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Discussion Starter · #1 ·
I remember taking a survey on this board a month or so ago. Did the results get posted? If so, could someone please point me to them. If not, does anyone know when we'll be seeing them? Thanks.
 

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If it was the Nicole Gonzales project, the following is what she e-mailed to the participants:Hello to all participants in IBS research. I'm sorry I am a little late providing this to you. I am working on part 2 of this research. This research has been a sociological research as how you as IBS sufferers create a community and the value and role the discussion boards play in your (and my) life. Part 2 will be a very brief survey with simple answers like Yes or no or on a scale. I will be looking deeper into the role the IBS discussion board played in the life of the sufferers. The results of my first study are included below in my research paper. Please keep in mind that I am a student, I have not proven anything. This is just my interpretation and perception, mostly based off my own experience. Some of your quotes you will see in this paper but all the usernames are edited out. If you have any feedback or comments on the content of the research please feel free to email me. Just a little info for you about sociology, as a researcher it is common for questions to be left unanswered as well as provoke more questions once research has began as is with me. My main concern is to give voice to our community of IBS sufferers. By the way, I tried eating by a means called natural hygiene. I learned it in a book called "Fit for Life" I did it to try and regulate my weight and increase my energy. What I found is it detoxified my system. Fixed my IBS and acid reflux, gave me energy. It is alot of work and I didn't keep it up so no weight loss, but I felt great. When ever I eat really bad for any period of time my IBS acts up again but never has been as bad as it was originally and then I eat "natural hygiene" way and all is better. Just a little side note of what I found. One of the participants said something about fixing bacteria in their system and I think this is along the line of that theory. Here is the paper:IBS Support Forums: Picking Up where the Doctor Leaves OffOn December 25, 2001, I felt my first pain. It was very uncomfortable. I couldn�t hold myself up any more. I was very bloated but it was Christmas and I had indulged. I figured I just overate. I kept massaging my back. The next day, I was still full. I didn�t eat. The pain was still there. The next day was my birthday. I was still full. I wanted to go out for a birthday dinner but didn�t. The thought of eating anything was out of the question. I went to the movies instead. The pain got worse. I was so uncomfortable in the movie theater seats I couldn�t wait for the movie to end. I decided I better make an appointment with the doctor. I wasn�t able to get an appointment until January 2nd. By then the pain was so great I thought my side was going to split open. At the doctor appointment, the doctor concentrated on two possibilities: 1) Gall Stones or 2) H. Pylori (intestinal bacteria). He had me tested for the H. Pylori and gave me some medicine to try called Aciphex. The Aciphex helped reduce my symptoms but they remained. After waiting over a week for the H. Pylori tests I was informed the results were negative. I still had this pain and bloating. The pain would be worse sometimes than others. Especially when I would lay down which made it hard to breathe as well. I still had that feeling of being full like I had overeaten but since this started I had kept my eating to a minimum. I began to really worry. I had the same symptoms my mother had when she had cancer. I had the pain in the exact same spot she had it. The doctor didn�t say to come back in. I was just sent a note in the mail saying the results were negative. I made another doctor appointment. This time he scheduled me for an Ultrasound. He said that I didn�t look sick, and other than having to lose some weight I other wise seemed healthy. However, without tests he couldn�t be sure of anything. I waited another month before the Ultrasound. I started having new symptoms associated with the pain. I began having fevers, shakiness, dizziness, weakness and constipation. I started having episodes that included short of breath, accelerated heart rate and an overwhelmingly sudden urge to defecate but never could. It was so uncomfortable to lie down I had trouble sleeping and began missing work. I was afraid to eat so I began losing weight. The Ultrasound results came back negative. This time the doctor did not send me any note. I called the office and they told me I would have to make another appointment to find out the results. He was booked so two weeks later I had an appointment scheduled. I began keeping a log of my symptoms, when I had them, what they were and what I did about it. I noticed that they usually became worse right after I ate or at times of stress. At the appointment, he told me that the Ultrasound came back normal. �Where do we go from here?