I have not been diagnosed with IBS but have had almost permanent Diarrhoea for the last 5 months. Managed one GP F2F ordered some tests, nothing found but said I have Diverticulitis and was given antibiotics. Did nothing and I have had a few ‘near misses’ but today in the middle of a large supermarket my stomach turned over and my bowels just released, no controlling at all. I was mortified and in tears and luckily a female employee helped me to the staff toilets. I sobbed my heart out whilst trying to clean myself and wash out underwear and trousers and I had to walk out of the store in soaking wet trousers. I am a76 year old female with no family and live alone. This has knocked me sideways, no appointment available until 4th November. I now consider myself as housebound I do not have the courage to ever leave my home again. I live in a small community where it does not take long for things to spread I dare not show myself ever again I feel life is over. Just had to get that off. Thank you for reading.my chest before trying to sleep.
My worst fear finally happened today! - IBS Network
My worst fear finally happened today!
Oh no. That's awful.
I do know some of the folks on this site wear adult diapers. Don't know if that would help any.
How long have you been on the anti-biotics? Does the GP think that they are taking care of the problem?
For me, it took awhile & I had several had relapses. All along, diarrhea was something of a constant, unfortunately. Had to change my diet rather drastically until it got better.
I am so sorry. What a horrible experience for you! It's good that you came on here so you hopefully won't feel so alone. You can definitely get anything you like off your chest here.
So you had one stool test done? Did they check calprotectin levels in that too, (for inflammation going on)?
If you have been on the antibiotics for a few days and it's made no difference it might be best to speak to your doctor if you can by phone or a consultation. That's not easy nowadays I know. But they should be able to give you some more help and suggestions and medications that might help control the diarrhea.
I feel for you, Sending you a hug.
First, buy Tena, or some other brand of absorbent underpants. Second, you are far from alone. If you can try to see a colo rectal surgeon. This problem can also be caused by weak sphincter muscles. They can weaken as you get older. In many cases physical therapy to strengthen the muscles can help. There are also some other treatments, both dietary and surgical. The main thing is that you must try to understand that you are far from alone. It is easy to think you are alone because people tend to not talk about this type of problem, but I promise that you are not alone. I have a similar problem and will be starting PT for it in a week.
Wear the absorbent pants and go out. You can start by just staying in the immediate vicinity of your house. If you do not do this you will become housebound and then you will have a whole other problem. You don't want to live your life never leaving your house. Along with the absorbent pants, carry a small bag with another pair of absorbent underpants, another pair of trousers, a facecloth or small towel for cleaning up and a plastic bag to put the soiled items in. Wearing the absorbent underpants will give you time to find a restroom.
I understand you have had a terrible shock. This happened to me too, so I know how bad you feel. The bad feeling will lessen over the next few days and you will be able to take more control and begin to live your life again. PS absorbent underpants can be ordered from Amazon and you can request a plain wrapping. You will be OK. You can PM me if you need to.
Also, you should be under the care of a gastroenterologist. In addition to what I wrote above, there are also medications that control diarrhea, such as Immodium, which works very well. Also, check that you are not lactose intolerant.
You’ve got great replies, am so glad! Am hugely feeling for you & v much relating! When I began to realise this was bound to happen to me, I saw a poster in my GP Surgery saying we can self-refer to our local NHS Bowel & Bladder clinic for advice & supplies re Incontinence. So I went online, got any appt & went in to see a lovely nurse who sorted me out. If you’re in the U.K., maybe you’d be able to ask at your GP surgery whether your local NHS has a B&B clinic you can get help from? 💞💞💞💞
I'm so sorry you experienced that! It must have been so traumatic for you. My heart goes out to you. As others have said, you are certainly not alone. I've not had a public accident yet but have had a couple of minor ones at home and it is always a worry. But remember that it is a physical problem and not anything to do with your character or your worth as a person, so try not to let it completely ruin your life or be overtaken by shame. You've received some wonderful advice from others here and I hope you will be able to move forward with that. You will be okay.
have you been tested for sibo? That could be the cause, I am struggling with bad diarrhoea again it had gotten to the stage where it ok one day then over the next 3-4 days it starts to turn green colour then it very watery diarrhoea then back to normal and on it goes.
