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My IBS Journey


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#1 cookies4marilyn

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Posted 27 November 2005 - 03:50 PM

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Since we have new folks visiting the BB all the time, I thought I would share my journey via this thread to encourage others and for those willing to wade through these next paragraphs.... Be well... wave.gif<!--graemlin::wave:--IBS really ruined my whole life, and just like everyone here, I felt torn between being grateful I didn't have something "serious" and guilty for feeling like I was dying anyway. People treat you differently when they know that IBS is something that isn't "serious" as in life-threatening, but even my gastroenterologist told me that he could treat the pain of his colon cancer patients better than his IBS patients. I was officially diagnosed in 1988, after about five years (1983) of not knowing why I was having increasingly severe diarrhea and abdominal pain. With the birth of my daughter that same year, I thought I better get tested, that maybe I did have some digestive disease, but several colonoscopies later, (four total over the years) it was confirmed as IBS. Trips to the Mayo Clinic and two other gastroenterologists further confirmed that every single prescription and OTC medication had little or no effect, and only short-term, if any: Over the next 12 years or so, I was prescribed various IBS medications by my gastroenterologists and internal medicine physicians - some examples: every antispasmodic including Hyoscyamine (Levbid/Levsin, and Levsin SL), Dicyclomine (Bentyl), as well as Donnatal, Tincture of Belladonna, etc., several diets and diet modifications/food eliminations, fiber, the anti-depressant Amitriptyline (Elavil), various SSRIs (Prozac, Effexor and others), Codeine, Colpermin (enteric coated peppermint capsules), various other Antidiarrheal and/or Antiperistaltic prescriptions or OTC medications, as well as non-label use of prescriptions such as Seldane, which has a side-effect of constipation to combat my extreme diarrhea. There were other medications, and herbals as well.My gastroenterologist finally told me that he had exhausted his treatment options, and to go look up other treatments on the internet. In my search, I found out about the use of clinical hypnotherapy for IBS through fellow BB IBS sufferer Shawn Eric, who was the first on this BB to use this method successfully in 1999, but I thought this method was pretty far-fetched and seemed to be absurd to me.But at this point I was desperate, now almost housebound with severe urgent diarrhea, painful cramping, and nothing helping, so I tried this treatment method as a last resort in the summer of 2000. This treatment program is known as the IBS Audio Program 100. It consists of a set of audio CDs containing clinically researched therapeutic sessions with a very specific listening schedule. (Michael Mahoney of Cheshire England is the author of this program. He came to the IBS Group BB in 1998, when his program became available to the public as a result of patient demand. Mike has many publications about him and by him and is one of the leading clinical hypnotherapists in England who works alongside gastroenterologists in his medical centre.) Even though the program had been helping thousands of IBS patients, even prior to its availability to the public in 1998, I felt that this would not work for me, that I was a hopeless case, having been diagnosed as severe refractory IBS, and I doubted that anything of this sort would have any real helpful effects on my symptoms I was of a very negative, depressed mind-set from the beginning and throughout listening to the program. I had very little belief in it or the method. In fact, I thought it was rather bogus, and misleading to think anything of a brain-gut approach would help me. After all, the problem was in my gut not my mind or so I thought. I fought all the way,writing emails to Mike in England, how this wasnt working, and that I was relapsing, etc. I was a nightmare patient! An IBS poster child.During the course of listening to the hypnotherapy sessions, I not only had to deal with IBS, but my marriage dissolved in part, due to IBS, and I had several various surgeries , one on my foot, a gallbladder removal (which the doctor misdiagnosed as IBS pain), and removal of repositioned entangled ovaries. While the hypnotherapy program wasnt dealing with my IBS, I found out it helped me cope with the many other stressors and health issues in my life first, as these were the most pressing, once resolved, I re-listened to the program yet again , and my IBS began to improve. Very gradually at first, but one day, I realized, I hadnt had severe pain and urgency as often as I used to.As the time passed, the urgency and diarrhea diminished substantially in fact, as time went on, I later realized that at the first hint of urgency, I automatically had what I would call an unspoken inner thought that said, in effect, I dont have time to deal with this now, or I dont want this now, go away and the urgency and impending diarrhea would subside within almost seconds. It was an automatic response, I didnt think it through. Just as in the past, my gut previously reacted as an automatic response to go into pain, cramps and urgency and severe diarrhea.Due to the severity of my severe refractory IBS, as well as several non related surgeries, I listened to the entire program 3 times. Each time I saw better improvement I was the worst case scenario. Mike told me that the hypnotherapy program worked first on those health issues and stressors in my life that were most pressing to my overall health and that the IBS was dealt with last in my case but I persevered, and my symptoms greatly reduced. That was several years ago, and now I can actually leave the house, whereas before, I raised my children "through the bathroom door!" I had attacks of diarrhea and pain lasting for hours on end, sometimes six hours a day, almost every day, never knowing when...even if I ate small amounts, the attacks would come out of the blue. I am now able to function , if I do get an attack, most of the time it will subside within minutes, if not seconds. IBS is no longer the severe issue that it was, and though not a cure, for me, it was the best thing I could have done to treat my IBS on a holistic level.My IBS cost me a whole lost life...events and special celebrations for my kids, just taking them to routine doctor and dentist appointments was an ordeal, and my marriage suffered and collapsed in part because of it. I went from being able to travel and talk professionally in front of large groups of people, to being just about housebound. This program saved my life. And that is why I am still here helping on the BB and why I now help the author of the program, Michael Mahoney, as a result of my gratitude for getting my life back. As one of the slowest persons to respond, and with very severe symptoms, I feel that I do need to pass on what was given to me and encourage others to not lose hope. That's what worked for me and I hope this helps someone too. Thanks for letting me share! Link to Mike's IBS Audio Program 100 http://www.healthyau...?r=VmPRrcNkLink to Video - Brain-Gut Connection~ http://www.healthyaudio.com

