desperate for anything to help
#142455 - 01/25/05 11:07 AM
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taroh73
Reged: 12/28/04
Posts: 184
Loc: chicago, il
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I've been fighting this IBS since childhood (am 32 now) but the past 10 years has been excruciating as far as running and it sure feels like ruining my life. I'm just wondering if anyone on the boards here has known anyone or heard of anyone who has had surgical procedures that may have been helpful. The last doctor I visited spoke briefly with me about removing part of my colon. It sounds scary and drastic, but I'm sure you all would agree that if it means having a life again, anything is worth it. Anyone know anything? I've tried researching but haven't found much. Any advice would be greatly appreciated. Hope everyone is feeling well today!
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As far as I know, surgical colon removal will not help IBS at all and could make it alot worse. I would be VERY sceptical of that last doctor.
You haven't been on this diet long, have you? It took me about 6 months to stabilize, but I did and at one point I thought I was dying from IBS!
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I personally have not heard of anything- There are alot more people on this board who have more experience and knowledge than myself though.
I was diagnosed in January 2004 (roughly) and all I was ever told about was diet, sfs, antispasmodics, and anti depressants. never any surgical procedures. I got initally diagnosed by one GI then went to another one for a second opinion and neither doctor mentioned anything of the sort.
What did the doctor say this removing a portion of the colon would do- Will tha piece coming out make all your pain go away?
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Melissa
Pain predominant w/occasional C.
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I don't know if I'm replying correctly?? Still trying to figure this out. The doctor I spoke with didn't really tell me much about what surgery could do- he just brought it up but we didn't discuss it much. I don't have too much pain thank god, but my bloating/distension is severe (hurts to take a breath in a lot) and I feel like my colon seizes up with huge airpockets that just get stuck in the middle of my belly and are agonizing.
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I have only been on the diet a few weeks, although I'm having trouble with eating much of anything other than bananas, pasta, and cakes. Really any fruits, veggies or meats are too much. I've also been taking a 1/4 tsp of acacia a day for about 3 weeks and I think it is causing me major gas. So i'm a little frustrated. I didn't realize it could take so many months to stabilize on the diet. How do you know what is/isn't working after that long. Sorry I am so negative right now, just really frustrated! But thank you for all of your advice.
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The next time you see him make it a point to discuss this again, in more detail. I myself am not in tremendous pain- I have cramps ALL THE TIME- especially after I eat. The cramps make me feel like I have to pass a BM and I usually don't - Once I go in the morning I am usually done- Although sometimes I will go again during the day. I have alot of gas too- My belly becomes so distended and bloated I look like I am 4 months pregnant by the middle of the day. The only time I feel okay/normal is first thing when I wake up- No distention, no cramps. WONDEFUL- then once my body "wakes up" and I get that first bit of food in me- the cycle begins. Sound like yourself?
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Melissa
Pain predominant w/occasional C.
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I think you need to try to start getting some other foods into you- That doesn't sound very healthy. As for knowing if something is working- I don't know myself. I eat what I should, I take SFS and I still have pain/discomfort so I am somewhat in the same boat. I am frustrated myself- I am not social anymore- I don't want to go out with my friends- I used to go out to eat with my husband at least 2ce a week- I haven't been in a restaraunt in over a year. And I miss it- Then I worry that my husband will get bored with me because I am so "down"- which brings on the depression etc.. It is a vicious cycle.
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Melissa
Pain predominant w/occasional C.
