Its been a couple of weeks since I posted on here but after a pretty bad week with the “IBS” (awaitin colonoscopy to confirm) I thought I would post.
It seems my mental health has taken a huge hit from the ibs symptoms. My leaving the house is getting worse, I was wanting to attend somewhere this weekend that not only meant lots to me but also to the person closest to me in life. I wanted to be there to cheer them on however due to my worries and panics of being stuck in a car and the flare ups getting worse or not being able to find a toilet in time, I’ve had to make the hardest decision to not go. Its knocked any sort of “I can do this” feelings away and can feel myself slipping back into that really dark place.
I know that the anxiety can make symptoms worse but it seems the symptoms make the anxiety worse too now. I think I find it so hard that unless you are going through this or have come out the other side people do not understand. You get branded as lazy, told to just get over it or that its all in your head. Yet how can they tell you that when they are not in your body or mind?
I’m not sure what I wanted from this post but I felt like I wanted / needed to get it down somewhere as the frustration with this stomach issues are so stimatized that its hard to talk about it.
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Loulabelle1709
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I just wish I had some advice. Going through similar myself I know how lonely and isolating it can be. You end up being so unreliable and not being able to rely on yourself is so hard. I am trying to work three hours, yes just three hours a week travelling to pupils' houses to tutor, which I can only describe as an ordeal.
My sympathies are with you. I just wish I could offer hope.
Thank you for your reply. Its “comforting” to know i’m not only one feeling this way but its so upsetting knowing others are too. I hope you are getting there and its not only three hours. Its you made it three hours - thats great!
I know I can help myself with a few bits by thinking a bit more positive on days like today but when the grey cloud takes over its a bit difficult. My contast flare up that started last week had its only little flare today and its almost cemented my thoughts of not going.
My gastroenterologist told me to take Immodium (I am in the US, so name may be different in the UK) if I have to be out a lot or have a busy day. I tried it two weeks ago when I had to fly and be away for 3 days. It absolutely worked. I only took one.
It’s such a shame that this condition can take over your life! I’ve been ready to go out to events and just ended up not going because out the blue I’ve needed loo and carried on the rest of evening running to bathroom! I’ve been out at events and had to dash home!! My husband knows that certain look I give him and we just say our goodbyes very quickly and head home! I’m on holiday at the moment and from the moment I woke up to the time I arrived at the resort I thought I’d need the toilet. And I know throughout our stay it will be there constantly especially eating out so much! It just never goes away this fear that it’s going to happen at any time and it spoils so much. When it does happen I feel like I’m ruining things!! My stomach is too sensitive to use Imodium but I know people say it works really well. Mentally it’s draining living like that - I often wish I was “normal” like other people but ibs effects more people than we think! And while that doesn’t make it better for us at least we know we are not really alone xx
I has been wondering about Imodium but i can change so quickly betweem IBS D & C that I am wary it will make it painful (more than usual) for the IBS C.
Thank you for your reply - as rubbish as it is its nice to not feel alone x
I understand and feel your pain! My GP has suggested I go for CBT. I'm starting my first session tomorrow and and quite hopeful. It's not for everybody but it may be worth looking at? Good luck.
Ive seen various therapists over the years - since secondary school really - re my anxiety. Ive tried CBT, Holistic Hypnotherapy and Counselling as on top of the IBS I have a pretty severe emetophobia thats nut just phobia of being sick but all aspects.
Its crazy what the mind can do. Good luck with the CBT and do let us know how you get on x
I am reading your post and feel like I'm seeing my life on the page in front of me. My aunty has just died yesterday and the first thing I said to my husband was, I can't to go her funeral. The anxiety of the door closing and feeling trapped needing the toilet will make my bowels move and I have no control over the results !! This is every day for me although I feel relatively safe once i get to work as there are 4 toilets. It rules my life and I don't go out socialising anymore because of this so I'm feeling very lonely too. My husband knows but doesnt understand cos he's at work a lot so doesn't see the volume of toilet visits. Any advice regarding the urgency issue I've tried fodmap and Imodium but doesn't stop the eruptions when I'm anxious 😓
I was due to go to watch my niece (who i am very close with) at a huge competition this weekend and Ive had to bail out of it. It would require a 1.5 hour drive - if no traffic - and then sit around in a busy hall with no “isolated” toilets. Its so heartbreaking as nit only do I feel I have let myself down but also her. She is so understanding and is a rock for me but still, the times when the support shiuld be there I cannot.
I am so sorry to hear about your aunt. I can sympathise with the feeling trapped etc. Does your further family know about your condition? X
Im sorry to hear you missed your niece's competition. it takes over your life and so frustrating/upsetting my son and husband both 'know' but dont fully 'understand' the intricate implications as discussing toilet matters with an 18 year old lad and my non-modern husband (bless him he cant cope with open frank conversations - ostrich syndrome) is embarrassing for them they just think I am neurotic and a drama queen !! I just have to say no to most things and missing work is not an option so I have to get on with it. My biggest regret is there are no support groups in the cumbria district where I live. Jill x
I know what you mean. I gave up counting the number of times I had to cancel outings with the kids, school fêtes, etc because was feeling so bad. It is easy to get stuck in that hell hole and become increasingly isolated.
