Getting annoyed with ‘I have IBS too’ - IBS Network

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Getting annoyed with ‘I have IBS too’

Megamini27 profile image
71 Replies

Just a rant really and wondered if anyone else tires of this.

Since I have been diagnosed with IBS, it has really started to bug me- friends who I have known for years and spend a lot of time with, all now tell me they have IBS and none of them quite understand why I’ve been so poorly.

For example. For those of you who saw my first post, you’ll know that for three months now, I’m having a terrible flare up. I couldn’t leave the house for two weeks whilst I struggled to get it under control. Im being mega careful what I eat, and am terrified of doing anything to kick it back off. Last night on a group watsapp, someone asked if we should all go out for curry over weekend. I replied I would give it a miss as I’m still not right at the moment. Cue six messages from six different friends- all telling me they have IBS and ‘you shouldn’t be ill for that long’. ‘Just have something less spicy’, ‘I’d be going back doctors if I were you. That’s not normal’ and ‘I have IBS. You only get it for a day or two and the pain is just like tummy ache. Maybe you’ve got something more serious, you don’t get spasms up there’.

Im sat with a hot water bottle, passing gas like im a hot air balloon, bloated, with no appetite, entering my 13th week. I’ve never known any of these friends even mention IBS before. Certainly never heard any of them say they’re poorly/ can’t work/ refuse a social gathering. I really wanted to reply and say that maybe they don’t have IBS at all because if they did, maybe they’d be a little more understanding! But I didn’t…..

They make me feel like I’m over exaggerating my symptoms or even worried that I’ve got something way more serious happening in there.

Anyone else get the ‘ooh I’ve got that but not like yours’ comments that make you want to scream?! X

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Megamini27 profile image
Megamini27
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71 Replies
FRreedman profile image
FRreedman

Why does it bother you that your friends are trying to empathise with you? Why do you have to tell them the reason you can't/don't want to go out with them? All my friends knew I suffered with IBS/IBD, and if they were going somewhere and I couldn't, I just said not for me thanks.... no questions, no dramas, no comments (to my face, anyway). Maybe if you stopped giving the reason you couldn't go with them, they will stop trying to belittle or empathise with your condition.

Please be aware that I am not saying keep your ailment hidden, just don't put it out there quite so much. Good luck, take care and stay safe.

Megamini27 profile image
Megamini27 in reply toFRreedman

It’s not empathy. It’s questioning my reasons. I don’t go around broadcasting my ailments. I’m not sure what you and your friends are like but clearly not the same set up as mine. Thanks for your reply

Maureen1958 profile image
Maureen1958 in reply toMegamini27

FRreedman is a bloke! They are different to us!

HakkaBuster profile image
HakkaBuster in reply toMaureen1958

I am a bloke (new to here) and feel that Megamini shouldn’t have to hide the reason she is not going out with friends. If everytime I ask my friend to go for a curry or any other social they said “not for me” with no explanation I would assume they were avoiding me. I don’t see the need to hide the reason you can’t go have some good time with friend and so Megamini did what I do.

That said, I think a lof of people have IBS/D these days but with different level of severity. Maybe these people have a mild version?

Megamini27 profile image
Megamini27 in reply toHakkaBuster

Thank you HakkaBuster! 💗 X

Maureen1958 profile image
Maureen1958 in reply toHakkaBuster

I think you are right HakkaBuster, there are various degrees of severity with IBS and some people can have it mildly and from time to time and others can have really bad on a daily basis. And equally, everyone has some kind of upset stomach from time to time!

Regarding your first paragraph, I am assuming you are a youngish man, FRreedman is in his 60's (as am I), you are a different bred of men now! 🙂

Suecoo66 profile image
Suecoo66 in reply toFRreedman

Doesn't sound to me like they are empathising at all! And why shouldn't she be able to say what her ailments are? If you also have a bowel condition it doesn't sound like you have much empathy for other at all.

Maureen1958 profile image
Maureen1958 in reply toSuecoo66

FRreedman is a bloke!

