[Abby]

Has anyone tried Ibascol? When you fist sign on to the IBS site you see it on the right. I clicked on the picture and it looks good - just nervous because I have never heard of this, the company is in New Zealand (I am in Boston) and I don't want to take anything I know nothing about. Just looking for some info.

 

[KateyKat]

quote: I clicked on the picture and it looks good

Appearances can be deceptiveKKatSeeking accurate information

 

[kiastar]

Not sure if it works, but sure hope so. I just ordered a month supply. I live in NB Canada. I am willing to try anything that brings relief or claims to. Never got mine yet but will keep everyone posted as to how well i am doing.

 

[dianne]

These are postings elsewhere on this board that might help you with information from other board members ..... http://www.ibsgroup.org/ubb/Forum18/HTML/000207.html http://www.ibsgroup.org/ubb/Forum5/HTML/000181.html http://www.ibsgroup.org/ubb/Forum5/HTML/000182.html

 

[KateyKat]

quote:These are postings elsewhere on this board that might help you with information from other board members .....

There's lots of messages, but little substance .. none of em tell u what's in it and why it's so very expensive. So what is the 'miracle' ingredient then and where's the reseach data?CuriouslyKKatSeeking accurate information ...[This message has been edited by KateyKat (edited 03-19-2001).]

 

[Guest]

Kateykat,I am sensing some hostility?If you ask the company for info they will provide it to you. The ingredient is explainable AND there is a Dr. who uses this in his clinic who will call personally if you ask. Like any drug or product it is wise to dig deeper but you do have to inquire. There are lots of people who are using this even some on the BB. But I am sure you are going to get plenty of response. I am an exlotro user ( didn't stop because I wanted to) who was sceptical of everything. Sometimes we get angry when things are pushed but sometimes you have to INQUIRE if you want to know more and there are plenty of places on the BB that will give you info about others. please don't use my words as quotes, I am only telling you what I know. I do not work for them, I do not personally know them, I have no interest in their financial success, I am only a satisfied customer who was once frustrated like you.

 

[BQ]

Guys, I'm not stirring the pot here believe me. I don't want to open any "can of worms" & I'm just putting this info out there that's all. I attended a chat with above stated Dr. T. Meakin a few weeks ago. He could not confirm any solid research (ie double blind studies) being done or completed on said product. I'm happy that some people have had success with this product. But if you are interested only in a product that has been thoroughly scientifically tested this may not be the product for you. Perhaps these studies are underway or will be in the future, but from what he said in chat, it does not exist as yet. BQ

 

[Guest]

Although I did not attend the chat session mentioned above, I have heard from those who did that Dr. Meakin repeatedly referred to "inflammation in IBS" - to the derision of those members present, who appear to know rather more about IBS than he does.IMO, doesn't engender much confidence in the product ....

Julie------------------*** Seeking accurate information in the fight against IBS ***

 

[IBS2]

I look at IBSACOL this way. I was using and did get relief with Lotronex. With Lotronex gone, there's not a thing I can do at this point but look for alternatives. For me a prescription for Lotronex was 160 dollars, because it was not covered by my insurance. A trial period for using Ibsacol will be 55 dollars. If it works, then I'm ahead. I believe IBS is not one, but probably several diseases, that all cause the same types of symptoms. That's why one treatment may work for some and not for others. So I'll give it try and hope for the best. That said, I think you have to use your own smarts and weight not only the financial impact but the risk benefit ratio of using any drug. Just my 2cents.Regards,Tom

 

[Kathleen M.]