� I asked. All I could think of is I have cancer and they are not going to find it until it is too late. I gave the doctor the list of symptoms, but he didn�t even look at them. He said he doesn�t know anything without tests. I pointed out that I would have episodes after I ate and thought it might be blood sugar. I have a family history of both hypo and hyperglycemia. I felt like the doctor was tired of bothering with me. With little explanation, he sent me for an upper G.I. and some blood tests. I went to make an appointment with the hospital and it would be another month and a half before I could get an appointment. The upper G.I. comes and goes. I am still having the symptoms and am worried. The symptoms come and go and at this point living and managing my day becomes a challenge. I don�t know what to eat, I�m afraid to eat because I don�t know if my symptoms will be triggered. I am reluctant to go anywhere or do anything for fear of being uncomfortably miserable. I lay in bed at night trying to figure out what is wrong with me. I didn�t hear anything from the Dr. so once again I make an appointment. Another month goes by before I go to the doctor to find out that my upper G.I. was NORMAL. At this point hearing that you are normal actually has the reverse affect of what you think it would. It is the fact that I know there is something wrong with me, but the doctor can�t find it that gives me no peace of mind. He decides it is time to send me to a Gastrointestinal Specialist. I began scanning my Mayo medical book for a list of symptoms of what it could be. I looked in the entire gastrointestinal section. I couldn�t find anything that fit my symptoms exactly. I looked at diabetes, blood pressure. I found nothing. Then to the Internet, on medical sites like Web M.D. I found nothing. I decided to look for my one basic agonizing symptom. I went to www.google.com and typed in the search field, �pain on right side�. The search produced many results. I noticed they all seemed to be from bulletin board/support pages. I began clicking on pages. I was brought to support forum for gastronomical ailments. What I found was conversation after conversation of topics from complete strangers that seem to have experiences that mirrored my own. I read message after message from people with the same symptoms and experiences that I have. Going to see their doctors over and over, taking test after test and questioning what is wrong with them. Most of these people have had these symptoms for years. Some, like myself, felt like hypochondriacs. Finally, I come across a message with a person who has all the symptoms I have, even the �pain on the right side� exactly the place where I have it and reveals that the Dr. told her she had IBS. I had heard of IBS and for a few years thought I might have had it but my symptoms were not as severe as those listed on the information that I had read at that time. Now, I had symptoms that I never heard of until now after reading this forum. I had some peace of mind. I see the Gastro-intestinal Specialist, Dr. Aslan, a nervous, balding man with a half way consumed Venti from Starbucks on his desk, rocking quickly in his chair says, �It sounds to me like Irritable Bowel Syndrome, increase your fiber to 40-50 grams per day. You will need a colonoscopy to give you a diagnosis�. He rushed me out the door and I didn�t see him again until the colonoscopy, which confirmed is assumption. He told me the day of the procedure, but by that time I had been consulting the support forums and studying about IBS. I began eating around 45 grams of fiber a day and my symptoms got better. By the time I had the colonoscopy, I didn�t have the symptoms anymore. From the day I started going to the doctor up to the day I was diagnosed, 10 months had passed. I am fortunate I had the support forums to turn to during my personal crisis. It isn�t easy finding someone who will listen to the graphic description of symptoms that an IBS sufferer has to talk about. IntroductionIrritable Bowel Syndrome is a phenomenon that affects 10%-20% of the population (Farthing, 1995). It is the most common disease diagnosed by gastroenterologists and one of the most common disorders seen by all physicians. In the United States the condition accounts for an estimated 2.4-3.5 million visits to physicians each year and 2.2 million prescriptions are issued (Farthing, 1995). It is also a major contributor to employee absenteeism. The disorder is categorized by a group of symptoms and diagnosis follows several examinations and procedures where a specialist finally rules out other causes of the symptoms. In other words, Irritable Bowel Syndrome (IBS) is a disorder that is not biologically identifiable by any tests. More importantly, its cause is unknown. The medical field has not been able to define a standardized practice for treatment that works for everyone because symptoms vary from patient to patient. Current practice is to treat IBS by its severity. Initial treatment begins with dietary or lifestyle changes. For moderate symptoms the use of a diary to help identify factors that bring on, or "trigger" symptoms or investigating and learning stress management, hypnosis, or relaxation techniques. Drug therapy, which will depend on your predominant symptom and the use of medications requires a careful evaluation of the nature and severity of symptoms, exclusion of other disorders, and a determination of which medication is best suited to you. If symptoms are severe, biofeedback therapy, or behavioral treatments, and pain treatment centers could be added to