sad tales: women with ibs-d page twenty-eight
The tale of...Priscilla (June 2011)
I was diagnosed with IBS in 1987 but I probably suffered before that. Suffer is the correct term. Back then at age 20 my doctor sent me to a gastrointestinal doctor who accused me of just being bulimic. I was so upset that I never returned. I was thin because everything I ate passed right through me. I get bloating, stomach pain and loose bowels whenever I eat, whatever I eat.
I had my gallbladder removed because it was infected and that made my IBS twice as bad. Afterwards I explained to the doctor that my IBS had got worse, and he admitted that it would. I asked him what I could do. He said to do what I've been doing. I told him I had been taking Imodium and he told me to continue with it. I tried various other medications. Another doctor prescribed another medication that worked except that my eyes turned blood red. I asked him and he said I was allergic to it! He then said that if it worked, I'd have to see if it outweighed the benefits. No.
I rarely go out to eat unless I swallow at least eight Imodium tablets. I live with the pain every day. I do jobs that work around my illness, such as part time jobs or ones where I can disappear for a little bit if necessary. I have a hard time working more than eight hours a day since I cannot eat at work. I know where every bathroom is located. I choose restaurants that have more than one stall. A person with IBS knows the fear and embarrassment that can occur if there isn't a bathroom stall available immediately.
I have been to four primary doctors over the past 20 years and my diagnosis is always the same. I did get a colonoscopy and the gastrointestinal doctor told me it sounded more like Crohn's disease. It turned out to be IBS.
IBS affected my entire life. Some people I dated years ago did not have any compassion or understanding for the illness. Others didn't know how to handle it when I kept running to the bathroom during dinner and would inappropriately say something out loud such as 'Do you have everything under control now?', loud enough that I just wanted to leave in embarrassment. I have recently been seeking employment and as you know I need a position where I can excuse myself whenever necessary and there is a bathroom nearby. I do not disclose that I have IBS during job interviews as I am afraid that the employer would not consider me for the job.
E-mail Priscilla: [email protected]
The tale of...Alicia (2 June 2011)
I am 22 and I have suffered with IBS for two years now. The symptoms started whilst I was at university, in my third year. I returned from a girls' holiday in Malia and was diagnosed with a kidney infection, so the doctor gave me antibiotics to cure it. Unfortunately it returned and so more antibiotics were prescribed. This occurred around five times in five months and during this time I began to experience bouts of diarrhea. My first experience of this was after a meal with the girls, after which I came home with chronic diarrhea.
At first instance I thought it was due to the rich foods I had eaten, and when the diarrhea bouts began to happen every week I thought it was the antibiotics. However after my kidney infections all cleared up and I stopped the antibiotics I realized the diarrhea and bloating and cramps were getting worse and more frequent. I saw a doctor and he tested for celiac etc but finally determined it was IBS.
It was so humiliating to me, I had only been with my boyfriend for a couple of months and after one bad episode staying at his house (which I luckily covered up) I didn't dare stay anymore, which led to me giving unreasonable excuses and caused arguments at first. I started taking Imodium tablets regularly when I was staying at his house or going out with friends or attending university. It made me feel safe as I knew nothing bad could happen.
I eventually got the courage up to tell my boyfriend who has been nothing but supportive and understanding, as have my friends. However IBS has changed my life considerably. I used to be a very outgoing person who wanted to go traveling. Now however I have cut back on nights out which I miss and I stock up on usually a whole packet of Imodium if I do go out. I certainly don't dare go traveling anymore.
I am just about to complete a masters course and I am dreading getting a full-time job as I don't know how I will cope. At the moment I cope with alternating Imodium, taking two one day and none the next to 'release' everything for want of a better word. However once I have a full-time job this will not work and I fear having diarrhea at work. Also the Imodiums are starting to work less as my body has developed an immunity to them. I have just discovered this website and it has given me much comfort as no-one else understands the embarrassment, worry and pain unless they have IBS.
E-mail Alicia: [email protected]
The tale of...Jailed (2 June 2011)
I just found this website yesterday. I am sad to know that there are so many people with miserable lives caused by IBS, however at least I know I am not the only one with this disgusting situation. I am a 28 year-old lady. I was diagnosed with IBS six years ago. My main problems are occasional diarrhea and terrible stomach noises.
Sometime ago I was thinking that I might be able to find a kind of cloth or material that would block the sound, so I could make underwear out of it to cover the stupid damn stomach noises. I searched a lot but could not find anything. Could you imagine how 'normal' life could get if I could just hide my stomach noises?
