sad tales: women with ibs-c page twenty-two
The tale of...Paige (2 January 2011)
I was diagnosed with IBS and GERD five years ago and have lived with these terrible conditions ever since. Recently my IBS has gotten to the point where I have to force myself to eat and even then I'm nauseous and crampy for hours afterwards. I've lost almost 11 pounds in the last two weeks, which is a ton for me as I've always been thin and a bit underweight.
This disease is running my life and no matter how many pills I take or doctors I see, nothing seems to help. Some days I just don't want to get out of bed and suffer through another day in pain. I've already missed a ton of school this year.
My family tries to be supportive, but as I'm sure many of you know, it's impossible to sympathize with IBS pain unless you've gone through it yourself. My parents are convinced that if I eat to regain my appetite and 'keep a positive attitude', all of my problems will go away. Don't you all wish it was that easy? My condition is tearing my family apart, especially my poor father, who already has enough problems of his own.
I count my blessings that I found this website when I did. Coming home today I was convinced that I would have to suffer through this alone for the rest of my life, and now I know that I am not alone in my pain and the conflict it brings to my life. Let's hope that some day, some doctor will find a cure to end all of our pain.
E-mail Paige: darkmagisterismaire@REMOVETHISPLEASEyahoo.com
The tale of...Christina (July 2011)
The horror and hell of bowel problems, cystitis or endometriosis. I'm envious of the world around me because they can carry on as normal. I know they have a better life than me and they don't even know it. I don't know what I have. Every attack is different but painful nevertheless...though one thing is for sure, I would crave diarrhea more than constipation.
My amitriptyline is not working although I'm only on 20mg - this gives me constipation, no pain relief and worst of all drowsiness. I'm starting my third and final year of university tomorrow and I'm really not into it. I live at home and commute and I have eight-hour days; I'm anxious about my pains and being away from home. Nobody understands. I wouldn't want anybody else to have what I have - but some days I grumble and wish I could hand it over to someone nasty; like some bullies from school or some juvenile delinquents who don't know how lucky they are!
Doctors are useless: it took four years for them to decide to give me a colonoscopy. I've had every test, all with negative results. IBS is a term doctors use for 'I don't give a damn syndrome', they just don't want to look any further. They still need to confirm I don't have endometriosis, and for now they want me to have pain therapy - I'd rather know what's wrong!
Quality of life, well...I don't have a life. I hate going out. My social life has suffered and people take it personally (they think I have an issue with them - well I do, I don't have their carefree life). I can't sit down for long periods and I have to lie on my back in bed and not move; one false move is like me brushing against barbed wire - hell. I'm 21, and life stopped for me when I was 17/18. I just hope there's light on the horizon, that or death. There are days when I think I can cope, pain-free days, and then as soon as that's over the fear returns...is this the rest of my life?
E-mail Christina: dawnie_60@REMOVETHISPLEASEhotmail.com
The tale of...Margot (July 2011)
I have IBS with constipation. I have had this condition all my life, but I was diagnosed just recently. My condition is getting worse and worse. I pass gas and it's very embarrassing, but the worst part is the pain. When I am constipated I have severe abdominal pain that drives me crazy. I'm only 40 and I have a good job. Fortunately I can work, so far.
Four years ago I went back to school, and I'm thinking about a career change to make more money. I've been successful at school so far, though there are still four more years to go to complete my degree because I'm a part-time student. Now, after reading stories of people suffering from IBS, I'm scared it will ruin my life.
I know my condition is getting worse. I make sacrifices, such as avoiding many foods I like, but nothing helps. I take fiber and medications but it still gets worse. I take laxatives when I have a problem with constipation and that brings temporary relief. Sometimes abdominal pain strikes while I'm driving, and I drive 30 miles to work every day. I'm angry and scared. I don't know what I'm going to do if my IBS becomes so bad that I'm unable to work. It may destroy my life.
E-mail Margot: margotari@REMOVETHISPLEASEcox.net
The tale of...Sharon (5 July 2011)
I have been suffering with IBS-constipation and a slow digestive system for many years. I first noticed that I had a digestive problem in the early 90s but continued living life like it didn't exist. Later, I started experiencing heartburn and just took over-the-counter remedies. But the biggest hit on my system was when I had three consecutive operations in three years: a hysterectomy, gallbladder removal and a stomach wrap. A few weeks after I had the hysterectomy, I would throw up half an hour after eating, sometimes to the point where my stomach was raw. My bowels were also not working properly.
I went to the doctor and was diagnosed with H. pylori bacteria which they treated with a strong antibiotic. This only added to the distress in my body. A few months went by without the heaving but then it started up again with much bloating and constipation. I went to a surgeon who ran tests on my gallbladder and suggested that I have it removed, so I did. The heaving started up again after several months and I went to another stomach doctor, who informed me that I had classic GERD. He suggested that I have a stomach wrap, which I did. The downside of the wrap is if you get nauseated you can't heave. The brain has to tell the stomach to go the other way, which really doesn't work for me.