Megamini27 profile image
Megamini27 in reply toSuecoo66

Thank you 💗

3443Ness profile image
3443Ness

I've been ill since January so u can be ill that long with IBS I have my good days as well as the bad ones. I know how hard it is to arrange to meet with friends but if there ur friends they should understand ur situation better but like I always say if u don't suffer from IBS u truly don't understand how it makes us feel. Ur friends might just think u r trying to get out of going places with them I usually just say I carnt go now as it's easier but just remember we r always here for a rant anytime

Megamini27 profile image
Megamini27 in reply to3443Ness

Aww this means a lot. Thank you. I genuinely feel like they don’t understand. Or maybe they’re lucky and if they do have IBS genuinely, they get it milder than me at the moment. I just feel like crap all the time. But you’ll get that. I hope you too are doing better very soon x and thank you for such a kind response xx

3443Ness profile image
3443Ness in reply toMegamini27

I've had IBS for 28 years but since January this has been as bad as I have ever had it I've had to take time off work and carnt plan anything as I always end up letting people down. I also have bad cramping and middle back pain with mine and always bloated I always look 9months pregnant 😂. Waiting for an ultra scan on my pancreas to make sure it's working properly the gastroenterologist gave me medication as he said it could be BAM where the bile acid is leaking into my stomach and causing the constant diarrhoea. I now how it's making u feel like crap all the time as I have most days like that but whenever u feel low just talking on here really helps as u know ur not alone hope u start feeling better soon here if u ever need to talk x

Edgar77 profile image
Edgar77 in reply to3443Ness

I have no friends left. I went through a bad spell. Lasted over a year! I never wanted to go anywhere. I guess they were fair weather friends. Now gluten free, lactose free and fodmap fruit and veg. Much better but now go out alone. Even my husband has turned his back on me. We live separate lives now. My family don't even ask me out anymore. It is hurtful to find out later what a good time they had without me.

Megamini27 profile image
Megamini27 in reply toEdgar77

This is so very sad. I am so sorry to hear that. It’s amazing when you think how much IBS can impact on literally everything key in your life. You sound like a very strong resilient person to me x We should all meet up and go out for an IBS safe good night out 😊💜 sending you love X

3443Ness profile image
3443Ness in reply toEdgar77

So sorry to hear that I am the same usually go shopping and out alone as can never plan anything as always have to let friends and family down. I would say I have only 1 true friend left we don't see each other often but we make an effort afew times a year but since covid I haven't seen her but we have arranged to meet in afew weeks time she knows I may have to cancel at short notice but she is always supportive if I do and then we usually try making another day. My husband is supportive and my children r we don't do as much as we use to but when I'm having a good day we try and make the most of it I'm so sorry it has ruined ur marriage I have read lots of people who's marriages have broken down due to IBS. Just remember we r always here to help and support each other through our bad days I may not always get back straight away but will always answer u back take care if ur self x

Viklou profile image
Viklou

If there were real friends they would understand, some days you can others you can't. IBS affects everyone differently. I've learnt to say no and not feel bad about it. You get to a point that you need to rest and look after yourself xxx

Megamini27 profile image
Megamini27

Thank you. This is all new to me so I’m gonna have to learn that big about getting good at saying no! We are a small group of friends who tend to make plans every other weekend with all our other halves so it’s strange for me (to them) to suddenly start not wanting to attend things. That’s the reason why I mentioned to them my new diagnosis. Apparently everyone in the group has it! 😂 I’m just finding it all quite hard. Especially when I’m in pain. I’m probably being grumpy. So thank you for such a kind reply xxx

oldfog profile image
oldfog in reply toMegamini27

Just throwing this out there - have you tried a low FODMAP, gluten free and lactose free diet? I did and it changed my life :-)

Having said that, even just having to avoid so many foods makes socialising difficult - if it involves eating :-/ My family and friends all know that I definitely cannot eat onions or garlic. So when they invite me for lunch or an evening meal, they make sure they cook plain food like a roast dinner or steak or chops with plain rice or potatoes and some peas or beans. If it's going to be sandwiches, I have been taking my own gluten free bread. But I have recently discovered that I can eat ordinary bread again now with no dire consequences:-)

Megamini27 profile image
Megamini27 in reply tooldfog

Excellent news! I’m glad your ability to eat bread has resumed. I have to say, I’m a sucker for carbs. Bread is my Achilles so giving it up is tough!

I’ve started a bit of FODMAP- I’ve made some sensible swaps and taken stuff out altogether. So no caffeine/ alcohol/ sugary stuff/ wheat etc. I’ve been making some gluten free choices and do seem to have cleared a lot of the pain days! I was tempted to three short bread biscuits a client brought in today and within a few hours I was totally regretting it!

