happy tales: women with ibs-d page nineteen
The tale of...Mandie (February 2009)
Yogurt! Yogurt! Yogurt! That has become my battle cry against IBS...I'm 35 and I have been suffering from IBS since I was a pre-teen. I can relate to most all of the stories I've read on this site, including the ones where people suffer from the anxiety of having to go somewhere where there may not be a suitable bathroom available, never knowing when pain's going to strike, people's misunderstanding of how you feel, having to construct makeshift porta-potties for the road, etc.
I'm a musician/singer, and have had times where I've actually had to leave the stage mid-performance because I was interrupted by severe pain and had to go right now! Plus I'm on the road for so many hours with no bathroom. I was not officially diagnosed until about a year ago. My IBS was masked by other issues like my severe endometriosis, and resulting large endometrioma, which led to the need for a complete hysterectomy.
This made me feel a lot better, but didn't solve my intestinal cramping, pain and diarrhea. Then, just last year, I went through five months of extreme nausea, lost 30 pounds from being so sick and having horrible diarrhea all the time, and found out my gallbladder simply wasn't functioning fully (no stones or anything like that). So I got that removed. It didn't help any IBS symptoms, but got rid of the nausea.
The good part is that before my gallbladder was removed, I was living on an occasional spoonful of plain yogurt and a cracker or two each day. So when I had the surgery and had come through the recovery period, I tried incorporating yogurt into my diet on a regular basis. I have found that if I eat a container of yogurt before I eat anything else, it drastically improves how my body reacts to the food. I have experienced less bloating, less pain, less diarrhea, and am finally feeling like I have at least some control over how I feel. A two-week-long stretch of regular bowel activity is nothing less than thrilling after all these years!
Bear in mind, I still have to avoid things which I know bother me, like beef and lettuce to name a couple. In addition, I have experimented with many different kinds of yogurts and have found that some brands or varieties have much less of a positive effect than others, and I think the Activia stuff actually made me very sick (it was way too painful to try it again just to confirm my suspicions!).
To date, the yogurt that works best for me is Yoplait regular! (red and white container). The light version (blue and white container) of Yoplait didn't work nearly as well for me, for some reason. It's great - I can eat any variety of the regular Yoplait, and get the same benefits, regardless of the flavor I choose. Plus, Yoplait now offers a family pack, which brings down the cost per unit, for bulk yogurt buyers like me.
It has really changed my outlook, and has removed some of my anxiety, letting me feel more in control of how I feel than before. I would recommend that IBS sufferers try eating two to four yogurts a day, especially about 15 minutes before meals. I also have a yogurt right after I wake up, to start the day off right. If I forget to eat yogurt on any given day, before the day is over, I will have diarrhea which usually takes about two or three days and plenty more yogurt to get rid of. If you're going to do it you must be consistent! Best wishes to you all! I feel you, man!
E-mail Mandie: mandie.hargis@REMOVETHISPLEASEgmail.com
The tale of...Kathy (August 2009)
I have been battling with IBS all my life. It really got worse this last four years. I have been to numerous doctors about my symptoms but no-one could help me. It was like a yoyo, it got better and then got worse. I have spent tons of money on medication, vitamins, books and some of it kind of helped but I was still having a lot of intestinal pain, constipation, bloating, gas, acid reflux, muscle tightness, dermatitis and diarrhea. Then my brain started to malfunction. My breathing was freezing up, and I would have to force myself to breathe. It felt like sleep apnea.
I decided to go to the IBS treatment center in Seattle, Washington. They tested me for food allergies, parasites, bacteria, yeast, and some other stuff, and they found lots of issues. I had pinworms, candida, bad bacteria, c. difficile and numerous food allergies. My body was so out of whack. I did go to a naturopath and they did a skin-prick test for food allergies but there was a discrepancy.
It is expensive but worth it. The IBS treatment center figured out the problem within a couple of months. But you have to be committed to get off a lot of certain foods but I almost feel like a normal person now. No more brain issues. I still have some issues to resolve but I'm on the road to recovery. Don't give up, there are good doctors out there.
E-mail Kathy: robandkathsnow@REMOVETHISPLEASEaol.com
The tale of...S (8 August 2009)
I am from the UK and thought you might like to share my story. I was a fit and seemingly healthy person until my gallbladder was removed in 1993, and after this my years of misery began. I was unwell for about a year after this and eventually IBS and GERD were diagnosed. At this stage the IBS was inconvenient but did not impinge radically on my life, but I had to plan all outings carefully and make sure I did not eat if I was going to be out for more than an hour after the meal.
I managed, but in 1997 I was diagnosed with Graves' disease (Thyroid) which was treated with radioactive iodine. After this I had a massive range of symptoms which were all put down to my thyroid medication being uncontrolled, despite all results being OK. My IBS went into overdrive and caused me so much stress that I had to give up my career years earlier than I had intended. From being an extrovert and outgoing person I turned into one with irrational fears and stayed more or less confined to my home. My husband has stuck by me through all this.
One of the most distressing side effects was severe pain in every inch of my body. I was tested for all sorts of severe problems including MS and nothing was found. To cut a long story short I moved to another area of the country and instead of being told I was a hypochondriac or suffering from a variety of syndromes for which there was no cure, I was taken seriously by my new GP, who referred me to a consultant rheumatologist who listened to my story and took one look at me and immediately said that she thought I was suffering from a vitamin D deficiency. After tests she rang me to tell me that my vitamin D level was the lowest she had ever seen (8nmol, normal is 50-140nmol).
I started treatment last month, starting with a booster injection and continuing with daily Calcichew tablets. I have also taken wheat out of my diet because I need to lose seven stone (all the comfort eating at home). My IBS has already improved out of recognition and I have spent my first full day out in 12 years without having to worry about the proximity of toilets etc. Also my aches and pains are lessening. I now know there is a link between IBS and vitamin D in my case - believe it or not all my other symptoms are disappearing and I am starting to regain my energy.
What a pity the doctors spent so much time and money on investigating more serious illnesses when a simple vitamin d test years ago would have sorted out my problems. Also I would not have had to retire early with a radically reduced pension. I feel I have lost years of my life but at least I can now enjoy my retirement. It is well worth asking your doctor to check your vitamin D levels if you have unspecified aches and pains and IBS just to rule it in or out.