IBS has ruined my life - school, work, friendships, any normal thing that needs interaction with other people. I am too afraid that it will ultimately ruin my family life as well since I cannot really act as a normal wife, accompanying my husband in society). I have turned into a people-phobic person who is afraid of classes, meetings, parties etc. Once I am in a room with people I get super anxious and crazy that my stomach noises will begin at any moment. I start to sweat and tremble and soon the noises begin. I try to control my mind and think about something else but it is just not working. It is an endless loop of misery.
I have deeply thought about suicide but I know that it will destroy my parents. I love my husband, but I think he can survive and find his normal life back after my death. I hope I will die from an ordinary cause very soon; I really don't want to continue this miserable life in which I always have to a wear the mask of a normal person
The tale of...Amy (15 June 2011)
Ugh! I can relate to you all. In a sick way I am glad there are others out there who can relate, even though no-one should have to suffer with this disease. I have had IBS-D since I was 12, and probably even longer than that, but that is the first truly horrific episode that sticks out. Bike rides were my passion. Need I say more?! The heat gives me anxiety and increases my symptoms ten-fold. Add a plane flight or car ride where I am not driving and I will seriously want to jump ship to avoid embarrassment.
I have had to run pregnant into a factory in the middle of nowhere just to eliminate the problem. I will never know the name of the man who let me into the bathroom, but he was priceless. I take Imodium every morning, two tiny pills. I carry them everywhere.
The problem has increased since my flight from Aruba in January where I had a severe panic attack and my body literally shut down. It makes me sad. I love scuba diving, but now I won't step foot on a boat in fear of having to jump off as I have done before. Sigh. God bless you all in your quest to find out what works. Imodium is all I have after 50 grand in tests and having it for 20 years. I have done it all and tried it all. My record for bathroom visits in one day is 17. Being a female and worrying about embarrassing myself is a crippling feeling. The best to you all!
E-mail Amy: [email protected]
The tale of...Susie (November 2011)
Thank you for sharing your stories. It truly is wonderful to learn I am not some crazy person with a sour belly. And I wanted to share my story. I was diagnosed with IBS as a teen. I was sick for a full two weeks, laid up in bed, and food just ran through me like water. Afterwards I only had diarrhea once a month. Rarely did I ever have pain, but when I did it was bad but fleeting. I long to have those days back.
I had a stressful pregnancy where I almost lost my son twice and had him nine weeks early. After I was told he was healthy (a miracle really), I tried to relax. I went downstairs to the cafe to eat and while chewing, I had this intense, burning sensation in my chest. Well, it slowly got worse. It's been two years and it went from pain and bloating and diarrhea every couple months (in my left side, lower back and pelvic region), to weeks between bouts, to days. I have good days and bad days, but they easily switch. My left side can get so bad it hurts for days on end before finally going away for a while. Pelvic pain is worse during my period.
I was given Buscopan, which I love. The migraines started a few months ago, and they come randomly. I sometimes go a couple weeks, sometimes just a day or two between. I use Tylenol 3 for this but my doctor recently cut down my prescription to test other meds. I hope it helps rather than hinder. And I use Pepto.
I haven't had accidents, but I have been caught in public washrooms, and I live on the edge when I go somewhere without extensive planning. I try not to let this consume me. I still make plans, trips and nights out. It sucks to see my mates eating and drinking without worry, but they are understanding. Work is hard when I don't know how the day is going to be. I went on a conference trip with my class in January and basically prayed not to end up too sick. I did get sick on the last day, which in my world made the trip a success as the other days were almost normal. A recent trip to the city to a wedding gown shop was uneventful and I was so thankful for that.
I miss being normal and carefree. I only hope one day we will finally find new, better ways to deal with this, or better yet, find a cure. I also hope that my children are spared this grief (neither of my parents or siblings nor my fiancé suffer from this). Again, thank you for sharing your experiences, it really does make the quiet sufferers feel a little sense of relief. I know, I have been one for a while now.
E-mail Susie: [email protected]
Well, I've developed a very sensitive stomach over the last 10 to 15 years. I can't tolerate cold meds, eating out or eating certain foods. The docs told me that I have irritable bowel. It has gotten so bad that I am scared to use the john. I've tried Imodium recently as I couldn't take Pepto since I'm nursing my fourth daughter, and it finally worked after the third dose, but I was very bloated and constipated for four days afterwards.
I've lost about 15 pounds in the two months since then because I can't eat or I'll go to the bathroom. Yesterday was the first day I enjoyed ice cream and a croissant again in a long, long time, and right before bed I started running. I thought I was going to throw up. I finally fell asleep because I did a breathing exercise, but this morning I've had aches and my typical IBS symptoms. I took Pepto and for now I'm OK, but I have on and off symptoms.
