Good morning fellow sufferers. Does anyone else have a dread/ irrational fear of going to the toilet first thing in the morning & not knowing what is going to happen? I stay in bed as long as possible to avoid having to go (unless it feels urgent) as I never know if it’s going to be a C or D bm or both & if this is the only one or am I going to be up & down to the loo like a yo yo. The worst part is the pain that comes afterwards ( be it a C or D bm) which lasts for the rest of the day, usually easing off by the evening. I spend most of my day curled up with a hot water bottle (even in this hot weather) on the sofa, fan going, taking numerous pain killers & listening to meditation videos on Youtube. Can anyone relate to this or am I just paranoid or maybe just mad? This is my IBS life, not really a life, just an existence. Sorry for the rant, just feeling sorry for myself when I know there are people a lot worse that me.
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Moggiedee
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plese stop worry that will only Mack it wores I no this will sound daft but I had this for 20 year been evry we’re seen that meney doctor but some one told me to try fibergell and I said no that will Mack it wores but it did help a lot hop this help you
I get the same thing and have done for ages now. I always feel a bit ominous about the morning. My IBS isn't so bad sometimes, but it's unpredictable so I never quite know what to expect. Even when I have good times, I feel ominous because nothing is certain for that day until after the loo visit.
I NEVER wake up feeling light like I used to...stretch, feel okay, get ready for the day. I always feel slightly threatened. I miss those old days a lot.
I am mostly very lucky though because if I get any discomfort bordering on pain it goes after a bm. Well 99% of the time so far anyway. But that's not always typical with IBS. Some people get pain after.
That's exactly how i feel every day Luisa22. I never look forward to the day ahead. IBS has forced me to give up so much including my allotment & my car because of the uncertainty & dread of what might happen when I'm out. I've had IBS in one form or another for about 30 years so I should be used to it by now but it's the pain after a BM which seems to be getting worse lately that gets me down.
It's sad that you had to give up your car and especially your allotment. I always think getting close to nature and the earth can be so good for us, and the sheer creative thing about growing nice food and flowers. You must miss that so much.
You'd think that there should have been a toilet people who work the allotments could use. And some hand wash facilities. That would be a useful thing for anyone, but a lifesaver for IBS!
It depends where you live but giving up your car must hurt. I heard of someone who had IBS fitting a "commode" type thing in the back replacing one of the back seats, and some blind-things they could pull across the windows. You know, those ones with reflective silver on the outside. They had a kit also in a bag, of clean pants, aloe vera wipes, deodorant spray, and "commode" thing had a sealed lid.
That was someone in America who took lots of road trips in their car and were very scared of getting caught short on the road. That arrangement made it possible for them to travel in their car. But one would have to first find a safe pull-in place or layby and that wouldn't work so well on that Birmingham spaghetti road intersection, or on the motorway. Or in the middle of London!
Regarding the pain and how it has changed. I would think if your IBS has changed in a way that worries you or causes you more distress and makes your life much worse, it's worth reporting that to your doctor.
Hello there
i can relate to the pains after i go to the loo, sometimes it lasts five minutes and sometimes it can last for hours, i feel faint and pain down below, sometimes a feel sick too.
There have been times I recall over the past 3 years when I had these 'funny turns' after a bm in the morning. Not pain, but feeling super scared terribly shaky, restless, nauseous, and a bit lightheaded and a feeling of deep dread, when I couldn't focus on even one small nice thing. That seems to have gone away and I hope it doesn't come back. It was horrible. I think things can sometimes pass and change their ways. I wonder if that was what's called a vagus nerve spasm.
I know what you mean I also can sit on the loo 4 what appears 2 be a life time hubby pauses the TV and that makes matters worse 4 me as I can hear him tutting away and that makes matters worse 4 me as I sometimes really strain 2 go as I think being constipated is far easier than that nasty watery stuff that I can't control I even try not eating 4 days on end and that is when the dizzy spells kick in and feeling that I am going 2 be sick and I have been sick through the night but touch wood not been sick 4 ages and I am forever in a "CATCH 22" with it all the time Doctors aren't much help as they just keep giving me tablets as if I know what I am doing mind you Cyclizine does help with the sickness I tend 2 take one before bed just in case and keep an old bucket beside my bed also and with this IBS and Diverticular Disease I am still finding it hard 2 navigate my way around and DR GOOGLE is of little use as you end up with more questions than answers well that's my view any way !!!
Hi Sorry to hear of your experience. Your not alone I'm sure. Yes it's that first thing in the morning for me that defines whether it's going to be a good or bad day!! Admittedly I'm not as bad as you and whatever c or d i can normally get on with my day ,eventually. Your not paranoid I would feel that's quite normal to feel that dread. I do.
