I’ve had IBS-D for about 6/7 years and last year was just awful; I almost had an accident last June (ended up going in a bucket in a shed) which then resulted in me avoiding leaving the house for months. To cut a long story short I had a complete meltdown about it all in August and wound up on amitryptalyn (sp?) and having some cbt sessions to try and get a handle on the anxiety so I could leave the house again.
With precautions (silicol gel, Imodium and an adult nappy) I’ve been able to do the school run since September, I don’t drive and had an anxiety attack on the bus on my daughters first day at school so we walk both ways. We take a route where there are two sets of wooded areas I could go to if it kicked off as I really don’t get much warning before I have to go.
I’ve just had notice to return to work from furlough (I’ve been on it since June last year) and today I’ve had to run to the loo three times already. I’ve had enough of this ruling my life.
I thought I kind of had a handle on it as along with the medication and cbt I’d also done fodmap with the help of a nutritionist and lactose and a few other things seemed to cause problems but I still have days like today where I’ve eaten none of those things, not even in the last few days, but I’ll still have an upset tummy with little warning. This makes me think a lot of it is stress related but it’s a vicious circle because I’m also stressing about pooing my pants. I try telling myself that even if the worse happens and I do poo myself I won’t die but what if it happens at one my kids school, how embarrassing would that be for them or what if it happens at work, I work in conference & events so I could be showing a client round or in a meeting. I can feel myself going back to where I was last year and it was a horrible place to be and thought this would be the most likely place I’d find someone who understood.
I don’t even know what I want anyone to say to be honest. I know I need to get a grip and get on with it.
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Mush83
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I mentioned it to my GP at the time but she was very dismissive of the idea, she said it mostly affects people who have had something removed. I’ll definitely look into it further though, I wonder if I could get the test privately.
No I don't think it can be tested privately as you need a special machine. Not all hospitals have one. You could ask if you could try a bile sequestrant (that is what they give you to help with it - it helps bind it together). I would contact your GP again and see what they have to say. I am assuming you are in the UK.
Walters JRF, Arasaradnam R, Andreyev HJN, et al Diagnosis and management of bile acid diarrhoea: a survey of UK expert opinion and practice Frontline Gastroenterology 2020;11:358-363. For anyone struggling with getting a GP to take this condition seriously this article could be useful. A review of NHS Gastroenterologists and their opinions on the diagnosis and treatment of Bile Acid Diarrhoea (BAD).
The article states that BAD is common but often undiagnosed and treatment is variable.
Another thing to look into is gut directed hypnotherapy. I think only prof whorwell at Manchester does it on the nhs but it is better than CBT for ibs. Worth looking into. Good luck!
I think it is particularly helpful for ibs where there is a stress/anxiety related link but it can help anyone for reasons that are not fully understood. I think after about a 3 month course of treatment about 80% of women and 60% of men get significant reduction in symptoms.
Have you been tested for caeliac disease? Also there is a product called enterosgel that's good for IBS D. You do a 4wk course then either take as needed or a maintenance dose. It's not the same as silico gel but similar. It's even helped me with GERD.Also have you tried a good probiotic?
I’ve had various blood and stool tests done on two occasions and believe this was one of the things tested for. Fodmap didn’t flag it up either so I’m pretty confident it’s not caeliac x
I’ve tried a couple of probiotics and they seem to make it worse unfortunately. Enterosgel is on my wish list to try- I need to put a bit of money aside to purchase a course.
I’m glad I posted yday- feels better to know I’m not alone x
Entromed often do buy 1 get 1 free on the tubes so you would get 4 for about £40. Or look on ebay as people often sell them. There are also some clinical trials for enterosgel
Going morning, I am so sorry to hear you are not too good. I was the same about 4 years ago. I too avoid lactose and gluten and follow the fodmap diet, but have days where I have a runny tummy for no apparent reason. I use Entersol Gel and I can't tell you what a difference it has made. I do use it every day but just 2 doses and I don't take anything else apart from Mebeverine. It really has worked wonders for me. May be worth a try. Claire xx
Maureen1958 has some good advice there about BAM. Since you have already tried FODMAP, it might be worth giving Alflorex probiotic a go which has been scientifically studied for IBS. If you have an imbalance of bad to good bugs in your gut it could help to bring things back in balance. Good luck with it all.