I’m a FODMAP newbie so I’m still playing with what to have and what not to have to understand what could be a trigger. It’s like a full time job isn’t it!! I could do with a book or something to help guide me. I’m a little lost with it all if I’m honest 😞 X

oldfog profile image
oldfog in reply toMegamini27

Hi, do a Google search for FODMAP. There are some free apps that you can get for your mobile and I found the food lists on ibsdiet.org very helpful ;-)

Maureen1958 profile image
Maureen1958

All my friends ran for the hills years ago. But that just means they weren't real friends. I can do without them. I have a wonderful husband, that's all I need. I was hoping to meet up with my son and his fiancee today (haven't seen them in the flesh for about a year) but somehow I don't think it's going to happen. Luckily they understand.

Megamini27 profile image
Megamini27 in reply toMaureen1958

Sorry to hear that Maureen. I hope you get to see them very soon.

I guess I’m ok with missing out on stuff now. I’m so fed up that I can’t be bothered anyway. Pjs a peppermint tea and my phone off sounds quite appealing to be honest! It’s the casting doubt but that irked me. As though to say ‘well we have it and we would all be ok’. Makes me think if they do actually have it or whether it’s a term doctor throw around when they’re not quite sure of the symptoms. None have any medication and we are really close, so I feel I’d know if they’d ever had a flare up. The tell me all their other ailments! I wish they could feel what I feel like right now.

Anyway. Cosy night it is. And I hope whatever you end up doing today, your feeling better soon xx

Oh00No profile image
Oh00No in reply toMaureen1958

Hi Maureen, really sorry you have had to miss seeing your son & his fiancee. I have had IBS for a number of years but recently it has got worse & I have had to cancel seeing friends or doing things I have looked forward to. The last two Christmas days I have spent the mornings constantly in the loo, & so now I am dreading that happening again this year, especially as our grown up children haven't been to our house for over a year & this is hopefully going to be our first Christmas together for years. I hope you can see your family for Christmas :) All the best, Xx

Maureen1958 profile image
Maureen1958 in reply toOh00No

Thank you.

Daz1113 profile image
Daz1113

Tell me about it haha the amount of people who say. It’s only IBS and you just have to learn to manage it 🤦‍♂️ Or when they also say yeah av got IBS then proceed to eat a Chinese meal with all the trimmings. I once said I’d love your IBS haha anyway sorry to hear of your suffering. But it’s an absolute awful thing to have.

Megamini27 profile image
Megamini27 in reply toDaz1113

I’d love that type too Daz!! X

Gina130 profile image
Gina130

Everyone who has ibs has different severity. I can have a flare that lasts weeks and I just want to stay at home. I have a 4 year old so I just have to fight through it. Don’t worry about what other people say. True friends would support you no matter what. You deal with your symptoms as you see fit not how everyone else sees fit.

Megamini27 profile image
Megamini27 in reply toGina130

Thank you Gina x hope your well x

Honey-Bear123 profile image
Honey-Bear123

I sympathize with you 😩 I’ve had IBS for 34 years after a botched up gall bladder removal. I still get this all the time. So most of the time I just make excuses and say I can’t make it that day/night and yes I’m also fed up even after all these years of people saying yeah I got that. But dont have it as severe as my flare ups. So i really do get you. I agreed to be put on low dose antidepressant over 20 years ago as it helps calm the gut and helps you cope with all the flare ups so unless it’s an acute flare up I have the yes i will go to the Ball! attitude. Kolantigan helps me so much but now not available until Jan 2022. Just a few suggestions from an IBS old timer.‘I wish you all the very best and hope your bad flare ups soon settle 😊

Megamini27 profile image
Megamini27 in reply toHoney-Bear123

Aww thank you Honey Bear! I am more than happy to take any suggestions so much appreciated! I’m just starting out on my journey so want to learn as much as I can from those who know better! This forum is great. It’s brilliant to connect with others who genuinely do understand! Hoping your ok 😊x

bktk profile image
bktk

People don't understand IBS unless they had it themselves, they think it just a tumny ache which will go away when you have a regular motion. Well let's hope karma don't hit them. Yours friends must miss your company but do what's best for you. True friend will be there for you. Best wishes

Megamini27 profile image
Megamini27 in reply tobktk

Aww thank you. Totally agree with that. I certainly have an empathy now that I didn’t understand before with those who have IBS. It’s great to have a place like this to offload and chat to others who understand x hoping all is ok with you today x