other treatments for mentioned. There have been several names for this disease and several classifications and re-classifications. Since it�s documented origins as Mucous colitis in Sir Williams Osler�s The Principles and Practice of Medicine, first published in 1892, IBS has been referred to as spastic colon, mucous colitis, spastic colitis, nervous stomach, or irritable colon. Only about 30% of IBS sufferers go to the doctor for their symptoms. This percentage also reflects the number of IBS sufferers whose symptoms are moderate to severe. Research is particularly important to provide answers for the medical field and help for IBS sufferers. However, the focus of this research concentrates on the necessity of the IBS Support Forum.The intent of this research is to give voice to the 20% of the population who is suffering from this disease. It is to explain why they need to use the support forums to self-diagnose, self-treat, and compare doctor explanations and recommendations. They join the forum trying to find answers to their questions and discuss the various symptoms they may share. They talk about why going to the bathroom becomes an event, why eating out is not fun anymore, they share what works for them and what doesn�t. Most importantly they gain a peace of mind knowing they are not alone and they obtain answers to questions no one else could give them. As explained in my story, it took ten months for a doctor explanation. Ten months of worrying and panicking. For ten months I loss work and felt like a hypochondriac until I found the forum that offered some help. I question why couldn�t the doctor analyze my symptoms and tell me about this condition early in this ten-month period. I understand the tests would have to be taken but why couldn�t the medical community provide those answers for me? If this condition has been documented in medical books for over 100 years, and is a fairly common disease, then why couldn�t the possibility of this have been brought to my attention earlier? This presents a serious lack of the distribution of information on the medical community�s part. Before diagnosis and after diagnosis I use these forums for information of this condition, not the doctors. The more I read on the forums the more apparent is this use of the forums by others who feel exactly the same way I do. It is because of this that I began to explore the theory that the IBS Support Forums are necessary to distribute information about this disease that the medical community has not competently provided. MethodsI have employed the use of two methods to gather evidence, context analysis and an interview which was a set of standardized questions mostly dichotomous in nature but also offered the volunteer subject to elaborate and share any information they wished. The volunteer subjects where found on two IBS support Forums where I registered as a member twice. The first membership I registered as IBSresearcher, which I identified myself as a student researcher in need of volunteers for IBS research. The second member account was an anonymous member who actively reviewed and engaged in forum conversations. This second membership was primarily used for the context analysis part of this research where I studied the various conversations for content that supports the necessity of the forum and demonstrates the lack of support and information from the medical community. I logged on to the web sites www.IBSgroup.org and www.aboutibs.org under the member name IBSresearcher and posted a new message identifying myself as a student researcher suffering from IBS in need of volunteers. I stated that my intent was for the sole purpose to benefit and give voice to IBS sufferers. I obtained interviews from sixteen anonymous IBS support forum members who I know only by their member names. The member names only will be used in this research when necessary to protect the identity of the volunteers. *** Member names edited out of this version***Measures of Interviews The first part of the measures explanations will concentrate on the interviews. I used a set of standardized questions. Six of these questions where dichotomous, using Yes or No answers for measurement. The other 4 questions were asking for information or explanations of experiences but all questions allowed for elaboration by subjects. The first question asked what forum did they find the request for interviews. This question was intended to show that the subject was an active IBS forum member. The only way to gain access to my contact information was through member ship on both forums. All sixteen volunteer subjects responded with one of the two boards I used as the source for the volunteer request. The second question was to identify whether or not the volunteer subject has IBS. All Sixteen subjects replied with a Yes answer. This was to demonstrate that I was conversing with subjects who believed to be suffering from IBS. This question did have the option for a third possible answer being �I don�t know� or �I�m not sure� but all of the subjects replied with a firm yes. The third question, �Have you been diagnosed with IBS from a Dr.?