Most people will be very kind and sympathetic towards you as its not uncommon and those who arent it just shows their ignorance and lack of maturity!
Dont make yourself housebound as that will make things worse.
Thats it with accidents when they happen they can feel like the world has ended.
your not alone I've had similar experiences. Like yourself I just cried. My initial thoughts were I can't go out as I felt so ashamed. I spoke to the doctor but like I've indicated she is a waste of space.
I have been looking at the reusable sanitary products, which pointed me to the incontinence products. I ordered some off amazon. I've also looked at Google and they look quite easy to make and you can sew them in underwear. I've looked at the different materials that can be used and today intend ordering the materials off amazon.
If I have success making these says she who hasn't used a sewing machine for over 40 years we can sort out a way that I can send you some. My ❤️ goes out to you and I'm sending you a big 🫂
We are not our illnesses and ailments although they try to control our life. The question is do we give up them or stand up to them?
If you're feeling alone with this please call me on 07875 676 166 I live in North west England
What we do is we stand up to these things and we dont let them get in the way of living our lives!
Hi so sorry to here about your problems i also have had the same thing happen to me i have had trouble with my stomach since i was 20 and now i am 82 so dont give up and i am sure sombody in your village as also got the same and please tell somebody about it you will find it helps
All the best
Point is bowel accidents are in no way uncommon its just that they arent talked about!
I bet theres lots of other people in the village who have them that are suffering in silence.
Oh my heart gos out to you , what a terrible thing to happen , but please don't let it take over your life , have you thought maybe ring 111, for advice ,they might offer an alternative to waiting for your gp,who sounds useless !!,I'm sure at least one of your nieghbours would understand ,and help if you could bring yourself to talk to them , or if that's too much maybe ring a help line for advise there's nearly always help somewhere close , I really wish I knew you I would help as much as poss , but meanwhile feel free to chat here I will always reply ASAP, take care for now and don't worry your not the first and won't be the last this has happened to
Many years ago I was on the way home and had a horrible accident and had poop go down my legs but thankfully only I knew about it and got myself cleaned up and laughed about it in time but at the time it felt like the world had ended though.
However I was determined to not let it stop me going out and living my life!
A few weeks ago a colleague who is pregnant was sick all over myself and colleagues and we had been very kind to her saying how thats what washing machines are for and how there was nothing that couldnt be cleaned up and she had thanked us for our kindness!
Back downstairs the line manager had seen our soiled uniforms and had shouted at the pregnant lady for something that she couldnt have helped!
Sadly things like bowel accidents and throwing up are things that are out of our control and can happen to anyone.
hello my heart goes out to you.ive had this happen several times.i was going to the loo 20 times and more for 6 weeks lost 2 stone had tests and found out it was ibs. I've been a martyr to my nether regio s for 30 years. Many a time I've knocked people over getting to the loo in tesco.you don't realise how bad ibs can be. I always carry bum wipes and spare knickers with me and hope my bag doesn't need to be searched.dont be embarrassed it happens to the best of us.
How awful for you. It's happened to me a couple of times but I was out walking the dog. Also I have had to drive back from somewhere after ' an accident'. It's not pleasant
I am usually bad in morning so go out in the afternoon. Tena pants give me the confidence, also Immodium if I am having a really bad day.
Did something happen 5 months ago to trigger this? Also try and keep a food and symptom diary for a few weeks then you can show your Gp.
Try not to stay in.
All the best. X
Staying in is the last thing you do as it makes things worse!
Oh you poor thing, I know how you feel it once happened to me I had diarrhoea for months now I have chronic constipation I really don’t know which his the hardest to live with, I now have fissures and am in in chronic pain constantly, don’t let the Doctors stuff antibiotics down you they well known for coursing Diarrhoea, I was diagnosed with IBS nearly two years ago but did not have the appropriate tests, it was the easiest thing to say, don’t beat yourself up over you incident you would be surprised how common it is. I am sending you lots of hugs XXX
I am so sorry this happened to you. I've had close calls and usually bring extra clothes with me, either in the car or in a large purse.