You poor thing. I know how you feel. I've had IBS for 45 yrs. I am lactose and dairy protein intolerant as well as yeast, sunflower oil and dextrose intolerant. The Fodmap diet tells you what the soluable fibre foods are but I found I can't eat any fruit....fruit for me is disasterous. I can only eat cooked carrots and spinach as veggies. I suffered for the first 7 yrs of IBS feeling like you with constant diahrea and it was dairy intolerance. Other intolerances like the sunflower oil and yeast (I did have a yeast for that one) and dextrose are very difficult to discover as they are in so many food products.
You may well have an undiscovered intolerance.
The biggest are dairy, yeast, eggs and gluton or wheat.
Just for a couple of weeks stick to a restrictive diet. No dairy, no fizzy or alcoholic drinks, no fruit, no bread products and no veg for the first few days and then just well cooked carrots.
I eat Farleys original baby rusks for breakfast and as a biscuit. For dinner, I have chicken, fish or meat ( not pork or lamb, too fatty) with carrots or potatoes. For tea I have a tin of plum tomatoes mixed with a packet of Tilda basmati rice. I use Tilda because its the only one without sunflower oil. I would advice not to eat the tomatoes though as they may not suit you. Instead you could make pancakes with soy milk. Eggs are good as they bind. You could have omelette.
My diet is limited but I no longer have painful cramps or diahrea. I'll go with that.
I’ll revisit fodmap as it really highlighted some problem foods and I might well have missed a few. Broccoli/leeks and some other veg and fruits along with milk were found to cause tummy upset within the hour for me. I’m also ok with carrots, and bananas seem to ok (though not if too ripe). It was a real eye opener.
It seems we’ve all been where we have a good few weeks/months and think we’ve cracked it then bam it’s back for no apparent reason. It’s disheartening isn’t it. I’d be more than happy to stick to a restrictive diet to avoid it.
Leeks and broccoli are killers! They aren't on the Fodmap list. I was told by a dietician not to eat fruit, especially banana. Strange isn't it, some people can eat stuff others can't. IBS can ruin your career, your relationships and friendships and social life, no holidays because of travelling. It can stop you from enjoying the small things in life like just going for a walk. No wonder its so bad for mental health and creates anxiety and phobias.
There is a cure...It's faecal transplant but they don't do it in England. It's not widely known among doctors but they have used it to cure C-dif and I think MRSA. Yes, just for a couple of weeks restrict your diet to the foods I suggested. Let me know how you went. Love and good luck.
Mush83 I feel for you. I started about 3 years ago with IBS-D. I haven't bothered going to my GP because when I discussed it with them on the phone last year they just said take Imodium/Loperamide which isn't really the answer. I too have had a modicum of success with Enterosgel but I'm still not overly confident about going anywhere that I'm not sure where the toilet facilities are. I went for a long walk last summer and had a terrible explosion and had to walk home feeling very uncomfortable! I make sure if I go anywhere I where a long jacket or coat so that if something does happen no-one can see! It's ridiculous really and I feel extremely anxious every time I go anywhere which really doesn't help. I feel like I don't get much sympathy from family either as they don't understand when I say I don't want to go out for the day. I even avoid taking my grandchildren to the park! It's such a difficult thing to control and I'm finding myself becoming a bit of a hermit! Good luck though. There is some good advice to be had on this forum and I too am glad I found it so that at least you can talk openly about our condition.
Thank you for replying, hearing from other people in the same boat is helping a lot.
I’m sorry to read about what happened on your walk, that must’ve been a horrible experience for you x
I too wear long coats and have taken to carrying a small pack of wipes, underwear and leggings in my handbag just in case. My husband was very understanding at the start but I can tell it’s wearing thin now as, like you, I don’t really want to go out and certainly not on long journeys or days out. How it effects the kids is the worst part of it. I feel so bad about us having to walk to school in all weather and my middle daughter (15) must get embarrassed when I call ahead to make sure I will be able to access toilets whenever I have to take her somewhere.
