Hello Everyone:I was wondering if anyone could help me on my quest to finding out what other people are suffering from IBS and also a research paper that is in progress. I have had IBS since I was 11 years old, I am now almost 25. I suffer from chronic constipation, stomach cramps, back aches, fatigue, and more. I am trying to learn how to deal with my symptoms better and also trying to get a sympathetic ear towards my problem. A lot of people don't understand what causes IBS and how painful it really can be. I am so tired of being bloated and in pain all the time. I hate not being able to have frequent bowel movements. If anyone has any information about how I can alleviate my symptoms I would greatly appreciate it.Now for the interview part if anyone is interested. You do not have to rewrite the question, but it would be easier if you number your answers to the numbers of the questions. Thanks.1. How long have you been diagnosed with IBS?2. How long have you had symptoms of IBS before doctors correctly diagnosed your syndrome?3. What did the doctor recommend (medications, diet, etc.) that you do to help alleviate the symptoms of IBS?4. Have doctors been much help, or have you had to do most of the research on your own to try and alleviate your symptoms?5. What other diseases, if any, were you diagnosed with first, before they diagnosed you with having IBS?6. What symptoms have you had related to IBS (ie: constipation, bloating, cramps)?7. Have you changed your diet to alleviate IBS symptoms? If so, what do you eat now and what did you eat before that you cannot eat now?8. Can you remember a day when you had the worst pain with IBS? Please describe that day.9. Are there times when you had to call in sick to work, because you were in so much pain? If so, how many days did you call in sick to work total, because of IBS?10. Do you believe that friends, family, and doctors support you with this syndrome and believe the suffering that someone goes through when they have IBS?If there is anything else you believe would help with my paper, please feel free to add to the questions. I want to find out as much information as I can so that I can help myself and hopefully others in the future who have IBS. Thank you.
Interview for IBS
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Here are my answers, I have IBS-C1. 5 years2. 25 years3. various recommendations over the years, eat more fiber, try meds such as Bentyl, Levsin, Levbid, SSRI's, Zelnorm4. I have had to do most of my research on my own, I usually end up educating the doctors5. depression, anxiety6. constipation, bloating, muscular distention, gas, severe stabbing pain lower left side, stabbing pain radiating anywhere within the abdomen, achy feeling in lower abdomen that can go on for days, weeks, abdominal spasms.7. YES, What I eat now: High Fiber, Good Fat, smaller meat portions (3 oz serving size), non-processed foods, skim milk and fatfree yogurt, tossed salad with dinner, double up on cooked veges, very cautious what I eat at work (cannot eat veges and work), whole grain cereal, wholewheat pasta, brown rice, whole grain pilaf, whole wheat bread, natural peanut butter (just peanuts and salt), tuna, sammon, chicken, turkey, lean beef in small portion.What I CANNOT EAT NOW: Garlic, anything made with partially hydrogenated oil (transfat), soda (pop), gum, fast food, pizza, high saturated fat foods, donuts, baked goods (that I didn't make myself), raw brocolli or cauliflower, raw pears and apples, processed foods, foods high in sodium, caffeine, no juice after breakfast, eliminated "white" rice, pasta, bread, potatoes, no artificial sweeteners, limit as much as possible corn sweeteners8. Felt like someone had taken a knife stabbed me with it and had shredded my intenstines, the pain was so bad I could not breath, I could not keep my eyes open (and I was in my car trying to drive home on a highway), this lasted for a few hours. This was after a GI had done a "simple" sigmoidoscopy in office, as soon as he puffed the air into my rectum, everything went into severe spasm. He just poo-pooed the whole thing, was annoyed that he could not complete the procedure, told me "you have IBS eat more fiber" and walked out. In complete anger and frustration I took myself home despite the pain (actually very foolish thing to do, if you ever get in this situation, call for a ride). I found out 4 years later from another GI that this actually would be a common reaction for a patient that presented with my history, and the second GI was glad he wasn't the one who performed the proceedure. I never went back to the first GI, and it took me 4 years to bring myself to go back and see another one.9. Yes I have called in sick to work due to IBS, I probably average about 12 to 14 days a year due to IBS or the combination of my Period and IBS.10. 5 or 10 years ago I would answer NO. Now there is much better education and understanding of IBS and I'm getting better support. But believe me, there are plenty of doctors and people out there who are clueless about what you are dealing with.Just and extra Note: IBS tends to be somewhat of a unique experience for each sufferer. Different triggers, different symptoms, different things help and harm. You cannot just lump all IBS patients into class of symptoms. I imagine 10 or 20 years down the road that they will find that there are actually several different diagnosis that are currently just being lumped into IBS.