It's possible the antibiotics made your diarrhea worse. Antibiotics often do that. You may need your Dr to order stool tests to make sure you don't have CDiff from the antibiotics. Please don't stop going out of the house. Order the type of clothing others suggested. I hope you can see a good Dr very soon.
Thank you all for your kind words and advice, when Ifeel a little less traumatised I will certainly look into all your suggestions .
I have had a ‘gippy’ tummy for years and after many investigations years ago I was told diverticulitis and nothing could be done although in 60’s my mum had part of her bowel removed and was later diagnosed with Celiac disease.
From the beginning of July when this suddenly started my Dr sent off a blood test and stool samples and referred me to the emergency consultant. All came back clear apart from the diverticulitis. Spoke to a different GP who’s answer was “everyone has it” gave me 30 Imodium and sent me home
With so little help available these days I have resorted to looking online as I have no diagnosis so don’t have a clue how to deal with this.
I filled in a survey on the Celiac page and it sent me a note to show my Dr to say I should be tested for Celiac-He binned it saying I was too old to have that! End of consultation!
So no further tests or treatments just deal with it.
Thank you again for all your support
Thats stupid saying you are too old to have celiac disease!
You have to change your doctor. And it might be a challenge to find a new good one. Stories of appalling GPs are everywhere.
Could you see a consultant privately? You don't need be referred by your gp.
Gluten intolerance doesn't just disappear when you get older... you could remove gluten and see that helps. But it's everywhere (shampoo!), and you have to remove it completely for it to work.
Am surprised your GP would not test for Coeliac. We have a friend who was 70 when he was diagnosed with Coeliac after many tests and put on a gluten free diet, so you need to be insistent about getting a test for it, especially as your mum was diagnosed with it. I would change your GP if you do not get any satisfaction.
Oh I'm so sorry, I'm always terrified of it happening - it happened once but I was on a walk not far from home and so that wasn't too bad but going away is a nightmare. I have several health issues including RA but if I could cure any one of them it would the ibs, it restricts my life so much. I do take Imodium if I am going away for a short period and find that probiotics help for a while. Best of luck!
I know the feeling, awful. Some things that have helped for me are; low fodmap diet, wait for an hour after eating before going out, have BM then go, dont eat too much fibre - I cant eat any pulses, lentils, beans, chickpeas, etc. Some people take anti diarrhea meds at crucial times.
I always have spare underwear in my bag.
To deal with the anxiety maybe use incontinence pads for a while.
Push for an answer when you do get a GP appointment, specialist help if necessary - diarrhea all the time is not normal even for IBS .
Thank you all,Ifeel a little better today, I have a telephone appointment with the doctor tomorrow, and have with tears ordered as suggested incontinence products, but sorry to be graphic even the expensive ones do not look like they would have completely worked on that occasion, it was just awful.
Will update after Dr call-again many thanks
Good for you. Another point that can help is to use a range of solutions. First would be the incontinence products; second may be Immodium; third would be knowing where bathrooms are located; fourth is having a clean up bag. Using a variety of solutions at the same time may give you more confidence. Also, have you considered the Fodmap diet? I hope, at any rate that the doctor call was at least a little bit helpful. Doctors seem to be so jammed since covid that it is a miracle to get any help.
hi there, so sorry you’ve been through this. Sounds awful. Your Gp needs to refer you for urgent appt to Gastroenterology, and also the Bladder & Bowel Team. I know they are both extremely busy however with long waiting times, so in mean time gp needs to do stool test, all tests for gastro issues, full blood count, and any related markers to rule things out. GP knows that changes like this, for this long, means urgent support and diagnostics. Are you drinking lots of water? You must be dehydrated with all this diahrea. Try and drink at least 2.5litres of water a day. Have you family and friends to support you? Everyone on here has given you similar advice so you know you’re not alone but who have you to support you on the ground as it were? Are you managing at home? I used to work in Social Care so your post has kicked my brain in gear :). Thinking of you, hope to hear you start to get the appropriate clinical support you need urgently. D
Thank you I have had many of the tests and all came back clear apart from Diverticulitis which I knew about anyway , never affected me this way before, hence why I have been forgotten about.