I find the explaination of why it supposedly works to be off, and I would like to see something better than the case studies (like a placebo control study and compared to a different fatty acid, like fish oil capsules).OTOH, there is a reasonably amount of anecdotal evidence so it may be working for some reason other than what the producers think it is working. It isn't uncommon in the history of medicine for something to help for reasons other than what it was first thought to do.Now while there is no overt inflamation in IBS there are some minor changes in the immune cells documented to occur in IBS, and drugs that calm mast cells have been tested in IBSers and that can help some people. It is possible that this could work in a similar fashion.Title Oral cromolyn sodium in comparison with elimination diet in the irritable bowel syndrome, diarrheic type. Multicenter study of 428 patients. Author Stefanini GF ; Saggioro A ; Alvisi V ; Angelini G ; Capurso L ; di Lorenzo G ; Dobrilla G ; Dodero M ; Galimberti M ; Gasbarrini G ; et al Address Sant'Orsola Policlinic, University of Bologna, Italy. Source Scand J Gastroenterol, 30(6):535-41 1995 Jun Abstract BACKGROUND: In a significant number of patients affected by the irritable bowel syndrome, an adverse reaction to food is proposed to be a causative factor. A diet that eliminates the offending foods is the obvious treatment for such adverse reactions. Compliance with a dietetic regimen is often poor and sometimes not completely free from risks. METHODS: Since the diarrheic type of irritable bowel syndrome seems mainly affected by food intolerance, and previous observations suggested that oral cromolyn sodium is effective in such patients, a multicenter therapeutic trial in the diarrheic type of irritable bowel syndrome was carried out in 346 of 409 patients with this disease, to evaluate the effects of oral cromolyn sodium and compare its efficacy with that of an elimination diet. RESULTS: Symptoms related to the irritable bowel syndrome improved in 60% of patients treated with elimination diet and in 67% of those treated with oral cromolyn sodium (1500 mg/day) for 1 month. Moreover, in both groups clinical results were significantly better in the patients positive to the skin prick test than in the negative ones. CONCLUSIONS: These results confirm the high prevalence of adverse reactions to foods in diarrheic irritable bowel syndrome and the usefulness of cromolyn sodium treatment in these patients. K.------------------I have no financial, academic, or any other stake in any commercial product mentioned by me.My story and what worked for me in greatly easing my IBS: http://www.ibsgroup.org/ubb/Forum17/HTML/000015.html

 

[Pikey]

I have been using Ibsacol for over two weeks now and I think it is wonderful. It has been working just as well as Lotro did! I am completely behind this product. I was a litle unsure at first but I'm glad I tried it. I can continue to work and do the things that I enjoy! I thought I was through when they took Lotro off the market but with Ibsacol I have my freedom once again and boy does it feel good. I recommend anyone with IBS-D to at least give it a try. You may be suprised!

 

[Mike NoLomotil]

The thing that will be interesting in studying IBSACOL will indeed be which element of the small bowel immune dysfunction is affected. All the sodium cromoglycate studies done so far have demonsrated mucopsal mast cell involvement in part, even in non-atopic patients. This was s surprise until The Swedes started finding the mixed circulating cell and mast cell responses of the small bowel mucosa in direct in vivo jejunal isolation studies over the last 4-5 years. Apparent humoral response but absent specific characerictics of humoral immune respnse. Things that make ya go Hmmmmmm....The mechansisms of the response of the granulocytic cells in the microvascualature is actually easier to to understand, (cellular immunity repsonse) esp. when a recent study of the lamina propria using full thicknes biopsy of small bowel found clear evidence of the involvement of the compement mechansism (alternative pathway), but in the words of Brostoff, the mucosal response is King...ie...primary yet there is no specific IgE to the provoking foods seen yet...just what the response is, what the mediators are, and markers for the reactions and of course what these chemicals do in the gut ans syetmically once they are released is well known so when these reactions are seen it is not hard to udnerstand where the symptoms and altered neural function come from.By the by, this comment drew my interest: ----------------"...I have heard from those who did that Dr. Meakin repeatedly referred to "inflammation in IBS" - to the derision of those members present, who appear to know rather more about IBS than he does...." ----------------If someone was foolish enough to deride Dr. Meakin for referring to "inflammation in IBS" and to label themselves as someone who "knows rather more than he does about IBS" I would suggest a reading of the Talmud: -----------------"If silence be good for the wise, how much better for fools" -----------------The dogma of "no inflammtion in IBS " is about 5 years out of date. I the first place the statement is as meaningless as saying "there is no water in a desert". There is. You just ain't lookin in the right place so you are doomed to never see it. That does not make the claim true, not being able to sdiscern it. And you may even be thinking of water in the wrong context as well.The fact that no "inflammatory response" has been seen in the colon has been the source of the "conventional wisdom", and itself is now conventional folly since full thickness biopsies of the ileocecal junction show increase mast cell density in SOME IBS victims. End of word NO.This is one of the first markers that was seen that suggested that the shock organ is not the large bowel but the small bowel. The recruitment of increased numbers of mast cells to the cecum in these patients suggests a site oc chronic insult at the point the small bowel empties into the large bowel.Further, in vivo and in vitro findings have for at least the last five years showing the shock organ and site of the abnormal immunologic response to be the small intestine, where food and additives are first presented to the humoral and cellular immune system elements...and that they are reacting with aberrant "inflammatory" reactions. When the mediators of inflammatory response are present, "no inflammation" becomes a untrue. Done. This is the first "chemical step" in either a umoral or cellular response...dumping peformed mediators and synthesis of others.The release hitamine, seroroninf and of an array of leukotrienes, cytokines, synthesis of prostaglandins, complement-sensitizition and numerous other markers are "inflammatory markers".If "members present" DERIDE Dr. Meakin for making a factual statement they merely are reflecting their own ignorance of the physiology. I am sorry that I was not present at the time If Dr. Meakin was "derided" for making accurate statements.As was also pointed out in this thread, the presupposed mechanism may or may not be correct and I for one would also like to assess the mechansism, and do know what tools need to be accessed to assess that mechanism. But there is no basis for "more knowledgaeble members [deriding] Dr. Meakin" for expressing a fact, unpopular as that fact may be with some people in and out of some elements the medical community and patient community.Now the terms "overt inflammation" described as absent, esp. if applied to the colon, is a much more accurate use of verbiage, as "inflammatory response" and the different types of cellular infiltration, interraction, tissue responses, and cellular consequences can and are distinctive. So if one is looking for localized eosinophilic infiltrate in the colon, for example, one will come away disappointed unless one seeks to show "no inflammation". If one is looking for lymphocyte aggregation, inflamatory mediators present, loss of cell wall integrity in granulocytes, altered vascular permability, etc. in the small bowel structures one will come away with those inflammatory markersd and events in hand from challenges of the jejunum in confirmed reactive patients (oral challenge confirmed prior to jejunal challenge with subsequent in vivo and in vitro analysis of markers).I hope no one representing this Community embarrassed themselves by "deriding Dr. Meakin", especially if they feel proud of themselves for it.Eat Well. Think Well. Be Well.MNL_______________ www.leapallergy.com [This message has been edited by Mike NoLomotil (edited 03-20-2001).]