UPDATE April 2015

AND NOW available as an app on SoundsLikeIBS.com

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Posted 29 December 2005 - 06:43 PM

MarilynYour story is so much like mine My docs gave me all those meds nothing worked they gave up onme and I did research the internet and ended up with a great GI doc at UCLA and Shawn He saved my life He really taught me about IBS and really guided me in asking the docs for help and what questions and tests to ask forI just startted Michaels tapes I am on Day14 They are the best I am in such a good place and fel so clam and peaceful and HEalthyThanksKAren

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Posted 01 January 2006 - 07:23 AM

Hi Marilyn,I am so sorry to hear that you have gone through so much... I feel now that I´m so encouraged by your story and that I should not give up. I´m now waiting for Mike´s CDs to be delivered and am very hopeful. I won´t give up even if it might take long time before I get positive result. Thank you for your encouraging post!

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Posted 06 March 2006 - 09:11 AM

Hi Marilyn ,this is only my second post so I'm very new here . I just want to thank you for a most informative story. The group therapy that you and others provide in this site is invaluable . My IBS is not as severe as others but I have experienced anxiety problems along with many of the other symptoms . I'm currently have some success with Questran . I'm very interested in hypnotherapy but I do have one question : are you still watching the food triggers and amounts of food you eat ? Thanks again for your loyalty to this site .

#5 cookies4marilyn

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Posted 06 March 2006 - 03:12 PM

Hi bourbonbelle and welcome!Thank you so much for your kind words - they mean a lot to me.I see you only have two posts so I took a peek at your other post to get a bit of bg for you - here is your other post:[I've had IBS-D for over 15yrs.It's gotten progressively worse through the years (I'm 64) . The escalation really began 7yrs ago after gall bladder removal and then again in the last 3 yrs with the addition of 2 cholesterol drugs (Alto-prev and Zetia).After reading this site I talked my doc into substituting Questran for the 2 cholesterol drugs . With the advice of my GI I now take 1 scoop at bedtime , and a 600mg calcium carbonate with breakfast and lunch . If I go on vacation I take 1/2 immodium at night and 1/2 in the morning everyday . If I feel that stress is an issue I take 1/2 Xanax . This is working for me . I am planning to add a probiotic to this regimen . Thanks for all the great information on this site .]As you have read my story, I too had my gallbladder removed in 2001 - but I had IBS prior to that, and I did not experience any food issues upon removal. I no longer really have any food triggers, and actually can eat many things I could not eat prior to both the gallbladder removal and the IBS. I found that the food was not really the issue, but the memory of having prior attacks when eating a particular food - I now have no real food issues or restrictions of any kind since doing the hypnotherapy. It also helped to break that anxiety and fear of having an IBS attack.Feel free to ask any questions you may have - we are all here to help - and, like you, I have had IBS a very long time, and I think it's great you are taking a multi-method approach to help you feel well. Let me know if I can be of further help.All the best to you. Posted Image

