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sad tales: women with ibs-c page twelve

The tale of...Jan (30 July 2006)

Reading all of these stories has made me feel lucky because I am 48 years old and I was only diagnosed with IBS two years ago, so I have had 46 'normal' years. My heart goes out to all the young people who have to live with IBS and are missing out on so much. It's not so bad for me but I have missed out on a lot too in the past two years.

My family know that mum 'has a bad stomach' and are very understanding, but they don't know the half of it. I have waved them goodbye so many times to go to theme parks etc because mum was 'too busy' (in reality too scared to leave the house and wishing I could go too). What is hurting so much is my daughter is 18 in November and for a very special birthday treat she wanted me to take her shopping in New York (we live in England). It should be a mother and daughter special time.

Well, I made excuses again saying I couldn't cope with the travel arrangements, but in reality I would love to go so much - the fear of IBS just makes me feel safer at home. So, Dad is taking her instead of me. I used to be so outgoing, now I am becoming a recluse and almost agoraphobic. I would love to e-mail with both women and men and hopefully share support with each other.

E-mail Jan: [email protected]

The tale of...Priscilla (July 2006)

I have been suffering with IBS for five years now. I am 25 and living in England. My symptoms started after a bad case of cystitis where I was given antibiotics which were so harsh they made me sick. Soon after that I started to develop problems with my bowel habits.

Originally my problem was pain and the ability to go to the toilet passing small stools. I would swell up and feel horrid, often resulting in difficulty walking. It took me 18 months to see a specialist in London and when I did he said that he could help me, and he did. He put me on anti-depressants, a low dose of amitriptyline, and I took that with amazing results. I was having a bowel movement once a day for a year. I felt fine and was in great shape.

Then my doctor changed. This was two years ago now and I have been struggling. They insisted that I come off the amitriptyline which I had to do myself, and since then I have been worse than ever. I did come off the amitriptyline, but it was a struggle because the symptoms got worse, and when you know something can help it is difficult on your own to try to come off it.

I am now worse than I have ever been. I see a homeopath and no matter what he seems to give me I am getting worse. I suffer now with chronic constipation with soft clay-like stools that are difficult to pass and are covered in mucus. I am also seeing a dietician and that seemed to help, but now I am not so sure as I am on this elimination diet and I am still suffering from the clay-like stools and constipation. Re-introducing food is difficult because I am always constipated so how can I tell if the symptoms are getting worse?

The worst bout of IBS has been in the last two weeks. It got so bad that I had to go to the doctor because I was so constipated, despite using Dulcolax, pessaries and also enemas, that I could not breathe. I had to visit my doctor in an emergency and he gave me some Picolax, the stuff they use before a colonoscopy. This cleaned me out completely and I felt fantastic for a day.

I am now back trying to pass these soft mucus-covered slimy stools that are impossible. I have been unable to exercise recently as I have got so bad with the IBS that I just wanted to curl up and die at times. I have been known to break down and cry, although most people don't see it. I rarely take time off work because I try not to let this affect my life, but it really does.

People say I am strong for coping with this but I don't feel it. It ruined in part my last relationship and I shy away from relationships, even though I would like one, because of this. I don't know about anyone else but I have a really crap sex life because of this as well. I even hate food because the way that I look at it is...if I don't eat it, it cannot get into my bowel and cause me problems. I am getting skinnier by the day and for a tall girl at 5' 11' it is not a good thing. My family are always on my case about that.

I would love to have just one month without any symptoms - it would be fantastic. At the moment it is day in day out with no let up. I am very depressed about it and I don't see any way out. I am also going to see another specialist and having more tests done because the other hospital failed me. My current doctor took an x-ray and showed me that my bowel was not emptying as it should do. I felt like saying...well duh...I already know this.

Now they are sending me for another test where I have to swallow a pill and they do a test to see how quickly the food passes through my system. I am not sure how that is going to help or when they will get around to seeing me as it all takes so long.

Currently I am taking psyllium husk capsules, magnesium and vitamin B. On top of that I am a regular user of Dulcolax and suppositories. Nothing seems to be working and I cannot have another attack like the last one, as the breathing thing scared the life out of me. I wanted to go on holiday this year but I am terrified about going. The last attack which is still going on was just so horrid. I don't know how long my body had been holding the food to get that bad.

All day long I seem to have this uncomfortable feeling in my bowel and not the slightest thing I do can relieve it. I am very worried about becoming reliant on laxatives. But more so I am worried about cancer, as it is in my family. The worst bit is explaining it to the doctors because they see constipation as a problem passing hard stools. I don't have that issue, mine is passing soft greasy stools. So all they give me is stuff to soften it further. It is a nightmare.

I know that my body is capable of going to the toilet normally as I occasionally have a bowel movement like everyone else, but I am getting to the end of my rope on this one. I hate my body and I hate myself. I long for the days of the amitriptyline which helped and I want some form of a life again. I am only young and I hate being like this. I want to have normal relationships and enjoy sex and feel confident in myself but at the moment that seems like a distant dream.