I can't plan a single day of my life. What happens with the toilet business in a morning dictates my whole day. I sit with my first cup of tea worrying about it, I'm up at 4am most mornings, even earlier when it's hot as I don't sleep well at the best of times. When I pluck up the courage to go to the toilet and get it over with, if it's ok, I can relax a bit and say right, now I can go out walking. My husband likes us to plan our walks which we like to do often, and days in advance, and I keep telling him, I can't do that and it just puts me under pressure. Life's a lot different now than it used to be, and food, well, I only eat to try and keep alive a bit longer, I don't enjoy it, never go out for a meal, it's impossible, don't visit anyone anymore because food usually comes out and I'd have to refuse which makes it difficult. People think I'm being awkward, so I just don't bother at all now. When we see family members these days, we meet up somewhere and bring a packed lunch, at least I know what's it it that way and it works better, as long as I can stick with the plan to meet up in the first place and not have to let anyone down because I'm back and forth to the toilet.My advise for what it's worth would be to get out walking as much as you possibly can. Even a short walk at first, then go for longer. Take a flask and something you know you can eat that you've prepared yourself. Get as much fresh air as you can. Once your out amongst nice natural surroundings you won't think about it and you'll start to enjoy it and it's much better than meditation videos. Curling up on the sofa might seem your only option, but it won't do you any good. Get yourself out, country walking is just wonderful if you can access it. I'm lucky as I'm only a short drive from beautiful walks and it's my worst nightmare not being able to walk. Even if I can't get there at times though, I'll go on a local walk in my area for an hour. I live on a hill too so it's a good hike back up, but really does me good. Take care
Yes I am the same gone from c to loose stool just had some antibiotics for diverticulitis seem to have less pain. Cut out the veg at the moment too. Had blood tests and stool tests waiting result. Maybe you have an infection causing the pain. See doctor for some checks. I only eat chicken and potato at the moment. Some toast. It is so hard people don’t understand it takes over your life. Hope you can get some helpx
I also have the same problem as you I had 2 colonoscopies early 20220/2021 and a colon scan early this year I had polyps removed and yes I can relate to you as now I am in constant fear and dread of each visit 2 the loo and am I going 2 make it in time I wear paper pants every day ( tena) just in case as forever being scared of doing watery nasty poop and never being able 2 control it at times even when I have 2 fart I try and do that on the loo if I can I am sorry that you feel the same way as me but until anyone gets this ( which I hope they don't!!!) they don't understand what it does 2 us I just and it makes it mission impossible 2 do very much plan anything and yes it does feel like an existence rather than trying 2 live I just wish that there was a tablet or something that you can take and make it stop a bit like the pill 2 stop babies as every day I wake up I keep thinking that maybe it has gone away only about 30 minutes 4 it 2 star all over again and I don't know about you I am scared as 2 what food or drink that you do manage 2 put into yourself and scared what will come out when you do the when it is watery you take imodiums 2 try and stop it that can make it constipated and I thought I was thought I was the only one that felt this way this IBS is very nasty indeed and I got Diverticular Disease also & not been out 4 several weeks thank goodness 4 online shopping oh I wish I could be of more help SORRY!!! but we are in the same boat !!! and wish we could get out of it
Thank you everyone for your replies. It’s reassuring to know that I’m not the only one on the planet going through this which makes me feel selfish knowing so many of you also have pain & discomfort. I manage to grow a few bits in my garden, tomatoes, beans, spinach etc which makes up for not having an allotment any more. In July after an horrendous bout of D I ended up in hospital with acute gastritis. I had scans, blood & stool tests which I was told basically ruled out IBD & diverticulitis. A few weeks later I had a less severe bout of D had more blood & stool tests ( I think these were for c-difficile) all came back “normal”. Had a visit from a lovely nurse practitioner who went through all my hospital notes in great detail, explaining things, asking questions etc, pointing out that it was good that they hadn’t found anything “nasty” in my results. She has also arranged a home visit from a dietitian later this month. It will be interesting to see if he suggests anything which I haven’t already tried. I live in hopes. All in all I mustn’t complain about the NHS service I have received over the last couple of years. Praise where praise is due. Once again thanks for your replies.
you are not feeling sorry for yourself you are just venting your anger but do try little things .i have had this sort of thing for 30 years now and it has controlled my life but please try things start with the doctor and find out the medication that is on offer i know it seems a pointless exersice i have now been on codeine phosphate fot that many years now and going to try and introduce vegetables.good luck.send me a reply if you like.i tried fybrogel it made me worse.
I'm the same too. I have to set an alarm and get up a couple of hours before I need to leave the house to deal with this. Sometimes even this isn't enough. It's very difficult to deal with and hard for others to understand. I have to be super careful what I eat even down to the night before I want to go out.You are not alone.
I am in the same boat as you more or less I haven't gone out anywhere 4 the last 6/8 weeks so thank goodness 4 online food shopping not that I eat very much as I am forever scared as 2 what goes in let alone what will come out if I do!!! I was in real pain all day yesterday no poop at all even tried forcing it 2 no avail and again today then at mid-day today awful yellow mucus stuff after what I thought was going 2 be a fart so took 2 imodiums and I am on co-codamols ( they make you constipated or can do!!!) but when you are in pain needs must I suppose even trying 2 go Doc's is mission impossible as I get myself so stressed about doing that in case I mess myself and I am now in constant pain in my bum and feels like sitting on rocks as I am on edge with it all the time I have lacto free milk and have been 4 a year or so I have a yakult 1st thing in the morning have 3 normal teas pg tips before going onto decaf ones until 3/4 pm then if I am able 2 eat gluten free pasta with brocoli I have been told kefir may help but never told how much 2 have and when I am going 2 call the diet people again 4 some help!!! again oh I don't know very much I had 2 colonoscopies early 2020 in a month of each other so no time 2 recover prep is awful as you get no control of what comes out of the other end at all I had 2 fit tests done as I got history of cancer ( Breast )but that's not the 7/8 polyps removed 1st time and 3/4 more the next time that's when they sai IBS/ Divericular Disease problem as I had spots of blood after pooping they came back clear still having problems earlier this year again had another colon scan slightly better I used 2 call it "Mr FB Tummy " not no more I won't tell you what The FB stood 4 you can guess I am sorry you are going through this as nobody should have 2 as when you are you think that are and it's a very lonely place and it is a very nasty thing 2 have and at times you feel like a cripple well hope you feel better soon my Mum died 2/97/2023 and I was a no show as it was 150 miles away so we would of needed 2 hire a car oh I don't know it is all a right old mess and no one apart from us what it's really like or can understand until they have walked a day in our shoes sorry 2 be a misery but it's just how I feel today if only these medical people could make a tablet 2 help us!!!
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