If your level has got very low you may need more than the supplements sold over the counter in chemists. Multivitamins often don't contain vitamin D and you would need to eat the equivalent of about 10 tins of oily fish a week to get the missing vitamin d from your diet. This is especially true if you live in the northern hemisphere where there is insufficient sunlight in winter to top you up. Good luck to everyone who is trying to find a solution for IBS - I was looking for the solution to other problems and my IBS virtually disappearing has been a very welcome bonus for me.
Update on S...
I did not realize how much IBS (let alone the other symptoms) had ruled my life until the treatment of vitamin D deficiency kicked in and I realized that the treatment is still working. My IBS has for the most part gone. No more severe griping pains after meals and at other spurious times. No more carrying spare underwear if I plucked up the courage to leave home, no more room deodorizer in the handbag, no more...well, you get the picture without me going into the graphic detail most of you are familiar with.
The best thing is being able to go out and enjoy myself without fear of embarrassment. I can now plan holidays, outings and above all look forward to the birth of my first grandchild without giving a thought to the dreaded IBS. Although I do not have celiac disease I have also removed wheat from my diet as I found it made me bloated, but it is the vitamin D problem that was making my IBS intolerable.
By the way I now eat at least five to six portions of fresh fruit and veg every day, protein, fat (to help the absorption of vitamin d) and carbohydrate in the form of corn crackers. All the fruit and veg I eat is uncooked. I eat 1500 calories a day, do not feel hungry and I have lost over two stone (28 pounds) in two months without surgery but with mild aerobic exercise, so this is a bonus to my IBS disappearing (I do need to lose another four stone put on by feeling sorry for myself). Perhaps I should write a diet book! I haven't the time now I am going out so much!
I know that there are many reasons for IBS and how debilitating it is. Until you suffer from it you do not realize how unpleasant an illness it is. And believe me, when it goes away it is the greatest feeling in the world. I am not sure that I will never suffer from IBS again but it's wonderful to be rid of it for the moment. I can now get my life back on track.
Good luck to all sufferers - I hope you also get relief from this unpleasant, painful and life-sapping ailment! No-one deserves this illness, it just grinds you down. I know - I nearly topped myself at my lowest ebb. Only the support of my family kept me going. Unfortunately I did not find this site until this year and would have benefited from it. IBS suffering can be a very lonely place without support. Keep up the good work!
The tale of...Laura (5 September 2009)
I just came across this site, and I am so happy to be reading all the stories about IBS, I always felt I must be the only one with this dreadful debilitating problem. I had my first colonoscopy in 1992 and have had several since. It has almost ruined my life, and never being able to go very far, especially in the morning, is the worst.
I am 62 now and in four weeks my husband and I will be taking a long road trip. I have been so anxious about it, wondering what I will do in traffic with no restrooms around. My husband doesn't seem to understand either, saying 'Why do you need to go again?' I have cried over this as it is an awful way to live.
I saw my GP today and she has given me Lomotil, which gave me hope after reading positive reports from those who have IBS. I can't wait to try them tomorrow to see how I go. I also had my gallbladder removed 39 years ago and I have never been the same after that with bowel problems. My 35 year-old son had his removed three years ago and also suffers the same. I now feel I am not alone with this awful disease, and I feel positive that my trip will be OK with Lomotil.
E-mail Laura: kenandlaurina@REMOVETHISPLEASEhotmail.com
The tale of...Mandy (5 September 2009)
When I was four months pregnant my gallbladder was removed due to stones when I had surgery for a suspected Crohn's disease attack (ended up being an adhesion which was strangling my bowel). I was fine for the remainder of my pregnancy but after I gave birth that's when the severe diarrhea began. Mostly in the morning, about four times. I was 37, I couldn't leave home (especially in the morning) and depression set in. I had osteopenia in my hips (from calcium deficiency) and so on. Life sucked!
Finally after about a year I got referred to a gastro specialist who told me straight away it was bile salt diarrhea and subscribed Questran Light. Fantastic! It took about two days to work. Why can't they tell you this could be a possible side effect of gallbladder removal? It could've saved me from a lot of stress and post-natal depression!
I'm now 41 and I take Questran Light still, a low dose of an anti-depressant (Effexor - also great), calcium and other vitamins. Life is now good. I didn't know Questran depleted the uptake of vitamins though which was why my iron levels became so low maybe? Thanks to this site I have become more informed. Pity GPs aren't.
E-mail Mandy: groovy.gecko@REMOVETHISPLEASEbigpond.com
The tale of...B (6 October 2009)
I had IBS pretty badly several years ago. I saw several doctors and they were really unable to help in any way. It was absolute hell. Awful gas pain, feeling like I had to go 24/7 even when I didn't, hours and hours in the bathroom...The only thing I found to be effective was actually bringing my weight down. I started working out and went from around 220lbs to 170lbs and the IBS just disappeared.
I wasn't mega-obese or anything but I am 100% sure that my IBS was directly related to the extra weight my body was dealing with, as I injured my knee two years ago and have now gained a lot of the weight back. I'm up to 200lbs again and guess what? The IBS is back.
The diet/exercise thing really, really, sucks at first (being on an elliptical machine or lifting weights when you have IBS is not fun at all) but if you can make it through the first couple of weeks it's worth it!
The tale of...Linda (19 October 2009)
I was recently diagnosed with chronic (severe) IBS with diarrhea. For almost three years I suffered bad cramping, diarrhea where I would go to the bathroom 10 to 15 times a day several days a week, constant stomach irritation and heavy menstrual bleeding. I finally thought it was due to PMS stuff so I went to a new OBGYN who told me of a newer procedure called Novasure that would take care of the diarrhea from PMS and stop my monthly bleeding, so I said yes - anything to stop the diarrhea and cramping.
Well, that worked for four months, but then I was right back to the same pain and diarrhea. I went back to the OBGYN and was told there was nothing I could do but take Aleve for the pain and go home. For another year I suffered until I couldn't take the pain anymore.
I found an internal specialist who did a lot of testing and x-rays, an upper GI, blood tests (mostly to rule out things) and after weeks of testing she said I suffered from chronic (severe) IBS with diarrhea. She prescribed dicyclomine which has helped me tremendously. I still get attacks but not as many as before. PMS does trigger my attacks more than anything else.