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I actually have gotten to the point over the last 2 years where I'd told my Dr's I'd consider surgery if it would help my bloating, pain, and C. I'm being repeatedly told I have a "tortuous colon" and then it's just blown off like, well, live with it. Drives me crazy. However, I think surgery for our conditions is WAY out in left field - the specialist I saw at UNC said I'd basically have to be dying for him to even consider it. Some days I feel like I am dying and feel like BEGGING to die ... but I am not dying. And I have had surgery before (different kind)... it aint no picnic. Recovery stinks, too. Anyway, with all that said, here is something I found online about it and my mother in law keeps wishing they would do it to me but it doesn't seem the wise choice right now and any doctor I've even brought it up to has looked at me like I've lost my mind. I am NOT advocating this, I don't even know a thing about who put this link up (it's from Russia, I just noticed, interesting)... I'm just saying this is the only thing I've personally ever seen on it at all: http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijs/vol3n2/hemicolect.xml
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Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)
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Oh my gosh girl...... I totally know how you feel. Don't get down! We can still laugh right!! One thing about bodily functions..... they cause us so much misery but they are still funny and gross. I feel for you about not wanting your husband to be bored w/you. I'm 32 now and I really haven't dated much for the past 10 years b/c I cannot function normally on a social level. And I worry that if I did find someone it's too much to ask of them to be a social pariah. We should all move to an island together where everyone just knows and understands. Does your husband ever read the boards to get more of an understanding? Feel better 
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Yes, we definitely have some similarities. Morning (first thing) is usually okay, but not always. But like you, as soon as anything passes my lips it's like Russian roulette. What's gonna happen. And the pregnant belly- is probably one of the most frustrating things for me. If you are like me you feel soooooo fat inside that looking in the mirror and seeing that makes me want to cry. As if being a woman isn't a big enough bit*h- add IBS. Since moving into this diet I have gained about 7-8 pounds in a few months which is only making all of that worse. Are you able to lead a fairly normal life?
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Thanks for the words of wisdom- I agree about the island. That is why I love coming to this board where people understand more. I wish everyday that I could meet someone in my hometown who has the same issues so that we could go to lunch together and talk on the phone about every little thing. Because no one understands unless you've been there. No my husband doesn't read the boards. I think he thinks it's all in my head. The minute he heard every test I had done came back negative he kind of looked at me funny.. Now he just listens to me complain. He doesn't understand though. I know he doesn't. My friends don't really know much about IBS themselves. They just know I have it and that I don't go out anymore. I completely understand how you feel about dating etc... I think if I were to be single tomorrow- I would probably be alone. I can't say that for sure. But the way I feel every day I don't even want to go out to socialize with my forends let alone try to find someone to become intimate with. 
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Melissa
Pain predominant w/occasional C.
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Aww, I understand. I think the absolute worst thing about this disorder is the emotional isolation and dealing w/other people thinking its all in your head. You should let your hubby read some of this stuff.... maybe when he sees that men and women all over the world suffer in the same way, he'll realize. How old are you? I didn't read your bio? Do you ever think of having kids, or do you have them?
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Thanks for the information...... I have to admit, it sounds so tempting to do something like that. But there is always the fear of something going wrong. I couldn't handle this being any worse.
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taroh
#142611 - 01/25/05 02:40 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Okay, watch it with the cakes!  I piled on quite a bit of weight after I got settled on this diet as I was so delighted to find "fun" food like brownies that actually made me feel better, not worse. But if you're already thinking about weight gain, try and avoid them. If you have to have some cake, try and make sure it's one of Heather's breads so that you're at least getting some fruit or veg!
Are you D? Sorry - bad memory!  If so, I really wouldn't worry about incorporating more IF into your diet until you see the good effects of the diet. Now I do NOT mean only eat pasta...there are so many SF fruits and veggies, or ways of eating them totally safely (peeling and cooking for example). But I really feel it's important to give your body enough of a breather to help it get back on track. For some people, that can be just a few days. With me, I was on a no-trigger diet for about a month. I ate loads of applesauce, bananas, avocadoes, mangoes, cooked carrots, etc. so it wasn't that unhealthy. And for me, at that stage, adding IF only meant I had bad D so all the nutrients were going straight through me! You do need to get some protein though...make sure any meat you do try is lean, chicken, cooked with no fat. And eat lots of fish and soy as well!
I found that following a really strict diet helped me almost at once. But it was at least a month before I would have said that I was feeling noticeably better. And then there were setbacks as I reintroduced stuff - when I wasn't careful or did too much too fast . That's why it took me the estimated 6 months to feel that I was stabilizing - when my symptoms wre no longer a regular part of my life! 
Good luck. And perservere!!!  It's worth it. Unfortunately there is no "quick-fix" for IBS. It doesn't exist. Anyone considering surgery for IBS is crazy IMHO...there are soooo many cases of IBS developing or getting alot worse BECAUSE of surgery and no scientific reason for the surgery. As most of us know, IBS somehow affects the entire digestive tract - how would removing pat of the colon help that? Don't go there!
