Tired : Another wee rant . I’m tired and fed up... - IBS Network

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Readmeastory profile image

Another wee rant . I’m tired and fed up there is no good time to have bowel problems but at the minute it’s horrible . Phoned my doctor and trying to get them to see me is like phoning to see the Queen might have more luck , so fed up of speaking on the phone trying to describe the pain in my right side and bum 😟how can they tell over the phone . I had a ultra sound on Tuesday and if that comes back clear I’m taking to the drink as then at least it might numb the pain . I would love the doctor or specialist to suffer my daily pain for a day even then see what he or she does . Especially the doctor that told me over and over again he never had a magic wand . I just would like a few days pain free . Moan over . 😫

44 Replies

The same doctor won't see me I have an on going condition proctalgia fugax/ lavertory ani syndrome basically a pain in the rectom to which he knows about .I do need to have to 10 mins of his time , no can't do that ..covid ..ive had both jobs..but No. We will see about that . Rant over good luck to you

Readmeastory profile image
Readmeastory in reply to Rice333

I get severe pain in my rector it can last all day sometimes a bath helps but I’m just realising there’s a name for it as I’ve seen a few posts with this condition so next time I see doctor I’m going to ask . Do you take anything for the pain 😟

Rice333 profile image
Rice333 in reply to Readmeastory

Gabapentin 3 x daily ..there not that good ..I was told mine is proctalgia fugax...I think its lavertory ani syndrome as the pain is 23x7 , 365 days ..for 3 years now ...they say there's no.cure , I've have found out that Botox injections in the rectom works ,,, every 3 to 6 mouths..watch this space I'm looking into it .

Readmeastory profile image
Readmeastory in reply to Rice333

Let us know what you find bout . As I can’t sit for long as the pain is so bad . And my bowel just doesn’t work that great .

When my IBS first started many years ago, I found if I had a few whisky and cokes the pain would get better after about two and much better after about 4 and would have disappeared all together after about 10! 😀 But it doesn't work anymore! 😞 Mind you, I wouldn't drink that many now!

Not a whisky drinker but might become a little old wine drinker me 🍷🍺🍷 i

I wish I could drink alcohol my IBS won’t allow it. Living with bowel problems is abysmal. It’s hard to explain to a non sufferer how disruptive and painful the condition is. My life is centred around toilets knowing their location wherever I go. I constantly look nine months pregnant with bloating . No cure in sight it gets depressing. My heart goes out to fellow sufferers. This forum is great as I don’t feel so alone and I can moan openly.

Readmeastory profile image
Readmeastory in reply to KC2906

I don’t drink but sometimes this pain could drive you to drink 😁

I’m the same had 2 e consults and 3 telephone consultations trying to explain where the pain is they just get it my pain moves around can be left or right been given several prescriptions but don’t help

Same here, I've had constant severe pain for weeks now which started months ago when it was only every few days. Had numerous telephone GP appontments, been to A&E (totally useless), can't sleep at night. GP prescribed some sleeping tablets for 2 weeks only be taken very sparingly but won't give me any more. I'm at the end of my tether cos nobody seems to give a damn if you are in pain.

I do sympathise. I spent over three weeks talking to faceless Doctors over the phone. They kept telling me I was constipated. Finally was in so much pain I took myself to the out of hours service. I now have a stoma bag and a diagnosis of cancer. Keep fighting for treatment.

MaryMillie, that is shocking. How are you now?

It’s early days, I’m back home, getting used to managing the stoma, and waiting for my next appointment with the consultant to discuss the way forward with my treatment. Do remember that although IBS is painful and uncomfortable if the pain is unbearable and you feel something is wrong, , it probably is. Don’t take no for an answer.

Zedi39 profile image
Zedi39 in reply to MaryMillie

Goodness, that is just awful. I know the GPs are stretched & stressed but come on. Listen to people. I wish you all the very best going forward

The specialist who seen me 2years ago said no cancer just have to live with the pain . But two years on pain wore lock down cancelled everthing . But had all the tests two years ago ct colonoscopy X-ray . Endoscopy and everthing came back no cancers but slow track bowl with scar tissue . New symptom is pain in my rectum that last all day . Doctor treated mr for piles . . First test in 2years. Is the ultra sound I just want something to show up so I can get help an£not feel a failure in life anymore . But I’m glad you’ve got some help I’ve asked for the stoma but told I wasn’t ill enough . Sorry for the moan when you are recovering . 😟

If all the tests are clear, be glad

I will just want to find something that helps .