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Posted 16 March 2006 - 11:49 AM

Hi Cookies: I just signed on to this IBS forum a few weeks ago. I have been a sufferer of gut problems for as many years as I can remember. Even as a child I had problems but no cause.A tour in Viet Nam and 26 years as a Fire Fighter I some how coped with the pain and discumfort. Finally about 8 years ago an GI said those terrible words (IBS). This past year has been the worst I have ever had. Pain, diarrhea and all the rest. Today will be my 10th visit with my GI for results on the half dozen medical test I have taken over the last several weeks and months. What I have been reading from these forums has really peek my interist in understanding this hellish problem. I went to hypnotherapy for PTSD at a VFW and it really helped so maybe its time to return for this IBS.What you say????????

#7 cookies4marilyn

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Posted 16 March 2006 - 03:23 PM

Hi huffy and welcome! Posted ImageWow - I don't know HOW you were able to be in Nam and a fire fighter as well with IBS - my hat goes off to you and my heart goes out to you, Sir!Well the hypno may be helpful to you, especially since you used this method before for PTSD. The author of the IBS Audio Program works with this condition and has a program for this as well - since you have had experience, it may be something worth investigating - it isn't a cure-all, but it has helped many folks get much better.There are two fellows here on this BB - Robby and Brett, who have had similar symtoms to yours and are doing very well now - so that should be a good encouragement to you - If you have any specific questions, let me know. I would be happy to help - and hopefully some of the others will chime in here as well.You may want to start a new thread topic on your own in this forum and ask away!Take care and all the best to you - and again, let me know if there is anything specific you want to know about hypnotherapy in general for IBS, or about the IBS Audio Program that has been helping folks here.Posted Image

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Posted 26 March 2006 - 03:04 AM

Marilyn,Can the Cd's help with IBS A, but I am mostly C predominent? I have the pain also.I do have some real issues in my colon that were found with colonoscopy last month.Diverticulosis in both the sigmoid and decsending colon, I had 4 polyps removed, the 2 in the acsending colon were tubular adenomas the other 2 were benign. I also have a Markedly redundant colon with sharp angles, at least that is what the report states. I am on 0 medication right now, just suppossed to eat a high fiber diet and take 2 teaspoons of fiber a day. Now this seems like a catch 22 because of the diverticulosis. I am 35 and feel helpless. My next test will be on my gallbladder because of some upper GI symptoms. Any suggestions will be very appreciated. I hate this IBS. I also have anxiety disorder along with this mess and am taking a low dose of EffexorXR and Klonopin. He wants to switch me to Lexapro but I am scared to try it. Please help.Thank you,DF

#9 cookies4marilyn

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Posted 26 March 2006 - 07:14 PM