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Hi Desiree - Your paper sounds great! Will it be published - is it for a master's or doctorate dissertation? Just curious as I would love to see the outcome of your survey.Here are my replies:1. How long have you been diagnosed with IBS? Symptoms began in 1983/dx'd in 1988 - so 17 years since diagnosis.Symptoms began in 1983/dx'd in 1988 - so 17 years since diagnosis. 2. How long have you had symptoms of IBS before doctors correctly diagnosed your syndrome? Diagnosed upon my first visit to gastro in 1988, had symptoms prior to seeing GI. 3. What did the doctor recommend (medications, diet, etc.) that you do to help alleviate the symptoms of IBS?Initially, antispasmodics (my symptoms were very severe D on almost a daily basis, and severe abdominal pain and spasms)such as Levsin, Bentyl,Donnatal, Belladonna Tincture, etc. Then a calcium channel blocker, antihistimine, SSRIs including Prozac, Wellbutrin, then another class - tricylclic: Elavil, OTCs, Immodium, etc. 4. Have doctors been much help, or have you had to do most of the research on your own to try and alleviate your symptoms?My GI told me to go on the internet and research - he said I knew more about IBS than he did, and to go ahead and investigate on my own, so I did. That is how I found this BB, and the method of clinical hypnotherapy for IBS treatment, which proved to be the best treatment for me overall. 5. What other diseases, if any, were you diagnosed with first, before they diagnosed you with having IBS?None dx'd prior to IBS - though as a point of interest - I had gallstones and that pain was blamed as "just IBS" and I was told I should be sent to a pain clinic - needless to say, that doc was "fired" - gallbladder/stones pain is very different from IBS pain. 6. What symptoms have you had related to IBS (ie: constipation, bloating, cramps)? Severe Diarrhea, cramping. 7. Have you changed your diet to alleviate IBS symptoms? If so, what do you eat now and what did you eat before that you cannot eat now?No - Foods do NOT cause IBS - Research has shown that an individual may have food allergies, and/or food intolerances that manifest IBS-like symptoms - BUT - along with this some individuals may ALSO have IBS. This is a point of confusion to many on this IBS BB. Food does not in and of itself cause IBS. We know this because many IBS patients keep eliminating foods from their diet and continue to get symptoms. If you eliminate certain foods and feel better, than most likely you have an allergy/intolerance/indescretion to that food, not IBS. Another factor is the placebo effect - by eliminating a food that is believed to cause IBS symptoms, you will be OK. However, most true IBS patients who have completed hypnotherapy can once again eat "forbidden" foods. If they have food allergies, or intolerance, that would not be the case. You can, for example, be lactose intolerant, and not have IBS. Eliminat lactose, and your "IBS" is gone. However, you could be lactose intolerant AND have IBS - then you could eliminate lactose and still have problems. Sorry - long answer, but in dealing with IBS patients, I hear this confusion all the time. Diets help IBS patients because they believe it will, not because food causes IBS - unless there is something else going on. The gastroenterologists I have spoke with agree with this. 8. Can you remember a day when you had the worst pain with IBS? Please describe that day.Thankfully, a lot of my horrific IBS memories are dim now, because I have changed my thought patterns - but one does stand out. My family took a vacation and while at a museum I had a severe D attack and luckily made it to the restroom, but I was in there over an hour, and lots of lines of people waiting - thank goodness it wasn't a one-staller! But it was embarrassing, and my family pacing and waiting outside for me to come out - I would, and then have to go back in again. 9. Are there times when you had to call in sick to work, because you were in so much pain? If so, how many days did you call in sick to work total, because of IBS?There were many days prior to doing the hypno that I was out of commission and had to cancel engagements, not travel, etc. 10. Do you believe that friends, family, and doctors support you with this syndrome and believe the suffering that someone goes through when they have IBS?Some do, some don't. My last gastro who told me to research would give me books to read and report back to him because he did not have the time to research the latest. He was quite empathetic and said he could control colon cancer patients' pain better than IBS pain. Most of the docs would go through the list of meds, then try other meds for off-label use. But they were pretty frustrated as well.My marriage broke up mainly because of