Oxygen_guy profile image
Oxygen_guy

Hi The problem with IBS is that it can effect people in different ways. I'm the same. I can be bad Where I feel like I want a curry Especially if its on offer somewhere and I buy it and then the day after I regret eating it bcoz it flares my IBS up again. You get heartburn and indigestion and then the bad stomach cramps. You just can't win. So your friends say they have IBS too,BUT as it effects people in different ways they may not have it as bad as you and I. It just depends on what we eat, Some people are ok eating spicy/greasy foods but you and me then no we can't. When people say I have IBS. But how does it effect them in life? There's times when I think on a very bad day is it something more serious or is it just a day when you feel really feel like crap and the pain is so unbearable. But then another day you can be eating n eating n nothing no pain,no discomfort. It effects people in different ways.Your friends might have it mild, Where we get it really bad.

Megamini27 profile image
Megamini27 in reply toOxygen_guy

Yep. Makes total sense. I guess I just hoped they’d understand how it can effect people to different degrees. And be thankful they have the lesser end of the spectrum! Today is a good day. I’ve even had breakfast! Thanks for your reply. It’s good to have some perspective. Hoping your ok x

Suecoo66 profile image
Suecoo66

I feel your pain, I've known people to say oh I had that once I was constipated for a few days.I think part of the issue is that people see their GP and get diagnosed with IBS at the drop of a hat. I personally don't agree with diagnosing IBS based on symptoms alone due to there being several conditions that have very similar symptoms.

Megamini27 profile image
Megamini27 in reply toSuecoo66

If only it were a day or two of constipation for all of us 😂 x

Suecoo66 profile image
Suecoo66 in reply toMegamini27

33yrs later I totally agree!

BlackIsleGirl profile image
BlackIsleGirl

I understand what you're saying and it does feel like you're being treated like you're making this up when people who've never shown a single symptom sudden say "oh I've got that!" The problem is that IBS is different for everyone and it's been a fashionable self-diagnoses for wind, stomach upsets and people who eat a really bad diet.

Honestly, my response (for those that I suspect are in that group) is "I'm so sorry you've got this dreadful disease too. When did you get a diagnoses?/How did you cope with the colonoscopy?/How did you manage the colonoscopy prep? " if they can't give real answers like "my GP diagnosed me last year/it was awful/okay/embarrassing/the prep was disgusting" then they've most likely self-diagnosed and you can pretty much ignore their opinions. I'm not saying they've not got a mild form of IBS but if they have it then they'd have done enough research to know how variable and horrific IBS can be. For example I have 2 friends who also have diagnosed IBS. I control with diet and meds when I'm desperate but one friend controls with daily meds and the other takes meds only when she has a flare up and that's not something that happens very often.

I know it's a well worn saying but you live your truth and let other people have whatever opinion they want to have because it doesn't actually affect the reality that you live. And you can rant on here any time you want, we're happy to listen

EOLHPC profile image
EOLHPC in reply toBlackIsleGirl

Well Said👏👏👏👏

Megamini27 profile image
Megamini27 in reply toBlackIsleGirl

This is just what I needed to hear! Thank you for your reply and thank you for being so understanding and kind 😊💗 hoping your okay x

Carlettejaque profile image
Carlettejaque

If your friends can eat curry then they don't have IBS!!!. I've had it for over 45 years. The last 25 have been the worst. It can ruin your life. It can ruin your career, your friendships, your social life and your relationships. Even your family might not understand. You can't travel or go on holiday. I haven't had a holiday in 40 years. I can't travel far from a toilet.

A lot of people say they have IBS when perhaps they just have an intolerance to something or they eat foods that give them a stomach aches now and then. There are of course degrees of it. Some have it mild and others have it very bad. Some suffer bloating and a feeling of knots in the stomach but can eat most things, others like you and me have to be very careful what we eat otherwise we are in agony and feel sick.

Do you follow the Low Fodmap diet? It's a good guide but there are loads of things on it that I can't eat so you still have to be careful. Are you dairy intolerant or yeast or wheat intolerant? The advice I would give is never eat oats, garlic, onions of any kind, broccoli, cabbage, peas, cauliflower or any kind of seeds, pulses, lentils etc. Don't drink alcohol or anything fizzy. And no hot spices. I can't eat any fruit. I was told not to by a dietician. Fruit goes straight through me.

