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sad tales: men with ibs-d page nine

The tale of...John (26 April 2010)

Well, where to start...I've been suffering from IBS for five years, ever since I had an operation on a fistula. My job is a postman for the Royal Mail which means I have to walk for miles with no loo. My old manager was understanding enough to give me a job inside so I was close to the toilet, which worked great for a while.

Well we just got a new manager, what a nice kind understanding person he is, not. He asked why I couldn't go out on delivery and I had to explain the constant tummy pains, the one-minute early warning to rush to the loo, why I couldn't ride a bike because half the time it feels like my back end is hanging out due to the amount of times I've had to pass a nice sloppy stool which made my piles grow like button mushrooms or if I was lucky one or two might burst to relieve the pressure. I also explained why lifting was a problem sometimes due to the bloating and pain. I told him I had seen doctor after doctor.

Well, all he said was 'John I don't have any work for you' and sent me to the company doctors. I'm still in the process of medical retirement. This made my IBS worse with the extra worry. Anyways I spotted this site and wanted to just get it off my chest, and wonder if anyone else has been through the same thing of losing their job.

E-mail John: [email protected]

The tale of...Jim (26 April 2010)

Although diagnosed by my GP as having IBS about five years ago, I've not read about many people with symptoms very like mine, so I'm writing partly to see if there's anyone out there like me! Also because it might help me to share these difficult experiences. It all began in about 1995 when I noticed I could no longer go regularly in the morning and everything got a bit explosive when I did finally go.

I began to get some mucus and (disgusting!) this began to leak a bit between bowel movements so I was having to wash my trousers a lot. I was having about five or six BMs a day but often felt I had not really finished - apparently this is typical. Plus loads of wind building up especially in the afternoons - often I would be OK in the mornings but bloated and windy later.

None of this has really changed much despite so many treatment attempts and dietary changes. I still have around six BMs a day, more like eight to ten on bad days, and end up with stomach ache almost every afternoon. At work it is worse because it is harder for me to visit the loo as often as I need to. After 5pm I usually sit on the loo for quite a while to try to offload the unfinished business!

In 2005 I ended up rushed into hospital with bleeding piles because of the wear and tear on my backside. My GP finally referred me for sigmoidoscopy and the results were a bit ambiguous - some general irritation and odema (fluid retention) and a small polyp were found. But a later colonoscopy gave me the all-clear, and they couldn't find the polyp this time! Reassuring or what? Still, if it had been serious I would have popped my clogs by now.

I've tried most of the UK treatments going, I reckon, and consider only Fybogel to have been of any use, and that only slightly. As I fluctuate between IBS-C and D, it is not easy to see what to do. Treatments that try to adjust the prebiotic or probiotics in my gut are hopeless for me, they give me diarrhea and even worse wind. That includes Regucol from Holland and Barrett, which also gave me sharp stomach pains. Terrible stuff! As did mebeverine. Peppermint oil capsules seemed to help years ago but don't anymore.

I do take a small dose (20mg daily) of the anti-depressant amitriptyline, officially because it reduces stomach ache, but really it just makes me feel more relaxed and focused. I was once diagnosed as moderately depressed but don't think I am now. However I am quite easily worried by things, especially work, so of course everyone says 'It's all in the mind...'

I've also been under the care of a nutritionist, going as far as a strict exclusion diet in 2007, followed to the letter. The trouble was, the exclusion diet contained too little fiber for me, so I ended up far worse than on my usual diet, blown up and constipated. So that had to be abandoned. If there's one thing I know regarding my diet, it's that I need a lot of good old-fashioned roughage, and the advice towards soluble fiber doesn't suit me. Porridge gives me acid indigestion, and if I don't have plenty of whole meal and bran flakes I soon start to blow up like a balloon, and spend half the day on the loo passing a lot of mucus and not a lot else.

I also get a horrible 'upwards pressure' feeling when constipated, which is a bit like breathlessness and is presumably caused by my colon being full under my diaphragm. If I get this at night in bed, I can be close to panic and have to do slow breathing. For this reason I stick to the bran flakes - I'd rather keep my problems at the bottom end rather than in the middle, if that makes sense.

As dietary changes have been so unhelpful, I just try to eat healthily in general, ie: plenty of drinks, fruit and veg, and hardly any fried food. Because I drink a lot of water and weak tea, I also pee for England, but I think that my IBS also upsets my bladder.

I do have one or two theories about what really caused my IBS, but won't bore you with that yet. If anyone's even read this far...But stress isn't the cause, or at least not stress in the short term. On holiday, and on quiet days at work, my IBS can be just as bad. It seems to be much more continuous than other people's - although I have some worse days, it's always present. I haven't lost weight or suffered bleeding (apart from piles) so I still have a lot to be thankful for. I'd love to know if anyone has experiences similar to mine, and can shed any light on possible solutions/improvements.

Update on Jim...

This is a somewhat sad postscript to my IBS experiences. I've now found out that I should have paid more attention to my bladder and prostate health. It began last December with me noticing how difficult it was to pee properly - I put it down to the cold weather! But when my employer offered a PSA test as a part of a men's health week, I went along. The result was 6.4, far too high for a 51 year-old (it should be about 2.2).