I am in the process of learning what my trigger foods are and trying to limit my stress. Stress is a big trigger for me - I do go to a chiropractor monthly which also helps to relax me. Of course, there is no cure and lifestyle change is a must with this condition.
I continue to take daily medication and I am glad I went to an internal specialist who took my symptoms seriously. I know I will never be free of IBS, but I can learn to control it. I only wish I hadn't waited so long to seek help.
E-mail Linda: lonewolfpal@REMOVETHISPLEASEaol.com
The tale of...Laura (5 November 2009)
I have suffered from IBS for most of my adult life. It was awful, especially during my 20s when all of my friends were out enjoying themselves. Most food and drink upset me, and it was very difficult. Since I was a young child I've had mild eczema and itchy, dry skin. Last year I had to have a mole removed from my skin. The dermatologist asked me about my skin etc and prescribed an anti-histamine to stop the itch. She prescribed cetirizine 10mg once a day, taken before bedtime to stop my scratching in the night.
At first it made me very drowsy in the mornings, and so drowsy that the IBS early morning rush started to improve. The drowsiness was beginning to affect me though, so I decided to switch to a different anti-histamine tablet, but unfortunately the IBS returned.
I now take two cetirizine 10mg tablets every night before bed, and the IBS has gone completely! I can actually now eat what I like, even fish and chips, with no effects whatsoever! I've started to gain weight now and have put on nearly a stone due to the lift on my restricted diet. Cetrizine does make some people drowsy, especially me, but I'm learning to live with it, and it's a small price to pay for being IBS-free and eating and drinking what you like. I'm like a kid in a sweet shop at the moment, enjoying so many foods and drinks, and feeling healthier and happier.
You can buy cetirizine over the counter, you don't need a prescription. I need two a day, but you may find you need either one or three, it just depends. I told my doctor about it and she is very excited and will be suggesting it to other IBS patients. My understanding is that cetirizine is classed as an anti-allergy drug, so if, like me, you are sensitive to many foods and drinks this could be the answer.
Cetirizine is used a lot for seasonal allergies like hayfever etc, and also pet hair allergies. Brand names if you buy over the counter in the UK are Zirtek and Piritize. I really hope this helps some people. I can honestly say one year on that it's changed my life - I'm fatter, but much happier, and easier to be around!
The tale of...Carol (24 November 2009)
I am a woman in her sixties who has suffered with stomach pain and diarrhea since the age of 12. I had my gallbladder removed at 22 as it was non-functioning. My IBS issues grew increasingly worse over the years. I often could not leave my house for days at a time. None of my doctors were able to help me.
I read about Questran and asked my doctor to prescribe it for me. I have been taking half a packet each night before I go to bed. I have not had diarrhea since I started taking it nine days ago. I feel like I have been given a new life! I hope this helps others.
The tale of...Deborah (12 December 2009)
I just wanted to pass on this information, to hopefully help any of you fellow sufferers that have similar stories to mine. I have had IBS with awful pain and diarrhea for over 18 years. I've seen numerous consultants and had all the usual tests and been told to get on with it and take codeine phosphate to control the pain. I'd typically go about an average of nine times a day and feel constantly tired.
About a year ago I went back to my GP again following a really bad six months and he referred me to an IBS center of research in Manchester. I tried every tablet going to control my IBS (including each brand of anti-spasmodics and low dose anti-depressants) and had a whole new set of tests done. Still nothing worked!
I fortunately saw a a doctor who sent me for a nuclear medicine abdominal scan (SeHCAT test) and it turns out I have not got IBS-D but I have bile salt malabsorption. Because I don't absorb my bile salts they leak into my large intestine and cause pain and diarrhea. My consultant was really shocked as I have no history of surgery on my bowel or my gallbladder.
I have now had my first month of Questran sachets and I have not had any diarrhea for the first time in 18 years. I can't tell you how blissful it is to have my life back and not be running to the loo all day. Also to have some sort of medical answer. Apparently it's quite rare to have it, but with so many people being diagnosed with IBS I'm wondering if it's not more common than the doctors think? Do get in touch if you would like any more information. Good luck.
E-mail Deborah: deborahbouchard@REMOVETHISPLEASEmac.com
The tale of...Helen (2 January 2010)
After years of suffering from IBS (I'm now 47 and I have suffered for 25 years - just generally unwell, lethargic and tired continually) I finally identified a major cause for me: wheat and caffeine allergy/intolerance. I'm surprised it took so long for me to identify these problem foods as I have an NHS medical background! I now strictly adhere to the diet and this leaves me really well. An added benefit has been that I now have no asthma symptoms or hypoglycemia. Both disappeared within two weeks!
Within a month of first going on to the diet I had problems with terrible nausea, stomach aches and diarrhea. I felt especially unwell first thing in the morning. I cured this with ginger and turmeric tea every morning (one teaspoon of ginger, one of turmeric, two teaspoons of honey to sweeten and one tablespoon of lemon juice). It works an absolute treat in 20 minutes flat to relieve all the symptoms. I gather it works so well because it is anti-bacterial, anti-fungal, anti-viral and anti-inflammatory. I have to say I was very skeptical when I first tried it as I have tried dozens of so-called remedies, none of which worked. This one really does work and has made a tremendous difference to my wellbeing.
I have also now slowly increased my soluble fiber intake using psyllium. I now feel very, very well. I'm back to work and feeling fabulous and have been for several months now. No symptoms at all.
E-mail Helen: onlineshop@REMOVETHISPLEASEmanx.net
The tale of...Susan (15 February 2010)
I am 57 and I have had IBS on and off for years. Pain and severe bloating are my worst symptoms, and when it's bad I can have accidents with mucus. I have found that it is stress that brings it on for me. I have tried a lot of medications, and Panadeine or Panadeine Forte really helps a lot with the pain. But I have just found something that really works.
For three weeks now, for 10 minutes a day, I have been using a platform vibration machine on a fairly high setting (gradually setting it higher) and now my stomach feels the best and flattest it has been in ages. It also helps to get rid of flatulence. I can wear jeans again without worrying that I will have to unbutton them and want to get home early. I have also lost some weight.
