Ok I have decided to be brave! HELP!!!
#187598 - 06/20/05 05:04 PM
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daliatree
Reged: 07/10/04
Posts: 1176
Loc: Manhattan, New York
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Well the fact that I am typing help in capitals really helps illustrate how brave I truly am....:-)
Anyway...today I met a new gastro referred to me by my amazing new GP and he LISTENED to my story - he didn't say 'you look great - go out in the world and take your mind off it all' - 'ok you IDIOT, don't you think if I could leave the bloody toilet that I would be out enjoying myself?????'.
Anyway - after ten years os IBS - and the last year of being A instead of C following a tummy bug a year ago, he has convinced me to have a upper GI barium series and a colonoscopy. Ok - I am sooooo scared of these, mainly because I am phobic of puking and I am so worried that the prep for the colonoscopy and the barium thing is going to make me sick. I HATE being empty inside, it makes me feel so nauseous eg like after lots of D - the prep sounds like a nightmare (apart from the fact its a really good excuse to drink lots of coke for once, which really helps nausea for me). I have a choice between taking 3X 8 fluid ounces of fleet phospho soda OR 40 tablets with water...he does not need/want me to take that huge gallon thingy, which is a relief in itself.
Which one is better? What do I choose?
Also, my IBS has been draining me so much and no diet intervention seems to be helping - I am not one to pop pills but am at the end of my tether psychologically - he gave me levsin - how is this drug? I popped one this evening and it made me feel floppy and kind of blurry eyed but my belly seems callllllmmm (don't want to speak to soon but if it is I think I am going to dance around the room with joy!) - I had a long nap. Of course I hope the floppiness isn't a side effect and is just because my IBS had me up part of the night - but in all likelihood it is...so give me your experiences on levsin! He has told me to take it twice a day.
Thanks XXXX
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Feel the fear and do it anyway!
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You'll be FINE!  I had my scopes done before I found this site so I had no idea what it would be like and didn't have any expert adice on how to prepare! BUT...I got through it. The D was truly horrible, but no throwing up at all, promise. And to be honest, the D was so horrific and I was then so tired that I was falling asleep the instant I got off the loo, that I didn't have time to feel empty (which makes me nauseaous too normally)...and in the morning I got the procedures done and it was over! 
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attn:daliatree
hi i am also NY'er with IBS ---i am looking for a good GP and GI...who are you going to that you like so much????
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When I went to the ER a few weeks ago, the doctor gave me Levsin to lessen the horrible, horrible stomach cramps I was having. I've since read that it is used for patients with diarrhea, so even though I have a prescription, I have yet to take it. It certainly made me feel a lot better, though.
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Elizabeth
all those years it wasn't IBS - it was celiac!
send me an email: liz@dopple.net
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hey thanks! did it make you feel all weird and floppy and spaced out...kind of stoned?
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Hi Dalia!
I've never tried the pills but I can tell you about the phospho soda. I've tried the gallon of water one, and compared to that, the phospho soda was a breeze. BUT!!... it will make you sick to your stomach for a short time. I never threw up, but I felt like it for about a 1/2 hour after taking it. Once I started going though, it went away. The good thing about the phospho soda is that you don't have to drink a lot of it and it's quick and painless (no cramping). It tastes really yucky, but by adding something like Crystal Light to it, it goes down a little easier.
You should try doing a search on the pill one, I'm really not sure if it's been discussed. Is it something new??
I know you're scared of the throwing up thing... I don't really have any words of wisdom in this department, except to say, I'm sure you'll be fine. We'll all be here for you if you need us though!
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~ Rachel (IBS-C)
If life hands you lemons, make lemonade!!
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Quote:
I have a choice between taking 3X 8 fluid ounces of fleet phospho soda OR 40 tablets with water...he does not need/want me to take that huge gallon thingy, which is a relief in itself. Which one is better? What do I choose?
I haven't taken the tablets, but I have taken the fleet phospho many times. My doctor said I could have anything that was clear, which ment jello and koolaid were on the list. That was a BAD combination with the fleet phospho! I still haven't had jello or koolaid since.
The next time I did it, I tried it with chicken broth and flat 7-up and did great. The chicken broth helped keep me full, even though it was just broth.
Quote:
Also, my IBS has been draining me so much and no diet intervention seems to be helping - I am not one to pop pills but am at the end of my tether psychologically - he gave me levsin - how is this drug? I popped one this evening and it made me feel floppy and kind of blurry eyed but my belly seems callllllmmm (don't want to speak to soon but if it is I think I am going to dance around the room with joy!) - I had a long nap. Of course I hope the floppiness isn't a side effect and is just because my IBS had me up part of the night - but in all likelihood it is...so give me your experiences on levsin! He has told me to take it twice a day.