Why do we get this? I used to be such an active person - sports, going out to the theater, going for long walks, all of which I'm now scared to do! I don't see how we can live on Imodium. I've tried pure aloe juice and that helped a bit, but not anymore I guess. It's getting me so depressed!
I have suffered from IBS for 26 years. I am 59 now and life is not worth living. I had my gallbladder removed last year and I have upper gut problems as well now. I am in pain every day and night with lots of nausea and all the other IBS symptoms. I have also had two nervous breakdowns and I have constant anxiety and depression. I have to look after my husband who has COPD and angina. He has been ill since last October. Then to top it all, today I found out my dog has an enlarged heart, fluid on his lungs and a collapsed windpipe.
I wish every night that I won't wake up in the morning to face the same battle. Like everyone else with IBS I have had all sorts of tests with the same answers, and the only help the same - I will have to live with it. I often wonder whether I would still have IBS if I had money. My heart goes out to everyone with this condition.
E-mail Joyce: [email protected]
I am 69 and I have had IBS for 40 years. It was terrible in the beginning and really affected my life. I always had to be near a bathroom, which was not always easy. I had gotten it pretty well under control by watching what I ate in recent years, but then I fell this summer and broke my hip.
I took Percocet, oxycodone and acetaminophen for five months for pain control and not once during that time did my IBS act up, nor did I have constipation. Then after I stopped taking the Percocet my IBS came back with a vengeance and I realized that the oxycodone had been calming my colon. I read on a website that stopping Percocet can cause diarrhea, and it did in my case.
I am now having attacks every three days or so and it is affecting my life again. I was taking Bentyl but it wasn't working so I started taking Imodium and noticed it gave me two or three good days. I am starting a new regimen of taking Imodium every third day to see what happens. Thanks so much for the website. I'm going to be buying Sophie's Story. It is good to know I'm not alone.
E-mail Edie: [email protected]
My boyfriend's sister has celiac disease and last week began a gluten-free diet along with vitamins to help. She has had regular BMs and no pain after eating, so she gave me some info and I'm determined that if it can help her, it might be able to help me if I stick to it. I have had IBS-D since 2006 and missed so many days of work. I've been fired for too many potty breaks and have laid in bed sick more days than not. I had to leave my sister's wedding reception early due to the pain and urges.
I hate my body for not being normal and making me nauseous after every meal. I have slow gastric emptying, or a stomach that doesn't want to empty on its own. So I take Reglan and Phenergan for this daily. I want to be rid of the sick feelings after eating and be able to ride in a car for more than a half hour without being sick or having to go.
I have read about the different ingredients to avoid and the foods that are allowed on a gluten-free diet. Hopefully this works well for me. I will update after a week so that I can keep everyone posted. I start this hopefully miracle diet tomorrow.
E-mail Michelle: [email protected]
Last week I went to Tenerife. On the Tuesday I had cramps and the runs, but I was staying around hotel so I wasn't too worried. On the Thursday I was going on an excursion to Mount Teide...a very high mountain, to watch the sunset and star gaze. On the day of the trip I wanted to foresee any issues, so I took Imodium before I left. Usually when I do this I am constipated for at least 24 hours.
We set up off on the trip and stopped at a restaurant for food. So far, so good. However, towards the end of the meal I started to get cramps...this wasn't supposed to happen. I went to the toilet a couple of times but I was constipated, and then just as we were due back on the coach a wave hit me. I managed to get back to the toilet but it wasn't all out, I could tell, and the coach was due to go.
I got on the coach, sweating and in some pain, and immediately took some more Imodium. I was willing it to take effect. As we proceeded up the mountain it was obvious that I hadn't passed the crisis. I was in agony. The coach stopped for 50 minutes so we could look at the sunset and have cava, right on top of the mountain, and I knew I couldn't last any longer. It was just a lay-by, no buildings or toilets.
I legged it as far as I could and found a rock that I thought no-one else could see me behind, and I had to go...Everyone else was drinking cava and enjoying the sunset, and I was crouched down 200 metres from them in the middle of a mountain. I finished and went back to join them, but a second wave hit immediately and so I went running back to the same place to go again.
To say I was embarrassed is an understatement, but I was grateful I didn't do it on the coach (the coach had no toilet either). Ironically, as we set off to a hotel bar (with toilet) the Imodium kicked in and I was OK for the rest of the trip...I was also covered in bruises and cuts as I lost my balance behind the rock, and rocks don't seem to be that comfortable to land on...