The tale of...Angie (9 April 2010)
I am hoping this post may help a lot of people. Two years ago I started suffering from stomach pain, severe gas, and constant belching. I am 44 and have always taken very good care of myself as I am really into nutrition, exercise and overall taking care of myself. After many tests, extensive blood work, MRIs, a CT scan, and an endoscopy that found non-cancerous polyps that apparently shouldn't be causing any pain, I was beyond frustrated. The GI doctor only wanted to give me medicines that I researched and knew were not for me after looking at the side effects and possible long-term effects.
I finally went to a naturopath who is also chiropractor. He sent five vials of blood off to a lab for a delayed reaction onset allergy testing that is not normally covered under insurance - but I was desperate. The test results say that I am very allergic to corn! Also about 22 other things, but this was the severe one.
The naturopath told me that my immune system was overloaded. As a child I had a lot of eczema and skin reactions. I was also told that the polyps could become cancerous if I didn't get them under control. I have to say I was very skeptical but I decided to try the suggested program and see what would happen.
I had to take several supplements during the day and avoid what I was allergic to for the next six months, then start introducing the foods back in slowly and only occasionally. The first month was actually a bit worse than usual, but within three months I felt like a new person! I was still having some digestion issues, like gas and belching, but no more pain! I have learned how to eat and feel so much better. I also incorporated yoga into my life, about two or three times a week.
E-mail Angie: angi777@REMOVETHISPLEASEhotmail.com
The tale of...Andrea (26 April 2010)
I've had anxiety-induced IBS (IBS-D I guess) for as far back as I can remember, probably from about nine years old (I'm 47 now). One doctor suggested a psychiatrist who kept asking me what I was thinking; all I was thinking of was the pain in my gut and wanting to get out of there to use the loo! I have had panic attacks because of the cramps and feeling of losing control.
My IBS can turn on and off when it likes though, for example we were out walking at night once and it was all I could do to hang on, sweating panic attacks and all, and the minute we walked in the back door all disappeared. Seems to be a security blanket if there's a loo nearby, if not all hell breaks loose! Makes me so mad! I felt like I was nuts!
After having a teary breakdown at the doctors two years ago I was put on Aropax tabs, together with Colofac, and I have had a 99% change. The doctor then suggested a colonoscopy and endoscopy (I also had some reflux, which has settled since a course of Somac) which showed nothing. I didn't even get nervous because of the meds, I thought I'd be a mess. I was going to the loo after breakfast every morning, nice and regular.
Then I was diagnosed with type two diabetes and put on cholesterol tabs which have slightly constipated me, not badly though. Now when I occasionally have an episode, like now and this is only mild, I find it hard to remember just how bad it was. The tablets don't seem to have any side effects so as long as they're working, I'm happy.
E-mail Andrea: radketransport@REMOVETHISPLEASEbigpond.com
The tale of...Pam (28 May 2010)
A few years ago I was diagnosed as hyperinsulimic. I was told to cut potatoes, bread, rice - starches, basically - and sugar, and lose 10% of my body weight pronto. IBS was a given with me - I'm 48 now, 45 at the time of the hyperinsulimic diagnosis - and I've had IBS since I was 15. I didn't go anywhere without Bentyl, which caused its own set of problems. You take it, you're good to go, but then if you take it for a week or more, say on vacation where I'd take four to six a day, at the end of the week you'd be terribly sick with an attack because you hadn't really gone to the bathroom normally. Big catch-22 and horrid merry-go-round. But it was my life.
Then I got the hyperinsulimic diagnosis and my mom got ill at around the same time. I decided to go on basically an Atkins diet, with vegetables and the occasional low carb tortilla, because I could not afford to be sick myself when I had to take care of my mother in various hospitals. To my extreme surprise, the IBS vanished. Stress had always been a big trigger for me, and believe me, the four months my mom was ill were a hugely stressful time for me - and no attacks.
I remembered, then, that I had read once that some people who suffer with IBS can't digest carbs properly. I know it worked for me. That was three years ago, and I've had maybe 10 attacks, and they were brought on by my own ignorance in eating bread and pasta, which I dearly love and miss, but not enough to go back to for good.
It sounds melodramatic to say that this gave me my life back, but it's the truth. I was unable to do many things because I couldn't do things spur of the moment; I hadn't had time to take my meds and let them work. I had started having panic attacks and not being able to be in crowds or in a car with someone else, simply because of the fact that I knew I had to have bathrooms all the time, and felt trapped if I wasn't 'in charge'. All of that is gone! As long as I keep low carb and sugar-free, I'm feeling wonderful - what a wonder to have life back!
E-mail Pam: worldwidewanderer@REMOVETHISPLEASEyahoo.com
The tale of...M (31 July 2010)
I wanted to share my IBS story with other sufferers. I found this website and it's an absolute gift. I was a happy, healthy girl, bit of a worrier but never sick. It all started about three years ago when my life started to fall apart. My uncle died in early 2007. I was in a car accident going to work, and my aunt's house burned down. This was coupled with being moved to a different area in work where one girl went out of her way to make my life a misery, my Dad who has a degenerative disorder developed depression, and other family problems.
In May 2008, one afternoon in work I had the worst case of diarrhea. I would go to the bathroom and I would only be back at my desk and I would have to go again. I was sweating and nauseous. I worked in an open-plan office and I was so embarrassed walking by people's desks every few minutes. I left work at 4pm and thought it was just a stomach upset.
Worse was to come when at the end of the month my boyfriend broke up with me saying he didn't love me anymore after four and a half years, which broke my heart. As we were overseas when this happened, after I came home I tried to keep busy through work and friends. I started feeling sick after everything I ate and the diarrhea I was getting was bad. I would be in work early so at that stage it was easy to hide it from colleagues as it would be over before other people would arrive in.
In September 2008 I went to the first doctor as the diarrhea was getting harder to hide in work and the cramps were something else. I got a lot of tests done and an ultrasound. The ultrasound showed up nothing but the blood test showed I had had glandular fever sometime in the last six months. So the doctor told me that I had a very bad case of IBS as celiac disease was ruled out and to manage as best as possible. I was told to try to cut down on stress as this seemed to be a major problem with me.
As the weeks went by I was in and out to the doctor and I was prescribed Motilium around Christmas which was no help. Back I went to the doctors' surgery and I saw a different doctor. He said as this was going on too long to see a consultant in March 2009 (my first of four). She told me I could be lactose intolerant and to try to stay off dairy. This helped at first and the diarrhea settled a bit.
