One more try
#168057 - 04/07/05 02:31 PM
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Ganny
Reged: 05/02/04
Posts: 27
Loc: Oregon, USA
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I began the current postings about April 2 or 3 (can't remember). So far either I absolutely do not know how to find my way around OR I have questions that are unanswerable or not of interest. I spend a HUGE amount of time on here looking for any answers or ideas while I'm in a bad spot with IBS and diarrhea (first time in over a year).  I was VERY acute just over one week ago which finally nudged me to post regularly rather than here and there as I did from 2004. (I honestly have never heard from anyone but Heather, and that was in e-mail and one time by phone regarding a purchase.)
I have really, really tried to find out how to use the boards. I do open every topic and subject, and I read and enjoy the posts (and also answer if I think I can help).  But my notes are going unanswered for some reason. If I knew why I could correct whatever I'm doing wrong. 
So, the only thing I can think of is to suggest maybe someone might e-mail me and help me figure out what is wrong with my posts or the way I use the boards. I'm starting to look for other IBS support groups at this point, but I hate to give up here. I have Heather's book and I've purchased the fiber several times. I thought I found "the answer" by using soluble fibers until I got "hit" with this last diarrhea and cannot eat anything I cannot see through plus the fiber doesn't work just now. I'm seeing my doctor, and he has ordered a stool test (may be some "bug" from doctors giving me too many antibiotics over the years...grrrr).  We will know next week. I may see a gastroenterologist. Not sure there will be help there. I've tried too long without much help for years. This man I see as my personal physician is very sharp, thorough, speaks on my level (I studied and worked in medicine for many years so I do a LOT of research. Right now it's IBS, infection, diarrhea, even the surgeries I had for an infection from old sutures and/or "bug" causing necrosis.) If mentioning surgery is why I'm not answered, let that part go. I HAVE IBS. I've had it for probably 40-odd years. The problems are separate! I mention this in the hope of finding someone who has had similar experiences to mine. (I'm against hysterectomies if at all possible in view of what I have gone through! Especially I'd never have another vaginal hysterectomy! Check out the H.E.R.S. Foundation for more info on this.)
I just really need to find a few people to chat with. I'm isolated because of the above. I rarely speak to a soul. No one comes by as old friends and family have either died (i.e., parents, sister, aunts/uncles/cousins) or just moved away from area and are too busy to keep in touch. The risks of being single are raining down upon me. People do not give much anymore I find (used to be we helped each other, and in my family we all took care of each other...I'm the youngest, I was my parents' caregiver for years, my sister's nanny a lot of the time as she was older, and a whole lot more. My children have too many problems to care so I'm really alone). I handle all of this very well all things considered. I love to walk, take photographs (have a website with my photos), work at home WHEN I can find people who need my specialities. Amazing how I do manage alone. I just do. You do what you have to do. But lately I KNOW I need to "push" for new friends. First place I can even try is here since I can't count on my gut to be out much.
Anyway, that's what's going on. I'll wait and check back here and there and hope I get a bit of instruction from e-mail since I'm lost I think (I wrote to the contact e-mail in support area too).
I've mentioned it in other notes, and I love the idea, that most places where I chat (not IBS but other things including computer stuff) always send an e-mail the instant I am answered. This is WAY cool, and I'd urge the "powers that be" to investigate this method here. It saves checking every hour 24:7 and you know exactly where to go as the link is in the e-mail.
You're all doing a GREAT job!! Keep it up. Many people are getting a lot of support here. I'd just like to join in if at all possible. 
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Hello and Welcome. I'm sorry you didn't get any responses to your previous post, sometimes things do get lost in the shuffle!
I'm glad the dr is running some more tests for you right now, hopefully they will get to the bottom of your troubles. I'm not exactly sure what your question is though? If you have an IBS question, this is the right place. If your looking for someone to chitty-chat with than check out the Living Room Section of these boards! 
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Taking it one day at a time.....
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Hi, well i found your post but I think thats coz we may be in the same boat, I have no idea about how to get around this site, and like you i,ve added posts and they're all left unanswered, so either im particuarly uninteresting or im doing something wrong!
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Posting...