E-mail Vickie: [email protected]
I had my gallbladder removed in August 2013. It had pretty much died and I was in horrible pain. I experienced a wonderful honeymoon period free of pain until December, at which time I started experiencing what I thought was severe acid indigestion. This continued into January at which time I contacted my doctor and she tested me for H-pylori; we were both shocked when it came back normal, as I had had it before and symptoms were identical.
At this point she referred me to a GI doctor, the same doctor who removed my gallbladder. He first diagnosed acid reflux and placed me on Nexium which did nothing at all. After a month he had me come back in, inquired about my bowel movements as well as my heartburn and diagnosed me with bile reflux, an over-reactive liver over-producing bile and backing up into my esophagus.
He then prescribed another bile-binding medication and Carafate. Honestly, neither of them were working and I was now going on four months of severe heartburn and running to the bathroom four to six times within two hours as soon as I got up in the morning. Regardless of what I ate or drank, it made no difference. I was in extreme heartburn! I go through a bottle of Gaviscon a week, trying to tame the beast within. I find myself cooking for my husband and then trying to find something that won't kill me!
I finally had enough of my GI when I called and he prescribed prednisone for a week to no avail. When I called back to tell his nurse that it had no effect and wanted to know what to do, he wanted to try me on another week of prednisone! I fired him and sought a second opinion. Last week I saw a new GI who placed me on Questran three times a day along with my other bile-binding pill and phenobarbital liquid as needed for the extremely horrible heartburn that can feel as bad as a heart attack!
My question to anyone out there would be has anyone had these type of symptoms and if so how long did they last and what, if anything helped? I just want to feel better and be able to go out of the house without worry and eat and drink even water without worry anymore. Thanks for listening to me rant.
E-mail Suzanne: [email protected]
I have suffered with IBS-D since 2006. I found this website and was so thankful. It is so hard for people to understand when they do not experience it. I am very lucky to have a supportive huband and familybut alas this was not always the case. When it first started my hubby thought I was a little 'off' and I just did not want to work anymore. We had horrible fights but he loves me and we worked it out.
I have been to four gastroenterologists and I am now on the fifth. I lost my job of 14 years in 2011 because I was out so much. I was so upset and embarrassed and I went into a deep depression, actually at one point contemplating suicide. I felt that I was worthless because I cannot leave my house and have no energy. I have had seven colonoscopies and five endoscopies and I will soon have both again with my new doc.
Fortunately I am in a much better place emotionally and mentally but I am the same old 'poopie' self physically. My diarrhea has been so uncontrollable that I have added a rubber sheet to my mattress! I am 41 years old and use a rubber sheet! I think that may be the saddest part of all, ha ha!
I have finally found humor in my life because laughter is great medicine and a heck of a lot better than crying. I just want to let other people know that it is survivable. A pain in the ass! But survivable. I would love to hear from anyone who wants to reach out. Thank you Sophie for creating this website and letting me tell my story.
E-mail Kelly: [email protected]
I´m a 35 year-old Peruvian woman, currently living in Lima. I´ve suffered from IBS for four years now and I´m also lactose intolerant. It seems like every gastroenterologist that I´ve seen doesn't know what might be causing my symptoms, they all say 'It must be IBS.' That´s all, no treatment. So far they only tell me to 'learn to live with it' but there is no way a person can adjust to this desease, it comes and goes, it can last a day, weeks or months...
I´m always tired, I can´t travel long distances and even if I go out somewhere I always have to make sure there is a bathroom close by in case of an episode. I´ve been given anti-depressants but of course they don´t work at all. Any advice would be great. I´m willing to participate in any research related to this condition, anything that might help, even for a few weeks...Thanks!
E-mail Mirtha: [email protected]
I have suffered from IBS for years. I have just spent all of today on the toilet. I have tried loads of meds and different diets but everything goes right through me and it's very painful. For a while cutting out wheat and gluten helped but now it's just as bad as it was.
I have had to jump out of my car and go to the loo in public, go to the loo on my landing because I couldn't make it to the toilet. I can't find a suitable job that can tolerate my condition. I got sacked from my last job because I kept running to the toilet.
I am scared to eat and I am underweight. Food should be a pleasure. I don't think enough research has been done on solutions, people don't realise how much it affects you. And yes it is so bad I actually did try to kill myself. When you spend every day worried about your backside your quality of life is zero. I just want to be able to go out and not have to bring a plastic bag and toilet roll with me.
E-mail Elizabth: [email protected]
I find myself sitting in my lounge in tears reading the reviews of Questran; stupid, I know. I had my gallbladder removed at 19 because of the severe pain. No-one said anything about my life basically coming to a complete halt. I thought the surgery would make things better, but instead I'm scared to leave my house and go anywhere new because of chronic D and horrific and crippling lower tummy ache.