I LOVE levsin! It's the only thing that works for really bad attacks. However, it does cause the goofy drowsy feeling, so I don't really take it that often. Only if I start to have a really bad attack or if I am going to be somewhere where I really don't want to have an attack (i.e. airplane). When I was taking it regularly, the goofy drowsy feeling lessened - but since I only take it a couple times a month, I have to be careful that I'm not driving home or something when I take it. It is nice when my tummy is hurting at night - instant sleep.
Hope this helps!
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- Jennifer
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I tried Levsin once. I think the side effect that I didn't like was that it gave me heart palpitations and it scared me so I stopped  I'm a big chicken when it comes to new medications. Maybe had I given it time the side effect would have went away? Who knows but I never gave it a chance. Librax made me feel the way you are feeling. It may go away though the longer you take it.
As far as the prep. I did the 3 8oz phospho soda stuff. Only could handle two of the 8oz glasses. I seriously did not need 3 as at the time I only weighed like 80 some lbs. Oh I was cleaned out for sure with only 2 glasses. I found that when I mixed it with Iced Tea or something it was even grosser. People say ginger ale or sprite works good. ALSO if you use a staw and put it toward the back of your throat you really don't taste the stuff. I ate all I could ALL day. I had made up little containers of jello (except the red dye jello's)had a million cups of chicken & beef broth, ate tons of gum and candies. (I'm sure my glucose level was sky high  ) You'd be surprised how you won't feel that empty. I'm emitaphobic BIG TIME and yes I won't lie, I nearly gagged and threw up after the first glass. I ran to the toilet a few times but NEVER threw up. For some reason it stays in. God only knows why! IT's the weirdest thing. The procedure itself it the easiest. You won't feel or remember anything.
Lots of luck and let us know the outcome!
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~~~Lisa~~~
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Thanks Rachel! The Dr said I can take an anti emetic before I down the fleet stuff to hopefully help with nausea...the reason why I prefer it is because the fact there is less volume makes it seem easier to take. Was your nausea awful with it? (sorry OCD emetaphobic questioning here)....Thanks so much for your support!
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Feel the fear and do it anyway!
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Hey Dalia,
I'm sure you'll be fine...my procedure was a breeze I hear you on the nausea/throwing up issue, I'm petrified of throwing up. I had some Gravol on hand for my prep, and I'm glad I did. I did the Fleet and I was fine with the drink, I didn't get nauseous until about halfway through the night...I took two Gravol and it calmed it down pretty quickly and I never threw up.
I've heard from some people that taking some Gravol prophalactically (sp?) helps so you might want to try that.
I've also never tried the pills (they're not available in Canada) but I have heard some good things about it from people. If you have a really weak stomach it might be a good option because even though you don't have to take a lot of the Fleet, it does still taste pretty unpleasant
Good luck!
Kelly
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Thanks!!! Sounds like that stuff tastes really disgusting!! ewwwwww. Glad to hear that you made it through without throwing up though, but sad to hear it made you nauseous. Is there anything I can do to make it less nausea inducing? I mean, is it the taste of the stuff or just the feeling of the stuff that is so grose?
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Feel the fear and do it anyway!
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Thank you for your reassurance! I am going to buy every anti nausea thing on the market hahahahahha! And every magazine to get me through the night! Really appreciate your reassurance XXX
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Feel the fear and do it anyway!
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Actually the nausea wan't that bad... from what I remember. I've had worse anyway... and the fact that it goes away helps.
And you know... I've only ever had to use 2 glasses too. I think 3 is a bit much. Come to think of it... I think I was mostly cleaned out after the 1st... the 2nd just made sure.
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~ Rachel (IBS-C)
If life hands you lemons, make lemonade!!
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Thanks!!! Do you know if it is ok for me to have coca cola as a drink..I love it and it really helps my nausea...(but I don't allow it to myself in general).
The Levsin has totally calmed my tummy but I am like this big floppy spaced out blob! I was just thinking 'this is a great drug for when I just want to pass out when the attacks are bad' - I am glad to add it to my IBS regime, but don't want to make it a daily thing. I find it quite disconcerting to be so floppy and I am useless for all tasks except watching the TV!! Thank you!
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Feel the fear and do it anyway!