� brought interesting results. Four out of sixteen (25%) subjects stated a doctor had not diagnosed them with IBS. Two of the remaining twelve subjects stated they were diagnosed without the collection of tests used to rule out other causes of their symptoms. One on these subjects stated being diagnosed by an emergency room doctor and the other by an OBGYN referred the subject to a gastro-intestinal specialist who later diagnosed the subject with IBS. The OBGYN also began treating the subject for IBS by prescribing anti-depressants. One subject�s answer to this question was, �Yes. He didn�t do anything for it though but told me to eat more fiber and drink more water or something. I haven�t seen that doctor since, so no other doctor I�ve seen knows about it and I�m not being treated for it now, though I�m pretty sure it�s gotten worse since then�. Another answer by subject named *edited* explained, �Officially diagnosed this year. I�ve had GERD, Gastritis and he thought it might be that. I have all kinds of tests, but nothing ever shows anything really wrong with me, so he just said it was IBS and there was nothing I could do�. The information provided by these subjects on this question demonstrated a lack of standardization of diagnosis methods and treatments. Some of them completed the cycle of doctor visits and tests and other�s went on a doctors assumption that it was IBS with no clear and definite diagnosis or ruling out of other ailments leaving the patient without closure or direction to combat this disease. The fourth question and fifth questions pertain to the duration of their illness. How long they have had IBS and how long after symptoms began did they consult a doctor. The sufferers reported having the disorder from a range of 1 year to 34 years. Some subjects reported having symptoms during childhood. Many sought a doctor�s assistance after symptoms changed or progressed which ranged anywhere from one month to ten years. I asked the question, �What do you attribute your development of IBS to?� I asked this question because it is fairly common knowledge among the IBS community that the cause is unknown and given the limited information regarding this disorder I wanted to know how the subjects perceived their illness given their various experiences and the information they have gathered. Ten out of sixteen thought it was a biological problem and provided their explanations such as childbirth, eating disorder, endometriosis, triglycerides, diet, smoking, hormone fluctuation and antibiotic use. The subjects explained some correlation between these problems and the on set or progression of IBS symptoms, some even proclaiming they know the cause and cure. None of the causes or cures is the same. I tested to see if the unexplained symptoms sparked investigation on their part so they could make sense of the illness. �I�ve had IBS for quite some time and never knew what my problem was. For a while I thought I was a hypochondriac�I started asking around and looking up heath problems and symptoms on-line. It wasn�t until a couple of months ago that I read about IBS and noticed that all of my symptoms fell in line��, answered subject *edited*. Thirteen of the sixteen subjects answered �Yes� to this question. Most of them gave answers like the one above. Other answers included, �Like crazy�, �I wanted to know as much as possible about causes and anything to help me get through the attacks�, and �Yes, it seemed as if they tested me for everything�. Existing research suggests that many IBS sufferers also suffer from a range of anxiety and/or panic disorders. A recent poll on www.About.Com, asked the question �Do you have an anxiety disorder & IBS?� Out of 385 respondents 336 (87%) said Yes, 17 (4%) said No and 32 (8%) said they didn�t know. This coincides with other research done by many organizations that looked at depression and other mental disorders as correlates. The Medical University of South Carolina showed 50%-90% of people seeking treatment for IBS have one or more psychiatric conditions (Henning, 2001). I asked my subjects, �Do you suffer from Post Traumatic Stress disorder, Generalized Anxiety disorder, Panic Disorder, depression or suspect you do? Which one(s)? � Half of the subjects reported one or more disorders, the majority included depression and anxiety disorder. I wanted to know from this group if IBS or the disorder came first and half of this group reported having the other ailment initially. �I believe that my social anxiety created my IBS. I had never had stomach troubles before the anxiety started�, answers member *edited*, yet member *edited* exclaimed, ��it followed directly upon smoking. It seemed self�evident at the time. I did have one business failure well into my IBS experience. That coincided with an increase in overall symptom severity, however it certainly was not the general cause�. Yet the opposing view from member *edited*, a depression sufferer is �In my opinion, I am depressed when I am in a lot of pain�. Member *edited* explains, �I have Panic disorder which I do have under control now, I have had depression off and on but it is my opinion that IBS causes these disorders and not the other way around�. Another member, *edited*, agrees, �I think the IBS has caused what anxieties I might have�. It is hard to say if one leads to the other. Slightly more subjects stated the IBS created the anxiety/panic disorder. I agree with member *edited*l who says, �I think they feed off each other�. I asked my subjects if they would be willing to be contacted for a follow up interview, all replied yes. My last