If your friends invite you to eat out for something like a curry or Chinese, just tell them you can come but you can only perhaps eat the rice and you can't drink because you've been told not too for a while.

I really hope you feel better soon but limit your diet for a week or two just to let things settle.

Megamini27 profile image
Megamini27 in reply toCarlettejaque

Excellent advice thank you! I’ve started some dietary changes and it does seem to have helped. Taken out all caffeine and alcohol- wheat wherever possible and choosing gluten free options too. I do feel I’m eating literally the same things everyday! But my appetite has gone to pot so I’m not too bothered about a limited variety currently! I will certainly look at some of the changes you’ve made and see if I can strip back a bit further. Thank you for such a detailed response. Really appreciated 💗. X

Susiiscute profile image
Susiiscute

I think I know what you mean about friends trying to be helpful. I had a rant on Facebook once, when I was in agony with Pancreatitis and a friend said “Let’s have a pity party”, because she was sick with different ailments. It just totally triggered me, lol! I felt infuriated! It’s happened on several occasions. Some people always say the wrong thing! I think getting “triggered” is a mental thing that I’ve noticed in myself, which I’m trying to spot and deal with in a mindful way, to help myself, but it’s not easy.

Megamini27 profile image
Megamini27 in reply toSusiiscute

I’m very guilty of this too. I know I’m deffo more irritable at the moment because I’m so uncomfortable all the time. My patience is at an all time low! I always try and check myself before I reply but coming here is so helpful to speak to all of you guys and get some perspective. So thank you for replying to me too. Pity party…. Wow. Your friends sound as great as mine! 😂 at least we have this forum! Hoping your having a good day 😊 X

Susiiscute profile image
Susiiscute in reply toMegamini27

Haha, yes at least we can talk about ailments here! ☺️ Once I asked on Facebook if a mammogram was meant to feel like having your chest ripped off, (the operative had it on full tightness incorrectly and I nearly fainted) 🙄. Someone answered “what’s a bit of pain if it saves your life!” Grrrrr😡…So annoying! 😂 I do hope you feel better soon, it sounds horrible, I know how it feels to have a massive flare up Xxx

Megamini27 profile image
Megamini27 in reply toSusiiscute

God I hate Facebook for all those reasons. You can’t say anything!!! I’m yet to experience the lovely mammogram- I will absolutely be requesting they check the tightness level when I do go!! 😂😂 xxx

Susiiscute profile image
Susiiscute in reply toMegamini27

That was my first mammogram over 12 years ago, so don’t worry, I had one recently and they were very kind and checked the tightness and asked if it was okay for me, it was all fine. Facebook is a nightmare, another friend wrote shouty…”IT COULD SAVE YOUR LIFE” omg, lol 😂😂😂

Seventimestable profile image
Seventimestable

I think people get competitive over everything including illness ! Unfortunately the strain of competition also causes a lot of stress which isn’t good for IBS. I would try to ignore this and speak to people who are better listeners

justmyluck profile image
justmyluck

I have suffered from IBS for many years because of the trauma of losing my daughter (15 years old). my daughter (middle daughter) suffered from it too so lucky for me she was able to give me some advice as she was going through all the symptoms as I did. What she advised was to cut gluten, dairy and sugar and re-examine what I eat by elimination - meaning eat one thing at a time and see if it bothers me (probiotics don't help at all). It did help and now I know what not to eat. I am a massage therapist/esthetician/reflexologist and it's very difficult to "hold it" even with the change of diet sometimes, so what I do is distract my mind if I am in a no-talk time by meditating while working on a client or repeating a mantra over and over again, counting sheep or whatever it takes to distract my mind and keep it away from thinking about the IBS. I make sure that before leaving my house, I empty my bowles so at least I am good for the ride. I don't drive with other people - I take my car and go to the places they want to go providing there is access to a bathroom. If I have to stop in the middle of a long drive which I do once a week (3 1/2 hours each way), I either find a gas station/coffee shop or somewhere with access to a bathroom also I always carry in my car a package of disposable big coffee cups in case I am in trouble and there is no bathroom - you can always go off the road and do what you have to do to survive. My family and friends are sympathetic to my condition so they understand if I have to stop and go to the bathroom and they will never tell me what I am able to eat or not - I just choose what I want/can eat when and if I go with them somewhere. They wouldn't be my friends if they didn't have sympathy for my condition so if your friends make light of it - ditch them - they are not your real friends.

