I am the only one that feels like this when you have IBS/D or Diverticular Disease that you feel restricted,house bound, prisoner, hostage 2 the toilet all the time in constant dread & fear that if you go out anywhere you may poop yourself I even have a RADAR key and card 2 carry with me all the time IF I do go out as it can attack you at any given moment and forever fearful of it all the time and never knowing what 2 eat & what not and being bogged down with people saying try this try that when all we ever want is 4 a magic tablet 2 just make it all go away once and 4 all and you can never really relax not with it all chipping away in the back ground waiting 4 it 2 rear it's ugly head all the time and you can't make plans at all well not very often well all I can say is thank goodness 4 this forum where we can air our frustrations and at times vent our anger as until anyone has walked a day in our shoes they don't understand at all and the chronic pain agony and discomfort that we get like being killed from the inside out on a daily basis and at times it feels never ending I am SORRY 4 RANTING ON !!!!! feeling sorry 4 myself today
feeling like a cripple: I am the only one that... - IBS Network
feeling like a cripple
Unfortunately crap happen for us! I don't think you ever get over the anxiety that builds with IBS. The best we can hope for is to limit our symptoms as best we can. No doubt you will continue to get the try this advice which usually turns out to be simple fixes for upset stomachs and not IBS. If there is a fix for IBS a lot of us would not be here. As I understand it 20% of the population have stomach complaints, so we are not alone.
Feel better and keep trying to control it.
Cheers
I really feel for you. I've had years of IBSD and Diverticular disease. Absolutely worn down with the worry about going out, not being able to join in with things, plan things. The dread of being caught out every time I step outside the house. Like you say, people saying do this, do that as though there is an easy solution or we might not have had the wits to try things. Tried everything I can think of to manage these horrible conditions. Feel so very alone. Only places like on here that people talk about it. A really bad day yesterday. Maybe one day medical science will be able to help us.
I feel for you bungi1961 but you rant away on here because I believe others that don’t live with Ibs C/D or Diverticular disease can never fully understand what we live with. ❤️
I know that feeling well. More bad days than good. I'm going away for couple of days next weekend with my daughter, her partner and my husband. 2 dogs, my dog has epilepsy so that can be an issue in itself when we are away, meds etc, possible seizure. I'm stressed before I go then I start panicking about me nearer time. My daughter saying we all have to go out, planning our days, steam train, meals out. To the point of were I'm now regretting going. Just want to hide away away and not go. People have so little understanding you are right. I wouldn't want them to walk in our shoes but a little compassion would go a long way.
I really do understand what you are going through I had 2 out of 3 of my older brothers having a go at me over the phone about my Mum in her last few weeks of her life and me being unable 2 go 2 her funeral well she did leave 150 mile away and they said 2 me Oh there are toilets in the service stations on the motorway but IBS won't wait 4 anyone after all we don't have a car so would have 2 hire one as it would of been bad enough in our own car ETC and I have been trying 2 go there for the last 3/4 years as if I don't feel GUILTY about it as it is as you know only 2 well how bad things can get 4 people like us the only one that has tried to understand was my big sister and yes I do know people are worse than us but when the days are bad I think we have the right 2 be selfish as some days it makes you feel like a cripple so don't be so hard on yourself OK !!!
I can relate to that, been a driver since 1974, a mechanic and even drove to Vienna and back in the eighties from England via hovercraft. Got my new 70 licence, and just bought a superb like new Jaguar auto XF. But along with my hip problem, I have not really gone anywhere in it, since I last drove in 2019, So many impatient drivers, who unlike me just want dwadle for a ride out, I feel pressured into behaving like there's no Tommorow, which makes me nervous and can start my IBS off. Supposed to be going to see my wife's brother in Islington, a 230 mile trip from North West, but just thinking of trying to drive that far and negotiate London and get charged for doing so just make me feel like staying home. Relations are sometimes u forging if you don't turn up, but they have no idea the challenges of us, and at 72 just don't have get up and go I had in the eighties.
so very sorry you are going through this bungi1961.
I’m sure that you will have tried this, but when I was really bad, Imodium syrup helped me. The GP has to prescribe it, it is a lower dose than a tablet and you can vary the amount to suit you. it gave me back some more control.
Hi l know exactly how you feel. I have ulcerative colitis (IBD) and have slowed up so much. It takes me so long to get up in the mornings with trying to get ready and visiting the loo and the pain. I’m have a flare up at present and dead worried l’m going to land back in hospital like last year when l was in and out for four months. One of The worst things it seems to have affected my legs and l find it difficult to walk. I’m getting very housebound. Still got to remember that there are far worst off poor souls out there.
Best wishes Kathleen
Hi Kathleen your post made me a bit concerned with it effecting your legs.I have had ibs c/d all my life, controlled with immodium when needed to.
Also had migraines for 20 years. Am in my 60s now. Yes ibs is life restricting and migraines a nuisance with the lost days when you can't function at all.