I changed surgeries because my mother in law said her gp was very understanding and thorough when she went to her with tummy problems and I have to say she was right. She’s ordered two sets of blood and stool tests in the two years since I changed to her and she was very quick off the mark in arranging a nutritionist and therapist when I call at my wits end last summer. Maybe, if you don’t feel supported by your current GP you could ask to speak to another one at your surgery or change surgeries. I have found male GP’s to be very dismissive of the effect IBS has on day to day life.
I have had your problem for 42 years. I have voided in public multiple times and had ambulances called for me by kind people who waited with me till the paramedics took over.
I fasted all day and ate after ten at night for decades. I performed an enema every morning and voided artificially using that method. This meant I could go about my day without worrying about being taken short. I always had a tampon in my rectum to catch any residue. I always had glucose tablets in my pocket in case I felt faint.
They stopped my periods at 35 because they thought it was linked to the menstrual cycle.
Lockdown has been a blessing for me as it has enabled me to experiment with diet. I have not had an attack for seventeen months now. My stools are fully formed which is something I thought I would never see again.
I was on the point of paying for a poo transplant to get good bacteria into my intestine but I don’t need it now.
I have discovered
KIMCHI
I don’t like the taste but I suffer it because it changes the gut bacteria. Just have a teaspoon with every meal. The other good thing is potato starch (very cheap) and sauerkraut. They are now saying fermented food and reheated dinners are kinder to the gut and I think they’re right. Dr Michael Mosley certainly knows what he is talking about and he deserves the Nobel prize for medicine. Buona fortuna e con amore Bx
Well Amanda oddly enough I can eat most things now so long as I include
Kimchi
Sauerkraut
Potato starch
I don’t like k or s but I force myself to eat them because of their medicinal benefit. Potato starch is tasteless so you can put it in soups, yoghurts, kefir etc. Cholostomy patients take this to thicken their stool and they practically give it away in the health shops.
If you consult the Bristol Stool Chart it will tell you the correct consistency for your faecal material. Mine is always grade three or four now. A miracle. Con amore Bx
The school runs are horrendous. I voided in the car and frightened my grandsons. They wanted to help but the little one was in tears and asked if it would happen to him.
You can buy an enema douche on line. You also need a plastic bidet which costs about ten pounds on amazon. You fill the bidet with water and put it on the toilet. Then you sit astride it and insert one end of the pipe into your rectum Leaving the other end in the water. Then you squeeze the pump multiple times and if you have any material in the colon it will be flushed out. You feel squeaky clean afterwards and if you put a tampon in your rectum you should be able to get to the school and back without incident.
However, you may not need to do this. A much quicker way is to use a glycerin suppository. People differ but I only have to wait ten minutes for an evacuation. Stay in the bathroom in case it happens quicker. You can buy Fleet suppositories on the internet. They are the best and good value for money. I discovered them in America. Folk use them for constipation but they are equally effective for diarrhoea. Please do dummy runs with these methods so you have an idea how long you will be clear. You have to know your own body.
Buy
The clever guts diet by dr Michael Mosley. He will get you on the right track.
And remember stress is not causing bowel disturbances. Bowel disturbances cause stress.
My psychotherapist knows the measures I used to have to take and she supports me. These things are rather drastic and you should let your medic know your situation. Also, consider taking some dietary supplements as you will be depleted of many nutrients especially potassium.
I didn’t. I bought it many years ago in Italy for vaginal irrigation as I sometimes needed to remove thrush medication. And it had a separate attachment for enemas. I thought at the time that I would never need the enema bit but how wrong I was. The one I have is of very soft black rubber and folds away into a tiny package for travelling. Con amore Bx.
I’ve just had a look on amazon and some of the douches look quite scary but I’m sure they all work perfectly. Mine is a very gentle flexible tube which does not hurt at all. This is my second reply by the way. Bx
I know how you feel I used to wear tena pants every time I went out also had a few accidents if I had to go anywhere I mapped out all the toilets on the way. Last September I saw a nutritionist and went gluten and dairy free also had good advice about what vegetables not to eat together and onions garlic and leeks are a no no I have to say since then I am going to the toilet once a day and no diarrhoea or loose stools it’s a miracle! I know it doesn’t work for everyone but anything is worth trying. I hope your better soon xx
Oh yes garlic and onion are no no’s for me too. So many things have garlic or onion powder in so it removes a lot of mixes and sauces. Fodmap proved for me that even cheese & onion crisps effect me albeit the following day.