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((((((((hugs))))))). Trust me the colonoscopy isn't as bad as it seems. I put off having one for 5 years  and while it was certainly no picnic it wasn't horrible. The actual procedure itself I don't remember and I didn't even feel like throwing up (and I had to drink litres and litres of prep). My mum did though and was told it was because she didn't drink enough fluid with the prep. Follow the colonoscopy sticky well (I didn't have to, it's how the procedure/prep is done over here) and make sure you drink HEAPS! I found gatorade and powerade's were the best  Good luck with it, try hard not to panic (yeah I know, everyone told ME that too and I did anyway) and let us know how you go, or keep popping in to complain about how worried you are
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Amy
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How do you know its ok to stop at 2 and not have the 3rd? Is it that you have water coming out of your bum after the second and that means you have reached your 'destination' so to speak???
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Thanks sweetie! Its soo good to be understood! How are you? I am sorry I have been out of touch..been self absorbed with IBS issues. I hope yours is much better.
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Feel the fear and do it anyway!
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Hey my Drs are on the upper east side where I live...where are you?
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Feel the fear and do it anyway!
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Thanks Linz...you are always soooo calming! Really appreciate the advice..XXX
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Feel the fear and do it anyway!
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If it's a clear liquid only, I don't think coca-cola will work. Too bad they don't make that crystal clear coke anymore. Wonder what happened to that...
As for the levsin, I call it my "alcoholic substance". LOL It allows me to be goofy with my drunk friends and not have an attack at bars (with gross bathrooms!).
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- Jennifer
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hahahahaha...thats hysterical and such a good idea! much cheaper then wine! hahahahaha, I am going to copy you XXX
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Feel the fear and do it anyway!
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When you have just water coming out and absolutely nothing else, not even tiny pieces, then you're cleaned out. That's what my doc told me anyway.
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~ Rachel (IBS-C)
If life hands you lemons, make lemonade!!
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As far as the drugs go....sometimes they will do that to you at first and then once your body gets used to it then you're fine.
When I started taking Modulon for my IBS I was loopy for about 2 weeks and now I have no side effects at all. Your body probably just needs time to get used to the new meds.
Hang in there....try not to be too scared about the tests...we always seem to freak out more than we need to and it ends up going much better than we thought in the end right?
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Hey dalia! Levsin (hyoscyamine) will relieve IBS, make you feel better, and control the D. Unfortunately, it doesn't come close to curing it. I'm going to my gastro tomorrow to see what else is available for IBS. The hyoscyamine has side effects. The eyesight problems have became a problem for me, I'm always blurry and (ha) floppy. I like that description. Fits. The drug can cause short term memory loss, which I definately have. I think the eyesight problem is the worst. I have trouble focusing sometimes. But, as bad as all that is, the D from IBS-and pain-is even worse. I'm tired all the time, too. Sigh. We need a cure. But, if the drug makes you feel better, that's good for now, eh? Sorry I couldn't be more help. If my doc comes up with something better, I'll post it.
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Dalia
#187678 - 06/21/05 03:39 AM
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cailin
Reged: 08/12/04
Posts: 3563
Loc: Dublin, Ireland
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The prep is not so bad really, as long as you are prepared. I didn't throw up at all, just ran to the loo a lot, think mils attack. The stuff tastes like Andrews- you know the powder stuff your Mum used to give you when you were little and had a sore tummy, gassy.
I thought that it would be a lot worse, although I think that subconsciously I ate a lot less in the days coming up to it so there wasn't a huge amount to come out. I drank chicken bovril and 7up on the day, I was only allowed drink clear liquids though so coke wasn't an option.
When is your appointment for? This IS a good idea. We're here to reassure you.
hugs,
S.
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S.
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Glad you are having the tests done. I know you will be glad to know what's what once it is behind you. Levsin is a GREAT tummy calmer! Unfortunately, it gives me terrific headaches! I do find myself having to sleep when I first take one though. Perhaps this will wear off in time. Hang in there! You've got an entire cheer leading team rooting for you!!
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God is Faithful!
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You'll be ok Dalia! You're so cute
Be VERY glad he doesn't want you to do the gallon - I don't know how anyone could get through that!!!! I started out trying to do that and was VERY nausous. She finally switched me to the fleet - but I only had to do it twice, once before bed, and then she woke me up to do it at like 5 in the morning. It's so small you can chug it in 2 gulps...just PLUG YOUR NOSE and don't unplug it until you wash it out with water or juice or something.
You know how nausous I get, and I didn't throw up from the prep at all!!!
I'm really glad you're getting it done! And YAY for good doctors!