I now have ataxia which is a progressive neurological condition that effects balance, coordination and speech.
The ataxia started many years ago and the first symptom was loss of feelings in my legs.
It took years for an ataxia diagnosis and I wish I hadn't put up with these feelings for so long.
I have gluten ataxia, an autoimmune form brought on by eating gluten all my life.
Non coeliac gluten sensitivity is not recognised by many doctors but now avoiding gluten and dairy has reduced the ibs very significantly and the migraines have disappeared.
I don't want to worry you, but I advise speaking to your doctor and if you don't get answers then keep trying until you do.
I wish that someone had warned me of the dangers of gluten to vulnerable individuals many years ago.
Take care and look after yourself.
💯 with you..your not alone my friend..just going through the stomach cramps now my poor husband doesn't know what to do..I'm not eating properly I've lost weight but I'm scared every time I eat the pain comes 😭
Sorry I haven't replied sooner well husband's never know what 2 do as they just look on helpless and there is nothing they can do !!! well until people with this IBS/Diverticular Disease no one does not even the medical people I don't eat right also as I never really know what 2 this week I have eaten the same as I did last week only 4 my tummy 2 react different 2 the stuff this week I don't know about you but just when I think I am getting somewhere the thing decides different it's a no win situation if only they could make a one size fits all tablet/pill I'd be 1st in line and it's bad enough having IBS ETC now I got the onset of macular degeneration so I may not be able 2 vent things on this forum 4 much longer!!!
Sending love.. its silly but it helps to know I'm not alone x
Husbands or any one else really understands just how bad this NASTY stuff is and just feeling like a cripple with it how we feel as when you have a fairly good ( ish ) day you are sat on a knife edge waiting 4 it 2 attack you all over again they go on about cancer/dietabetics on the TV even water aid & donkey's but never anything about IBS or Diverticular Disease as if people like us are completely ignored and yes it is a very lonely isolated place 2 be at least we have some kind of help on forums like this on The WWW
I have both IBS and diverticular, my symptoms vary so much never know what is playing up. Unfortunately diverticua even if not am immediate flare still causes me windy episodes and grumbly niggling noises. I have arthrtic hip which makes any real exersise hard, which I'm sure adds to the wind problem. With the daft cost of grocery have to sometimes take stuff that I can afford and what's not good for me. Wife moans cos we spend so much, she can literally what she likes, but I can't meaning, we tend to eat seperate meals. So grocery buying I'm fed up trying get the better quality stuff. Never had much problem with tummy if I buy M&S. But just can't afford their prices every week. Which means Asda rubbish from round the corner. I take buscapam try and stop the colicky spasms, sometimes helps, sometimes annoyingly takes days to get relief. Do hope you feel better soon👍👍
I know just how you feel it's never ending my hubby can also eat what he likes and I find watching these people on TV makes me jealous thinking they can eat what they darn well like we also eat different meals as when I try 2 cook 4 him he doesn't eat it and that makes me cross and it's only 11.30am and I have been on and off the toilet never knowing what will come out mostly wees and being a woman got 2 use loo paper each time and feels like i've been cit with a knife tummy grumbling I think what are hunger pangs and scared as 2 what 2 eat again as I am scared of what will come out of me when I do and being like this the different foods I eat are more costly than the other stuff and I have only been out of bed since 7.30am and feels like I have run a big workout as being on edge with it all the time it's draining me mentally I also take those Buscopans that appear 2 help 4 a short period of time so end up drinking de-caf teas with lacto-free milk been on that 4 over a year and have a yakult 1st thing in the morning oh how I would love 2 go back 2 being able 2 eat what I like again if only they could come up with a cure!!!!
Thank you yes every reply helps me im not alone xx
We have this forum we understand ❤️
seems we share each other pains and spouses 
I like my milk, I have a good cereal every morning. No wheat, mostly rice crispies with kellogs Crunchy cornflakes, Big believer in calcium to try keep bones in fair shape, my problem is loss of cartridge from hip joint and got wear and wear on thumb nuckles, so painful sometimes, although i keep away from a lot dairy, like ice cream and sickly desserts. I too miss my days when I was very active 2006 -11. Created a great huge garden dug a large pond full of frogs and my Koi carp if I could keep the darn cats away, concreted slabs a bit far away for the greenhouse where I grew my cucumbers, and Tomato plants, made a large rabbit hutch with a run. Since 11 and up to now, Im covered in arthritis, and really P****** off I struggle with any shopping I have to put on my walker. use mobility scooter, (what would I do without that?)...I love my tea, Im not sure decaf is good, ?? Tea is a very good antioxidant. I always get insanely tired when anything tummy related crops up. read your bio and followed you👍, sorry you had problems with other facets of the tummy. keep in touch👍
Sounds lovely.. well done for that just keep going 👏 👍 xxx
Boy do all you folk sound just like me,it seems I’ve nothing to add really but I really do empathise with you.