To cut the story short, a prostate biopsy in March showed no signs of cancer, thankfully, but did show prostatitis (inflammation). Not so bad then, but scans and a urodynamics test (urine flow, pressure etc) also showed I was emptying my bladder very poorly, in fact hardly at all sometimes. Yet weirdly, my prostate is not showing up as being enlarged as it does with many old men. My consultant at first said he would have to operate to clear any blockage, but is now backtracking in view of the risks to my sexual abilities at my young(ish) age, and is trying drugs first - more in hope than expectation, he admits. So I'm a bit in limbo for three months, trying a drug combination that my consultant admits probably won't work.

As I still have my IBS just as before, six to seven BMs a day and plenty of diarrhea and wind, together with the need to empty a stubborn bladder as well, you can imagine that my loo and I spend a lot of time together! In fact we do get a bit bored with each other's company. What's more, my latest medication (tamsulosin plus dutasteride) seems to make my diarrhea worse. I'm trying the plant-based supplements saw palmetto and quercetin too (with my doctor's knowledge) because I'm trying every way to avoid surgery, but I suspect my urinary symptoms are too severe, and there's always that fear of acute urinary retention (seizing up altogether).

Work is quite a strain now because these problems leave me so tired and I often sleep poorly. If anyone has any experience of coping with IBS combined with urological/prostate problems, do let me know, including dietary tips. I understand that links between IBS and chronic pelvic pain syndrome (prostatitis) are discussed in the literature.

Moral of the story? If you have bladder symptoms as well as IBS, don't just assume there's no physical problem there, even though you've been told just that many times about your bowels.

E-mail Jim: [email protected]

The tale of...Scott (4 September 2010)

I am 42 and I have been bothered by the symptoms of IBS-D since about 2004. I have only been diagnosed with IBS for the last year. My symptoms are not as bad as other people's, but they are still life-altering. I generally only have a problem about an hour after waking up. If I don't have an attack by 10am I am usually fine for the entire day. I can also go for a period of time with no problems, then suddenly get plagued harshly and daily.

A couple years ago I took a tour trip of England. I was still in the pre-diagnosis stage and I was constantly looking for restrooms and biting back much pain. It was so bad on that trip that I did some damage and started bleeding. Fortunately that led to the full colonoscopy tests and it was with great relief that I was finally diagnosed as having IBS and acid reflux.

I have had several prescription medications, the last being Lomotil, which gave very mixed results. My doctor was concerned with the addictive properties of it, so I have recently been using the Imodium tablets instead. My doctor also told me I could take the Imodium proactively as I am in a job field requiring daily travel to customer locations. It generally works for me, and usually only one tablet is enough, though some days I need as many as six to control the problem.

I take Prilosec for the acid reflux. I have also been slowly identifying which foods are my trigger foods. I know chocolate is one for sure, and tea (which I love) is another. Something in Chinese food also seems to set me off. Like others who write you, I find myself looking at food and wondering if I can safely eat it. I find if I go out to eat, I don't want to do anything after but get home to a restroom, just in case. I carry Imodium with me everywhere and I even have baby wipes in my tool bags to help clean up. I also find that if I eat in the morning I do have an attack, so I normally avoid any breakfast and have a late lunch. I will not eat for at least 10 hours before I have to fly anywhere either.

Until I found this site I really thought I was alone in this. I hadn't heard of anyone suffering as I do. When my doctor told me I have IBS, he didn't really provide me much information about what I could do to reduce the outbreaks. Everything was very general. I have been so embarrassed, I have been late and missed meetings, both business and personal, due to attacks. I have felt alone in all of this, afraid to get back out into the dating world for years - how do you explain to a date you are having a medical issue? I am normally a pretty upbeat person, but IBS has brought about depression at times, and a general feeling of hopelessness.

After reading your site, it was reassuring to see comments from people who have been living with IBS for years and have learned to bring it under control. I went ahead and ordered The First Year - IBS recommended here. I signed up for your mailing list - just knowing that I am not alone in this gives me a sense of optimism and hope. Thanks.

E-mail Scott: [email protected]

The tale of...Andrew (4 February 2011)

I have lived with IBS for 22 years. The first knife in the colon experience left me breathless and crying. I was the tough bully beating-up kid of the school. Large and in charge. Over the years like water over a rock it took my strength until the spasms and malnourishment took all I had. At 20 I peaked at 215lb, with lots of weight training, and then after a severe episode of IBS I was down to 135lb, the same weight I was at age 12. I was a walking stick and ended up in the ER one morning after nearly dying from it. I still think modern medicine doesn't understand the risks of this disease/disorder.

Since the 135lb days I have journeyed all over this earth in search for a cure. SCD, probiotics, you name it. All I know is that after having pneumonia at 11, I was 'saved' by horse pills, shoved you know where. Six months later IBS was now my lifelong partner. One day I hope to kill him. These days I still experiment. I just keep the pain episodes down by avoiding triggers. Diets don't do a lot for me. Lower fat yes but I hope that one day there is a cure.