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I would get a few other opinions. Ibs is a motility problem of the smooth muscle of the gut. With that said you really have to wonder , What part of the colon is he going to remove?????. When a part of your colon is removed that has it own consequences such as malabsorption ect. I in reality have never heard os surgery for IBS unless what you really have is IBD.
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I totally understand your frustration. I sometimes wish I had a more serious disorder that had a fix. My sister has Ulcerative colitis and had a severe flare up about 6 years ago when she was hospitalized. But now she is on meds and doesnt have any problems. But there is always the risk of another flare up. So really I guess I am fortunate. It is annoying how people dont understand this and there is not any good treatment. My dietary needs seem to change all the time so no one knows what to think. A big frustration is also not feeling social at all. I know I will have terrible bloating if I am over at anyones house for more than a little while and definitely cant eat most things at most mainstream restaurants. Plus, I dont feel like going out to bars when I dont drink anymore. (I am 24, in med school, so some of my friends go out occasionally). I havent been out this whole year. I also get so tired of having to carry a giant bag of food around when I go away for a couple days! But there is no way we can expect to find what we need where other people are eating. I just hate how I feel like this concern over food/ bowel movements controls my life. It regulates all my actions, emotions. I have had a really great past two days, went 4 times yesterday and once today!! I am C so this was huge! I attribute this to my staying home from class and studying at home so I was on my own time. Also have started taking two probiotic capsules a day.
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Taroh73:
A doctor who recommends surgery for IBS has absolutely no idea what IBS is or what causes it. Well, the cause isn't 100 per cent known, but I believe one of the prevailing theories is that it is caused by a reduced amount of a particular chemical that is transmitted from the brain to the gut. Now, how in the world could surgery remedy that?
I've had IBS all of my life (46 years) and I've been very sick over the years. However, I now control my IBS very successfully with Heather's diet.
If some doctor told me I needed surgery for my IBS, I would think he was crazy -- or, if I was living in the U.S., I would think he was just trying to make some money on me.
There is NO surgery in the world that can remedy IBS. And, at the present time, there is no easy solution for IBS control. It's basically you've gotta follow Heather's recommended diet and lifestyle.
Sorry to be so blunt!
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As depressing as all of this is.... it is so nice to know there are other people who understand EXACTLY. I am so sick of trying to explain to people why a social life is next to impossible most of the time! Well meaning friends and family look at you and say or think "well you don't have to go to the bathroom every 5minutes and you look fine- what's the problem?" (I'm a C as well). There is just no way to explain to them the agony of what goes on inside our bodies 24/7. I do and have done everything youdo.... the bags of food, the isolation and fear of social situations, the constant change in diet that doesn't seem to work. I totally understand that it does control your life. And there is nothing worse than the people who think this is in our heads. Good for you for going to med school... are you gonna be a gastro?? Just keep hanging in there. I was in grad school at your age, and that's when things started getting REALLY bad for me. And 8 years later I have just found this website. You are ahead of the game! Do you already have a b/f, or do you find that this also impedes your ability to date? Feel better 
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What is a probiotic tablet - I am somewhat new at all of this - but not new to IBS!
I was just accepted into med school and becoming anxious!
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Hi, Thanks for the reply. I am actually thinking about going into GI. I had been planning on OB/Gyn before, but I think I could use my experiences as strengths in GI. Also, since my sister has colitis, I have a lot of personal experience with this stuff. Hopefully I will make it! I have felt a lot better the last few days cause I have stayed home to work on my own. Guess I just need to find a good schedule that works for me. I am actually married. I had been with my boyfriend for 7.5 years before we got married (last July!). Luckily we have known each other for even longer and really are completely comfortable together. I really dont know what I would do without him. He is wonderful and so understanding. He even eats my tofu and veggies and fibery foods most of the time. I think I would be a hermit and just live in my own little world if I was single. A lot of people here in Chapel Hill are vegetarian/vegan and do pilates and yoga and run a lot like I do, but I still would have to deal with the gas and bloating. Sort of impinges on your desire to go out, and could be embarrassing in an intimate situation. I also think I would not take as good of care of myself and would probably still have an eating disorder that would have gotten totally out of hand. He really keeps me keeping good care of my stomach! Good to talk to you! Good luck, you just need to find someone who has some sort of other quirks or something so that they understand! I am not sure where to find nice guys though. I have known all my good guy friends through Billy and college.