Also, I know it's something that none of us want to think about, but have you thought of wearing incontinence pants for things like taking the kids to school? More to reduce your stress than anything else - then you know that if you do go, no one else will know, and having removed the stress of the situation, you're less likely to go anyway.
The app looks great! I’ll definitely give that a go- thank you x
I wear pull ups for the school runs, and intend to wear one to and from work too. They do give me a little reassurance but I still fear the noise and smell will make what’s happening obvious. I stupidly put my youngest in a school a half an hour walk away so if something happens we’ve got a long (and smelly) walk home 😕 it is what it is I guess.
When you run out of ideas, tried all sorts of suggestions, the one thing that brings things under control believe it or not is staying on boiled rice for two or three days.It seems to draw out the culprits and stop the runs.My mother (86)has had a few months of this and finds rice diet helps restore normal service....its worth a try.Then introduce dry toast(wholemeal) porridge, green bananas.for the first week after things have settled.Impacted stools in the lower bowel can also cause your issues too...this makes the looser stuff flush past (sorry) freudian slippage.
I Agree with you about the rice. The specialists are now saying reheated rice is better than fresh. I remember many years ago when I was in hospital in Italy after a miscarriage the bowel patients were all on rice only diets as this was thought to slow down the peristalsis. Con amore Bx
Thankyou for replying....another couple of ideas...If you ever took a strong course of antibiotics such as clindomycin...you will have removed virtually all the good bacteria.Its the good bacteria that keeps the bad bacteria from turning food into loose stools...when you keep "going" its simply your body trying to get rid of the bad bacteria.
Spirulina/Chorella will kill back the bad bugs.....
Quercetin .... natural antibiotic.
Olive Leaf extract...best by far...this stuff is amazing.
There are many more...herbs have amazing healing properties for the digestive tract.
Once you get the upper hand start looking at both prebiotic and probiotics.....If you restore these...there is no earthly reason to restrict your diet in the long term....many people with food intolerances often wonder why they can sometimes eat stuff without issues...then not!
Finally if you do not produce enough acid in the stomach you end up with SIBO....the acid is thought to keep the bad bugs at bay....simple test is to drink some sodium bicarb in water and see if you burp....if you dont then its possible you do not produce enough acid.
Hi there Mush 83 I can relate to your problems I had same for about nine months .Have you tried Colestyramine 4g it is in powder sachets just mix with very cold water and you get used to the taste one a day but you have to keep taking it forever .It is made By Questran Lite I am in Australia so could be different where you are .hope it helps it saved my sanity and I can safely go out in public again.
I'm the very same, I take alflorex now for the last 4 years and still having problems I dread going anywhere I wear the long descreet pads and I have had accidents when I go for a walk there are no public toilets as I live in a village and if I go the country roads there is nowhere to hide I could poop about 4-5 times some days sometimes it's like I never feel finished and I don't get much of a warning time I hate having to do the shopping the toilets are at the other end of the shopping center and I can only shop there because none of the other supermarket have toilets the lockdown has actually been good because I don't have to make excuses to go out it's a nightmare I have this 16 years I had a heart op 17 years ago and I think it's the medications I'm on I had a colonoscopy done back then the drs just said it was ibs but no follow up and no point in trying to change doctors because no others are taking on new patients I take imodium sometimes and now my doctor has retired and I have an Indian doctor and to be honest I can't understand a thing he says so you are not alone but I will try some of what the other people said
I’ve just replied on your post but wanted to say you can direct message me any time. You’ll see from the tone of my post that when I have flare ups it really gets me down so let’s all support each other 🙂
I totally get what you mean about lockdown being good. Family and friends can’t relate to the anxiety it causes.
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IBS-D - anyone had accidents!?
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Has anyone had success with a U.K. nutritionist, dietician or naturopathic doctor?
Had symptoms for years.