The tale of...Kieran (13 October 2012)

Thank you Sophie for creating this website. There are plenty of people out there who have managed to beat their IBS and lead a normal life so don't give up. I have just been fired from my job because I was on the toilet at home and couldn't go to work due to too much pain (I made sure they knew I couldn't turn up in the morning but could do afternoons). I was only at that company a week and I put on the application that I have problems.

I am able to work, just not at allocated times or days which no comapany/business wants. I am very smart when it comes down to important things and I am very useful when working as I love work. I have qualifications and I am a home student at the moment with Luton college, but studying is constantly put on hold because other things pop up. I have experience in all sorts of things, from hairdressing, catering, gaming, horticulture, warehouse and warehouse management, the list goes on.

I am normally on the toilet for rarely a minimum of two hours to normally a maximum of about four or five (and that's just going). This can be at any time of the day and can happen every day for a week. I always have to wash the area afterwards and sometimes I have to rest when finished to not cause more discomfort or pain.

The only person who understands my problem is my girlfriend, which I am very grateful for. My mum is constantly having a go at me because I can't work and she blames me for a lot of things. I have several different groups of friends who in a weird way ask if I want to go out basically at the same time as each other and I don't know what to do, and then my mum keeps asking me to do this and that for her (mainly when I'm on the toilet and she asks me to run down to the shop before it closes in like 30 minutes, but I can't so she gets irritated with me).

It makes me very depressed and on a daily basis I just think about ending it all. I constantly worry about eating and I have thought about giving that up. I am always worried about what people think of me and whenever I'm around them and my stomach is playing up and I start having flatulence I worry if I smell because of this.

I honestly can't do my life any more and I just wish I wasn't born. IBS has destroyed my life since 2008 and it only seems to get worse. I have to stop every job I do, even volunteering, and I quit hairdressing at college in 2009. If I can get incapacity benefit it would mean a lot to me and maybe I could stop stressing out so much about money issues, getting shouted at and just general life.

I am a really nice guy and easy to get along with (making friends is easy; it's just managing to keep 'em) but because people have problems with me having IBS and I try to work on that I get depressed. I may sound a bit big-headed but I am trying to put everything into the perspective of why I can't have a normal life. Thank you for your time if you read this and best of luck to you all.

E-mail Kieran: [email protected]

The tale of...Peter (10 April 2015)

Hi. I'm a 57 year-old man. I'm a lorry driver and I have done this job for almost 27 years, it's long hours and nights away sleeping in the lorry. I have got a hiatus hernia and I'm on medication for that. I have also got Gilbert's syndrome which there is no treatment for other than to try and eat and drink the right things. And I have just been diagnosed with IBS and prescribed Fybogel which seems to sort out most of my stomach problems. It has been getting more of a problem as I get older.

Driving lorries is very stressful which makes my symptoms worse and diet is also a problem along with lack of exercise. I'm glad that people are talking about their health problems as I felt alone. By the way I managed to buy a disabled toilet key on the internet and it seems to fit all of the UK disabled toilets so far. Sometimes I have to get there quick. Take care, regards, Peter.

E-mail Peter: [email protected]

The tale of...Lee (30 September 2017)

I'm a 40-year old chap. My IBS started when I was 22. It began with a horrendous flare-up that ended in embarrassment all around. Since then it has fairly well dominated my life.

Each day is the same. I set an alarm to wake me three hours before I need to leave the house. Not so bad if that is an 8am departure, but work means I need to leave at 7am – and 4am starts five days a week is a killer that has been stalking me for over a decade. I am proud, though, that in that 10 years I have not missed a day’s work.

After killing the alarm I get some juice and an iPad and head to the toilet. I usually escape an hour and a half later. Stools are very loose, uncontrollable and the pain often leaves me dripping wet with perspiration and on the verge of blacking out (and on three or four occasions actually blacked out cold on the floor).

If I have to be out of the house for longer than two hours my GP has prescribed codeine phosphate 60mg. That extends the two hours to six hours. If it's longer I need a second dose. Weekends are home-based, no alarm, no meds.

I’ve had cameras on impossibly wide tubes everywhere they will fit. I’ve had allergy tests for everything. I’ve tried homeopathy. I’ve kept food diaries. I’ve fasted. The only things that any of these have revealed is: high fat foods are a no-no and otherwise there is no rhyme or reason on what will spark a flare up.

I also can’t lie down for at least two hours after eating without incredible pain. After I finish work, do the family routine and finally cook (processed food is a gamble that I no longer take) the earliest I can go to bed is 11pm. Five hours sleep on week nights is slowly prematurely ageing me!

In the past month I’ve decided to try something different. I am going for a low-calorie protein shake for breakfast and lunch. A fat-free evening meal. Magnesium and enteric-coated peppermint oil supplements. So far, no change.

Any and all advice from this tale would be very welcome indeed, other than work from home or work shorter hours – neither of which would help me teach my elementary grade classes!

E-mail Lee: [email protected]

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