Doctors says its not IBS... what could it be

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Hi there,

I perhaps should have wrote this a long time ago, but things are coming to an inpass and I need to write this down and see if I'm going crazy or not.

I'm a 33 year old male, in a full time job, and enjoy what I'm doing very much. I don't feel pressurised by what I do there at all and am confident that I deliver - all except in one area (which I'll get to as it is directly in proportion to what I type below).

For about 10 years now (since stopping Alcohol and recreational drugs) I've had a few issues in relation to my bowels. I find it very hard to hold water, and whenever I feel any type of pressure I have to go to the loo. More recently, in the last four years I have also been having a lot of trouble with my stomach - always aching and upset and have been having issues in that department too (going very often).

Bearing in mind I've never had an accident, my day to day life is being affected by this, I've not been able to travel (long distance) anywhere in years, in the fear of needing the toilet and one not being available.

I tend not to watch movies at the cinema anymore, accompany friends on days out, even go shopping for food at a big supermarket in case I find myself in need.

More recently, I've been panicking in the mornings, I cannot handle a 15/30 minute commute on public transport to my work... I panic and worry about if there are roadworks/traffic issues or the bus is busy and I have to share a seat with someone. I dread having the feeling in my guts somewhere where there isn't a loo.... I've ended up taking direct Taxi's at great expense to and from work because I don't want to be around other people and I'm constantly afraid of having an accident.

I'm in the position in my job where my attendance is not mandatory at all meetings but I tend to find myself subconsiously booking time off or feigning illess when I have meetings that I have to attend - again just in case I can't hold my bowels for more than 1 or 2 hours.

My GP has not really helped so far ..I've been told (after tests) I do not suffer from IBS or Crohn's. My bladder muscles are in fine working order as well as the Pelvic muscles but they have given me tablets to this regard (to tighten up muscles)... ( I have a healthy sex life with my partner, which is not affected by this..)

I'm at a loss, my life sucks, I don't go out anymore... or if I do I'm in constant worry that I'm going to have an accident.

Is this all in my head, having dealt with it for 10 years and progressively get worse? Is it anxiety or problems with my bowels, is it actually problems with my body I don't know..

Thanks for listening... Ben

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  • Posted

    Have they checked you for Coeliac ,look that up ,sometimes that's the last place you look at .Coeliac . Org .Ive had probs going on 9 years no answer in sight . 

      Go have a look .

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    • Posted

      Thanks for your reply =)

      I have doctors on Monday morning, will push for everything this time, it's finally gotten me down enough to pressure him... that and my mother is coming with me!

      I'll check out Coiliacs .org thank you for the link

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  • Posted

    Hi Ben, 

    Sounds like IBS to me to be honest. There is no definitive diagnosis for IBS - just based on symptoms. You can take a test to show it's not Crohn's as it has similar symptoms. It sounds to me like you have social anxiety too which stems from your IBS . . . but I believe the root cause is generalised anxiety. Sometimes, you can suffer from anxiety for so long that you get used to it and don't realise how much of a problem it is until it affects you in a physical way which is significant enough to make you not ignore it. . . 

    Alternatively, as Marlene suggeste - perhaps you are coeliac or maybe you suffer from food intolerances/allergies

    Please see my discussion on dealing with IBS: 

    https://patient.info/forums/discuss/7-years-of-experience-advice-for-ibs-sufferers-270455

    And this one on dealing with depression/anxiety:

    https://patient.info/forums/discuss/-golden-list-tips-for-anxiety-depression-270878

    Hope these tips help Ben and best of luck to you! 

    Let us know how you get on!! 

    Agirl x

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    • Posted

      Will look these 2 up for myself .especially IBS ,although think not I've not read up on in regards to IBS ,I suffer from eczema which I didn't know was another condition for Coeliacs until today .learn something new every day hey .
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    • Posted

      Thank you very much Agirl, I will check out these links and let you know I cope with the doctors appointment.

      Need to get a grip on my life, it shouldn't be so hard to catch a bus even! 

      Ben x

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    • Posted

      Thanks Marlene will do! I hope you find/found the links helpful!! 

      I have eczema too! I believe they are all linked, anything to do with you rbody being sensitive to types of food/allergens in the air or in contact with your skin - it's all linked to the body being hyper-immune if you ask me! 

      I heard there's some theory behind it to do with being given antibiotics very early in life as a baby (as I was), it can lead to improper devlopment of the immune system! This is all according to this one documentary, who knows? Makes sense to me though! I have asthma, eczema, IBS and food intolerances! 

      Agirl xx

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    • Posted

      Hi Ben, 

      Hope they help! Do let us know! 

      DOn't be so hard on yourself! I had a complete breakdown about going in to college to do my labwork in case I made a mistake one time! I literally didn't sleep for 3 night's in a row because I was so worried about doing this one part of the work . . . so you are not alone! 

      The good news, is that you can learn ways to control or at least reduce or prevent your anxiety. 