Nothing happened before this started which might have triggered anxiety, no dietary changes.
I truly have permanent Diarrhoea the only time this changes is if I take loperamide and day or so peace with no bm. Then the pain steps up a notch 2 quick bouts of ‘normal’ diarrhoea then within 10 minutes the flood gates open!
I am alone at home no family. No outside help offered or received even during Covid although I was classed as vulnerable saw no one for nearly nine months but I got through the first I heard from anyone was two days before help ended to tell me it was ending! Never mind in the past now.
I’m so sorry you went through that - I did too. Saw NO ONE for 9 mths in all… apart from two v scary (as petrified of catching covid) hospital appts that had to happen. I was talking to myself on a daily basis, and even a spider in the bathroom 🤣. It was dire for you I can tell, and I know first hand. I went a little bonkers and the first one was so utterly awful eh? Had no hope just thinking “well that’s us done for then… or never going out again!”. Just awful and yes, it’s over now, but hoping nothing similar occurs. I haven’t any family at all either. My brother passed 2mths ago with parkinsons complications (sepsis) at only 62. I’m 60 in feb but really struggling with nasty flares (have lupus, sjogrens, heart diseases and other nasty stuff on top of IBS and slow transit. Diverticulitis is awful I hear.. and you seem to really be going through it. Have you a specialised diet for it? Are you under gastro team? You so should be, of course, as it is not being managed and your GP isn’t a specialist. I don’t suppose you could go private? I just did as gave up with Nhs.. who diagnosed me with IBS on the phone nearly 1.5yrs ago.. I was prescribed completely wrong stuff by GP and gastro didn’t pick up on it - Fibogel… to someone who has slow transit and Sjogrens! 2yrs of utter agony for hrs and hrs each night… but sorted now post private gastro. She was recommended by a friend with IBD. So cost me £250 but was totally worth it. Could you do that? Apologies if sounds extortionate. Just a thought. Can you still manage housework etc? Have you discussed with social care? Or just Age UK? They have cleaners but obviously uou have to pay. You’d be eligible for PIP and all sorts I’m sure… Hope OK to say all this… I’m just feeling for you. D
I do not mind any comments that are useful.
If private is still around that price I would be willing to do it but have no idea how to go about it We only have a small hospital on the island so would probably have to go to the mainland.
I will look into it tomorrow many thanks
My private appt was 6wks ago so should be OK. If you can ask around for recommendations or Google and see what reviews say that would be good. There is one person I would suggest avoiding and the surname begins with J. They do NHS and private but not sure what area you are thinking you might go to?
Thanks just checked hospital website if and when I get referred to gastroenterologist and it says the wait time for first consultation is 36 weeks, so private it will be. I know things are bad but that is just criminal after paying into the NHS all my working life. I don’t think my body or mind can hold out that long.
Where are you thinking of going, private-wise? And I'm quite shocked to hear you already have a diagnosis of something such as Diverticulitis and you've not been referred to a Gastro. Not good enough Mr GP!
I live on Isle of Wight so somewhere in th e south .
Well no phone call from GP-this is just not acceptable what can I do now?
Oh no. That's awful. So sorry. I thought you said the GP said you have Diverticulitis? Then, OK, of course the GP can't do anything more for you - but a Gastro would! If you could get to Montefiore Hospital in Hove, East Sussex then I recommend Dr Lucy Green. Wonderful clinician. And maybe call PaLS? Not sure they exist where you are.. Could you ask to speak to the surgery Manager? Maybe get another GP? Just found the NICE guidelines = please read and recontact your GP if you think they are not following these.. and quote them as it talks about when referral to Gastroenterology is required:
Diverticular disease: diagnosis and management
Evidence review for referral criteria for acute diverticulitis
nice.org.uk/guidance/ng147/...