I have now recovered from chronic IBS and no longer have to go through all of that. So there is hope.
thank you Alison I will look at that article as It seems a dream to be able to say those words 'recovered from chronic IBS' as at the moment there doesnt seem to be any end to this hell. you have given me hope - glad you are much better x
You are not alone Loulabelle1709 I am going through a hellish time with my IBS & anxiety. It was bad enough before but now I'm peri-menopause(hormones all over the damn place)my anxiety has gone through the roof, which apparently is very common with perimenopause. It makes things like driving, going to the shops, attending school plays etc a terrifying experience and like you I have had to miss loads of things I really wanted to do. My poor kids are fed up with 'mam always being sick' and I feel like I am letting them down. It is making me really angry because i'll never get this time or these moments back. I have tried lots of things to combat it, including many alternative treatments, CBT, counselling etc but to no avail. I am constantly looking for something else to try as I think, for me at least, if I get the stress/anxiety under control the IBS will calm down.
The same here, so many optiobs tried. I know my anxiety etc if a huge factor for mine too however I al so know food is. I’m intolerent to various this and think I need aa full check to see if its more smaller ingrediants rather than a whole like diary etc. I used to have it under control and the flare up were more spaced about so the “amazing auntie” i used to be is no longer here. It makes you feel like the shell of the previous person you were.
Ahh bless you, its hell isn't it, you feel like you are losing yourself, its awful. I know what you mean about food though, I dont think I have any major intolerances because I have tried taking things out of my diet like milk, wheat, gluten etc but with no difference. I think like you say its perhaps smaller intolerances or things that are in certain foods that might be a problem. I am staying clear of a lot of so called healthy foods as they seem to make me worse personally(typical) & I am really scrutinising food labels for every little thing. Have you had yourself tested for intolerances? Maybe look into that as your next move and then if nothing comes from doctors tests, try eliminating things yourself to see if it makes a difference. I have something in mind to try anxiety/stress wise so I will let you know if its of any benefit. Take care & let me know how you get on x
Hi Loulabelle, (what a lovely name.) Have you tried the low FODMAP way of eating. It has stopped my diarrhea, in fact I'm constipated a bit! But it worked immediately for me and I am very strict with it. I now don't even think about it as I leave the house. If the colonoscopy hurts, tell them to stop as that is a sure sign your colon is sensitive and you have IBS. I do feel for you, i know how anxious one can become when you have to go anywhere. I used to wear incontinent pants but not any more. Good luck.
If it hurts I wouldn't ask them to stop as they could then miss signs that you have a more serious illness like IBD. I've had ulcerative colitis for nearly 20 years so I know what I'm talking about sadly!
There is no cure for ulcerative colitis, only remission. I will have a look but given every time I eat a lot of veg I get worse diarrhea and pain I'm not optimistic.
I actually used to be a strict veggie but after I got UC I had to drastically change my diet. I'm pretty sensitive to high fibre now so as well as veggies that rules out most beans and pulses too sadly.
I have had weeks where I did not leave my house with the exception of grocery store. I used to feel guilty that I could not bring myself to go to events, go on a weekend trip, enjoy life. I still have my days and even weeks that are just depressing and leaves me with too much time to think.
I am convinced that anxiety is a key factor and yes IBS can cause the anxiety and vice versa. How do we get our heads around it and enjoy things? It’s so easy for someone else to say “just do it”, “don’t think about it”. Well wouldn’t it be a perfect world if it were that easy? Who wants to be paralyzed by fear, depressed, yearn to be anywhere but stuck at home feeling like you want to just give up? This is a disease, just like cancer, it has symptoms, it is debilitating.
I know that when you wake up it is the first thing on the mind, negativity sets in immediately and it starts the precedent for the day. Depression is common with IBS as is anxiety.
I wish there were a magic wand and poof! Here is my secret.
When I wake up I tell myself “here it is”, this is it, no one can do this for me, am I going to let this control me? Nope
The negative part of the brain is much stronger than the positive so we must push that aside, it’s hard but possible. I wear a pad if I’m going somewhere close and a depends if it’s going to be longer. This gives me peace of mind. Who’s going to know besides me and if I have an accident I’ll just go home and change or find someplace where I can. I always carry a change of clothes and I don’t eat out unless I’ve had a bowel movement that morning first. I concentrate on where I am and what I’m going to do this particular day, not on the possibilities of what COULD happen, Anything COULD happen, I could get hit by lightning, a train, slip and break my neck but I’m not going to never walk just in case!
Give it a try, don’t let fear ruin your life. There’s always going to be a tomorrow, live for today. Who cares if you have a problem? You do, no one else knows, none of those people will ever see you again and if they do. So what, you are living life to your greatest ability and that most likely have their own demons!
