I have had IBS since I was 11 years old. I remember the first time I experienced it was with an attack. It was so much pain that I thought I was dying. I was younger and I had my mom in the bathroom with me and I told her to kill me because I just could not take it.
From that time on I experienced all the signs of IBS. Nervous stomach, always worried that I would have an attack. It was probably one of the worst times to get it too. I was going through puberty, which is already an uncertain time and I had to deal with IBS as well.
I got depressed, I became mildly anorexic because everything I ate hurt my stomach. Eventually the pain got so bad that I would pass out. One of my worst times was in school. I had just gotten my period and was having terrible cramps already and then an attack hit.
I got up to tell the teacher I needed to go to the nurse and all I saw was red. I have the type of IBS where I'm extremely constipated and then have an attack with diarrhea. I feel for other people who have this condition, especially those of us who got it young.
The terror of having an attack when you have no idea what's wrong with you is unimaginable. One positive things I can say is that I feel like such a strong person for being able to get through this because I know that during the attacks I have strong urges to end my life. Over the past few months my pain has gotten a little better and I'm hoping that it stays that way.
Let me just start by saying that my IBS started after I had a life-threatening situation with a Meckel's diverticulum (an intestinal pouch some people are born with). After numerous surgeries and much time off from work, I had returned to a sort-of normal life. My husband and I were lucky enough to have two healthy daughters.
After these surgeries...I had pretty much found that I would have to live with the 'where's the bathroom?' and 'I have to run home for a little
while!' Anyway, several years later, I found I had excruciating pelvic floor pain...which was relieved by going to the bathroom or getting rid of air. I finally had a hysterectomy and my OBGYN told me I had endometriosis as well. He told me after the surgery that I was cured!
Well, I still have the pain on some days and some days I don't have any pain. I have determined after several years that this pain in associated with IBS. So far, I have always been able to find a restroom in time. Anyone who has this disorder knows the embarrassment this disorder can cause.
Sometimes I wish the government that requires ramps for those in wheelchairs would require public buildings to have at least one private restroom for those of us with hidden handicaps. I don't have to tell the other sufferers about trying to work...it can be a real challenge.
As for medications, I have found that Librax, Tylenol 3, Metronidazole (Flagyl) sure help. I also take two chewable tablets of Equalactin several times a day. This will help bulk up what you eat. I have also just found a new product on the shelves at Wal-Mart. The name is OmnigestEZ. I have only taken it for a few days, so I can't say for sure that this is going to be a success, but I was able to stay in my own bed last night and not have to move to a different room because of the amount of gas I experience at night.
I also use a floor fan at night to help me sleep, so I don't have to wake up and listen to my insides rolling around, not to mention my husband being able to get a good night's sleep.
My youngest daughter and I plan to leave for South America for ten days vacation. For this trip, I will make sure that I have all my meds, including Nullo tablets (they can be taken internally) to help with smell. I also buy several small spray bottles of Ease, Medi-Aire that can fit in my purse when I have to use a public restroom (these are a Godsend).
I sure understand the down feelings all my fellow sufferers go through. It is not easy, but I just keep hoping that they are going to make great
strides when it comes to understanding this disorder and hopefully new medications that will make life livable for us.
The tale of...Fiona (November 2003)
I would like to tell you the beginning of my story, as that is where I am. I have to put up daily with the pain and uncomfortableness, I don't know from one day to the next if I will be needing to be near a toilet or if I can't go.
My doctor diagnosed me about nine months ago. She was useless, gave me a leaflet and said 'Read this and try not to eat too much fat.' Well her being a doctor I listened to her 'advice'. The leaflet gave a little information - the usual eat more fiber, relax etc. My flat mate at the time suffered from IBS so she told me what she knew. I didn't realize that it's different for everyone. Anyhow I knew my IBS must've been set off by stress. I used to care about my job too much, and it made me stress out for the silliest things.
To help with the stress and help me to relax I began going to a reflexologist. This was the most brilliant idea anyone ever gave me. It is the most heavenly feeling, and it helps to release toxins that can then be flushed out by drinking water (two liters daily). I still go once a month, to keep me calm.
