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sad tales: women with ibs-c page sixteen

The tale of...Kate (14 January 2008)

Hi, my name's Kate and I'm 20 years old. As I write this I'm currently in bed feeling terrible due to my IBS. I've only recently been medically diagnosed with having IBS, but my symptoms have been happening on and off for five years now.

My first attack of excruciating stomach pains happened in secondary school. I had just finished my PE lesson on a particularly hot day and needed the toilet. After I had been to the toilet I sat down to have lunch with a group of friends and all of a sudden had the worst stomach pains imaginable. The school nurse thought that it was due to dehydration and made me drink plenty of water. I now believe that it was actually the start of IBS.

Since being at college and university I've now lost count of the amount of times that a relative has had to be phoned in order to come and pick me up early from one of my placements that I've been on, due to me being bent double with spasms/gas due to my IBS. I haven't had regular bowel movements for as long as I can remember and would often go three or more days without doing anything, and then when suddenly I would feel the urge to go, I would be at least half an hour straining to do anything. Eventually when I did manage to go I'd feel that I hadn't quite finished.

I constantly feel tired and that I have no energy. I often get unexplained aches or pains or am suffering from some kind of sore throat or fever. Several times I've woken up in the morning, gone to get out of bed and actually couldn't because I've had severe back pains, so I've had to just sit on the edge of the bed until they wore off.

Recently my IBS has got worse. In the last few months I've been admitted twice into hospital by ambulance due to severe abdominal pains. The most recent admission into hospital, I was actually at work when I began feeling unwell, so I took myself off to the toilet as I thought that I was going to be sick, due to severe stomach pains and nausea. That's the last thing I remember, until I found two paramedics leaning over me and giving me oxygen etc. I was told that I had passed out due to the intense pain that I was in.

I've had so many different blood tests to rule out other illnesses/diseases over the past few months, that I'm getting sick and tired of it all. I often feel depressed, I've tried self-harming before, and I often get suicidal thoughts, though I do not believe I'd actually have the courage to carry out any of them.

IBS seems to have taken over my life at the moment and myself and my family are constantly worrying about me. I get really concerned when I am driving anywhere late at night on my own, as I don't know when it will happen or what triggers it, and a few times I have developed excruciating stomach pains all of a sudden whilst driving. I'd hate to pass out at the wheel of my car or be to blame for causing a serious accident.

I sympathize and empathize with anyone young or older who suffers from IBS, and if anyone would like to ask anything or just chat to someone who understands what they are going through, then don't hesitate to get in contact with me. Apologies if I've rambled on!

E-mail Kate: [email protected]

The tale of...Jody (27 January 2008)

I have suffered with IBS-C for about 10 years now. It started when I was around 20 and I went years with no diagnosis or medication. Finally a few years ago I was prescribed Zelnorm. It changed my life. Before Zelnorm I would miss days from work because of stomach issues. I would not go on an overnight trip with friends or boyfriends because of the fear.

Last month I called to refill my Zelnorm and I was advised it had been pulled from the US market. I had two pills left and instantly felt depressed. I go two or three days with no bowel movement without Zelnorm. I get headaches and my back starts to hurt, and I am sure I am not pleasant to be around. Then when I finally do go on my own, it is so painful and urgent. I have hot flashes and chills and spend hours in the bathroom in severe pain.

I called my doctor as soon as I learned of the Zelnorm recall. He gave me samples of Amitiza, I tried it for a week and the side effects are horrible. I have severe throat pains and feel like I can't take a deep breath. It gives me headaches and a weird flu-like feeling in my face and head. Not to mention it doesn't work for constipation. I have quit taking it and thrown out the samples.

The last month or so of not having Zelnorm has been miserable. I missed my first day of work in years last week, and I canceled a family event today because my stomach felt so bloated I was scared to eat at anyone's house and have to run to the bathroom only to sit in there for hours with no relief. The Amitiza makes me even more bloated and gassy but gives no relief.