The last two years have not been good. I suffer now with bloating, constipation, sensitive joints, rashes that appear and disappear, weight gain and extreme fatigue. Last year I did find some things that I know aggravate my system, eg: sugar, caffeine, spicy foods and milk. Sugary things build up more gas in my digestive system and also add to my fatigue. Sometimes the gas is so bad because of my stomach not emptying that I feel as though I am having a heart attack.
I'm very discouraged at this point with my doctors. I've paid out so much in co-pays with no definitive results. I'm not sure of what I can or cannot eat. Sometimes my stomach will turn sour and burn which gives me (or adds to) my hot flashes. My ears will turn beet red and my body feels like it is on fire. I'm thankful for this website. Maybe there is someone out there who has the same symptoms that I have. I know that there is a solution out there, for I am not the only one unique enough to have these symptoms all to myself.
E-mail Sharon: sdparks@REMOVETHISPLEASEcomcast.net
I have been wanting to talk about my experience as a child with IBS for a long time, but I have never been able to. So I have written my story here. It is sad, but I really wanted to put it out there just in case anyone is in a similar situation.
Nearly all of my earliest memories have to do with my bowel. They are invariably embarrassing and still fill me with shame and discomfort, so much so that I have never talked to anyone about them and cannot imagine doing so. When I tell people that I was bullied in school, they ask why, and I cannot give them an honest answer.
I remember locking myself in the toilet for entire lessons in Year One (age six). I remember a teacher having to wipe me in a bathroom after I soiled myself. I remember learning the term 'soiled myself' after a teacher spoke to me through a cubicle door during the before-school activities time I had to go to because my mom was also a teacher and so needed to drop me off early. I remember soiling myself with diarrhea time and time again at school and not knowing how to tell anyone, thinking that no-one would notice and I could just go home and sort myself out at the end of the day.
I remember children smelling the floor where I'd sat and thinking I'd farted. I don't know if they ever realized what had actually happened. I remember teachers taking me out of class to try to talk to me about it, but I don't remember ever telling them. I remember sitting on the toilet with severe diarrhea just before school started and my favorite teacher coming in and complaining about the smell. I called out to her, but I don't remember what happened next.
I would also get constipated, but then when I had a movement it would be so painful that I would try to hold it in instead, and I remember my mother telling me off because I would often try to hide the cramps by standing behind a chair or sofa and holding on. I remember my parents cleaning me up for years longer than they should have done because I would get so distraught and be in so much pain after a bout that I couldn't clean myself.
I remember the trauma of swimming, something which I loved doing, but the water would make me want to go to the bathroom. The same happened with baths, and I would often have accidents in the bath that I would try to hide. I remember having diarrhea at school earlier in the day and walking home later.
I didn't know anyone else who had ever had this sort of problem. I felt alone, a freak, almost to the point of feeling suicidal. It made me an easy target for bullying, because even though they didn't know the problem, they knew that I was vulnerable and unhappy.
My parents took me to doctors galore. They tried to make it into a game, with rewards if I could have a bowel movement. It might seem that my main problem was that I had diarrhea, but really I was always constipated. My parents would give me liquid Senokot, which tasted foul and upset my stomach enough to induce a movement. I didn't know that that was what they were doing, and so my life was full of uncertainty and horrible experiences that I didn't understand.
I remember sobbing to my dad not to give it to me when I was having a good time, since all it ever did was ruin everything, why couldn't he only give it to me when I was already miserable? I remember stomach cramps, straining so hard that I was sick, having movements so large that I tore and thought I had piles from the pain and itching as it healed.
I remember doctors wanting to do a rectal exam but not being able to because I was so constipated. I remember referring to 'the feeling' for the urgent need to go. My father told me that he had had similar problems as a child, which made me feel more embarrassed, and also angry that he was continuing to put me through this pain even though he must know what it was like!
Then I started manipulating people. I had permission in primary school to go and sit in the sick room toilet if I was having problems. I used to go and sit there to get out of whole lessons I didn't like, but it was incredibly boring. I became really introverted because I couldn't talk to anyone about it. It felt shameful, embarrassing and stupid. I remember my mother finding that I'd soiled myself at home and hadn't told her, and she was so angry that all I did was deny I knew. Then she got even angrier that I couldn't tell I'd done it. I always knew, but I didn't want to have to face the horrible thing I'd done.
My parents never explained what was wrong with me. They never explained what they were doing in giving me Senokot. They never realized the pain, confusion, shame, embarrassment and horror of what they put me through for all those years. My childhood was made a misery from badly-managed IBS.
My parents stopped giving me Senokot when I went to secondary school, and I lied to them whenever I could, saying that I was better and had no problems anymore. I think they were ashamed of what they'd done. It wasn't until I was 17 that I finally realized that having a movement once or twice a week was not normal and saw a doctor. He prescribed soluble fiber, which brought my regularity up to three or four times a week.
Now I manage the problem myself, to the extent that I can function practically normally. To anyone whose child might be showing signs of IBS, I urge you not to put them through what my parents put me through. It is a horrifying enough illness without that. Don't make them feel ashamed of what they have to deal with. Don't medicate them without telling them what will happen. Don't make them as miserable as I was.
E-mail Katherine: kastrel13@REMOVETHISPLEASEhotmail.com