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~Cara~
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Dalia I have to go for a colonoscopy soon, Ive been refered but not had the date through yet. I am also not a keen fan of being sick although I wouldnt say Im completely emetaphobic, but I am scared of being sick in public, terrified infact cos its happened before. Im really scared about the colonoscopy too....Im scared about the having to run to the bathroom millions of times things, I dont like that happening when Im not in the security of my own home and Im TERRIFIED of injections...I faint nearly every time so I am so scared of having that to put me out. Just thought I'd let you know you're not alone...we'll get through this together!!!!!!!
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Natalie
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Hi Dalia!
I'm sure everybody's told you that Levsin is just a basic antispasmodic. It was ok for me, but Pamine Forte (another spasmodic) works much better. As for your tests, I understand completely about being scared of them- but I know you'll make it through!!
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hey babe
mine is booked for july 28th...lets do it together!!!! :-)
I used to be reallly frightened of needles but had to have lots of injections to go travelling and lots of blood tests and now I am FINE - its the kind of fear that goes away with practise because it really doesn't hurt that much, unlike puking, which is just as grose as our fear dictates!
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Feel the fear and do it anyway!
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Yay...thanks Cara...you are so sweet for making time to write back to me when you are having such a hard time. You MUST call the Dr. There are things that can help you out there...there must be!!!
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Feel the fear and do it anyway!
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Thank you! Wow, having this board is such an amazing support!
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Feel the fear and do it anyway!
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I've been scoped from the top down and the bottom up - I wont' lie to you, it's not fun, but you'll get through it and be just fine and it's very empowering to at least KNOW!! Be glad you don't have to drink the 2 gallon jug... blech! 
I take Levsin VERY RARELY - if I'm spasming terribly and hurting it does help, but I cannot take it on any kind of regular basis because of the type of side effects you mention and also it makes the C worse over long term (but not just one dose).
GL!!!
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Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)
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Thank you!!!! I honestly felt too floppy to take it during the day - my husband was in hysterics last night because I was slurring my words and giggling etc...it was fun! But I can't possibly study or run errands when on it...its such a good option to have when 'I can't take it anymore'!
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Feel the fear and do it anyway!
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Re: Dalia
#187699 - 06/21/05 06:48 AM
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daliatree
Reged: 07/10/04
Posts: 1176
Loc: Manhattan, New York
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hey sweetie
thank you! I realised I am not allowed coke (:-() but can have sprite!! yay!! and chicken broth etc!
I am having a barium upper GI next wed and on july 28th the colonoscopy...they wanted me to have it on the 21st but thats my birthday! hahahahahha. Any tips for the barium upper GI?
I'm pretty good about drinking grose things...I drink algae wheat grass disgusting juice that makes my family gag, with no problems. I am just going to pretend I am on fear factor etc!!
Thanks darling, love you XXX
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Feel the fear and do it anyway!
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Dalia
#187706 - 06/21/05 07:17 AM
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BL
Reged: 06/01/03
Posts: 3522
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The colonscopy prep is no big deal. I mixed the stuff with Sprite and drank it through a straw (so I didn't taste it). I never felt like I was going to throw up. Later, you will just have an extreme urgency for D! That's it! You can do it!
nd I don't remember anything about the procedure itself. I remember asking the nurse, "When is he going to start?" And she said, "Honey, it's over with!" I couldn't believe it. I even felt fine on the ride home.
I hope the new med works for you. You deserve to feel better! And thank goodness for the new doctor! There are some great ones out there---they're just hard to find.
Good luck!
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Re: Dalia
#187713 - 06/21/05 07:40 AM
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daliatree
Reged: 07/10/04
Posts: 1176
Loc: Manhattan, New York
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Thank you so much...it means so much to have your encouragement. I am going to stick to this board during the prep!
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Feel the fear and do it anyway!
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Dalia,
I have had both of those tests done. They are not so bad. I know you can do it. Just lean on all of us for support! Also, I was on Hyoscamine for awhile which I think is the generic of Levsin. I have to say that I HATED it. it through my body chemistry all out of whack. But, everyone is different, so if it works for you then keep taking it.
All the best and keep us updated.
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Thank you Tommy...you are so sweet! Yeah, I am def saving the Levsin for those days when I can just flop around, I really don't enjoy feeling 'out of it', unless its from wine, which unfortunately these days is out of the question!! Hope you are well Tommy and that your tummy is being good - love must be good for it! :-)
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Feel the fear and do it anyway!
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Thanks Dalia! I am doing well. My tummy is a little wonky today but it will be fine. Love definitely is great. I wake up everyday feeling like the luckiest guy in the world and I know I am.