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It has lactobaccilus and acidophilus and other bacteria that help recolonize your colon with the appropriate balance of bacteria. I happen to know that I have an excess of methane producing bacteria from the breath test. So the beneficial bacteria are supposed to help digestion I suppose. I think it has been working cause I have felt better the last few days. What med school are you going to?
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Thanks for your words of encouragement
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Hey this is my first time at this. I just got out of the hospital in Dec. I went in 3x and a lot of test to find out I had IBS with ovian cyst and my bowls where growing to the side of my wall inside. I am having a hard time dealing with all of this and I found this site. I was told 2days ago I have to change my diet completly. I think I have had this for 2 years but since I dont have my gallbadder taken out 7years ago nothing has been the same since. BUT since I got out of the hospital I can not stay out of the bathroom and everything runs through me like a tube from my mouth to my bottom about 6inches long:)I am so misserable. My boyfriend is so understanding but i am so tried and stressed out. Besides the fact I hate the bathroom thing anyway i have to live there now. The other night we went to eat out and in that time i went 6x and so imberresed. Its like I dont wont to leave home. I sell townhomes in colorado and its 3 storys nightmare on my stomach. My drive home is 1hour running to the bathroom when i get home my kids think I am funny but they have no I diea the pain I am going through. Its almost like death to eat anymore which I love everything. Dairy is my favorite and now it just kills me evertime i eat it. I am going to try this special diet thats on this site I hope it works. Its going to be hard when I have a 18 and 15 and boyfriend that loves to eat. Does stress make IBS worse. No one understands me in my family. I think they think I am making this up. I really want to be heathy again the dr's put my on dycylcomine but I dont think its working. They didnt seem to really know that much about IBS and I think they are guessing. Is there something better to take?? Help in CO
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I have taken acidopholous (?) before and it did not seem to help. I was just accepted at University of Illinois-chicago campus - where do you attend med school??
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truenorth
#143236 - 01/27/05 12:09 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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you say you've had lots of tests - have you had a colonoscopy? That's pretty important. ALso, have you been seeing a GI?
Read all the diet guidelines and get started! If you love to cook and eat, I'd really recommend "Eating For IBS". It's full of fantastic recipes off really yummy food. My DH loves food too and he loves Heather's recipes. We hardly miss anything we used to eat.
Stress definitely makes IBS worse. You might want to consider taking up yoga or doing the hypno program - both approaches have really good track records.
I'm not sure what that drug is. As you're D, I'd (personally) recommend taking Immodium every day as a preventative and getting some enteric peppermint capsules which are a very good anti-spasmodic.
Good luck.
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Last year I had Colorectal Surgery. My intestines had prolapsed. The muscles in the wall of the rectum were not strong enough to hold the intestines in place.
After suffering with this, it was very embarrasing for me. I thought I was the only person who could possibly be suffering with this problem. How could I talk to anyone about it? How could I make a Dr. understand what was happening to me? After asking 4 docs about it, over a 2 year time span, and getting sent back and forth to other Dr's because no one wanted to be bothered with me. I finally found a great GI in Houston, who sent me straight to a Colorectal Surgeon. THe GI, was infuriated that on one cared enough to find me help.
To shorten this story, I went to the CR Surgeon, he immediately diagnosed me, in 1 month I was in the hospital.
He also told me that he could not guarantee this type of repair surgery would take hold, be effective. That only time would tell. He explained that normally when this surgery is done that they remove part of the colon, EXCEPT IN PEOPLE WITH IBS!!!! IT IS RECOMMENDED THAT NO PART OF THE COLON BE REMOVED BECAUSE PEOPLE WITH IBS NEED EVERY IN CH OF INTESTINE THAT THEY CAN GET !!!!!!!!!!!! Needless to say, he did the surgery, did not remove any of my intestine and to this day, I seem to be doing fine.
Now, if you should ever, ever, be tempted by any type of doc to do surgery for IBS, I would reccomend that you run, not walk, but run out of that office never to return.