 

[william brown]

I'm no scientific genius(just a dumb attorney) like MikeNml and others, but have had IBS-D forever--40 years plus. Back then the MD's always said "stress", then went to Mayo Clinic in 1999 where "colon motility" seemed to be the reason. After using lomotil for thirty plus years, the body gets to tolerate it and it takes more. Lotronex was and is a great product, but with it off the market, I started ibsacol. What's to lose? Have been on it from 3/8 to today. It may not be the immediate relief we had from Lotronex, but I think we have to give it a try. Dianne and others in New Zealand said maybe thirty days. It seems to be helping, but it takes time to build up in the system. The only difficult thing is the size of the caps. Dr. Meakin personally called me at home to discuss the product, which I find encouraging-- he is a trained MD from Canada, and says the ibsacol works on the immune system somehow which he says is behind the elevated sefrotinin levels in the gut which Lotronex cuts down. I don't understand the chemical, medical,or scientific background of it all, but if it works, what's to lose??? WWBrown

 

[Marilyn Naylor]

I'm like William Brown - nothing helped me til Lotronex. I have been on Ibsacol for three weeks and it is much better than nothing. I still have to take Immodium sometimes with it but still OK. I have many more good days on Ibsacol than before. Please look on the products BB for more info because I and others have posted here and all the threads re Ibsacol were moved to the products BB. I also have no clue about scientific evidence, etc. and don't understand it anyway. Before Lotronex, I had been on sea cure - talk about huge and they smelled awful (like fish) capsules and had to take 9-12 a day and didn't work for me as good as Ibsacol. I was lucky with Lotronex because only had to pay less than $6/mo, now it would be $10/mo if it came back because my insurance did pay for it. yes, it was too good to be true and I should have refilled that prescription five times cause I only had to take 1/2 a day. I have to say that my stools are much more normal with Ibsacol than with Lotronex. With Lotronex I went once a day and they were very hard and small and I never felt like I got rid of everything. On Ibsacol, they are very normal - gross huh? Good luck to all.

 

[Jeffrey Roberts]

Judamar,As I was the one transcribing all of Dr. Meakin's comments in that chat session I recall that he used the term inflammation once. Some people were taken aback by that term. In hindsight I should have asked Dr. Meakin specifically what he meant before typing that to the group. Further explanation was offered and I was certainly satisfied with that.As an aside, I generally move products to the Products Forum to make it easier for new members to locate products in one place. I encourage discussion about IBSACOL, as a product, to be continued there.Jeff[This message has been edited by Jeffrey Roberts (edited 03-20-2001).]

 

[KateyKat]

quote:As an aside, I generally move products to the Products Forum to make it easier for new members to locate products in one place. I encourage discussion about IBSACOL, as a product, to be continued there.