#168084 - 04/07/05 03:24 PM
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Suze
Reged: 02/24/05
Posts: 30
Loc: Virginia
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can be confusing! There is a lot of activity on this board, so if you don't check back often, your posts can be many "pages" back. It's easy to lose them!!
Yes, IBS isn't much fun. All of us can empathize! Sounds like you're doing a lot of the right things. One of the things that keeps IBS "interesting" is you can go along feeling great, and then for no apparent reason, you get zapped. Are you keeping a food diary? Following Heather's diet? I've found that sometimes the smallest transgressions can have a big impact...especially when I'm mostly eating soluble fiber foods. My guess is that food is more quickly absorbed into my intestines when I'm just eating soluble fiber, so one bite of "bad" food is all I need to have my insides rebel.
Like you I've had IBS for many years. You're lucky to have a doctor that you like. I'm extremely reticent to talk to doctors about IBS...I don't want a bunch of invasive tests, and I don't want drugs. This website is by far the best thing I've found.
Hang in there! I don't think you've been ignored on the boards, I just think you need to check back often!!!
Take care,
-Sue
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I don't quite understand what your question is, either. But welcome! I'm sorry your first question went unanswered; it IS a very busy board, especially during the week, and a lot of posts get lost in the shuffle. I've had posts go unanswered too, and I'm a moderator! Don't take it personally - it's not you, I promise! 
An easy way to keep track of posts is to put them in your "favorites". Towards the bottom of the page, there should be a link that says "Favorite thread! (toggle)". If you click on that, the post will be added to your favorites, which you can then find very easily the next time you log in by going up to your "My Home"... it'll be right there, listed on the right side of the page.
Unfortunately, we don't have the capability of adding email notification, so adding posts to your favorites is a pretty good option.
Again, welcome! Don't be discouraged... it's a big board, and it takes a little getting-used-to.
PS - I'm glad you're getting more tests! Good luck!
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Thirding...
#168190 - 04/07/05 11:57 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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...and I've answered all your posts I've found so far! Occasionally things do get lost in the crush...I check in everyday and still have about 4 pages of posts to answer ON THIS FORUM ALONE!
If you ever find a post of yours (or someone else's if you're feeling helpful) that hasn't been answered, then reply to it and just put "bump - nt" in the subject line with no extra text. That'll bring it to the front of the forum and will make it easier to spot! 
If you want extra help while you're still trying to get the hang of it, feel free to email me (quite a few of us will help out on email if you need it). My email address is in my profile (just click on my name to get there)...actually, it's lindseyquarrie@hotmail.com
Stick around...this place is far more helpful and knowledgeable than any of the other IBS forums I tried. Plus, some of them are HARDER to navigate. 
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I've been on these boards for quite some time myself and I still get messed up with new posts, posts I've already read. I think it gets easier each time you use it.
You'll get people to reply- they always do..
Welcome, this is the place to find answers to alot of your questions.
The people on these boards have alot of knowledge and experience it on a daily basis- which is great because it is so much easier talking with someone who kinda knows where you are coming from.
Melissa
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Melissa
Pain predominant w/occasional C.
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To all who responded: I found out why I was so lost. I was marking "favorites" but had no idea how to find them. Just now (after many many tries) found "My Home" and edited some stuff and saw my favorites there with all the links! OY! So I want to thank you, one and all for responding.
Someone asked about food diary and if I'm following Heather's helps. I kept diaries for years on a daily basis, and I still do off and on. I think I'll just do foods and not put in everything else (I was tracking emotions, happenings of the day, everything). I don't even like to read them for the most part. I'll do it more simply with foods and symptoms (I know it takes about three days for foods to "show" themselves unless we are in "rapid transit" times!).
I have to keep trying my own ideas coupled with Heather's plus an old doctor in Idaho who's worked on this for maybe 40 years. He's amazing! I can't figure out how to get around the egg whites. They seem to be just about everywhere. I have egg substitute, but it's NOT like real eggs. A little in quick bread or muffins here and there isn't bad, but if I keep repeating, I notice it acts like when I use any "cow's milk." The casein really gets me.