Hi DF,Wow you certainly have a lot of issues to deal with and my heart goes out to you... I also had gallbladder issues, as you have read - not fun.I see you are asking questions on the other forums, so that is good to get lots of info from all aspects.As far as the CD's go, they are an adjunct to medical care - they do address 20 IBS symptoms, including the A and C, but are not a replacement for medical care for all the other issues you have going on. But they might help you in terms of coping with all of this, and may ease some of the motility swings from the alternating issues and work in conjunction with the other treatment. The CD program does address the anxiety that is associated with IBS - the fear of leaving the house due to IBS, the panic stuff that goes along with it, and providing general relaxation and better sleep, which is helpful to overall health anyway - but it is not going to address all your anxiety issues/disorder - only assist it, and of course, the CDs cannot address physical issues such as redundant colon,(which usually is a sub-set or variant of a "normal" colon, unless it causes symptoms) diverticulosis, etc. But it can help you deal with the pain issues - I have had abdominal surgery, and the CDs help me with that pain, tho it is separate from the IBS itself.As far as meds, you need to do what you feel is best after discussing with the doctor - everyone is different and a medication that might not work for one person, may be absolutely a God-send for another, so on that I cannot really speak - though you may want to do a search and see what others have to say who are on those meds, that may help you get some thoughts.Let me know if you have any specific questions regarding the CD program - I hope you are able to resolve your concerns. I do know some folks have had luck with acacia fiber - the main thing is to start out slowly and ease into the doseage that is helpful for you- and as you most likely know, stay away from foods with seed, kernals, etc. for the diverticulosis.You may want to post in other forums to see if anyone has been on Lexapro to help you out there.Take care, and feel free to ask away - we are all here to care and support...All the best to you.Marilyn Posted Image

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Posted 26 March 2006 - 11:38 PM

Thanks Guys,I really needed the uplift. I never dreamed that when I actually had the colonoscopy they would find all that stuff wrong and I know that the redundant colon can cause constipation issues so I will learn to deal with it. I am most afraid of the diverticulosis as I had numerous ones and was told that for my age it is rare. I am scared of getting diverticulitis. Oh well, life goes on. I feel so bad tonight, feel like I have a brick laying in my stomach and just wondering when the D will start. Marilyn, thank you for the tip on the seeds, kernels etc... as my doc did not mention that to me, as a matter of fact on my high fiber food list they gave me it has nuts etc as a food to eat. I will not be eating that. I want to have a more normal life and am sick of my stomach ruling me. I am def not housebound by any means and do go out alot so I am lucky compared to alot of others on here, but when my stomach acts up it causes depression and anxiety and I am really sick of it. I think the cd's would be of great help to me along with some CBT therapy which I will be starting pretty soon. I wanted to say Marilyn that I have been on a low dose of Effexor since my divorce in 1998 and I think the med wreaks havoc on my stomach because that is when the problems began. I am just afraid of another anti-depressant and what it could do to my stomach. I will do a search on Lexapro on here and see what effects others have had. One more thing what do you guys think of Bentyl for an anti-spasmodic? good or bad.....PS. Angry, glad to hear your mom is doing well Posted Image Thank you both for caring and God bless.DF

#11 cookies4marilyn

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Posted 27 March 2006 - 12:03 AM

Bentyl works well for some - for myself it was a short-lived effect - I was IBS D - In my opinion, I don't think it would be indicated for anyone with tendency toward C, as one of its SE is dry mouth - it is known to cause C, so for what you indicate here, I would not be inclined to use that one for your case - but of course, you should talk to your doctor, though, because every situation is different - but that is my "in general" take on it.The hypnotherapy program is a different approach from CBT - and while you could do both, you may want to do one or the other - to see which helps you. The CBT requires "active" participation - Kathleen, PhD., one of the other moderators here, was in a CBT trial and did very well for helping her IBS. The hypno does not require active participation other than to listen to the sessions - it may be helpful to your anxiety IBS realted areas.I am really surprised that your doc said to eat nuts! Ackk! You have to be careful - even seeds from grapes can get caught! Do a search on sites like Mayo, etc. for more info on that - I was on Effexor and other meds and did not do well on them, but that was just me - but it is possible to have bad side effects from these meds - to be sure it is hard to sort through it all.((((HUGS)))) to you - if I can help in any way let me know. Posted Image

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Posted 27 March 2006 - 12:49 AM

Thank you Marilyn, you are a really caring person and thank you for taking the time to respond to me. I think I will just get the CD's, Will cost me less in the long run also. Yep, nuts are on my fiber sheet, if you can believe it. My GI doc really is great though and even got through the old redundant, sharp angled colon all the way. Now that is a skilled doc.Ok, how do i order the CD's? on this site?And thanks for the tip on the Bentyl, do you know of one that is not constipating?DF