The Levsin made me feel really dehydrated. I was always thirsty and I had other side-effects too. I am glad I'm off of it but as I said, everyone is different...
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I get so horrendously nauseous with bad migraines and throwing up provides a temporary relief, so I have no problem with it as it's associated with feeling BETTER.  Plus, go sailing on sail-training boats and you get used to alot of stuff.
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You mentioned sail-training boats in your post and I wondered what kind they are? How long have you been sailing? Most trainers and even the large boats in decent swells will prepare you stomach for anything you can imagine. Much better than roller coasters any day! We took out a 61ft sailboat in the Aegean and had some pretty good swells with it and I thought I was going to be miserable from sea sickness, have my IBS act up or both. Fortunately I did great while six others on our crew weren't doing so well. Maybe IBS and sailing go well together.
-Michelle
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Whatever you decide, you will be FINE. We are all here to support you. Remember, we've been through all the awful tests, too. You're a strong woman and you can DO THIS!
I know how you feel about meds, so congrats for being so brave to try one.
Hugs, I'm thinking of you,
Alicia.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Thanks so much. You know, in Judaism we have a word called 'Mitzvah' its hard to translate, but it means 'good deed'. Heather did SUCH a mitzvah creating this board..its such a source of comfort to have met you all and to know there is a place I can come when I don't know where else to turn.Thanks for your support again Hansolo!!
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Feel the fear and do it anyway!
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hahahaha - I do! Hubby has always been talking about installing a pull out shelf next to the toilet that I can put a laptop on...but honestly, when I have D, I lean forward with my head between my knees - it makes the sudden emptiness and nausea easier to bear!
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Feel the fear and do it anyway!
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Thats so interesting! A positive brain association with vomiting! My mum is like that - much prefers it out...I go out of my way not to vom! I love boats actually...find the motion very soothing.
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Feel the fear and do it anyway!
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I always do better then others on the boat. Hubby and I were on the great barrier reef in Australia and people were so green because it was stormy and we were fine! I find bumpy old cars more soothing to my IBS then horrible smooth automatic ones that make me really nauseous.
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Feel the fear and do it anyway!
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Dalia, yes you are very brave. But if you want some answers, you should go ahead with that testing. I had the upper GI and it was easy. Many people here have had the colonoscopy and it seems to be bearable.
I know how frustrating IBS can be. And being ill with other things for that matter. Like you I eat well and try to be very nice to my body. It always dissapoints me when my body decides to get sick. Oh well.
Here's a big (((hug))). 
Good luck with the Levsin.
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Re: Dalia
#187895 - 06/21/05 01:33 PM
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cailin
Reged: 08/12/04
Posts: 3563
Loc: Dublin, Ireland
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Quote:
Any tips for the barium upper GI?
no, sorry, I haven't had one, I had a gastroscopy though,
I WILL email you I promise, started one at work today but I worked 11.5 hours so I got a bit sidetracked!
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S.
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I know....
#187900 - 06/21/05 01:38 PM
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Natalie1985
Reged: 08/09/04
Posts: 1329
Loc: UK - Leeds for uni, Merseyside for home!
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you'd think after all the blood tests and injections Ive had in my life(and Ive lost count....with glandular fever I was in n out for 6 months) but I still hate them. having said that I got throught the flu jab alright this year, the doctor kinda sprung it on me and usually that would make me faint with the shock, I felt a bit light headed but I was fine afterwards....I'll just have to grit my teeth and bare it! Will let you know when my appointment is, he refered me over 6 weeks ago and I still havent heard back...should be soon.
(((((((((((HUGS))))))))))))))
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Natalie
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It's been totally acting up again for weeks now! I only had about 2 good weeks. Even my naturopath has taken me off almost everything she initially put me on, plus I'm starting on my 4th or 5th wheat free diet to see if that helps. Makes sense really, I had major D with the can't eat anything part of the diet so maybe wheat is the problem. Kinda hard when I'm used to eating so much of it and the rest of the family refuses to go wheat free with me. Otherwise I am okay Hope your tum sorts itself out soon. D is SO yucky 
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Amy
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Dalia,
I'm also wondering who your GI doc is. I'm in Brooklyn, but can get to the upper east side of course. I'm in between docs due to my colonoscopy actually. I wanted to have a different prep than my GI gave and she wouldn't consider it. (I'm emetaphobic as well, which was guiding my prep choice) so I went to another doc for the colonoscopy and my GI dropped me from her practice! Anyway I need to find someone new.
Dan
ps I just posted after you on the support group site, maybe there are enough nyc people that we can get a group going.
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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