Megamini27 profile image
Megamini27 in reply tojustmyluck

Firstly I am so sorry to read your story and about your daughter. Sending love x

Secondly, thank you so much for taking the time to reply and give such helpful advice. As a total newbie, I am keen to learn and take on as much information from those who know better! So it’s really genuinely appreciated. Thank you. Hope your ok today X

justmyluck profile image
justmyluck in reply toMegamini27

You're welcome honey, also - try not to eat fruits first thing in the morning - that's a total no no. eat them later. Also something to help with your "leaky gut" is bone broth: buy a few packages of organic chicken and beef bones from a healthfood store so that way no antibiotics or hormones are added, if you buy a few packages you won't have to go often -= whatever works for your budget - take 3 bones of chicken, 2 bones of beef and put them in a big stockpot, add 2 table spoons of apple cider vinegar (it breaks down the collagen so that your body can absorb it), if you want add some veggies (carrots, celery, onion) for taste, salt and pepper and fill the pot with spring water to the top. Bring to a boil and, skim the top so there is no fat left floating, then lower the heat to simmer and leave it to cook for 12 hours. it takes just a few minutes to make and you can forget about the pot for 12 hours - do it at night so it's ready in the morning or do it in the morning so it's ready at night. When it's done - pour into glass bottles - I get 5 glass bottles from it with 2 1/2 cups each - and when it's cooled down - put in the fridge - every morning warm up one cup and drink it. It will clean your liver, your kidneys, it will boost your immune system, it will beautify your skin, nails, hair and heal your gut. trust me - people notice my bright skin since I am doing this (the past 3 months), it cleans the system and helps the gut heal.

Megamini27 profile image
Megamini27 in reply tojustmyluck

** starts to type as getting coat on to run to nearest health food shop!**

Thank you so much! I am 100% gonna try this today. An ‘inside clean’ sounds like exactly what I need!!!! I will follow your instructions to the letter and will let you know how it goes! Feel slightly excited! Xxx

Boxroad profile image
Boxroad

Sorry your friends are like that, I totally agree with you, I have had IBS for over 30 years and the amount of people I have come across who say of it’s just an upset stomach we all get those, it’s even worse when it’s family and they say they have it, then she turn up with foods she say I should eat like things that are very high on the FODMAP diet. Or they say just take some gaviscon that works with their IBS. I tend to keep away from these fools to be honest.

Maureen I am a bloke by the way and I think males and females suffer the same amount as each other. most blokes think they have to have a stiff upper lip, when I was at work my boss would not give me any support for my IBS he would say just work it off.. he would be very sympathetic towards females who had a head ache or other problems.

Maureen1958 profile image
Maureen1958 in reply toBoxroad

Yes, stiff upper lip, especially years ago. I'm 5 years older than you, so I remember that! I didn't get any preferential treatment when I worked though, but I was not a girly girl, I generally hung out with the guys. The hardest bit of my life was trying to cope with an ADHD (Attention Deficit Hyperactivity Disorder) son and IBS together, that really was a challenge. But we came out the other end unscathed (well he did anyway). 🙂

Boxroad profile image
Boxroad in reply toMaureen1958

I find I look at other people now and think to myself what does it feel like just to feel well and have a day without some sort of pain. I believe my issues started after I suffered a crushing accident at work it broke all my ribs and took three weeks before the bruise came out, they wanted to keep me in hospital but I discharged myself as my wife was due to give birth three days later, I often think if I had stayed in hospital would my life have been any better. Sorry to hear about your son, does he have any issues now? My daughter has slight autism, it slowed her down a bit at school, she is now 32 and just finishing her exams that she struggled with at school. My wife has been a star where my health is concerned as she used to be a nurse but now teaches NVQ care in Ipswich Colchester and Southend hospitals.

Maureen1958 profile image
Maureen1958 in reply toBoxroad

Yes, it's easy to look back and think if only I had done that but we do what we thinks is best at the time. We can't turn the clock back unfortunately.