#13 cookies4marilyn

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Posted 27 March 2006 - 03:43 AM

Hi DF,You can click on the art picture of the smiling sun up on the upper left corner of this webpage - or simply go to www.IBSCDS.com for the IBS Audio Program 100. There are several folks on this forum who are on various stages of their journey and will help support and care for you as you progress... Posted ImageFor medications, I don't know of antispasmodics that are indicated for constipation prominent IBS - many of the pain meds also tend to have a possible C side effect. Take a look on this link for info on meds:http://www.ibsgroup.org/main/medications.shtmlBut I would make sure you have your gallbladder sorted first to rule out - there are so many meds and interactions. Also, there is a difference between soluable and insoluable fibers - you may want to do a search on acacia as I have heard good reports on that one.Post on the Constipation Forum as well for info, as folks there may have some insights better than myself - especially since C was not my type of IBS.I am sure your doc will tell you which med would be best for your situation with the other factors you have that need to be considered - there is one medication indicated for chronic constipation on the list in the link above - you might want to ask your doc if that would be feasible for ya.And yes, the CD program is very cost effective over live in therapy sessions and replicate the sessions used in the clinical setting - they are very calming and soothing and have helped me through lots of tough times to give me some serenity and peace...Thank you also for your kind words - they mean a lot to me! xxLet me know when/if you order the CDs - and we will all help ya along the way - and if you decide not to get them, that is fine too- whatever is best for you - take a peek at the site and read up on the research - they don't work for every single person, but for the majority of folks who use them - they will hopefully help you in feeling more relaxed and calm - usually that is before the IBS is addressed.And feel free to start your own thread if you wish - we are all here to help! Posted Image Posted Image~ Marilyn

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Posted 28 March 2006 - 12:40 AM

Thanks Marilyn,I will look over the links. I have just one more question for you though, if you could give me your opinion. I am C but do have the D sometimes also. In my report it stated that I had considerable amount of spasming in the sigmoid during colonoscopy, do you know what that meant? Is that why IBS is sometimes called spastic colon? I was just hoping I could get an anti-spasmotic for it.Thank you so much Posted ImageDF

#15 cookies4marilyn

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Posted 28 March 2006 - 03:19 AM

Hi Desertflower - I can give you my take on it, but not my area of expertise, I am not a doctor! However, the sigmoid colon is that last section and most likely they were refering to contractions that were irregular in nature. Since IBS is characterized by irregular motility - that is the speed by which the stool moves through the digestive tract - they probably were noting that the contractions were irregular or out of sync. For the C, of course, the stool stays in the large intestine too long (lack of contractions for motility) and too much liquid is absorbed - when the contractions are quick, it moves the stool along faster than the liquid can be absorbed - the faster the more watery the stool.Of course, your best bet is to ask your gastroenterologist what they meant by considerable amount of spasms - I can only speculate what was meant.Here is some more info on that - and you can do a search for much of this as well - hope this helps a bit ~Excerpt quote:"Painful irritable bowel syndrome and sigmoid contractions. - Strong circular contractions of the sigmoid colon and pressure recordings correlated with the characteristic pain... "from:http://www.ncbi.nlm.nih.gov/entrez/query.f...7&dopt=Abstract---Excerpt from :http://www.fdhn.org/html/education/gi/ibs_nosology.htmExcerpt from above; "In IBS, diarrhea is characterized by decreased segmenting sigmoid contractions and an increased frequency in long spike bursts. Constipation and abdominal pain are characterized by increased segmenting sigmoid contractions and an increased frequency in short spike bursts. IBS patients may have diffuse motility abnormalities in the esophagus, stomach, and small intestine. "---As far as anti-spasmodic - you should ask the doctor if it would be indicated for C along with some D - sometimes refered to as IBS A - for Alternating.If you don't want to get into the drug thing, you might try enteric coated peppermint capsules (sometimes called Colpermin) - you can get them OTC at health food stores or thru ...com - you can also drink peppermint or fennil seeds tea which some find helpful to regulate motility and for pain.The one thing with anti-spasmodics is that you can ask the doc for a sample, and if they do make you more C, then just discontinue - my gastro told me that they had to have the side effect of "dry mouth" in order to work - but again, your own GI would know your situation best - we can only give our thoughts here as fellow sufferers, not experts... Posted Image I do recall my gastro also saying that my intestinal contractions were so intense it was like doing 1000 situps in a row - it sure felt like it too! Luckily I rarely have that now after the hypno...Hope this helps a bit - and take care.. Posted Image.