I have an appointment next month (first available) with the GI doctor and am praying that I can continue to get Zelnorm. If anyone has had success in getting Zelnorm please let me know. I really don't want to have to order it illegally online.

E-mail Jody: [email protected]

The tale of...Marilyn (11 April 2008)

From reading over the sad and happy tales, I might have suffered longer than any other person who has submitted their story. When I was a child back in the 1950s I had a constipation problem off and on, so my mom would give me an enema, and to this day I hate enemas. By the time I was 12 and into my teens and early 20s, the constipation problems had subsided. In my mid-20s I started experiencing constipation off and on which would cause bouts of pain and numerous trips to the toilet to no avail. When I used laxatives they would finally work, but with great pain.

By my late 20s I was not having much of a problem with constipation, until the fall of 1977 when I was 29 years old. My youngest son was 13 months old and my oldest son was 10. One weekday morning my stomach starting hurting, and I must have made at least 10 trips to the toilet, each time not accomplishing anything. By noon the pain was gone and so was my morning.

A few days went by and I didn't have pain and my bowels moved daily, which once or twice a day was normal for me. Then one morning I had a repeat of the first morning, only the pain was worse and also I began to sweat, got clammy, started breathing heavily, almost hyperventilating, heart beating fast. I didn't understand what was going on.

After numerous trips to the toilet my bowels painfully moved and I felt better. After that, about three to four mornings a week I would go through this painful process. I got to where I would pace around the house from room to room almost in a panic, and then running to the toilet. Sometimes my bowels would move and sometimes not. This all would last for one or two hours and afterwards I was be so exhausted.

Over time it began to get worse, to the point that sometimes I would call my husband, who worked not too far from our house, and he would come home to spend a bit of time with me. The poor guy, he didn't know what to do other than to hug me and tell me to lie down, which would only make me feel worse. I didn't know what to call what I was experiencing so I started calling it 'my sick spell'.

After a month or so, I mentioned my problem to my mom; she said I probably was having colon problems. Colon? I had to even ask her where my colon was. So I went to my doctor. He scheduled me for a barium test, which meant an enema. I was even more sick with the thought of having to undergo an enema (childhood fear) and the embarrassment of me baring my rear end to them.

The diagnosis was spastic colon. I was told to be careful what I ate, though I was not really given much insight as to what not to eat other than if I ate something that bothered my stomach - don't eat it, gee thanks, and to drink more liquids and also take Metamucil. The first dosage of Metamucil felt like it just about tore my colon up! No more of that crap. I tried watching what I ate, but I loved to cook and eat.

After a few more months I hadn't gotten better so I went to another doctor. He ran the same blasted test and diagnosed me with colitis. This doctor put me on Librax and also Gaviscon. He told me the Librax was a muscle relaxant and the Gaviscon was for acid problems. I had developed huge gas bubbles in my stomach which would cause me to belch hard and loud.

My sick spells seemed to hit me in the mornings, but could happen anytime, especially when I was out shopping and such. I got to where every place I shopped I knew where the restrooms were and the fastest way to get there. More times than not I would rush out of the store and drive like a maniac to use my bathroom at home.

I have to say it took probably three or four months before I noticed the Librax helping me. The Gaviscon seemed to help fairly quickly. As for food, I entered a paranoid world, worried about eating and analyzing everything I ate. After trial and error, my diet was made up of white bread, white rice, potatoes, scrambled eggs, bran flakes, basically anything white and plain. I ate nothing fried or deep fried, chocolate, ethnic foods, spicy foods, any tomato type sauces, whole wheat, nuts, popcorn, high fiber vegetables and fruits and no citrus foods.