I went to so many different doctors who said "IBS....deal with it" or (and this is the best one) "It is depression coming out in the form of pain." This may be true for some people but this really didn't fit with me. I thought my life was over and just accepted that this was it.
I decided to go to a different doctors' surgery one last time. I met this amazing doctor who was shocked at my condition and who could not believe the simple remedy of Questran had not been offered before. She said really off the cuff "Well of course you're in pain, of course you need the toilet every five minutes or without any warning, your bile is just leaking into your gut" like this was common knowledge!
I cannot believe there are people out there suffering the same as me, I thought I was all alone in this and even though I wouldn't wish this on anyone, I'm glad there are others. I have read your stories, I have felt your pain. I am about to start Questran light. Wish me luck because who knows what will happen if this doesn't work!
E-mail Lily: [email protected]
I have had loose stools for about three years. I am now in week three of treatment at a physical therapist specializing in 'pelvic floor therapy'. The pelvic floor therapist uses electrodes to measure results from the daily exercises to firm the muscles in the pelvic floor to control the timing of voiding of loose stools.
I can tell I have made progress in three weeks and we have appointments set up for four months; she feels by that time I should be better if this therapy can help. She has also suggested Imodium and my regular MD agreed and I will start Imodium today. Wish me luck.
E-mail Helen: [email protected]
OMG, thank you for this site. I've suffered from chronic diarrhea and cramping for years now and it turned into throwing up as well. At first I was told it was due to a pelvic floor prolapse and rectocele and tests also showed I had a short sphincter. Also, I am small and had big babies. But the feelings (I would feel like I needed a bowel movement having sex) and the diarrhea continued.
I eventually was referred to another gynecologist who found a different part of my pelvic floor was prolapsing now and it was due to nerve damage caused by arthritis (which I've had since I was a child). So even though I was trying to do kegels etc and my brain was sending messages to my pelvic floor, there was a blockage where my back/pelvis had fused so the message wasn't getting through to my pelvic floor and bowel and bladder.
He also found that my bowel wasn't emptying properly because of my prolapse. He fixed that and put a neurostimulator in my sacrum to get the messages to my other bits and stop any more prolapses.
It worked wonders to start with. Then a few years ago the symptoms started again and were worse than ever. A gastroscopy found gastritis from years of arthritis meds, so I stopped taking those. Symptoms continued. I needed a hysterectomy and I was riddled with adenomyosis. I had a full pelvic floor repair done again. The pain, diarrhea and nausea continued. I had adhesions, another operation. Symptoms continued and got worse. I had accidents, not just at home but in public too.
Finally my doctor started taking me seriously when I showed her a photo of what happened when I was sitting in my lounge room and I had to run to the loo - not pretty. She did bloods then and found I was severely deficient in vitamins B12, iron and vitamin D (and I live in Queensland, Australia and get loads of sun).
I've tried everything and I live on stuff like Lomotil, Gastro-Stop, psyllium husks, Colese, Somac, etc. It continues. The GP sent me to a gastro. I've had several colonoscopies over the years, all clear except for a few polyps and internal hemmorhoids, but the gastro wants me to have another one with several biopsies.
I've never been diagnosed with anything regarding the gut issues but when my normal GP isn't there the other ones often call it IBS. My blood test was negative for celiac. I had to give up coffee and bread years ago and the same with spicy food, which I loved.
I barely go out. I've had 'accidents' having sex and you can imagine how embarrassing that is. I've done it in front of my teenagers. I've done it even in my sleep. And that's since taking Questran, which has been a lifesaver and reduced the accidents. I can eat now! But my colonoscopy is in a few days and I have had to stop all meds and bowel helpers like Questran, so I'm back to accidents. It's horrid.
I have a terrible feeling I will have the colonoscopy and they will still come up with nothing. The gastro said she didn't think she could help me anyway; she believed much of it was due to childbirth and all the surgeries I've had. I still have my gallbladder and all of that is healthy, but after the hysterectomy my bowel and bladder were stuck together by adhesions and they removed those and put 'goo' in to stop it happening again.
I don't know if anyone can help but just reading your stories has helped me. It's not something you can share easily. I am sure my family and friends are sick of me making excuses at the last minute because I'm stuck on the toilet (I can't tell them that). I've even thrown up in the car when I'm driving and in the supermarket or running to the loo.
And yes, I have to take a change of clothes everywhere for the other end, which is far worse. I have lost some weight but not as much as you would think given I rarely eat, but I think that's because of the effect on my metabolism. And exercise is difficult, because guess what happens then?