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Posted 28 March 2006 - 10:52 PM

Thanks again Marilyn for helping me out. I am going to call my GI and get some more answers. He really did not mention any of these things to me during the appt. Just about my diverticulosis and the polyps.I am going to order the cd's as soon as I can. Thank you also for the links.DF

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Posted 12 July 2006 - 11:20 AM

Hi! My first post here. I have just (a month ago) started doing a cd with hypnotherapy that I have purchased athome, here in Sweden. It lasts 25 min app, and I love doing it because it relaxes me so(I feel like if I am floating).But I do not feel any other improvement, other than that I highly enjoy the relaxation it gives me (helps with my headaches). How long do I have to keep going until I feel any improvement, do you reckon? I wonder, the cd programme that you mention here, seems to be so much more. Different stages? I am desperate it feels like sometimes. I am currently eating Gabapentin (900mg daily) and I hate it and want to get off it. I get so extremely tired by eating it, I cannot work, nor can I become pregnant because of potential sideeffects to the foetus. I am 35 and I am looking for a second chance in life... I am motivated like never before, and I have beaten my anxiety that came when my IBS drastically worsened in 1997 (that is when I was diagnosed). I used to eat Cipramil (antidepressant, from 1997- spring 2005) and also Alprazolam (97- spring 05), both in relatively low doses. I have now started exercising, I have left my boyfriend who was a commitment phobic, started back at uni to finish my bachelors exam (at a snails pace but still). Any tips? Right now my condition is mangable, but I want to get off the meds, so I can start a family and start working again. I have no need to get a 100% better, just enough so I can finish with the Gabapentin. ps. yes, they have done all manners of tests on me, including coloscopy, so the docs will do no more for me. And I am bilingual, so English is no prob for me, even though my mother tongue is Swedish./Vicki (who indeed feels like a very sleepy puma right now...haha)

#18 cookies4marilyn

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Posted 12 July 2006 - 04:20 PM

Hi Vicki and welcome! Posted ImageAs long as you have a definite diagnosis of IBS, and you feel everything has been done, and the docs are "done" with you, as you mention, I do think that you may find that you could get further improvement with the IBS Audio Program we discuss here. The fact that you enjoy the relaxation CD that you have from Sweden, is a good start.Mike's IBS Audio program has been developed specifically for IBS symptoms as well as the anxiety, and a reduction or elimination of IBS medications. So it may be a good option for you. We have had folks in Sweden use the program, as well as Germany, and over 30 other countries, where English is not the mother tongue, but they still had improvement.Take a peek at www.ibscds.com for more info - should you decide to go with this program, it is shipped from the UK where it was developed. And yes, it does consist of different stages through different sessions which are developed for specific needs and listened to according to a schedule for the best improvement.Feel free to come here and ask any questions you may have, especially after you have read a bit more about the program - you may also want to start your own topic thread - and copy what you have just posted here if you wish - and others will welcome you.Again, many welcomes to you and I wish you all the best! Posted ImageMarilyn

#19 Burpee

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Posted 09 November 2011 - 07:41 PM

Thanks, this is very good info on ibs D about the contractions being out of synch, I have had now 6 sessions of hypnotherapy from the NHS, and found my bowel movements to imrpove greatly in form, not runny as b4.Although it has not helped my burping issue that I also suffer from, maybe the hypno coul dbe adjusted to relax or fix my esophagus too.HA

#20 cookies4marilyn

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Posted 11 March 2012 - 01:35 AM

Hopefully things have improved for you over time! Some folks need extended time with sessions for all symptoms to be addressed. :)





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