I change by the day, the week, the month. What works for a while falls apart another such as the mess I got into a week ago last Wednesday. I may have had tainted salad from deli (I know, I should not do that, but I love the stuff)! I was "hit" about 12 hours after eating the salad (meat, bit of cheese, creamy dressings, creamed salmon in pasta, fake crabmeat...not HUGE, but enough to get me). The store doesn't hear me on this. This caused a trip to ER about midnight Wed. night. IVs to rehydrate me, two antibiotics IV that made me feel more sick, barium CT scan. Showed a mild inflammation of colon. I felt like flu until I woke up yesterday (Saturday). I tried a little bit of well-cooked white rice. Two-three hours later I got "hit" with diarrhea. Not the end of the world, but if I were to try that several times a day or maybe even two days in a row, I would more than likely wipe out again. I've lost about 15 pounds I believe (no love lost there!).
My question when I once more came April 3 was for ideas to get through the acute stages of whatever hit me that morning. I felt desperate thus the anxiety in my notes. I still don't know how to pull out of a nasty "D" attack. In the past it would run weeks, even months with me on clear liquids to survive. I would lose far more fluids if I ate, and I've proven that! I tried the fibers (the Acacia and some Benefiber) with this to no avail. Seems to end up with diarrhea.
I'm wondering if I should try at least once per day to eat a bit of rice and Acacia and/or Benefiber. Any ideas. I don't want to be doing this through the summer as I did before my surgeries 2002 and 2003! I thought this was behind me! I worry for the future then realize that's not the answer. What will be will be. I just don't want to lose more colon. I almost bled out completely Dec. 2003, and that still haunts me how close I came to not being!
Thanks for your great helps! I usually stumble around on anything and eventually find the answers. I just was very anxious for helps on the first few and worst days of this. Now it's how to get past the weirded out gut. Seems the gut brain is not communicating right message to big brain. I can go along in a spell like this for a long time and suddenly I just KNOW I can eat normally, and I do. It's all over. It's the strangest thing. How much of this is within mind control I wonder, and how does that happen? To be not okay one hour and suddenly "KNOW" I can now eat. Beats me! 
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Just small things, but they might be helpful to note anyway.
Definitely avoid ALL dairy products. No milk, no cheese, no butter, not even any yogurt. It's a well-known fact that dairy products are IBS triggers for more reasons than just lactose - yep, for many, even casein is a big trigger. That problem with cow's milk isn't your imagination, nor is it coincidence!
I'm not sure what egg substitute you use, but if you're using Egg Beaters, be aware that they are 99% egg whites - and it sounds like you're trying to avoid egg whites, right? (Or am I misunderstanding that?) For baking purposes, there's a product available in health food stores called EnerG Egg Replacer - it's powder, it comes in a fairly large box, and it's completely vegan & egg-free. That might work better for you.
I know you're combining Heather's diet with your own ideas and those of this doctor, but I really highly recommend trying to follow Heather's diet alone, strictly, down to the letter. I won't lie - you might not see immediate improvements, but the improvements will happen. I was a pretty hopeless case myself, so I thought, but a year later, I consider myself *basically* stable, and it's wonderful!
Some of your food choices just sound to me like they're huge IBS triggers... salad, cheese, creamy dressings, creamed salmon... anything "creamy" or "creamed" is generally to be avoided, unless you make it yourself using soy milk, no butter, and very, very little oil. Salad is actually ok, but not till you're stable, and always eaten safely, with a good chunk of bread first. I'll be totally honest - if I ate those foods, I'd be in the hospital for a week! I was eating like that a little over a year ago, and right after that, I hit "rock bottom" with this disorder, and it's seriously taken me most of a year to climb back out and be somewhat healthy again. When Heather says something is a trigger, she MEANS it!
When you have diarrhea, do you ever take imodium, kaopectate, or anything of the like? A lot of us swear by those over-the-counter meds when trying to get stable or pull out of a bad attack.
Speaking from personal experience, it is pretty important that you try to make yourself eat, even if you know that it's going to come right back out. Soluble fiber foods are best - white rice, pasta (no sauce! no butter!), white bread, white potatoes (no skin), and bananas. Drink plenty of water, too. Try some nice strong peppermint tea - the taste takes a little getting used to, but it's an antispasmodic like no other. It's not really a substitute for an antidiarrheal medication if you're in the throes of a REALLY bad attack, but it will definitely help.
Good luck - and keep us posted on how you're doing!
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