OR, if you should have to have some type of surgery, or the same thing I had. Go immediately to the best hospital in your area, and seek out the most prominent surgeon in his feild. I drove over an hour away to see this Dr. he is in Houston, and has priveledges at Methodist Hospital in the Medical Center in Houston. He is also the Senior Colorectal Surgeon in his group. This is what I mean by getting the best. Thank Goodness for my insurance, and that he is a provider.
I will never, ever have any type of surgery again, that I am not sure of the Surgeon, and his background and reputation. I have had enough surgery to know that I will never place my life in someones hands that I feel is fully capable of taking care of me, and does not practice in a World Class facility. I don't care how far I have to drive.
OK, off the soap box for now. I just get upset when Dr's abuse their priveleges and their patients health.
NO SURGERY FOR IBS !!!! love ya'll !!!
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This "surgery for IBS" thing is SCARY!
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Thanks!! I did have the GI and they went into my stomach and took cat scans and x-ray. I did pretty good last night but I am so scared to eat. I know it sounds stupid but I am just so tired of being so sick. I started taking fiber pills and it seems to keep my D's incontrol so far. I just have so much pain in side and out. No one seems to know what to really do and I hate taking meds. I would rather not but I dont know what to do. Do you have problems with your potasseium levels?
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Could I purchase these enteric peppermint capsules at a health food store - right now I am once again on librax for spasims and it does not help at all??
How many do you take - before or after each meal-
thanks for advice!
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Re: truenorth
#143355 - 01/27/05 10:23 AM
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mindyj
Reged: 05/14/04
Posts: 494
Loc: Northern Virginia
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Hi.
Sorry you havn't been feeling well. I agree with Linz on the colonoscopy - we hate them, we don't want to, but we have to have it done!!! Other than that, It doesn't sound stupid to be scared to eat, almost all of us have been there at some point - not stupid at all. I also love to cook and it's been interesting for me trying to find ways to be creative with food that my tummy will tollerate and both me and hubby will eat! We do lots of pasta and chicken dishes and I simply love my crock pot - cooks everything thoroughly and no need for adding oils of any kind. I know it's tough now, but your just getting started and it will get better as you are on the diet longer and become more acquainted with which foods are better and worse for you. All of us are alittle different, so we have to test things out sometimes. On potassium - it is hard to keep enough of it sometimes, but here's my advice - first off, find a good multi vitamin to take everyday, although this may not be easy since lots of them have manitol and may be hard on the tummy. I do fine with Women's One a Day though. Also, bananas are a good soluable source of potassium. Good luck and feel free to post more questions.
Min
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Re: truenorth
#143373 - 01/27/05 10:55 AM
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AllisonL
Reged: 01/19/05
Posts: 54
Loc: Chapel Hill, North Carolina
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Also, saw someone had suggested trying baby food the other day. I decided to try it out, the fruit ones are really good. The vegetable might take some getting used to. But they are quite high in potassium as well. Trying it on toast was good the other day too.
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...assuming you check the labels for dairy etc! They're great for easily portable fruit and veg already pureed! I love the desserts.
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Anyone see any red lights with these ingredients? I'm new with Probiotics. THanks.
- Bifidobacterium lactis-bifidum
- Lactobacillus rhamnosus
- Lactobacillus acidophilus
- Bifidobacterium infantis
- Bifidobacterium longum
- Bifidobacterium lactis
- Lactococcus lactis
- Streptococcus thermophilus
- Lactobacillus plantarum
- Lactobacillus casei
- Lactobacillus salivarius
- Lactobacillus bulgaricus
- Lactobacillus acidophilus DDS-1
- Lactobacillus paracasei
- Lactobacillus sporogenes
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I go to UNC- Chapel Hill. I tried acidophilus before too and it didnt work, but try this again. get one that has a variety of diff bacteria and has a guarantee of how many organisms are in each capsule. be diligent about actually taking it, and keeping it refrigerated. I have been taking 2 caps about 20 min after eating with room temp water. i will post the brand when i get home.
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Thanks so much for sharing your story..... it's so easy to want to believe that ANYTHING will work. But i'm confused about your story.... you say you did have some type of surgery and you had good results?
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That surgery was for a problem seperate from her IBS. No IBS surgery, okay?
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All of these are good, just pick one.
Lene 
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God never promised life would be easy, but he did promise to provide a way out!
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