Our son was high functioning so did very well in the end. Managed to get him on concerta (a slow release ritalin at the end of primary school). It was brilliant, it calmed him down enough so he could see his behaviour was not "normal" and he could take a step back and learn how he should behave in certain situations. I was told in the last few weeks of primary school that he never sat down in the classroom, he just wandered around the class bothering the other children. I don't know why anyone had not told me this before. I had told them if there was any problem at all at school to let me know. So I had to rush around trying to get some medication before he started at his secondary school (which was very strict)! His head teacher (who I think was ADHD) had zero tolerance towards children with ADHD, so I just told his form teacher (who thankfully had friend with an ADHD lad) and he kept an eye on him for us. After a couple of years my son asked if he could come off the medication (he didn't take it weekends or holidays - our idea because we didn't want to lose our Ashley). So I spoke to his form teacher and he said he would keep and eye on him for me. When we got the next report he said how well Ashley was doing without the medication and how his true character was starting to come through. Ashley went on to get a PhD in Quantum Physics.

Leo70 profile image
Leo70

Have you had your IBS diagnosed by a Gastroenterologist or is it from the GP? I would be inclined to go back to the doctor as clearly it is causing you a lot of distress and is affecting your life and there are medications and proper dietary recommendations to help these days.

Megamini27 profile image
Megamini27 in reply toLeo70

Hi Leo. Thanks for your kind reply x It’s from the GP but had lots of other tests to do the ‘rule it out’ stuff. I have been prescribed medication and have lots of OTC stuff here too. It does help but I think from what I am reading, sometimes it doesn’t matter what you do, a flare up is a flare up and you have to just let it do it’s worst until it’s over. It seems to be settling a little now. Touch wood! Hope your ok today X

Leo70 profile image
Leo70 in reply toLeo70

I have suffered with IBS all my life, but realise there are certain foods (as per the FODMAPs) which irritate me now I am older. My problem is in the main excess gas which I find utterly miserable at times and makes me worry when going out socially, especially in the evenings, and limits me in this respect. I can see from looking at all the posts that others suffer far more as I can control my bowels in other respects by watching what I eat and not eating an excess of certain fruits and vegetables. I have started eating organic porridge every day recently, and find that very helpful rather than eating wheat based cereals. Eating bananas and rice and bland foods is supposed to be helpful for diarrhoea flare ups. I realise from looking at the various posts that people do suffer far more than myself and I have the greatest sympathy as it really is a horrible condition to live with. I saw a programme on TV recently where they went into IBS in great depth and hypnotherapy has apparently been found to be very successful if the IBS is triggered by stress, which often is my problem.

Megamini27 profile image
Megamini27 in reply toLeo70

Some really helpful advice in here thank you Leo. My issues with gas are that it’s trapped. I struggle to get it out at all. Instead I just chase around this bubble and try and massage it out. Sometimes I feel like it ‘rests’ under my breast bone and it even makes sitting uncomfortable. Like a pressure. I guess we are all so different in our presentations. But I’m taking on board everyone’s advice so that hopefully I can find something that works well for me from all of you more ‘travelled’ IBS’ers 😊 x

Leo70 profile image
Leo70 in reply toMegamini27

Just wanted to say that this morning on the BBC website there is an interesting article about IBS and some new research about what may cause it and some useful advice - I happened upon it by chance. The link is bbc.co.uk/news/health-57821848

Megamini27 profile image
Megamini27 in reply toLeo70

Bit of bedtime reading 😊 thank you x

Sparrow58 profile image
Sparrow58

I have just read this article and this is what they put ''IBS is thought to affect about one in 10 people and can cause distressing abdominal pain, bloating and bouts of constipation, diarrhoea or both.'' When you read this is sounds so trivial. I am sure everyone gets a dodgy tummy every now and again and have the above symptoms. They then think it must be IBS. This is only the basic symptoms and doesn't reflect on what day to day life is like with IBS.

RodC profile image
RodC

Hi Megamini, So sorry to hear you are not well with this terrible illness.

I haven't been well for about 5 years. Don't know what is wrong with me. Have had all the tests but come back negative. I do tend to feel that my better days are when I am not as stressed so really want to give meditating a go.

I just want to say reading your posts you sound like such an amazing person.

So hope you can get on top of this condition as fast as possible!

Rod.

Megamini27 profile image
Megamini27 in reply toRodC

Hi Rod

What a lovely message to wake up to this morning. Thank you x

I’m sorry to hear you’ve been unwell for such a long time too. Way longer than me as well- you too must be an amazing person 😊

I would deffo try to meditation. Someone in an earlier reply on here muted that’s what they do. I do some yoga (they actually do flows for IBS) and it helps massively. I find the day is much better GI wise after I’ve done just 45mins.

