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sad tales: men with ibs-d page six

The tale of...Wayne (September 2006)

I am now 33 and I can clearly remember my first 'attack' at the age of 11. My mum and dad were taking me to see some family friends in the Lake District, England. During the journey I suffered excruciating stomach pains and had to make several stops. Eventually I thought I would be OK until we reached our destination, but I was wrong and ended up making a mess in my clothes. We arrived at our friends with me crying my eyes out and my mum and dad having to explain what happened.

Over the next few years I would go from spending days not going to the toilet followed by several hours sat in pain until everything had 'come out', usually during the night. After several visits to the doctors, who eventually referred me to a specialist, who then carried out all the tests (a barium enema at the age of 14 isn't nice) I was diagnosed as having a nervous bowel.

For the next nearly 20 years I have suffered in pain and embarrassment, missed out on many of the enjoyable things I would have loved to have done (not being able to go on trips etc in case there is no toilet), and slowly got more and more depressed as the symptoms seem to get worse and more frequent. My symptoms seem to worsen if I know I'm going somewhere where there may be no toilet or if there is a long (more than half an hour, ha ha) journey involved, and in the mornings.

I used to drive a van around England for my job as a crane engineer and would have to carry my emergency kit (change of pants, bin bags, baby wipes, toilet roll) in the back in case I got stuck in traffic - it was like my own porta-loo which would be heaven to some people. Certain foods do trigger my symptoms off and I find I drink far too much cola which may not be helping. The problem is I have never actually been diagnosed with having IBS and so haven't looked into the various possibilities of causes.

Tomorrow I visit the doctor yet again, who bear in mind still hasn't diagnosed me with IBS, but has given me countless anti-spasmodic powders and anti-depressants. This time after reading all of the other stories on this site I will demand that he looks at the possibility that I have IBS; not that this will help as I have come to understand, but it will at least make me feel that for all these years it hasn't been a condition that is 'in my head' and that I may be able to do something to ease the pain, one of which is posting my thoughts on this site and seeing that there are many other people out there like me, thank God.

E-mail Wayne: [email protected]

The tale of...Rick (17 October 2006)

I've been suffering with IBS for nearly 10 years and it completely controls my life. I live in fear of it. It dominates me and consequently it dominates my family's life. I have the 'Toilet Police' version. I don't know whether the panic triggers an episode or the episode triggers the panic.

I adopt the avoidance method - I always carry some tissues. I check every available traffic system to reduce the possibility of becoming stuck in traffic. I've had my car windows blacked out just in case. I've turned down employment because of possible traffic problems. I check every venue for the number of cubicles. I note every alley, bush, wall, store and bar.

I refuse to take my wife to her favorite restaurant because it is a very busy place and only has one cubicle. I won't take my family anywhere where there's a chance of no toilet facilities close by and available. I find myself frustrated and becoming aggressively defensive of my decisions not to do things. I'm beginning to think that living within my own four walls is the 'perfect' existence and I have pondered the relief that The Big Sleep may bring. I think everyone at some point mutters the words 'I wish I was dead' but then the gloom lifts and we all carry on.

For all my bravado I feel like I'm carrying a heavy burden of guilt. I've read some of the stories on this site and am humbled. I don't know how our partners can cope with our paranoia (particularly mine). I'm sure there are worse things in the world but I find my condition self-absorbing. I've tried the complementary medicine and have been on medication for years to assist my day to day life. I'm sure you've heard this type of tale a thousand times before but it's nice to just put it all down.

E-mail Rick: [email protected]

The tale of...John (20 January 2007)

About 10 years ago I noticed a change in my digestive process. I was 33 at the time and never in my life had any issue in this area if you know what I mean. I noticed that I would have to go to the bathroom shortly after eating, several times a week. This was especially fun when I was commuting from NJ to NY via the train and subway where bathrooms are either disgusting or non-existent.

I also began losing some weight, which several of my fellow workers commented on or joked about (they called me bubble boy or bug boy and suggested that since I visited the restroom so much they would move my computer to the handicap stall for efficiency). After several months of this I saw my GP who did a stool test, checked for blood and said she could not find anything and that I should see a specialist.

I then sought out a gastro guy who took a history, ran the same stool tests and said that he thought it was nerves but that to appease me, he would do a colonoscopy which turned out to be fine (ie: no problems detected). As my symptoms got worse and I lost more weight (25 pounds) I got desperate and sought the advice of the one doctor I would trust with my life, my wife's OBGYN. She sent me to a specialist in NY City who took a history and ran a bunch of blood tests. He discovered that I had giardia and put me on very heavy duty antibiotics. Further tests revealed that the giardia was eradicated but I still did not feel well.

After several more months, more aggressive tests were taken. I had additional colonoscopies and endoscopies, CTs, and sonograms which revealed that I had H. pylori. This entailed more heavy duty antibiotics to eradicate the infection. While a follow-up endoscopy several months later revealed that the infection was cured, I still felt bad.