I am now resorting to extreme exercise as a way to get my sluggish bowels moving. I am going back to kick-boxing this week in the vain attempt that the severity of the exercise might help. It used to but that was when I was on the anti-depressants. Sometimes it does involve being kicked in the stomach but to be honest that is nothing in comparison to the pain that the IBS gives me. Also it is a way of forgetting for one hour a week as it is good fun. I just hope that it does not mean that I get any skinnier otherwise I really will be in trouble.

E-mail Priscilla: [email protected]

The tale of...Jenny (6 August 2006)

I am only 22 years old and I have been suffering from IBS for nearly a year. It doesn't sound very long at all once you read all the other stories about people who have suffered from it for years. Well, here is my story...

It all started the morning after I had finished a busy night shift at work. I had this excruciating pain in my stomach. My fiance was quite concerned. I was exhausted anyway and just went to bed for most of the day. Two days later we had just finished Sunday lunch and were settling on the settee to watch a DVD when the same pain came back, this time much worse, and I couldn't actually get up from the settee. As I work in the operating theater I assumed the worse, all manner of things were going through my mind, including the possibility that I had got appendicitis.

My fiance took me to A+E. A doctor said I had a bladder infection and sent me on my way with antibiotics. I continued taking the antibiotics for a couple of days but had no respite from the pain, I just couldn't go to work. I went to my Mum's house for some company. I felt, weak, lethargic and sick. My mum was very concerned and I was virtually carried into the doctor's surgery.

The doctor was also very concerned and immediately admitted me into hospital, but with another diagnosis - this time the doctor thought I might have a twisted ovarian cyst. I knew if that was the case that I would have to have emergency surgery. I can't describe how I felt when I heard the news, I was so frightened. At the hospital I was given an ultrasound scan which didn't show anything. I was relieved but also anxious - what could this pain possibly be? I was discharged from the hospital with strong painkillers.

I went back to work a couple of days later, when the pain had slightly subsided. An hour or two into my shift I was doubled over in pain. One of my colleagues took me down to A+E (one of the perks of my job), where a blood test and urine samples came back negative, and I also most embarrassingly had a rectal exam (this was to detect if I had been suffering from a rumbling appendix). The test was normal and I was sent home.

This time a couple of weeks went past, and I was getting ready for an afternoon shift at work when I collapsed in my kitchen with the pain. I was so worried, it definitely couldn't be my appendix now, and I was expecting the worst. I was rushed into A+E again, this time by ambulance, and the doctors decided to do a CT scan. I had to have a barium meal, which was absolutely revolting - it was a chalky liquid and I had to drink a litre within two hours. My fiance was very supportive and stood by me all the way. The CT scan came back negative.

One of the consultants came to see me and decided that they would perform a laparoscopy (an operation where a camera is inserted into an incision underneath your belly button to look around your abdomen). I was very anxious as even though I have seen these operations hundreds of times I had never been under the knife myself.

The next couple of days before the operation I was allowed to go home. I remember it vividly because it was around Halloween and I was supposed to be having a party for my family. The party went ahead because my fiance thought it would take my mind off things. He prepared everything and the evening was fun but I couldn't stop thinking about the operation.

I had the operation, and they found nothing. Even though I was relieved I felt like I had some sort of phantom illness. Again weeks passed without having the pain, I went back to work and even went through the whole of Christmas without suffering. I thought it was just one of those things because apparently it is very common for women of my age to suffer with certain pains without any definite cause, and they will eventually subside.

In February this year the pain came back. I went back to my GP who had a very long chat with me, was I stressed or worried about anything, was there any history of bowel conditions in the family? These were all questions I had never contemplated. Yes I was very stressed, I was newly qualified in my job and getting the longest and most unsociable shifts, I was planning a wedding for July this year and my Mum and Uncle suffer badly from IBS. I couldn't believe nobody had suggested it before.

Another thing was I suffer very badly from constipation. I can go to the toilet every day but hardly anything will pass at all. Because I had been like this for a number of years, probably since I was 15, I thought it was normal. The doctor prescribed Lactulose and the anti-spasmodic mebeverine for the pain. I took it regularly for a few weeks but to no avail. Eventually the GP referred me to a specialist.

I went to see the specialist, and he said straightaway that I didn't need a colonoscopy. As I am quite a curvy woman (size 18-20), when he examined me he said I had a condition with a fancy name, which basically meant I had a trapped nerve because he thought I was overweight. He put a local anaesthetic into the area where I suffered the pain the most. He said that if I had no pain when I stood up he had cured the problem. How was I supposed to know? I hadn't had the pain for a week!

The next few weeks I went on a diet, I thought anything was worth a shot. I lost nearly a stone very sensibly following a well-known diet, again to no avail. The same pattern followed, straight to the GP surgery and admitted again onto a ward for observation. I was feeling very depressed at this point, I had a mystery illness, I had been off sick for the past two and a half months and I was supposed to be getting married in a matter of weeks. My entire family, work colleagues and especially my fiance were extremely supportive, and I don't know what I would have done if it weren't for them.