      I know yours is steming from a physical problem but perhaps the physical problem was due to lower level stress/anxiety in the first place. Whatever you do, don't overlook that possibility! I did that for yeeeears!! 

      But do fully check out the other options too like coeliac/food intolerance etc. as others have suggested!! 

      Agirl xxx

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    • Posted

      Thanks for those links ,amazing what others on these sites find that helps others ,better than a Drs visit by far .

        The only thing I've not got is asthma ,but my dad and sister below me had ,and have asthma both really bad .The youngest has eczema ,so it's allergies .ive had skin prick test but Hsp only give the basic test ,and they proved neg .Since I got Rhinitis 8 yrs ago my eczema had been bad ,namely behind ears and inside ,also the scalp ,to which I use TGel .

       So IBS yes to food intolerance which has been more noticeable in past 8yrs ,tomatoes ,peanuts any processed foods .So your diet is very bland , it's a nightmare ,even meds can set it off ,antibiotics etc .Just can't get any improvement daily .

       I've got Tinnitus ,and balance problem with all what's going on it gets me fed up .I got a virus almost 9 yrs ago which kicked this all off big time .

          How old are you ? How long have you had all this going on ? 

         You have my sympathys ,it's miserable .Big Hug xxx 

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    • Posted

      Hi Marlene, 

      No bother at all. Yes I agree, sometimes someone who has gone through it can give much better advice than a doctor/counsellor! ThoughI have to say my GP was excellent, thank God :D 

      That sounds rough. I just bought T-Gel today as I have quite bad dandruff! I get eczema all on my hairline especially and also sometimes on the inside of my elbow. Or with stress I can get a bumpy red rash across my face. I use aqueous base/silcock's base cream for it. It works as a moisturiser or soap but obviously you can't use it on your scalp so that's why I decided to get a special shampoo as it has gotten pretty noticeable and very itchy! Enough is enough! haha 

      I actually find my stuff is quite manageable now! The lactose intolerance bugs me the most as it means I can't eat out as much as lactose can hide in sauces and all sorts of products you wouldn't expect it! But apart from that it doesn't really bother me! As for the asthma, I had it more as a child but if I exercise and I get out of breath my chest might get a bit tight e.g. after I do a half hour run. Not enough for me to need the inhaler, but can get uncomfortable. If I get a bad cold it can crop up a bit too. Or when I cider for some reason, I start wheezing straight away! My Mum says it's because of the sulphites! 

      I am just out of university. Have had IBS about 7/8 years. Asthma more so as a young child. Eczema . . . hmmm maybe I'd say last 3 or 4 years, Maybe slightly longer. It first cropped up on my hands when I used to use normal soaps so now I only use cold tar soap or aqueous cream or else it irritates my hands and they get all dry and the more I use it, the more I use it, it would start to get raw if I didn't stop using the soap.

      Don't worry, I am very happy and I am just glad I know how to treat these things now so that they are not annoying mystery illnesses that  I feel I have no control over!! I hope you can find some treatments to help you manage your symptoms of your illnesses better so you don't feel it upsets your life as much! 

      All the best, 

      Agirl 

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  • Posted

    PS I think the anxiety you feel on the bus is a mixture of health anxiety and social anxiety! 
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  • Posted

    Couple of things to try:

    - This weekend try doing some bladder training (essentially in a safe environment forcing yourself to hold your bladder for as long as possible), it's to remind your bladder it's not as full as it thinks it is. 

    - As has been suggested get check for lactose and / or gluten intollerances.

    - IBS does sound a likely cause, bit it's best to rule out as many other organic causes as possible!

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    • Posted

      Hi Hurricane, 

      Thanks for the reply. I've tried the bladder training numerous times over the years, and it's never really had a lasting effect on me - although i generally try to push myself it's just impossible not to go to the bathroom -get super irritated and have to go. I've still never had an accident though, I don't know if thats due to there almost aways being a toilet nearby or my problems are exacerbated by my anxiety issues.

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    • Posted

      Hi Thrombosis,

      It only really works if you keep doing it. You bladder can definatly get bigger (heck, some people can story up to 3 litres! Maybe use a distraction tool? For example sit ont he toilet but have a film / episode of family guy or something like that on your phone and don't relieve until the episode finishes. 

      Your problems are almost certainly exacerbate by your anxiety issues, but a bladder that forgets what it's like to be actually full will make you feel a sense of urgency even when it's really only just starting to inflate.

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    • Posted

      Hi Thrombosis,

      It only really works if you keep doing it. You bladder can definatly get bigger (heck, some people can story up to 3 litres! Maybe use a distraction tool? For example sit ont he toilet but have a film / episode of family guy or something like that on your phone and don't relieve until the episode finishes. 

      Your problems are almost certainly exacerbate by your anxiety issues, but a bladder that forgets what it's like to be actually full will make you feel a sense of urgency even when it's really only just starting to inflate.

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