That is when I was told that I may have IBS. After a year and a half of tests, drugs etc they tell me that I have this condition. The problems that this caused in my personal life (marriage) were substantial. I was not the best patient during this time and my wife got tired of listening to me complain. My doctor thought that my condition was causing me to be depressed (who wouldn't be after all this) and I agreed to speak with a therapist. This turned out to be a waste of time since I acknowledged that I was depressed but that I would get undepressed if I felt I was getting better, to which he did not have a response.

It has now been approximately 10 years since the outset of my condition. And while I am better now than when the two conditions above were present, I still have many of the symptoms (diarrhea, bloating, etc). I have learned to just deal with the condition and not let it control my life. Luckily it is not as bad as some of the stories I have read and can be largely controlled with common sense.

I normally get a little bit of a warning as to when it will flare-up and I ensure that a bathroom is near. I never discuss it with my wife because I know she does not want to hear it and there would not be much point to it (no sympathy there). Sometimes weeks go by and I feel great and almost forget that I have this issue. Then I eat a meal or for whatever reason it flares up and I spend some time in the bathroom.

I just try and live my life and enjoy it as best I can. If I eat a nice meal and some wine and it results in a bathroom break so be it. I am not going to eat some benign diet my whole life. That is no way to live. I carry Imodium with me at all times and use it when I need for the symptoms to stop (not near a bathroom). Otherwise I let it rip so to speak.

I am not sure this story will help anyone or not but here it is. If I had one message it would be to seek out as much medical diagnosis as you can stand or afford. You may find out you have something else and then can deal with that. Once you have done that you can try and learn to live with it as best as you can, enjoy the good times that life offers and manage the down times as best as possible.

E-mail John: [email protected]

The tale of...Ethan (October 2007)

I am 28 years old. I have been suffering from what the doctors think is IBS, and after reading some of the stories here I believe they are right. It all started about four years ago...I would use the restroom every now and then and be in there for about 20 minutes, but I would feel fine after I was done. Slowly, day by day it became worse. I now wake up in the morning and I am in the restroom for at least an hour and a half. I have to go back no less than four times a day.

I never have relief and I always look for a restroom whenever I go anywhere (which is hardly ever). I have horrible pains and I feel like I am going crazy after being on the toilet for so long. I am late to everything or don't even make it half the time and my wife (poor thing) has to call and cancel our plans. I feel so bad for my wife because this is all she knows of me. I can't plan anything special for her because I don't know if I'll be around to enjoy it.

I am trapped on a toilet more than half of my day. When my wife says 'Go say hi to Daddy' my children know to go look in the restroom. I have tried almost everything and nothing works for me. I thank you for listening and want to let others know they are not alone. If anyone has any advice...please send it my way. Good luck to you all and God Bless!

E-mail Ethan: [email protected]

The tale of...Kostantinos (October 2007)

I am 23 years old and I've suffered from IBS since I was 16 years old. A stressful incident at school before the exams triggered my condition and since then my life is ruined. The first few months I spent my whole summer sitting on a damn toilet while other kids went for sunbathing and swimming and making relationships and having a great time...I felt terrible.

I went to a doctor after a while, had painful examinations of all kinds, and was given some pills which didn't work. My last session with that doctor was when he told me 'You should go to a shrink, I know someone to introduce you to...' and I felt terrible. I found out that there was no cure so I said to myself you should live with it.

I missed school many times, yet I managed to get into university. Sometimes I cried because of this problem, I missed many pleasures and said 'Why can't I do what other people of my age do, I want to go out and have fun, return home as late as I want' but no, I must think of where the toilet is every time my belly hurts or how long it takes me to get home.

Friends were telling me 'Hey let's go out for a beer' and I always found numerous excuses instead, cause if you always say 'No man, I got a gut-load waiting and I can't go out' no matter what friends you have they will never fully understand that it hurts and it ruins your life. Now they don't tell me to get out often.

I rarely go out for a dinner or a picnic, and when I do I eat nothing for 24 hours. In the morning I prepare myself one hour before I go somewhere just to empty my bowel and feel better. Same thing goes when going out for a drink. I feel terrible when telling my girlfriend that we can't go out because my belly hurts.

I hope the next time I tell my story will be when I tell you that the previous day I had a huge meal in a restaurant with all the goodies of the world and that afterwards I went out partying all night...I also wish the 'big guys' of the world would do something about IBS and find a cure for it as with so many other diseases, because right now we are prisoners of our own bodies.

Although not as many men as women suffer from IBS this doesn't mean they suffer less...I am from Greece and I didn't know much about IBS as many people here don't, so thanks for the internet for that reason and letting me know I am not alone! I don't take drugs often since they do nothing, yet I am optimistic about the future, we will make it!

E-mail Kostantinos: [email protected]

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