One year after the onset of my colon problems I had lost 30lbs, going from 128lbs to 92lbs. Family and friends that hadn't seen me for a while thought I had become anorexic. I monitored every thing I put in my mouth and fretted and worried the whole time. I know I drove my husband nuts about it all, but he was rather patient with me. The only comment he made that rather irritated me was that he said the reason I was having problems was because I was worrying so much about what I ate. Perhaps he was somewhat right, but it still irritated me.

During all this the only people who knew about my problem were my husband, my mom and dad and of course my doctors. I never mentioned to my doctors about my sweating, clammy skin, rapid breathing or fast heart beat. I felt they would think I was crazy as I even thought I was perhaps going crazy.

I went back to work as a legal secretary. Unfortunately I would miss work quite often or at least go in late. Finally after a year of being employed I was dismissed from my job due to so many absences. I felt like a failure, but was able to obtain another job, where I again missed work often and that job ended. At this point, we moved out of state and I tried staying home and I began to feel better, didn't have the sick spells as much. I continued taking my medications and watching what I ate. I did gain a few pounds back to where I didn't look anorexic.

Eventually I was able to eat some of the former forbidden foods in very small amounts every so often. After that we moved back where we had lived previously and I did very well for about 10 years, though I did for a month in 1982 have a few sick spells, but otherwise things went well.

In 1990 I was scheduled to start back to work at a childcare center I had been working at and had been off for the summer. I began to have painful cramps on the right side of my stomach. With my prior problems, the pain had always been on the left side of my stomach. These right side pains started being my sick spells again.

I went to a doctor and was ran through various tests for gallbladder, etc. Finally, to my chagrin they ran a barium enema test. You would think the medical establishment could have found a less evasive way to run this embarrassing test. I was diagnosed with irritable bowel syndrome. I was mad because now I thought that I not only had a spastic colon but also had IBS! The doctor put me on Bentyl and said to perhaps stay away from carbonated drinks and ice cold drinks. The Bentyl seemed to help fine and I did start eating more, though carefully avoiding nuts and such. After that things went fine.

Then in 1995 I started a new job with a law firm. My third month working, I went to work one morning feeling fine. I had a fat-free chocolate muffin for breakfast and coffee. At about 10am I started feeling panicky, sweating, etc along with stomach pain…basically my sick spell. I went to the restroom several times but did not have bowel movements.

I paced the restroom, which had a window looking out at the tall buildings downtown (I was on the 26th floor). At one point I stood looking out the window and briefly it went through my mind what it would feel like to jump out the window. Of course, there is no way I would do that, I'm scared of heights, but I was so upset. I felt like just grabbing my purse and running away, but to where? You can't run from what I was feeling.

I did finally leave work telling the office manager that I was feeling sick. I spent the next two days home, still not feeling well. I started back on Bentyl. Finally, for fear that I would lose this job, I went back to work and did OK for a few months.

Later in 1995, I came across a book by Lucinda Bassett talking about something called panic attacks and anxiety attacks. I bought the book and read it. I began to think that part of my sick spells were maybe panic attacks.

In the summer of 1996 my sick spells began to start again. They were offering panic and anxiety tests at the Women's Resonance Center where I live, and I took the test by filling out a long questionnaire. After the therapist went over my test she sat me down and began to explain what had maybe been going on with me. She referred to it as fright and flight. She used the example of a person being in the woods and coming across a bear. If that happened it would be natural to panic and run to get away. What I had been experiencing was the same thing - panic attacks.

It was such a relief that I started crying, as it was a relief that my sick spells had a name for them. She then told me about a 12-week course they were going to be offering and asked if I was interested in signing up. At that time I was unemployed, so didn't sign up for it, but I did later, and it was the best $250 I have ever spent. I learned so much about panic attacks, we were taught some meditation and other relaxing techniques. After that I still had the IBS and panic attacks every so often but I got where I could control them.

By 1997 I was doing better but was still depressed a lot. Over the next 10 years I really didn't have any of my sick spells, in other words panic attacks/IBS attacks, and if I happen to have one, I was able to relax, deep breath, visualize and get over it quickly.