I have changed my diet, due to a book my boyfriend gave me (he has been a saint and found out more to help me than I have). I am currently trying the high fiber, although by reading everyone's stories it may make me worse! I am three days into this diet and it's not too bad, but I haven't noticed any major changes.
I am still in the current job, which involves a lot of car journeys around the UK, I know where all the service stations are! I give less of a monkeys about it now, it doesn't stress me, and why should it? I am only paid for 37 hours a week, why should I spend many more hours worrying about it - and making myself ill? This attitude has been influenced by my partner who doesn't like bureaucratic companies, and it has helped me to detach my life from my job (we should work to live, not live to work!)
The latest thing he has done for me is introduce aromatherapy. He bought me an oil burner and three oils for Christmas. He also spent well over an hour in the shop discussing IBS, stress, hormones etc with the aromatherapist. I was very skeptical about aromatherapy, I always have been (how can lavender be relaxing to someone if they've never smelt it before? Surely their brain just wouldn't recognize it?)
Well for the last two weeks we have put six drops of lavender into boiling water in the burner (the burner needs to hold at least 40ml of liquid). Lavender helps you to relax, so for three hours before bed burning it in the same room as you helps you to sleep deeply, thus helping your insides to 'recover' better from the day. I have to say it has helped, and is something I will continue with.
I am very lucky to have such a great partner, and now to have found the UK IBS Network. I know now I'm not suffering alone. I am annoyed at myself for making it worse by stressing about work - especially as it's not a job that I wanted to do, but had to take due to the need to pay the rent.
The tale of...Kody (November 2003)
I'm a 21 year-old university student and I've been suffering from IBS for about four months now. It all happened during the summer of 2003 when I got a bout of gastroenteritis. During that time, I thought...no big deal. Everyone gets diarrhea once in a while, just drinks lots of fluids and take it easy for a few days and it will all go away...but it hasn't.
Throughout the last few months, I've had countless bouts of diarrhea, sometimes several times a day. Even when I don't have diarrhea, I have abdominal cramps and pains and feel that something is going to come out any minute. Like a lot of you on here have said, it really is devastating. I have always been a star athlete and loved to travel and hang out with friends. Now I can't do that. I can't go out for that nice round of beer or go on a road trip for the weekend. Some days it can get pretty depressing.
The doctor has given me Modulin/Dicetel, but sometimes they don't even help. Before it happened to me, I would have had no idea what IBS was and how much it can screw up someone's life. I definitely have sympathy for all of you who are suffering from the same thing. It is a challenge going from day to day not knowing how you're going to feel and how much your day will be affected by it.
I have had IBS for the past 18 years. I loved school up until I was 14. That's when my attacks began and they have not stopped since. I missed so much school, I was branded a 'cutter' and my parents thought that I hated school. I never knew if it would be a good day or bad day.
I was always in the bathroom at school, and being a teenager, always concerned about appearances, I would not leave the room until everyone was gone. My parents took me to the doctor but all I was told was that I had an ulcer, take Mylanta they said. Perhaps my description of the symptoms was not clear enough.
Eventually I quit school, obtained my GED and married. My spouse was very understanding of my problem. He couldn't miss the belching, passing gas and abnormal amount of time spent in the bathroom. I have since learned to find the bathroom first thing whenever I go anywhere. I may not have to use it right then but it helps to know. It's rare that I eat out.
I take Imodium every day. Sometimes it works, sometimes it doesn't. The stomach-grinding pain, nausea, hot flash thing that comes every day is a bit depressing. I never know where I'll be when it attacks. I am a truck driver and sometimes you just can't find a bathroom.
I have given up and just carry a bucket with plastic in my truck for those times that I can't make it to the rest stop. I have missed so much work that I am always on warning. All my friends know about it. I make sure to ask what is in the food at their houses. They are very understanding. I hold out hope that someday there will be a cure and I can be normal again.
I would enjoy getting up and leaving the house first thing instead of having to get up three hours early to see what kind of day it will be. While I wish no-one had to suffer this, I am relieved not to be alone.