Eventually I went back to see a different specialist who diagnosed it as IBS. Finally after all those tests and hospital visits I have an answer. I can't explain why I felt so relieved, I suppose I kept thinking that people thought I was making it up, I was very embarrassed when I was waiting to see the doctor, I had seen nearly every doctor that worked in the surgery.

Another fear was of losing my job, which is very demanding with very mixed hours from one week to the next. I am still scared because now if I catch the flu or a cold I will be petrified of taking the time off.

I got married about three weeks ago and we went to New York for our honeymoon. I did not suffer from the pain at all, all the stress had disappeared and I am so happy. I would like to say I lived happily ever after, but here I am writing this story because I am off sick again. I only went back to work for a week and a half and I'm off again. This time I have an ear abscess (extremely painful), but I was ready to go back to work this morning until I got my stomach cramps. I think this is due to my antibiotics but I am sitting here with a very bloated stomach and feeling sorry for myself once again.

It is something I will have to live with for probably the rest of my life. I have got to learn to cope, but being so new to the illness I haven't found a way yet. Thank you for taking the time to read my story.

E-mail Jenny: [email protected]

The tale of...Alaina (13 August 2006)

I'm 24, currently at university, and I have IBS. God that makes me sound like I've started AA or something, but it does feel like we're part of an exclusive club that not many people know about. I've had IBS for three years now. It came on quite suddenly I think. I'd never really taken any notice of things like that before, I just took it for granted that I could go for a week without going to the toilet, I thought that was normal! My mum tells me I've always been fairly constipated as I was a small baby and two weeks late and didn't take much feed. I've grown up with a small appetite and have hardly ever been hungry. Even now I'm still tiny, five foot, but as each day goes by the amount I eat gets smaller and smaller.

I wake up every morning feeling queasy and go to bed feeling exactly the same, my life is one long nauseous existence. I don't eat greasy food, fast food, in fact I hardly eat any food as I feel constantly sick. Doctors just keep giving me tablets for stomach ulcers, acid indigestion, anything really, but nothing works. I'm tired of feeling like this, I want to go out and have a meal, something I've never been able to do.

Part of why I hate the IBS so much is because I already have a phobia of sickness resulting from an incident when I was four and was very ill one night, and I'm constantly battling with myself to eat. I have to force myself to eat though the thought of it just makes me feel worse. I'm not anorexic, far from it, as I love biscuits, ice cream, bread, all the bad things, but I know that if I don't eat I will be even more ill.

It's a vicious cycle though, as the less I eat the worse I feel, and the worse I feel the less I want to eat. Sometimes I've just wanted to go into hospital and be drip fed as that way I can get the vitamins I need without me having to swallow anything and feel ill.

Another thing that has suffered because of the IBS is my social life. I don't go out much anyway as I don't drink (another part of the sickness phobia), and because everyone else does I get bored quickly. But I can guarantee that when I do go out I'll have an attack. This is in the form of severe stomach cramps, the need to go to the toilet frequently, and worst of all wind that is so bad even my eyes water, and we all know you can normally tolerate your own!

In fact the wind is one of the worst parts for me as I can't stop it from happening because I'll end up with stomach ache, but I can't let it out as it's too embarrassing. It's resulted in many nights in on my own, and as a student this can lead to people thinking you're unsociable, boring, geeky etc when it's not my fault, but I can't tell anyone as it's disgusting, who wants to discuss bowel movements when you can go out, get drunk and pull!

Anyway I'm resigned to the fact that I'm stuck with this for the rest of my life, but each day it gets slightly worse. I'm tired of feeling so sick all the time, I want someone to wave a magic wand and make me better again, but I know that's never going to happen.

The worst part is the fact that doctors just dismiss my symptoms when I've gone in and said how sick I feel and how depressed and tired I am. They just say 'It's all part of IBS' and prescribe some more stupid pills that won't work. If anyone can help me I'd really appreciate it, I know my symptoms aren't as severe as some people's but we all suffer in our individual ways and only us, the sufferers, know how life-consuming this is. If you have any thoughts or ways to help please e-mail me.

E-mail Alaina: [email protected]

The tale of...Theresa (September 2006)

I have been diagnosed with IBS. And I feel like this disease is managing my life. I once was free, independent, experiencing a life without simple worries like constipation. This disease caused me to leave my school in MA so I can stay closer to home.

I feel like I can't do anything. I'm so bloated and fat. I've tried everything, like enemas, magnesium citrate, and still there isn't any success. I'm still heavy. I don't know what else to turn to. At some points I wonder if it's still worth living because I'm stuck and feel like there's no hope. I've tried acupressure, probiotics, and limited diets and everything was fruitless.

E-mail Theresa: [email protected]

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