I hope this helps even a little, I’m heading out to the beach!!!! Who cares👏👍
Feel for you, I can’t tell you how much Ibs has changed & affected my life that I don’t see my family any more (my choice) they are all sons, grandson & brother all males) I feel too embarrassed to tell them & explain why I can’t visit them in US so I stay at home alone & lead a very solitary life, used to be a fun loving outgoing person - not now. Wish I could help you but can’t seem to help myself, had this for 7 years. Live in depression & a hope that someone will come up with a cure otherwise I hope I don’t live too long. Thinking of you, it may feel like it but you are not alone even though it feels that way. I wonder if the medical profession ever read these notes of ours
That is exactly how I was feeling! I honestly could have wrote that verbatim a few weeks ago. I literally didn’t want to live because it was so dehabilitating. Please know that there is hope! I recently started the FODMAP diet and it has turned things around. Good luck!
My heart went out to you Loulabelle when I read your post.
You are right that so many people don't understand - and if they have never experienced something similar - find it so difficult.
Just remember you have lots of friends here who DO know what you are going through. We have all suffered in similar ways. And I for one know just how not only the physical aspects but the psychological ones as well can have devastating effects. Try to get help with your anxiety - if you get a feeling of being on top of it - it will make such a difference.
You're in a vicious cycle IBS makes you anxious/stressed and anxiety/stress makes IBS worse.
Have you tried hypnotherapy, meditation or mindfulness? I'd say it would do you the world of good!
I get anxiety around sickness (I probably have the same phobia as you) and I find meditation or mindfulness helpful to nip it in the bud before it gets overwhelming. I still get those waves of anxiety but have found ways to acknowledge them and calm them before they get too much.
Like I said it's a cycle that you need to find a way to break. All the best!
I know exactly how you feel. It is a viscous circle. I am exactly the same. Just had 4 really bad days. Feeling a bit better today. But I hate making arrangements to go anywhere as I know on the day I will panic and not want to go and then my IBS starts. I always have an attack of D before I go anywhere and then panic about needing the loo while I am out. I don't have any answers I am afraid but just wanted to let you know you are not alone.
Thank you all for your messages. As rubbish as it is for us all the feel like this its comforting to know we’re not alone.
The flare up thats been up and down since last sunday took a major turn yesterday and over night which has resulted in taking yet another day off work and trying to get comfortable in bed. I feel so guilty when i cannot go in but i know i need to listen to my body. Its a awaiting game for another 4 weeks until my colonoscopy and I never thought I wiuld admit this but I wish it was sooner.
I'm in your situation too, and it goes up and down. At the moment I'm in a bad way, but please know, it won't always be like this. If you do have IBS, remember that it is a collection of symptoms attributed to an unknown cause, hence why doctors call it IBS because they don't know why you're feeling that way. At that point, it's either down to you or an IBS specialist to help you figure out just why you are experiencing these symptoms, and from there you can ease them, I promise. It took me over a year by having tests and doing a lot of research by myself, and I finally know why I was experiencing IBS (I have a tortuous colon and also my intestines hate fermentable carbohydrates). I'm currently experiencing my 1st flare up in five months, whereas before I was having a flare up around 1-2 times a month (and I'm probably only feeling ill because I ate a ton of stuff I wasn't supposed to). I never thought I'd find anything that worked for me but I did. I know that you will find a combination of things that will settle your symptoms, too. I've really surprised myself at how far I've come this year, I even attend a class now and I've asked my boyfriend to take us out and I enjoyed every second. I'm feeling rubbishy right now but I know things will get better again, they always do. I know you can get better too, please hang in there. And don't be afraid to put yourself first. You are unwell and you don't know why yet and you need to do what helps you right now. This won't be forever, even if you go downhill sometimes, you will learn what your body needs and you will have more control.
Nearly a week later and I’ve been signed off work for a couple weeks by the doctors (mainly for IBS but also for my mental health with it) and been prescribed 2 different “medications” to try. Mebevrine for the spasms & pain and CosmoCol to help move this along on the C days. Has any one had these before?
I have had IBS for many years, but I was regular going to the toilet each day, usually twice in the morning, I am suffering with depression at the moment, due to lots of illness, it has totally messed my system up, I am going to the toilet several times a day, just feel the same don’t want to go any where or do much, feeling very negative, I am hoping the antidepressants will kick in soon, and that should help my IBS,
I understand where you're coming from in terms of other people not understanding. I have been feeling the same way. You're not alone. Please know that.
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my son and husband both 'know' but dont fully 'understand' the intricate implications as discussing toilet matters with an 18 year old lad and my non-modern husband (bless him he cant cope with open frank conversations - ostrich syndrome) is embarrassing for them they just think I am neurotic and a drama queen !! I just have to say no to most things and missing work is not an option so I have to get on with it. My biggest regret is there are no support groups in the cumbria district where I live. Jill x
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