Hope it helps. D
I have been waiting to see a colorectal surgeon for ten months, I have given up hope, I worked till I was 71 and pains my taxes and national insurance since I was fifteen years old, absolutely disgusting, I have booked to go private as I have no choice, I am in so much pain. The nhs has almost totally collapsed altogether, people are taking loans out to pay for there health.
Oh bless your heart. Can't resolve, but can send lots of love and virtual hugs
I am mortified, GP Just called absolutely nothing further they can do for me , nothing at all! End of conversation! I cannot live with this hanging over me for however long I have left, although Iwas told I was being referred to gastroenterologist this has not and will not be happening because apparently there is nothing wrong with me ‘the tests say so ‘. So I will just stay housebound and gradually fade away. Thank you for all your help.
Its so frustrating isnt it when you arent very well and then get the door slammed in your face with the theres nothing we can do for you line!
Staying housebound is the last thing you should do as all it does is make things worse.
I'm so sorry, that must have been very upsetting. My father in law who is a similar age to you has diverticular disease and he takes medication (not Immodium, something in paste form I think). He sometimes has to toilet dash but he's able to get out and about and go on holiday etc. Definitely go back to your GP x
DId you have your Covid jab recently? I had mine this week and since then I have had sudden and urgent diarrohea in the morning. Lucky I was not out as there was no warning or anything. Please try and go out, it is so damaging for you. All the best x
I had my Covid booster a few weeks ago and by coincidence whilst in the car park I had a ‘sudden dash’ and didn’t quite make it so couldn’t get out of the car! My sister went in for hers and made my apologies. Kindly the nurse came out to the car and gave me my jab. She listened to me more than any GP and confirmed there was a problem and I should return to GP! We know our own bodies and know when something is wrong, I did not get a diagnosis or any advice so I can’t even say I have IBS!/
What a kind caring nurse! Go back to Gp surgery and ask if there is another Gp with in the practice that you could see. Or you could self refer to the continence clinic on the I.O.W. They might be more understanding.
Martin and Pleasance IBS Relief. Is something we have here in NZ, it is homeopathic so maybe you could find a german version. I stopped working about 8 years ago because the IBS was unmanageable at work. For many years, i had to go about 5 times a day and mostly live in my bedroom as it has an attached ensuite.
I try and go out once a week and aim not to have to go to anything longer than about an hour or two. I have been on Imodium for a few years now and find it helps but I still have problems with 'need to run'. When I go out, what I do is this.
Mid to Late afternoon is my best time. I get through breakfast and the minimum 2 visits to the loo and then I'm usually good to go after a few hours. Delaying or skipping lunch, I take the Martin and Pleasance spray and venture out by car as exercising on the way to an appointment can be dodgy. Usually M&P takes 5 mins to kick in and I find it lasts up to an hour. You can actually take 4 times the dose if you need to.
So far I have had successful appointments although 1 time I had cramping starting up and had to take another dose and cut short my shopping foray to get home in time. Its not a cure all but it does seem to work. I have also taken it for bad cramps and it works but it seems to 'kick the can' down the road rather than cure. But anything that can get you through the day cant be bad. BTW - I am not a homeopathic devotee but people swore by it so I tried it and was pleasantly surprised.
I am so sorry to read this and I just want to say first how brave I believe you are for documenting this here and doing your best to deal with a very difficult situation. Don't give up. If your GP is not helping, you may need to find a GP who can. Have you been tested for BAM -I have BAM- and I am up to the point of having a second opinion after about a year and a half wait regarding what to do meds wise. (I can't tolerate anything I've tried) I have become extremely reclusive. I won't go into all of that this second as I just want to say - and I know it's easy for me to say but fuck what anybody else thinks or has to say- if they want to gossip because they have nothing better to do, more fool them. also, there are probably less people that know about what happened then you imagined. Don't let other people deter you from living a life. You deserve better and deserve better help. Maybe speak to MIND/ Citizen's Advice re additional help or your local Mutual Aid Groups. Also let me know if you need any helpline numbers. You sound like a very capable person. You can do this.
i am so sorry to hear that… after you see the doctor you may well feel happier… so don’t right yourself off from the world.
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