IBS - thought I was "faking" it - my friends were great and did all they could to keep things stress-less for me. One side point - there is a recording called the IBS Companion that explains IBS to others in the IBS patient's family - it was the first time I felt really validated and it made me cry when I heard it - this completely outlines what it is like to have IBS, and still try and maintain a life - he compares it to having severe flu constantly and still having to continue on with life. (This comes with the hypnotherapy program that I and many others here on the BB did to help their IBS - the IBS Audio Program 100.)If there is anything else you believe would help with my paper, please feel free to add to the questions. I want to find out as much information as I can so that I can help myself and hopefully others in the future who have IBS. Thank you.I agree with Zanne - IBS seems to be broken down into many different "causes" - so it makes it confusing - is it IBS, or is it something else (like food intolerance, etc.) that manifests IBS symptoms? In reviewing the research, it is apparent there are many different parameters involved in both the diagnosis and treatment of IBS.For further info on what helped me, and others here on the BB, take a peek at: www.ibscds.com. This is not a cure, and may not work for everyone, but it was presented at the recent IFFGD Symposium and the gastroenterologists were encouraged by the research clinical trials for the IBS Audio Program, and it has helped thousands of IBS patients worldwide.
Dear Marilyn
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Thank you so much for your response to my interview. Your answers are very insightful and are taking my thoughts about IBS on a very different track. I have been reading The First Year IBS and Eating for IBS by Heather Van Vorous, whom you may have heard of, and she believes that if you change your diet that it will lessen your symptoms. I have tried to start eating this way and it has actually helped my stomach more than the medicines have. Do you believe that this is because I had an allergy to the foods I was eating before and this was not actually aggrevating my IBS? I would love to go back to the foods that I used to eat, such as chocolate and pizza, but I am afraid to eat these because it may cause my stomach cramps to be more severe. I definitely want to look into hypnotherapy for my IBS. What does this cost? How many times do I need to go and see the hypnotherapist? I have had IBS since I was 11, and I believe that a traumatic experience in my childhood is what may have caused my stomach to be more sensitive. I think that hypnotherapy may help for this reason also.I am not doing this paper for a master's program, but I am going to consider posting it to this forum for others to read when I am finished. I greatly appreciate the information you gave me, and how in-depth your answers were. I hope that your journey with IBS is a less painful journey in the future, and I would like to talk to you further when I am done with all my papers and finals that are coming up (my IBS is killing me because of all the stress). Thank you so much for taking the time to help reduce my stress and giving me very informative details about IBS that I can include in my paper. Until the next time we talk. -Desiree
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Hi Desiree,Thank you for your kind words. I am glad that I could be helpful. I will respond to your comments. Firstly, yes I do know Heather and have spoken with her briefly. I have both of her books and her products - I find her peppermint and fennel teas to be very soothing. The First Year IBS has a whole chapter devoted to the IBS Audio Program 100, which is the program of recorded hypnotherapy that I used. You can find more info on it on the www.IBSCDS.com link I gave you above, as well as info from the book on her help for IBS site. Heather believes that IBS can be helped by diet, as this is what has been helpful to her and to many who have followed the suggestions in her book. I believe that there is impending research on this aspect as well. Her diet has been helpful to very many people, but in my case, diet was not effective for my IBS. I now can eat once forbidden foods such as any form of chocolate (and I shamefully admit I eat plenty!) I eat nuts everyday, eggs any style, pizza, and the once totally forbidden popcorn without problems that I used to have prior to using the IBS Audio Program. So this leads me to believe, and Mike has seen this over and over in the clinical setting, that food is not the cause of IBS, and certain foods don't make you have IBS - it is the repeated pattern and brain=gut connection in "pure" IBS cases that makes the food a trigger food. If a diet works for IBS, usually