question was for my own feed back about how they felt about the interview and the way I went about it. I wanted to know if I made it comfortable for them to confess private details about their health. Most subjects replied with positive feed back about the way I conducted the interview. But what really caught my attention were the other comments made. �It made me put my feelings into words so it was helpful�, states *edited*. �A little uncomfortable but not a lot since you don�t know who I am�but I was happy to help with research about IBS�, says *edited*. Other comments include, �Thanks for the opportunity to help you�, �It helps me to discuss it and if your research could possibly help me then I don�t mind helping you�, �It was encouraging to see that there are people working on finding answers�. It is easy to see from these responses, that the subjects were eager to help with research. They are desperate for answers and will do anything to contribute to the cause of finding cures, commonalities, information or explanations. They also don�t have ample opportunity for a sounding board. This is another reason for attending the Forum and for participating in this interview. The doctors just don�t seem to care about the details of this disease and don�t seem to understand the patients. Some final comments to express the lack of medical help from *edited*, �I have found a way to fix my problem, without the doctor�s help. Doctors are too quick to prescribe drugs which leads to more symptoms. Your body is not lacking prescription drugs�. *edited* expresses the frustration of how due to the lack of medical knowledge the doctors tend to blame IBS on psychological reasons, �In my opinion, the doctors say that IBS is a mental problem is because they don�t know exactly what it is, they don�t have an effective help then they guide for a psychologist�. *edited* demonstrates the need for a sounding board, �I realized that it could be constipation due to withholding emotions, and then �**** attacks� when I can�t take anymore�, which only another IBS sufferer is going to understand. Finally, an expression of the willingness of the IBS sufferer to help assist the medical community to find answers and example of a detrimental lack of information distribution, �One research group did ask me if I would take anti-depressants as an IBS sufferer, since they thought there was a correlation between IBS and depression, which I had never thought of or heard of at that time�. Content Analysis One of the most important uses of the IBS Support forum is self-diagnosis. In most cases their seems to be the lack knowledge among primary care doctors, who often don�t seem to know the symptoms of a disease that effects 20% of the population. This tends to send the IBS suffer in frenzy, investigating symptoms, talking to anyone who will listen, searching for clues that will confirm some problem and offer piece of mind. There is also a lack of communication from the gastro-intestinal specialists who do. And a commonality I have found is when the OBGYN whose practice is to listen carefully to symptoms, diagnosis and treats a gastro-intestinal ailment. The suffer tends to struggle to continue searching for a problem when others tell them it is in their head and make them feel like a hypochondriac. Many sufferers lose any faith or confidence they had in their doctors. The following are message was found on IBS support forum demonstrating all of these points.�They did the iodine test to check my gallbladder. It showed that my gallbladder was not functioning. They said that the iodine bypassed my gallbladder and that indicated that the gallbladder was not functioning and that seemed to be my problem. When they went in to remove it there was not a gallbladder there. My doctor said that it is rare but some people are born without a gallbladder. But I am still not convinced that it�s not in there somewhere hiding. I went to my gynecologist you know for my regular checkup and I told him about my problems. He told me by my symptoms it sounded like I have IBS. He handed me a printout and I read it and I said I have every one of these. He says the pain I am having in my lower quadrant is my colon having spasms. He prescribed me Bentyl and when I take the Bentyl I don't have them. So that is how my gyno is treating me now for my IBS. I went to a gastroenterologists and he did nothing but do a upper and lower gi. Told me he found nothing medically wrong. So of course my husband thinks its all in my head. �The following is a conversation found on the support forum by a subject who is trying to self diagnose and needs some support. The discussion starts with a topic heading. This particular one is identical to the one I was searching for when I first had my symptoms. The subject puts an message out to the entire support community. This topic, �General Discussion - Anyone with pain on the right side?� is a sufferer trying to find out what is wrong with her. Her message received 100 responses. The community is very supportive. �I am very new to this, but I was wondering if anyone else has pain on their right side? Mine is just right of my stomach. It feels like someoone has a fist there, or like there is a real tight place. I started taking Bentyl and I'm not really sure if it has helped that much. The gas and pressure are horrible. Any suggestions? Thanks for the help.