I was diagnosed with IBS about 10-12yrs ago,which started with just a discomfort,but as times gone on the pain has increased,and it seems the more I go to the toilet the worse the pain gets. Now I’ve lived with this all this time,but not flares like you talk about,constant so gradually I stopped going anywhere. Now about 2 months ago I was told I’ve got the start of Divercular to which I can’t tell the difference but the pain has definitely got more unbearable.
Now 3 days ago,I was constipated and like most of you I try to deal with it through food. So I had 3 prunes which didn’t work until Friday then I felt quite ill,on the night when I went to bed,I lay down and the room was spinning so my hubby tried to pull me up,but it was like I had a 100lb weight on me. So I tried sitting up and gradually sliding down. Last night the same thing but not quite so bad. But every time I stand up to walk I feel like something pulling me to one side,so I am now getting worried,my hubby wants me to go to the hospital,but I don’t want to go in. Going off my story a bit,I really don’t understand Diverculer/ Diverculitius .so I’m at a loss.
Sorry I went on a bit,it’s just the stress all the time with these body changes.
oh hi, well diverticular is a small pouch that forms in the lower intestines, normally near the sigmoid colon, they form when you get older, straining and such like can cause one . In most cases they don't give an awful lot of problems, but they do sometimes. Diverticulitis, is an infection of the little pouches. normally needs some antibiotic and maybe IV paracetamol. if you happen to land in hospital with it. Its actually a Western Disease, Asian and Chinese , African people rarely get it, because they don't eat the western Diet we do. Just shows how our processed food is causing constipation. I actually didnt know I had one. It showed up on a scan years ago in hospital when me and wife went down with community aquired Pneumonia. hope you feeling better soon
Thanks a million for that reply,you don’t know how much that has helped me understand. I have chronic stomach pain and have done for years,but the pain does now seem to be increasing. But sorry I never answered sooner.
That's very helpful thank you drax83
Ibs has been with me most of my life.It changed when a nutritional therapist advised me and I had a private blood test for reactive foods. It is expensive but very worth it taking all the worry out of what you can actually eat. It is still quite a slow process but forget the NHS they are clueless and just want to give us prescriptions that never actually worked for me. Only immodium was helpful.
All the best everyone, there is answers out there you have to look for them and try to keep positive.
Think the NHS is clueless about most things now,I also think there attitude stinks most the time,that’s just my experience of late.
Hello there, I’m in the same boat and pretty much have to deal with majority of everything you and everyone has mentioned. I’m in my early 50s, single and live on my own away from family with very few friends living nearby so feel totally isolated. I took a career break few years ago and then decided to work contract basis and travel which was great but after two years of doing that what am I now doing, stuck at home, virtually chained to the bathroom and so scared to eat as I don’t know what to eat anymore as the MO of my IBS changes from one week to the next!! My day is ruled by how my stomach behaves and therefore I too cancel plans etc. I have stopped explaining to people and basically tell them I go by on a day to day basis when making any plans. I am finding them to be all understanding which is great. It was my previous work manager though who insisted I travel from Hertfordshire to Uxbridge so M25 with no facilities on the way that caused issues and even suggested I don’t eat so I can go into work! Partway through my second contract with them I completed my assigned work early so I quit as with that and other reasons I had no energy to battle it out with her despite HR supporting me. Since then I’m hesitant to look for work again as it would mean a commute or travel abroad and it’s been over a year since I’ve not worked. This is my rant so yeah totally understand🙂.
Soo feel for you,I have my hubby but even though he can’t help he’s there for me,can’t imagine how being alone must feel. But just like you I don’t make plans I go day by day how I feel. Not a nice way to live especially at your age.
Just hope things get better for you.🍀
Thank you so much for replying. No it’s not nice as I have so much I want to do however I try keep a positive mindset and do what I can☺️.
You're not alone Pink_Lotus we're here.. keep going 💪 we've got this
Thank you so much for the encouragement. Yes we have got this!
this is a bit left field but I shall mention it for info for anyone on this post who is also Type 2 diabetic and has been on metformin for a long time. My partner is such a person and he also has diverticula disease. For years our activities were curtailed due to need to be near a toilet and feeling unwell constantly. He then read an article that pointed to long term metformin affecting the bowel. He asked his GP to half his dose (and replace with a different drug). He (and we ) haven’t looked back. Within days he was totally transformed. Still has diverticulitis flare ups but very occasionally. I know this may not be any use for most people on here but if it helps someone ???
Thank yes all advice is useful 👍
Yes I agree I’ve heard of that before. But we don’t know what medication is causing us a problem until we’ve got it.😉
I feel like a prisoner utterly depressed by lack of energy and daily excruciating bowel pains,I have ibs and scatterd diverticular over 5 year period its got worse and worse.I totaly understand you the pain from it all the time has caused bad anxiety I'm the complete opposite if what I used to be.I HATE THIS XXX
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