there is either another component going on - perhaps allergy/intolerance,of foods,as I mentioned above, or a poor diet that causes constipation - but that is not strictly IBS. There is a brain-gut component to IBS - in my case, I was not anxious, or thinking about bathroom problems, etc. It just came upon me, and more and more often until I began to eliminate foods that I thought caused my attacks. This doesn't mean that diet cannot be helpful - for many it is helpful - but in some cases it may well be because the belief that the diet is helpful, then it is, or because there was a health component. I believe that if a certain treatment helps you - whether it is a diet, medication, hypnotherapy, whatever - if it helps your IBS, then go for it. In my case, hypnotherapy is what proved to be the most successful; for others it is a diet, for others it may be cognitive behavioral therapy, or probiotics - whatever works for you as an individual is what you should go for.I can't speak specifically to your own situation - very few IBS patients have food allergies, but that is not to say you don't. There is only one way to know and that is testing. But if you are feeling better with the diet, then go for it!I do think that the hypnotherapy program would very likely be beneficial for you, as many who have had IBS from childhood have been helped by the program as an adult. The program addresses other stressors, anxieties and issues in the IBS patients' life in addition to IBS if there is a need. The program costs $89 on the above website, which includes personal support via phone or email if it is needed. They are recorded sessions replicated from the clinical setting and developed in England. I now work with Michael Mahoney who developed the program as a result of my being helped - I am his USA associate. I found out about him and the program when I came to this BB 5 years ago, and now I help give support when I can as I was helped back then. You don't have to go to an in person therapist with this program, and it is much more cost effective. If you went to a live therapist it would be from 7 to 12 visits and costing as much as the entire program for each visit. With both live therapy, and this program, you do listen at home.As far as my journey - when I came to this BB back in 2000, I spent 2 - 4 hours in painful cramping in the bathroom on almost a daily basis. Since doing the IBS Audio Program 100, I now am able to travel, and if I ever do have IBS, it rarely lasts more than 15 minutes,is not severe, and only now and then - nothing like the old days. And I am under lots of stress, so it was very helpful to me. The main reason I tell folks on this BB about it is because I still remember being bent over the computer in dire pain looking for anything to help after all those meds not touching it - so that's why I am still here.Good luck with your finals, and I hope the stress isn't too bad. Feel free to let me know if I can be of further help. Take care. ~ Marilyn
Dear Marilyn:Thanks for the advice about the hypnotherapy tapes. I have been doing a lot of research on different websites for my paper, and I have noticed that a lot of people have recovered from their symptoms because of hypnotherapy. I am definitely going to order the program and see if it helps. I would love to enjoy eating chocolate and pizza again. I will let you know how I did on my paper. Thanks again.
1. since december 20042. since May 2004, severely since August 20043. Colofac for when I want to eat 'bad food' and referral to nutritionist4. Doctor no help. Nutritionist was excellent. Got alot of help from this bulletin board too.5. None.6. Diarrhea,gas, cramps, bloating, spots, dry skin, extreme fatigue. Diarrhea is worst.7. Completely controlled on diet. I can eat everything except oats, yeast, potatoes, soda, raisins, mangoes, juice. Can eat all meat, rice, non-fibrous vegetables, wheat (in small doses-too much and I get bloating and gas), chocolate, potato chips, small aounts of corn,rye,apples, peaches and bananas. 8.I don't suffer too much with pain, diarrhea is my primary symptom and there have been dozens of instances where I have to go to the bathroom immediatly, I get intestinal cramps and bloated stomach, temp goes up, feel nauseous, severe anxiety. THese symptoms don't go until I go to the bathroom, it takes anywhere from one BM to 10 to feel normal again. This is followed by extreme tiredness and sugar cravings and depression.9. About 10 days a year. Always because of diarrhea and/or exaustion10. They don't support me, mainly because, with the exception of the dr., I'm too embarressed to explain all symptoms. Nutritionist is fantastic, I feel 100% comfortable with her and she understands as she specialises in IBS cases.
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