Then it started up again. It was explosive and could be at anytime of the day which was draining. In work the area I worked in had moved to a different floor and it could take anything up to five minutes to get to the bathroom. Even going out socially was a nightmare as I could eat very little on the menu. Anywhere I went to I had to know where the toilet was before I could relax. So my social life was suffering too.
The worst event for me was when we had a special lunch in work. I ordered a panini with chicken and ham. Within half an hour I was running to the bathroom and nearly didn't make it, and from that day I couldn't hide my problem from other people. I am a shy person so it was my worst nightmare. I was sweating and the room was spinning. I managed to hold on until 4pm and then left. After this I was losing weight, I went down to seven stone 13 pounds from nine and a half stone. I went to see an acupuncturist who was a great help and my weight went up to eight stone.
I went back to my doctor and in the intervening months was prescribed Colpermin and Buscopan. In November of last year I had an endoscope and colonoscopy, which is not a pleasant procedure at all. At the end of November one Saturday night I got a shocking pain in my stomach with vomiting and diarrhea at the same time. This went on till 3am.
In getting my results in December I was talking to the consultant's registrar who treated me with disdain. I was told 'We are running out of tests for you' and 'You are one of the many people the medical profession may be unable to find a cure for'. They did find a leaky polyp in my stomach which was removed. He prescribed amitriptyline which I was told would make me feel better. He never told me this was an anti-depressant and I was never depressed so I didn't take them. He also prescribed Colofac which was full of lactose! After seeing the consultant's registrar I felt very disillusioned and upset with the way I was treated, and I was being offered no help.
In February of this year I ended up getting a horrible pain in my back which felt like my spine was going to snap. I went back again to my doctor who told me an ultrasound was a waste of time. After saying to him I wanted one he wrote me a letter to get the ultrasound privately. On 15 February the ultrasound showed up a diseased gallbladder and two gallstones which have to be removed.
On talking to my own doctor after being diagnosed he told me I will still have IBS but it won't be to the extent that I did have it. Between February and the present time I have been in and out of work (I'm lucky I have a great, understanding boss). I ended up having gastric flu in May and I got my gallbladder removed a little while ago, so presently I am recuperating.
My doctor was right, I still do have IBS, and I have started my food diary again. It is not as bad though and I am coping very well. I still have a bit of diarrhea in the morning but I can live with it. I can have a little dairy now (how I missed ice cream!) but I can't have a lot of it in one day. Pasta just causes my stomach to go crazy and brings on the diarrhea, wind, bloating and the 'creaky pipes' (noisy stomach).
I am a happier person starting my 30s and I am looking forward to the future - starting a course, going traveling, buying a house, maybe meeting a new boyfriend, the list is endless. I hope this will show other people that it will get better and more manageable. A doctor is there is listen so keep talking until they hear you! You know your body and if you feel there is something wrong the chances are there is.
The tale of...Amy (31 July 2010)
I've been suffering from IBS since an attack when I was 19. There were incidents before that, but nothing regular. I had intense pain from a gassy stomach in college, but by far the worst was the unexpected IBS attacks that would just jump me out of nowhere. I would go very cold and then it was like thousands of needles were trying to puncture their way out of the lower part of my colon.
Through the years I may have exacerbated my condition because I would try to 'clean' myself out before I left the house, using coffee, soda and anything with caffeine until they had no effect. Even taking psyllium husk only helped for the first week. So pain with alternating constipation and diarrhea was what I had to put up with every day. I didn't understand why this was happening to me.
I went to all good schools and I thought I'd be doing things to help the world. Instead, worrying about my digestive system turned into panic attacks. Couldn't this problem hit only the bad people like terrorists and leave regular and good people alone?
My family called it my chronic 'bad habit'. They were never very understanding to begin with, but surprisingly, one day my brother sent me info about endometriosis. For anyone with intense pain during periods and IBS symptoms (as well as other symptoms) endometriosis can be a factor.
I was also diagnosed with Hashimoto nodules four years ago. Truthfully, from the research I've been doing, I think doctors should check for this earlier. The doctor just noticed a goiter was forming so he sent me in for testing.
When I finally got the MRI my thyroid was like a mashed-up sponge. I was getting worse. Just going out for a 20-minute walk resulted in exhaustion. I would go to the city for a day and the next day I couldn't get out of bed. My body did this to itself. The only way most doctors test for hypothyroidism is with a blood test on the TSH levels, which I think is insufficient. Since I've been on thyroid replacement medicine my digestive system has more or less come back to normal.
There are also links to low thyroid levels and anxiety and depression. And more and more people are getting diagnosed with thyroid problems. I have more research to back up my theory but it's too much to put here. Putting all these facts together, I started to think, what if a problem with the thyroid is a cause of IBS in most people? Since mostly women have IBS, and many of them have an onset after having children (right after birth a woman's thyroid can get a bit wonky), and of course the thyroid heavily affects metabolism, should people with IBS be asking the doctor to check out their thyroid?
The regular medical practitioners brush off everything as all in your head when in actuality they either don't have the time or don't make the effort to learn more about the continuing medical research. Hopefully this will help people!
The tale of...Gaye (6 August 2010)
I have just stumbled on this site and have found a lot of comfort in reading other people's stories and felt like telling mine. I hope it can help others. I have been diagnosed with IBS for some years. I had bouts of severe constipation, pain and intermittent diarrhea. The pain was so severe that I'd have to sleep with a hot water bottle on my stomach.
A couple of years ago my IBS reached nightmare proportions. I developed severe diarrhea 20 to 30 times a day. My doctor just dismissed me with the same old IBS diagnosis. I was so desperate as my condition meant I needed to consider giving up my job. I felt my life was over. My toenails dropped off due to the inevitable loss of nutrition and I discovered that I had also developed early osteoporosis. All tests showed nothing, which, the doctors told me, meant IBS. I was a mess.
A kind gastroenterologist, in response to my desperation, decided to try one more test. A hydrogen breath test revealed small intestinal bacterial overgrowth, and also showed I could no longer absorb fructose and lactose. I need to follow a no fructose (which is in wheat, fruit and sugar-free products) no lactose diet, which has greatly helped me - but is so hard. I also need to regularly go on antibiotics, when my symptoms get out of control. For my condition, antibiotics are magic. When I am on them I can eat like a normal person.