Let me know how you get on? And wishing you a restful (hopefully comfortable) Sunday 💜 X

RodC profile image
RodC in reply toMegamini27

Hi Megamini,

So sorry it took so long to get back to you.

I only just checked my emails.

Thank you so much for your kindness & support.

I am so glad to hear your yoga helps you :) I will have to give it a go. I have heard so many great reports about it.

I have been so tired lately. I don't eat real well. Work gets in the way of me cooking but I am going to see a dietitian about how I can start to eat really healthily.

I just did 10 mins on the eliptical trainer. I am going to do that every day when I get home from work. 10 mins exercise & 10 mins meditation to start with.

How was your week? So hope you had a good week regarding your health issues.

Did you try anything different this week?

Hope you have had a great weekend!

Rod.

Sciamachy profile image
Sciamachy

Hi Megamini27,

I'm sorry this flare up is lasting for such a long time; 3 months must really, really suck. I hope all that you're doing to calm the flare up pays off soon (don't stress too much about it though <3). I've written some of my thoughts below in answer to your post, but realise they may come across as harsh or ridiculing; I mean my post to be neither- just an honest piece of advice from a person who has trouble with communication and deciphering texts. I hope it ends up helping your friendships in some way.

...

This seems like a lot of misunderstanding and miscommunication has happened. Texting doesn't really allow for tone to be received as authentically as it was sent, so this particular texting situation could be a misunderstanding on both ends; your friends might really just be concerned that your current bout of symptoms might be a sign that something worse may be going on (I am not saying there is; please do not receive this as me advising you to get further help) and are urging you to seek some further help because of this, however, they may have communicated their concern in texts that read as snarky and ignorant. It may also be that the messages were meant to be snarky, meaning that you are understanding their texts as they were meant to be understood. The only way to really know is to sit down with them when your symptoms improve, and talk with them in person (maybe over facetime or maybe at a public place near to your house/ flat- if you're comfortable with that, of course) and talk about everything you raised in your post above (like why they have never talked about their experiences with IBS before, or why they have never said they couldn't go to something because of IBS [they may have actually had to do this, but may not have stated IBS as the reason]). I just feel that a lot of communicating needs to be done between everyone involved, so that everyone involved can understand where each person is coming from. ...

Again, if that did come across as harsh, I'm sorry. I hope the flare up ends soon. Best, S.

Megamini27 profile image
Megamini27 in reply toSciamachy

Absolutely not harsh at all and very commonsensical. It’s always good to get some perspective as like I said in a post above, I’m also aware that right now, I’m tetchy, impatient and grumpy because I am feeling off. So a balanced view of this is always healthy! Thank you for taking the time to reply I really appreciate it. And I will certainly take the opportunity to have this discussion with them if and when the right time presents itself.

I hope all is well with you 😊 X

angelwings52 profile image
angelwings52

I know how you feel - people don't seem to understand that IBS is different for everyone and it's really difficult if socialising seems to revolve around food - and telling you that their 'IBS" isn't as bad or as much of a problem is particularly frustrating. I've lost friends as they got frustrated with me not being able to eat out or being unwell and having to cancel at short notice.

You could try explaining how IBS affects you and suggesting that you socialise without food being the focus, if they're good friends they should understand and should stop making you feel as if you're exaggerating your symptoms.

Amolicious profile image
Amolicious

I totally understand where you are coming from. My friends are very understanding, my husband and his side of the family do not get it. I have IBS, diverticular disease and severe bile acid malabsorption and have to watch what i eat. My husband compares my conditions to an "upset stomach" and doesn't realise it is constant pain, anxiety about where the nearest toilet is and even something i have ate numerous times with no issue can cause a flare up. Because I have to be careful with what i eat and i lost 3.5 stone in 2019 (i had to as i was overweight) and have maintained my weight since, i have been called anorexic, (i am a healthy weight and BMI for my age and height) "too skinny" and accused of watching what i eat because i don't want to put on weight. i hardly drink alcohol because it is a trigger for me (only do on special occasions) but also accused of being anti social because i don't want to get drunk. I am also fed up! Wish i could give them bowel prep so they can understand what a flare up is like!

crazyladyloyd profile image
crazyladyloyd

I can relate to you,I have terrible flare ups and I don't or can't eat spicy food,fart all day. Yes I get those replies of oh you will be fine when clearly I won't be fine my bey swells to me looking like I am 6m ths pregnant wish I was cos I can cope with that any day its better than having IBS for years.

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