Now here it is spring 2008, and I hadn't really been having diarrhea problems for a couple of months. Recently though I went to work one morning, and at about 9am I started having mild stomach pains, went to the restroom, and had diarrhea off and on for an hour or so. I got to feeling worse and finally gave up and told them I had to go home as I was sick.

I spent two days at home. I went back to work and felt fine for a few days and then started having problems again, I stayed at work grinning and bearing it. That evening I begin more in-depth research on IBS and came across Heather Van Vorous's website. I immediately reversed my eating going back to the soluble diet I had done 30 years ago. I bought some peppermint oil capsules, flaxseed oil, calcium/magnesium, etc.

Last Thursday I was at work and mid-morning I started having diarrhea again, stomach pain and began to felt like I was going to start a panic attack. I was able to do some slow deep breathing and got myself calmed down. I made it to lunchtime and went home deciding to stay home. I called in sick…again. I had planned on going in on Friday, but I still felt sick and was so afraid that I would get to work and have diarrhea again, so I missed work on Friday.

I did research on Librax and Bentyl and other medications plus reading IBS Tales. I called my doctor and told her what was going on and asked for Librax and surprisingly she didn't have me come into the office but prescribed Librax. I picked it up on Friday evening and immediately took one dose and then another at bedtime. I took one on Saturday morning I felt like I was in a daze. I was hoping to get as much Librax into my system as quickly as possible over the weekend so I would feel better by Monday for work. After that I decided to go with 2 a day so I wouldn't be so drowsy. When I took Librax in the 1970s and 1980s, I don't remember it making me drowsy.

This morning I woke up, felt some nausea, and had some diarrhea, nothing too bad though. I got ready for work, all ready to go, sat on the edge of my bed and my thoughts went through my mind that I just can't face this. This fretting and worrying while at work about whether I'll have the pain, diarrhea and even panic attack. So I did the wimpy thing and called in to the employment agency to let them know that I wouldn't be in to work and that I couldn't complete the assignment due to my illness. I even told them that I have IBS. I think as one gets older, you have less pride.

So now I have no job, no money and at this point no job prospects. I am separated from my husband, though he helps with my rent. I've been going through this 'my sick spell', spastic colon, colitis, IBS off and on for 30 years! The worries, wondering when my sick spells would hit me. Changing my life for the benefit of my sick spells. Planning my life where I could stay home in the mornings just in case due to having constipation problems and now diarrhea. I've lost numerous jobs and happiness due to this insidious disease!

Looking back I can see where the doctors were as clueless as I was. From the medical establishment I got the message that my problems were more psychological than intestinal. Now I know that it was/is intestinal, which makes sense. I always wondered what came first the panic attacks or IBS for me. Now I know the IBS brought on my panic attacks. After years of suffering from constipation and then going for a number of years with normal bowel movements and now diarrhea, I can't figure out why this is happening to me again.

Anyway, it has been a long 30 years, going from 29 years old to almost 60 years old with IBS. I read almost all the stories others have contributed to this website and I feel for every one of you. Especially for the people who were diagnosed with IBS as a child. As for me, I'm a persistent person and I no doubt will work hard at getting my diet and medication correct to get a handle on my IBS so I can live a happy life. Perhaps for me the best is yet to come.

E-mail Marilyn: [email protected]

The tale of...Katie (20 April 2008)

A year and a half ago I was told that I had IBS after I had made several trips to the ER. I was spending most of my time on the couch eating very little, going nowhere, and becoming depressed. Constipation would last for almost a week, and even then I had lots of very painful cramping.

My family doctor finally figured out that I had IBS. He said that I was the youngest person that he knows of to have IBS. I was 27. He put me on the medication Zelnorm. By the next day I felt like a brand new person. I was asking my mom to go shopping with me. My mom had not seen this person in almost a year. But as you know, six months after being put on the medication, I found out that it was being taken off the shelf.