SIBO apparently can be caused by other conditions, such as thyroid conditions, scleroderma, MS etc. The problem doesn't go away, unless the condition that causes bacteria to proliferate in the wrong spot (the intestine) can be corrected. I am not happy that I can't eat like other people, or that I need to regularly use antibiotics - but I thank God that I have finally been diagnosed and can lead a more normal life. Thank you for reading my story.
E-mail Gaye: gaynorfaulkner@REMOVETHISPLEASEbigpond.com
The tale of...Laura (30 October 2010)
I recently had a colonoscopy for pain and sensitivity in my lower left quadrant. The diagnosis was IBS (what else?). My husband wanted to discuss food allergies with the doc post-procedure and was politely shut up. After all, the bias was IBS. I had gone gluten-free and dairy-free two weeks before the procedure, so I was already healing from inflammation, so the doc could not see evidence of a food allergy.
Weeks later, my gluten, peanut and dairy-free diet changed my life. I am symptom-free and I cannot believe the cognitive difference. Eastern medicine just doesn't cover symptoms, it gets down to the cause. UCLA and other medical schools are finally training doctors right! Thanks to all of you who don't treat with drugs, but understand the body.
The tale of...Sandy (9 November 2010)
I was told for three years that if I lost weight I would feel better, and my issue was weight. I could not imagine 40 pounds making someone feel so ill. They wanted to do surgery for a hiatal hernia. I got scared and didn't. After a three-month sinus infection I went to an allergist. She found out I was allergic to wheat. I stopped eating wheat and had no reflux, no joint pain, I feel great, and the weight fell off. Wheat is so altered, they expect so few people to be able to tolerate wheat in the future. I feel 20 years younger now. I don't think it is that hard to avoid if you stick to it faithfully!
The tale of...Maureen (2 January 2011)
I had 30 years of doctors saying it was IBS. Nothing really worked. Diets, pills, supplements, whatever was out there I was willing to try it. Nothing was 100% and I always ended up with a flare-up. A friend suggested gluten-free products. After a lot of research I decided to give it a try. Sure enough, my body responded favorably. I had 30 days of pure normalcy - something I have not had in years. I decided to test my system and had a roll, and 24 hours later I was sick with diarrhea and stomach cramps.
The doctor tells me that it may not be 100% celiac, but I am gluten sensitive. I am sure I will have flare-ups now and then as gluten is hidden in a lot of things. But before you give up try gluten-free, you should start to feel better within a few days. Give yourself 30 days, although most info says it could take a few months for your body to fully start to heal. I told my doctor I am not going to eat gluten and be tested when I know what my body is telling me.
The tale of...Nancy (9 January 2011)
After years and years of suffering and surgeries for various things etc, I found out that the underlying problem is I am wheat and gluten intolerant. By getting off all grains, since gluten is in all grains, I truly have relief without medication. The medications just masked all the various inflammatory symptoms throughout my body, including my bowels. I was negative for celiac disease but found out I was positive for wheat and gluten intolerance based on genetic (DNA) testing. I had three of a possible four genetic markers, one from one parent, two from the other. The gluten triggers all the inflammation! I hope this helps you.
The tale of...Karen (11 March 2011)
I began having digestion problems 40 years ago at age 14. I have always had problems with either diarrhea or constipation, and 25 years ago IBS was added to the list of diagnoses. Over the past year I became lactose and egg-allergic, and I was also unable to digest meat without pain. Eight months ago I needed to become vegan, but I still had bowel problems. The cutting, stabbing stomach and abdominal pain and bloating remained although it was slightly better.
Then 28 days ago I went gluten-free, and slowly my overall health has moved forward. I still have fatigue but less abdominal problems. Seven days ago I added L-glutamine to my supplement regimen. Each day I notice overall improvements with my bowel health and less bloating. Bowel movements are not yet 'normal' but I only go two or three times a day with no cramping. This is better than up to nine times daily with distress. I'm going to definitely continue with the L-glutamine.
E-mail Karen: colourmyworldvegan@REMOVETHISPLEASEgmail.com
The tale of...Margaret (May 2011)
For a decade I have needed increasing time in bed to get enough sleep. My internist tried a few things but couldn't figure out why. The local sleep doc couldn't figure out any cause and neither could the Mayo sleep doc. Then God told me that I had celiac disease so I stopped eating wheat and went from needing 18 hours in bed to needing 12 or 13. Even after six months on a gluten-free diet I was still needing about 12 hours in bed each day.
At the end of December 2010 my friend suggested that I might have an intestinal yeast infection and I went on the candida diet: basically no sugar, grains or starchy vegetables. This helped some but I still needed 12 hours in bed. I found that my GI system doesn't like grains or starchy vegetables even after yeast infection had healed and I went on the specific carbohydrate diet, the original GI-healing diet on which all of the others are based; see the book Breaking the Vicious Cycle. There are also web resources for SCD recipes. I saw signs that I may not tolerate fructose, but this wasn't enough, though.
I went to a GI doc at Mayo who ordered all sorts of nasty tests, only to tell me that there was nothing structurally wrong with my GI system and give me a diagnosis of IBS. IBS isn't supposed to cause weight loss or disrupted sleep and I was stuck at 12 hours in bed to get eight hours of sleep. I searched the web and told all my friends about my problems. People suggested recording everything I ate, totally fasting, and going on a rotation diet, but nothing seemed feasible for me. I was down to 118 pounds at five foot six which is below my minimum healthy weight by BMI, and a particular concern because I am a dedicated figure skater and I don't want to lose my hard-won muscles.
I buy organic produce at the local farmers' market every Saturday. One farmer sells gluten-free cookies so over the weeks I have asked him why he sells them, how he figured out that he had celiac disease, etc. A few weeks ago he told me that he had used a new supposedly safe wood preservative on his goat house, which the goats had licked off the wood and been poisoned by. He drank the goat milk. Once the vet figured out what was going on, the farmer realized that he had been poisoned by the milk and set out to try to calm down his GI system. He ate only brown rice for three days, then added a new food each day to figure out what he could now eat.
