohn's in my pouch, it could still go to that. But for now, it looks healthy. So I had UC and I still have Crohn's.

I slept from around 12 until 5:30, getting up every 1.5 to 2 hours to use the bathroom or take Clarabelle out. I'm usually in bed for around 12 hours, prior to school starting anyway. But that involved watching TV until I fell asleep, getting up 5 times to use the bathroom, and taking Clarabelle out whenever she indicated she needed to go. And getting up at 6:30 with the boyfriend, then going back to bed until around 2PM most days, still getting up every couple of hours to use the bathroom. I haven't slept solid through the night since before my surgery. I'm a really light sleeper though. If the boyfriend rolls over, it wakes me up, and I have a Tempurpedic, so it isn't even the motion transfer. I just wake up a lot, and it takes me a long time to fall back asleep.
 
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miserable_sob replied to hannahleigh89's response:
My sleep pattern was almost the same as yours last night. Although I'd call it a bad night. That's mainly because I felt filled with gas. Although I fell asleep around 11 and woke up around 4:30 AM with one trip to the bathroom. I did take one Benadryl before I went to sleep so I could get back to sleep faster if I woke up in the middle of the night. I believe that does work. It doesn't put me to sleep any faster though or extend my sleep either.

Hannah if I would have known more about cases such as yours and others when it comes to misdiagnosing UC and Crohns, I don't know if I would have chose J Pouch surgery. Although my gastroenterologist never suggested any chance that I had Crohns. My grandmother supposedly had it though if her diagnosis was correct that is.


I was thinking you need a bigger bed, but after Googling Tempurpedic I can understand why you're in no hurry to replace it. Between that and the dog. I can understand why you want Caffeine to wake you up. In my case though I can't say drinks with Caffeine in them made any difference to me. I just hope I get more sleep tonight. Yesterday was kind of different for me when it came to eating dinner. At least today if there's no surprises, I'm just going to stick with eating the same old, same old.
 
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swvagirl responded:
Hannah,

According to my Gastro he says that soda is better because it has only about 20 grams of caffeine as opposed to coffee or tea that has about 5 times that. He asked me if I had any vices and I said caffeine, he asked me coffee or tea and I said neither, Pepsi. He then said oh don't worry about that, it has way less than either of them. Hope that helps!

Sarah
 
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hannahleigh89 replied to swvagirl's response:
That does help. I just don't want to worsen my diarrhea by adding all the sugar and fatten myself up if I have an alternative. I guess I'll just have to see how it goes.
 
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mindyj1971 responded:
Hi Hannah! I'm sorry that you are struggling...I remember the stress of nursing school and the clinicals and all of that.....and it was way before I got sick.

I don't drink pop anymore because the carbonation makes my bag so full of air....I can't stand it. I, too, must have my caffeine every day though. I have been drinking Vanilla Lattes...you can buy them in packs of 4 in the coffee aisle. I buy the Kroger brand because they are a little less expensive than the Starbucks, and I actually like the flavor a bit more. I usually mix mine with Vanilla Boost for the extra nutrition and it is pretty tasty. Might be something that you would be able to take instead of trying to pack a lunch every day.

Hope that you find a schedule that works for you so that you are getting plenty of rest and getting your school work done, too. Just take it easy on yourself, ok?

Big hugs, sweetie!
Mindy


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