Thanks Jeff, since Abby started this thread on the Discussion Board, then perhaps you'd be so kind as to move it over .. we can't do this (?) I've been giving this issue quite a bit of consideration and the teeny bit-chen I do know about herbs inevitably draws me to �natural� .. as opposed to pharmaceutical .. products, if indeed intervention is deemed necessary. But �natural� doesn�t just mean �safe� .. at any level .. or in any situation; children, pregnant women, older folk and the chronically sick need to be especially alert to potential adverse effects. Also if you�re taking other products as well you need to be aware of possible interactions: the active constituents of some herbs, for example, do not mix well with others or with some pharmaceutical drugs.Kava, for instance, can make u very drowsy so don�t drive on it � and, as Dr Dahlman (sp?) points out in another thread, longer term adverse effects may not show up for some time.DD .. can you clarify this please?It also occurs to me that if u take any plant/veggie oil in quantity u *must* take extra Vit. E as it�s otherwise leached from the body � I learned this when studying feline nutrition.So for my part, I wouldn�t be inclined to try this Miracol cure thing, despite its possible benefits and my curiosity - unless I knew just what�s in it .. and that info seems to be hard to come by.But I'm sure it would be helpful if the 'guinea pigs' would be willing to post regular updates on their progress. CurioslyKKatSeeking accurate info ...

 

[Guest]

I just read everyone's posts regarding the use of Ibsacol and feel a sense of confusion. First of all I come to this BB to get information good or bad. I do not in any way consider myself an expert on IBS and drugs.I do however respect anyone who is trying to get their lives back and wishes to try suggestions. After all they are only suggestions and not forced. I personally do not post on threads, any of my opinions, if it does not affect me personally. There are many things out there that are unexplainable, so we do research. I am in the medical field and have seen many things work with patients that are not always explainable. If their lives are altered by it for the better than why criticize? I was angry before trying Ibsacol because my Lotronex was gone. I hated the posts about Calcium because it didn't work for me. Obviously this is one thread that does not interest me so I DON'T post my opinion. I suppose I could say how it didn't work but who cares, it works for others and I am happy for them, not angry. The tapes are another example. I don't post there either because I CHOOSE to not try them. Yes, I am one of the Ibsacol guinea pigs and proud of it. For now I have my life back and that is what counts. Lotronex for has had many different effects for different people. Some good and some bad. Some even say it was not tested long enough to see the potential risks. Oh well, I know it worked for me as Ibsacol is doing now. For anyone seeking further info then email Ibsacol and have the Dr. call you. He may give you peace of mind or he may not. That is a choice the INDIVIDUAL must make. I do believe if you CHOOSE to not try something then you are really not in a position to criticize or to continue making snide remarks unless you are just an angry person who would rather make everyone else feel bad for something that you are not willing to try because of WHATEVER reason.I am thankful for having my life back. I can work, go to school, go to a park with my children and not worry if there is a bathroom near by, and go out without anxiety.Ok, I can breath now that I have vented.By the way, for anyone who is interested, I have been on Ibsacol for about a month. NO side effects what so ever. I feel great!

 

[KateyKat]

This is not the right thread for in-depth discussion about what's behind this 'IBS' thing and yet here we are discussing cures .. again. Not really sure what the reference to snide remarks is all about or the inference of hostility. *I* come in peace But I will say this much; when a product is promoted on a public BBS and people ask to know its active ingredient, I would have thought we would be afforded the courtesy of a factual response ... in public. Not asking for disclosure of 'trade secrets', and not condemning those who want to try without knowing the full facts, but I do think those of us who do want the facts should have them.Don't u agree?KKatSeeking accurate info ...

 

[Guest]

Jeff ....What I posted was based on talking to people who were in chat, and this thread ... http://www.ibsgroup.org/ubb/Forum1/HTML/017583.html Thank you for your account of what happened.Julie------------------*** Seeking accurate information in the fight against IBS ***

 

[IBS2]

Kateykat, First let me assure you there is no hostility in my written words. Unfortunately, on the web, one cannot always gauge the correct meaning either real or implied from a short note. That said, I believe the bb is a free form discussion and as such you'll see discussion on the cause of IBS spread over a wide area. I would also say that for most of us who have had IBS for some time, while we would love to see a "cure", I sure most of us would gladly accept "control". With regard to IBSACOL, there is some information as to it's active ingredients on their web site. I've also noted that the makers of IBSACOL have been fairly good about trying to address any concerns. I did make some inquiries via email and got a prompt response. Sure, I'd love to see double blind controlled studies, but admit that after 30 years of IBS, I'm willing to push the envelop when it comes to treating my condition. Each of us has not only that freedom, but also the responsibility to make personal judgements when it comes to our health.Regards,Tom