Thus for three days I ate only pumpkin and yogurt and was somewhat better. A friend told me about the lack of enzymes in pasteurized dairy products so I started taking Pancreatin which includes trypsin to break down the casein in the milk, and found that my GI system was much happier. Since then I have added one new food each day and found that ground flaxseed and onions make my system unhappy. I don't eat them any more and I'll avoid any other foods which cause problems. Now my GI system is gradually healing and letting me sleep more soundly. This process takes time, but I know that it is healing me.
E-mail Margaret: pelskate@REMOVETHISPLEASEgmail.com
The tale of...Cheryl (10 May 2011)
I am now in balance 99.9% of the time. I found this site several years ago when I googled 'Is it safe to take Imodium every day'. IBS Tales has been a Godsend, although reading about fellow sufferers makes me sad. I was an OR nurse for many years - imagine how difficult that was! I had bloating, pain and diarrhea hell. I would take so much Imodium that I wouldn't go for a week! And that was almost a blessing.
Anyway, once I knew that it was safe to take Imodium daily, I started a regimen. I also stopped taking my very small doses of amitriptyline, Bentyl and Celexa. I just wanted to get off the drugs and the (sad) insurance stigma here in the US of being on these meds. It was no fun going off the Celexa, which had been prescribed by my very good GI doc; withdrawal from an SSRI is a yucky feeling. But thank goodness I only had about a week of nausea and weirdness.
I started taking one Imodium AM and PM, along with acidophilus AM and PM, and fiber in the afternoon. I also recently started on slippery elm bark, which I think has helped enough to eliminate my PM dose of Imodium. I feel great now, most of the time, thank God. I can travel, which I love to do, mostly without worry. I always keep plenty of Imodium at the ready, though. And an extra pair of underpants, sadly.
I attribute my IBS to a bad bout of traveler's diarrhea when I was 22, encountered on a trip to Jamaica. The chronic symptoms began about a year later, when my daughter was nine months old. I still remember my first attack - I thought it was caused by rich food, having been out to dinner, or the flu. But the symptoms continued relentlessly over the years, and I was diagnosed four years later. The symptoms were somewhat controlled after the diagnosis by daily Metamucil, but that eventually didn't work. I only came to my current state of balance within the last two years, some 30-plus years later. This website has been so helpful in many ways, both emotionally and practically. I hope my treatment can possibly help a fellow sufferer!
The tale of...Tammy (19 September 2011)
I stumbled across this site months ago when I was having one of the worst episodes of IBS-D in my life. My doc had me on a prescription powder which was meant for high cholesterol, but the side effect to the drug was constipation. I had to take this disgusting orange powder three times a day with meals. Not only did it not work, but I was forced to only eat three meals a day, not the typical six smaller that I can tolerate (less gas, bloating etc).
In desperation I googled IBS as well as gallbladder removal side effects - the episode this time resulted from extreme itching that I couldn't remedy or correct. I was (and still am) itchy all over my body...no rash, just insane itching...now I live on two pills of Reactine daily to control the itching.
I discovered links between gallbladder removal and IBS, but I had (mild) IBS prior to the gallbladder removal, but the removal just made the IBS worse. Anyways, in my search as I said, I came across this site and read as much as I could. I read a bit from a woman who tried calcium caltrate, and her story was so similar to mine, I went out that day and bought the calcium caltrate. I quit the disgusting orange powder from the doc that same day.
While it took an entire day to kick in, it worked. Then the next challenge was to get the right amount of calcium caltrate in my system. Turns out it is three pills a day. And my bowel movements are normal for the first time in as long as I can remember! I still have flares, but not as bad. Quitting smoking helped flare-ups, and I have quit drinking soda and am tweaking my meals as well. And guess what? Work is not torture anymore and vacations are not planned around bathrooms to the extent they used to be!
I went to the doc and he tested my calcium levels for three months to confirm that I am not going too high in my calcium levels. I have to have a blood test once a year, but he was happy to hear that this is working for me. And since I am lactose intolerant (I am able to tolerate and even enjoy goat's milk and cheese etc) I hardly ever have cow's milk, cheese, etc and so he encouraged me to continue taking the calcium caltrate.
Well, it has been about eight months on the calcium caltrate and like I said, other than the few flare-ups (these also correspond with my menses by the way) I am ecstatic with the results. Now I tell everyone I can think of...pharmacists...doctors...anyone in a position to help or recommend this treatment to IBS-D sufferers. I just wanted to thank you for all your hard work on this site, and all the great information you have on it. It has saved my sanity!
E-mail Tammy: Tammynemot2@REMOVETHISPLEASEshaw.ca
In early October I had been out of work for six weeks, and I had promised my husband that I would return to work by the second week of October. I ordered a copy of Sophie's Story, read it, and decided that if I was going to get better I was going to have to make that my full-time job because I had been waiting on the doctors and nothing was happening.
So, I started searching and posing questions in the best possible way to try and find what I needed, and I stumbled across sauerkraut. I started out just eating sauerkraut, two to four tablespoons a day. My stomach began to feel better and so I did more research and decided to also start drinking sauerkraut juice.
Unpasteurized sauerkraut is full of probiotics and other beneficial nutrients your body needs, but to receive the full benefit it has to be unpasteurized, which I actually have to order out of PA. Sauerkraut juice is a good juice to drink to help get things moving. I now eat anywhere from one to three tablespoons of sauerkraut a day and drink anywhere from half a cup to a cup of sauerkraut juice a day.
I have been out of bed for nine weeks and back at work for seven weeks and I have not had to miss one single day of work. I have been sick for a while, and I certainly am not back to 'normal' yet, but I am functional and regaining my confidence with each passing day.
I am also doing a few other things as well, but I have no doubt at all that the sauerkraut and the sauerkraut juice played a huge role in helping me. I say this because when I was so sick the sauerkraut and the juice were the only things I was doing initially to battle my problem, because I had tried everything else.
I also use 10 to 12 drops of fennel tincture three times a day and take a few supplements. I am trying to tweak things a little because I still suffer with some mild bloating and indigestion, but I have no doubt that in time that too will be a thing of the past. If this helps only one person, that is one less person who must live a nightmarish lifestyle.
Thank you for writing you story down, I felt like I finally had a friend who got it, who understood that I wasn't faking and that I would rather die than live my life the way I was living. Just knowing that you are not alone in such a horrible situation makes all the difference in the world. Thank you again! Your book was the jump start and motivation I needed because I had completely given up. I was so very sick and tired and sick and tired of being sick. I just wanted it to end!