��YES! I have constant pain on the right side just below the ribs.I also have the feeling of a fist and SEVERE fullness there. I have had every test known and not one has come back with a reason for it.�These messages within this conversation thread express the frustration of receiving no diagnosis or explanation for the symptoms, the lack of support from family and the feeling of having hypocondriac tendencies. It demonstrates the necessity for the forum by the support and understanding for a complete stranger and the piece of mind that comes with such support;�Hi, I just found this forum. I was amazed to find others who have gone through, and are going through, what I have for several years. I have felt like the doctors are blowing me off, and the latest theory is that I need surgery for scar tissue, even though they also tell me that if there is any, it will likely recur! Naturally I'm not too anxious to do that right away... Sometimes I feel like I am losing my mind. I feel like a constant complainer, and sometimes I just deal with it in silence because I feel my family is tired of hearing about it. No doctor has helped me yet, the GI doc sent me for the scar tissue surgery, although he hasn't run any tests on my small intestine at all.��It is not all in your mind. You are not making it up. I'm sure you would far rather be getting on with your life than being stuck with suffering and dealing with this. You are doing the absolutely right thing by continuing your search for help. Many people have trouble finding the right doctor.��Thanks so much for answering me, I think I just needed to "talk" to someone who would understand a little. I am so thankful that I found this forum!�The forum also acts as a sounding board. After viewing the content of these messages and objective observer may understand why friends, family and doctors do not wish to listen to the problems the IBS sufferer faces. However, the fellow sufferer understands, these aren�t ramblings of someone with bad taste in conversations, this is life after IBS; �I have bloating, constipation, rarely diarrhea, colon feels like I have swallowed a ball and its stuck in their, occasional groin pain, nausea. I also have hemmoroidal problems but I think that is from all the straining trying to have bm's.��I notice that I am going (BM) sporatically!!! We were at a store the other day, and all of a sudden I told my Husband " I have to go home and go to Bathroom!!!" So I left him at the store, drove home, did what I had to do and met him back at the store!! WHEW!!!!! I nearly didn't make it to the toilet!! Which is scarey because when I am at work, sometimes I can't just leave and go to BR. I am always afraid I will **** in my pants. LOL!!�The conversation topics you will find on these support forums sums up the needs of the suffers. Conversations such as �Do you need a colonoscopy???�, will reveal the need for the sufferer to know about the many medical procedures they are about to experience and they share their fears, �Tell me what they do to you & how does it feel. I'm scared!!!�. Other�s search for medical advice from others as seen in topic �question about the prescription Bentyl�, �Peppermint oil capsules� and �Introducing myself and Donnatal question�. Some want to see if they have the same symptoms as others, �INTENSE stomach pains�please help!!� and �Bloating (severe) and constipation�. Finally, there is the all too common query for any answers for the sufferer, �still suffering, any relief out there?�Conclusion Irritable Bowel syndrome it self is not a life threatening disease, but its symptoms can mimic other life threatening diseases that cause the sufferer extreme fear and anxiety. The IBS support forum acts as an agent to calm the fears of the sufferer. It is a way of finding out that there is indeed something wrong with them, even if current medical practices cannot figure it out. It provides them with someone who will listen to the various symptoms and episodes that may not be typical. They can finally, after months or years of doctor visits and uncomfortable procedures, find answers to their questions. It provides the kind of information the doctors do not provide, like the details of a colonoscopy procedure. Most importantly it offers them piece of mind, and the knowledge that it isn�t �all in their head�. What the IBS Support Forum does demonstrate, is the need for a cooperative movement on the medical community�s part. There is a need to educate doctors about this common disease, so they can tell the patients about IBS early upon the first sign of symptoms. If there is not a standard diagnosis or treatment, then they should at least have a standard practice to direct the patient towards self help methods. They can easily do this by encouraging the use of the IBS Support Forum, where the will find an abundance of information and support.
 

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Discussion Starter · #3 ·
I don't think this is the one I filled out since no discussion of an interview and it did not involve private email. The one I answered had about 14 questions, some yes/no, others you could elaborate. There were about 40 responses total across the three main boards. I don't think it was a researcher. Does anyone remember what I'm talking about? Thanks.
 
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