So after many trips to the doctor to find a new medication (many of which did not work or made me feel sick) now I'm taking the over-the-counter medicine Miralax. I'm still not the some person that I was when I was when I was on Zelnorm. Why is it that when a medication is helping so many people that someone has to find a reason to crush their dreams of having somewhat of a normal life? Constipation and abdominal cramping sucks. Thanks for giving me this moment to speak out and voice my frustration with trying to find a medication to work since we can no longer get Zelnorm.

E-mail Katie: [email protected]

The tale of...Roxie (20 April 2008)

I am 20 and I hate doctors. Two years ago I had every respect for the medical profession, doubts about its validity had never crossed my mind as doctors had never really let me down before. If I'd had a complaint such as cystitis or a cough, I would see my GP, he would prescribe something that would clear it up and I would happily be on my way. Then I developed IBS.

It all started two years ago one winter when I picked up every tummy bug going, so that I was ill on a practically fortnightly basis. But even after these appeared to clear up my bowels did not get back to normal, and I started experiencing awful stomach cramps. I went to my GP who diagnosed me with IBS and prescribed Buscopan, mebeverine, peppermint oil and mefenamic acid. The Buscopan and mebeverine were useless so I turned to the mefenamic acid, which my doctor had told to me to treat just like an ordinary painkiller such as paracetamol or ibuprofen. So I took two, it worked, I went to bed. Success!

However the next morning I woke up to a red and angry rash that covered my body from the neck down, and a nasty burning sensation in my stomach. My GP kindly informed me that I had had an allergic reaction, and that the medication had given me an ulcer. He then put me on a whole new round of drugs which I would have to take for three months to clear up the ulcer, neatly forgetting that one of the side effects of this new medication was that it left your bowels more sensitive to any form of bacteria.

A month later I came down with giardia, which for those of you who haven't experienced this wonderful illness is a tummy bug that lasts for six weeks. After six weeks of hell my bowels had completely given up and I finally ended up in the hospital, where I had all manner of tests: an MRI, a colonoscopy, a gastroscopy and most enjoyable of all an internal ultrasound. Nothing.

I went back home to sit on the sofa with a hot water bottle permanently glued to my abdomen. I still have the burn marks to prove it. I waited in hope because I had been put on the waiting list to see a gastroenterologist. I believed that this man would be my savior and tell me why I was in so much pain all the time. However, after listening to my story he explained to me that the reason my stomach hurt was because I was thinking about it too much. That if I just relaxed, ate some more fiber, and spent no longer than 10 minutes on the loo a day I would be fine.

Firstly I eat a lot of fiber, my diet is practically all fiber. Second did this moron think that I gladly wanted to waste two or three hours of my time a day locked in the toilet?! I would have much rather stabbed my leg repeatedly with a fork for that period of time than sit in agony on the loo. I am known for my stiff upper lip, and my ability to remain calm and stoical in the worst of situations, but I have to admit when I left his office I just sat in the middle of the pavement and cried and cried.

Fast forward a year and a half and not a lot has changed. I am still at war with my intestines, and I get through the day only thanks to a cocktail of different painkillers. I have tried every alternative remedy under the sun: supplements, acupuncture, hypnotherapy. Nothing has worked. Thanks to this 'syndrome' I had to change university so I could live with my parents. I have lost a boyfriend who couldn't cope with a girl who refused to be forcibly removed from the sofa. And most importantly I have lost my joy.

This is all compounded by the fact that nobody seems to think that I am really ill, that because the doctors can't find anything I'm either making it up or it's all in my head. Even my own mother keeps telling me that if I just relax it will go away. But she doesn't seem to understand that when it feels like there is a man with a machete trapped in your abdomen, it is very difficult to just relax! My only hope is that one day it will get better, unfortunately there is nothing else left for me to do.

E-mail Roxie: [email protected]

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