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I am not managing and I need help

Hi everyone! I have been having problems for a couple of years but I was only diagnosed with IBS 7months ago. Since then it’s only been getting worse and my doctor in the UK hasn’t been able to help me very much. I am taking mebeverine but it feels like it’s a sort of placebo... my life is a nightmare!! I just had to leave my husband’s birthday dinner before even touching the food (after having used the restaurant’s toilette repeatedly, with a queue outside and people knocking at the door while I was in). I went on holiday with a friend and spent every morning 5 hours before being able to leave the hotel and then loved the rest of the day in fear and with frequent episodes. It happens even when I don’t eat, and now I am literally scared to leave the house, even to go to work (which I am not doing). I am working almost everyday remotedly but this is going to change in a few weeks when I’ll have to go to work. It doesn’t matter what I eat and I’ve grown terribly scared and anxious every time I’m outside. Today I took a taxi to go to a doctor appointment as I was scared to take the tube and be trapped (I can not afford to to this). My GP sent a refferal for a dietician but nobody has contacted me yet. I am meant to go on holiday for two weeks to Asia and I am scared to death to even go to the restaurant 4 minutes walking distance from home. I haven’t drunk any alcohol for years, I am gaining weight which has affected my gait to the point of needing physiotherapy. I am desparate and I hate myself and my life.

19 Replies
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Feel so sorry for you

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Thanks

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Try to see a gastroenterologist. They may be more helpful than a GP. You can also try Immodium when you will not have access to a bathroom for a period of time. Take a look at the FODMAP diet on the Monash University web site. This is where the diet was invented and there is a lot of information. This diet has helped me a lot, although it would not be possible to do it while traveling. In the meantime try to eat lightly and blandly. It is a very difficult situation. Can you go privately to a gastroenterologist?

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I went last week to a gastroenterologist in my country as I got sick during my travelling and had to go back home to be treated. She prescribed me probiotics and the equivalent Elavil which is used for mental health issues. It’s meant to work on the activity of the neurotransmitters such as serotonin and dopamine which are thought to be involved in bowel’s activity. .... I haven’t had any benefits so far. Also Imodium doesn’t work anymore. I can totally tell you this situation is not only screwing with my social life and my body, but my mental balance too... I’m developing anxiety and depression which are totally precipitating and perpetuating the condition :( I’ll try the FODMAP thanks, I have tried some diets but nothing appeared to help at all :(

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It takes at least a month for seratonin meds to start working.

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Please, please do NOT beat yourself up. This is a disease just like any other and a vast majority of the population has it in one form or another. Anxiety is getting the better of you. The more you stress about what “ might” happen the more your body reacts. You have to stop worrying, you have to tell yourself it doesn’t matter, so what, who cares. This is about you, not everyone else. Wear a depends, it totally gives you piece of mind. Take baby steps, go to the store, gas station, mall, whatever is a light trip that gets you out for a short time. You can overcome this, do not let it make you a prisoner in your own home. Keep me posted and good luck

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Thanks it’s very nice of you :) today was a better day than yesterday

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I have been told that acupuncture is really good and am going to try it when I get home....on holiday at present. Worry is the worst thing as it makes everything worse.

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Well there’s no harm in trying. Be careful though because I read a lot of clinical trials concerning acupuncture and many reported no proved benefit. I think it might work for some and not for others depending on the attitude. I hope you can enjoy your holiday

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This is all very much what we all here deal with daily - so you are not alone.

I have left places, not gone to events, hate social events etc. IBS can rules you life. Sadly in my opinion IBS is not really a true diagnosis if it comes too quickly in the process with out proper testing and experimentation.

I highly suggest seeing a specialist that is up to date on the latest IBS / Gut / etc findings - There has been no better time to have gut issues with all the research going on. Gut is the hottest thing in medicine right now just go look in your local store at the million different kinds of probiotics on the market now.

You should look into things with the help of a good Dr. - SIBO is one to look at, and various other gut items but all of these require some testing and a plan of attack.

While it is easy to say and hard to do - being anxious daily about daily events helps nothing and will definitely add to all symptoms. Finding a way to minimize that is also key to controlling symptoms. I also know that on some days I just need to give into my symptoms and take a sick day etc.

I wish you luck - We all need some luck here.

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Thank you for all your valuable tips, I’ll look them up and let go know. May the luck be with us :)

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I feel so sorry for you. I know exactly what you are going through. It got to the point where I thought about quitting my job. Its such a catch 22 with anxiety and ibs. Thing that always comfort me i always carry imodium, tissue, underwear etc just incase i did ever have a accident i can be prepared. I no that doesnt take the worry away. Have you ever thought about hypno therapy?? Believe in yourself that things will get easy. This is all new and you need to find diets and coping mechanisms that work for you.

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Thank you! Imodium is like candy for me now I have some in every handbag, every pocket etc! The other day I handed some cash to a cashier and an Imodium got caught up between the notes and she quietly gave it back with my receipt haha! I am not a big fan of hypnotherapy, the best evidence-based treatment at the moment is CBT according to all the accredited psychological resources I read. Have you tried it yet ?

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I think CBT would really help you. I'm on Meb and have done months if CBT when my life was very similar to yours. You start to live in fear of the ibs,which only makes the ibs worse. Talk to your gp about CBT,do some research on it,see if it might be for you. You will get this sorted. I'm sure of it.

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Thanks for your kind words. I am a psychologist (in the making), and I am afraid it might not work. What I mean is that I studied it so much from the other side I feel I would be a reluctant client and not adhering properly :(

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It is like that saying that all doctors and nurses make for awful patients. But being on the other side of the coin,being the one seeking the help,might make you see it differently and it might allow you to take off your psychologist hat and let someone else help you. If your IBS isn't linked to your diet,like mine isn't, then your mind is to blame. And you have a better advantage than most because you already have the understanding of how it is all linked. With knowledge comes power! Good luck.

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I take mebeverine and also believe it’s not working for me, going back to my gp to see what else is available. I feel like I’m struggling to find one thing that’s triggers me as I have the same horrific episode every morning! Only diagnosed in December but felt I didn’t really get much from my go just a “take these 3 times a day” it’s so frustrating x

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It is terribly frustrating and this feeling of hopelessness is definitely not bettering the condition. I was diagnosed in December too, and it seems nothing really helps. I tried yesterday night for the first time this new drug a doctor in my country of origin prescribed me and today was a better day but I don’t know if it’s really related to that. Let’s hope for a better treatment

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Hi, I totally understand what you're going through. I have and still am going through the same. My GP prescried peroxitine for the anxiety of not been able to leave the house, travel on trains or visiting unfamiliar places. I have not been abroad for last 20 yrs. I am prescribed anti-dirrhoheals for a when I get frantic episodes which leave me drained and very lethargic. My manager does not understand at all.

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