E-mail Rebecca: beckie03gts@REMOVETHISPLEASEyahoo.com
Sophie, first I'd like to say THANK YOU for writing and publishing your story. While I suffer primarily from diarrhea, and all those other awful symptoms like urgency, gas, bloating, and foul flatulence, I relate to so much of your story. It was like reading a story about myself.
I was diagnosed with IBS when I was 18. That was 26 years ago. I have always felt alone in this battle and that no-one understood. My dad just thinks I am a picky eater and my mom thought I was anorexic for much of my life. Embarrassment and social isolation have ruled my life. I have tried every prescription and over the counter remedy under the sun. I've been to several doctors and have gone through several tests.
Several months ago I decided, based upon the advice of my chiropractor, to go gluten free. I felt better for a while but then about six months later I began having IBS attacks again and felt worse than ever. Long story short, I finally found a doctor who listened to me and acknowledged my pain and symptoms. She ordered various tests and I have been diagnosed with fructose malabsorption, which explains a lot, although further testing to rule out other problems has not been completed. I have an endoscopy and colonoscopy scheduled for next week to check for Crohn's, celiac disease etc, and then I will meet with the doctor for a final diagnosis.
I guess I feel this is a happy tale because I've finally found a doctor who doesn't just look at me and say 'It is just your IBS. Eat more fiber.' I'm on the road to figuring things out I think. After testing, I'm going to try the fructose malabsorption elimination diet or FODMAP elimination diet and I am hopeful that I may begin to feel better. I think the mental anguish of IBS will never go away and I don't know if I can completely recover from the social phobia/anxiety that I've experienced for 26 years, but age is an advantage as I have somewhat overcome the embarrassment of talking about my problems.
E-mail Stephanie: edgrens15@REMOVETHISPLEASEgmail.com
I was recently diagnosed with IBS and I normally suffer most of my pain in the morning. After three hours of waking the pain finally subsides but I am left with bloating for the rest of the day. This makes my stomach look bigger than it really is and makes me not want to eat at all until dinner time. I usually indulge around dinner due to the fact that the bloating makes me not want to eat throughout the rest of the day, and that's why I always wake up in pain.
I tried probiotics but they were so expensive; a 30-day supply was over $20 for even the generic brand! They worked slightly but I could not afford them and found myself stuck with nowhere to turn...until I told my friend about my issue and was surprised to hear that he too has IBS! He told me how well peppermint oil worked for him and two of his friends, so I went on tons of websites and read up on the reviews and facts. It sounds wonderful!
I've run out of probiotics and I am starting to feel horrible once again (this morning was rather unpleasant) and I am awaiting my shipment of peppermint gel capsules in the mail any day now. I cannot wait to try them and feel better!
E-mail Brittany: brittyed@REMOVETHISPLEASEyahoo.com
Although I am still living with IBS after 27 years, I am not putting this in the Sad Tale category as I am hopeful that I will find a treatment to cure my IBS. My IBS started when I was 21. I had anorexia nervosa for a few years. After I recovered and started eating again I started getting really bad stomach pains. I didn't understand at first what was happening.
I remember the first time it happened. I was out with my friends shopping and I was standing in a shop. I suddenly got the most excruciating pains in my stomach and had to run for a toilet. I eventually started watching my diet. I stopped eating spicy foods, apples, fatty foods and basically anything I thought was triggering the stomach upsets. The biggest problem was the emotional fear, the fear of being caught short. I think this has been the worst part of IBS. The pain I could cope with, but the panic and fear of being caught short and embarrassed has been the worst.
I am lucky, I can now eat almost anything I like without being stuck in a toilet at all hours of the day and night holding onto the walls from the pain. IBS is also a lonely illness. I have always felt embarrassed about discussing it and I have tried to manage it to a great extent on my own. Very few of the people who know me know I have IBS.
My IBS is now mainly triggered by fear. Fear of traveling, fear of being stuck somewhere I can't get to a toilet. I am on a merry-go-round of fear. I have decided that by my 50th birthday I will be IBS-free. I am arranging to have hypnotherapy to help relieve the symptoms and hopefully I will be able to start my life anew, be able to do all the things I was once able to do without thinking about it. A bus journey, a train journey, the simple things in life!
E-mail Zandra: zandra_russell@REMOVETHISPLEASEhotmail.com
I'm a 20 year-old woman and I've been dealing with IBS symptoms since I was 15. It wasn't until college that I even began investigating my bowel issues and that lead to lots of awkward tests. There's a standing joke with my fiancee's family that I've had more colonoscopies than the old men in the house. At first I was mortified, like many diagnosed with the disorder.
Throughout my entire testing period I prayed it wasn't IBS. I wanted a curable illness, damn it!When the GI doc finally told me it was IBS I just broke down. It seemed so impossible to deal with, especially as a college student. For a long long while I lead a miserably boring life. I lost 15 pounds because I virtually stopped eating and I never left my dorm. I even missed classes regularly because of my symptoms!
But then one day I got angry. I mean really ridiculously angry. Why should I be embarrassed to have a bowel movement in a public restroom? Why should I not be able to go on road trips with my friends? And how dare some disease try to interfere with my future and hinder my career! I began researching everything about IBS. I experimented with trigger foods, I'm medicated for an anxiety disorder (that would play into my IBS terribly) and I embraced the God-sent pill, Imodium. As a matter of fact, I'm leaving for a road trip to Maine tomorrow night. Can't keep me down, irritable bowel!
This story is long, but what I truly want to say is please, please don't let this thing stop you. Don't be embarrassed, don't feel despair. We have been presented with an extra challenge in life, but we have options. Try everything. I used to laugh at people who told me to 'practice my breathing'. Now it's a huge help in controlling my spasms. Don't give up on the things you love and don't be ashamed to talk to people about your condition. I explain it to everyone I interact with regularly and it eliminates so much of the anxiety behind the disease. Yeah, I poop. So what? Got a problem with it? Don't be around me. End of story. Keep fighting and keep talking about IBS. I wish you all the best of luck.
E-mail Alexandra: aj.tetris@REMOVETHISPLEASEgmail.com