I've suffered with IBS for over 40 years so I feel your pain. The trouble is IBS doesn't show up in blood tests or colonoscopies so doctors dont really know what to do as a treatment. It's caused by bad gut bacteria and intolerances. Probiotics don't really help.Mine began with a sudden onset of lactose intolerance. This was donkeys years ago and back then intolerances like that were not really understood. It took 7 years to discover it. After cutting it out I was a whole lot better but there were occasions that I would have a flare up due to eating something that was an irritant. They were nuts, seeds, lentils, anything fatty or greasy and some fruits. Then about 16 years ago the full IBS set in and I developed several intolerances, they are yeast, sunflower oils, duck, caffeine and dextrose. I cant eat pasta, pork and only lamb occasionally and the only veg I can eat is tinned plum tomatoes, carrots, spinach once a week and potatoes but I can't eat potatoes at the same time as the carrots or spinach? I cant tolerate any fruit of any kind at all. They along with dairy/lactose, are in almost everything. So my diet is very limited but I am mostly pain free. I still need to be near a loo though. I eat farleys rusks as a breakfast biscuit. I use sainsburys soy drink and I mix the tomatoes with Tilda basmati rice.

I'm telling you all this because the only way to control bowel pain is to be strict with what you eat and drink.

Many people are helped by the Fodmap diet but just because they list things that are low fibre or soluable fibre it doesn't mean you can eat everything it suggests. Everyone is different.

The main 3 intolerances are dairy, wheat and yeast. I have no probs with wheat.It can take ages to discover your intolerances especially if you have several. My advice to you to ease your pain is to go on a very limited diet with no milk, bread products or fruit and veg Or a fast and introduce things one at a time to see what causes you pain. But remember food can take anything from 12 hours to 48 hours to go through your system. Be careful what you drink too.

I hope this advice will help. IBS is an awful condition. People just don't understand it. I hope you feel better soon. Hugs.

I was told to eat fibre and fruit . I tried gluten free but it didn’t help . I even did a York test and only thing that came up was red meat and egg yolk . Everthing else I could eat . So when I went to doctor was told theses tests are useless . Got tested for gluten and I was fine . Only one I’ve not done is dairy . As not sure what to replace it with .. just sometimes i just want to give up .

You have been given the wrong advice by your doctor. People with IBS cannot generally tolerate roughage, fibre and fruit. You need to look at the fodmap diet to see what veg you can try.

Sorry, meant to carry on. Don't drink alcohol or fizzy drinks. Try soy or rice milk as an alternative to dairy. Don't eat porridge or foods with high fibre. No spicy stuff either. No pizza because of the cheese. Keep away from processed or fast foods and sauces. IBS sufferers are adviced to only eat soluable fibre foods. Its on the fodmap sheet on line. If you think a food upsets you, then don't go by tests, don't eat it.

Try a non dairy, low fibre diet with no fruit, salads or veg such as broccoli, cabbage, cauliflour, hot peppers, Brussels sprouts, or sweetcorn. Oh and no baked beans. They are all the worst things you can eat. High fibre foods are only any use if you have continual constipation but there are gentle laxatives that work better with less pain. You really need to change your diet for just 2 weeks to see what happens.

Is there a book to help you work out what to eat . As being deaf I can’t really watch videos unless they have subtitles .

I will have a look at that . Need to get my mind round everthing as been eating porridge. Fruits don’t drink fizzy or eat pizza but do eat cheese . Your brain gets so tired coping with everthing ..

Yes, I know. Continual pain is really draining. Try not to get depressed about it as anxiety makes it worse. Don't give up hope. It takes a while to discover trigger foods but you'll get there. One thing to mention, medications. Some over the counter medicines can aggravate IBS. A lot if people recommend peppermint but research showed it can make it worse. I cant take it. Some medicines for IBS contain lactose which I find strange. I took Omeprazole for a while as i have acid reflux but the omeprazole caused agonising stomach pain. I've read on here that a lot of people found it dud that. It also robbed me of my sense of taste. So you see medications can cause problems as well as food. Personally, I would do a days fast just drink plenty of water then introduce one or two foods if you get pain you've found a trigger, if no pain then you know you can eat those foods. Try potato as its supposed to be the least known irritant and perhaps Farleys baby rusks. Make your own scones instead of bread. Scones dont need eggs and are dead easy to make. Use Pure as a marg. I would recommend it. You could have jacket potatoes (but dont eat the skins as its fibre) chicken is safe so is fresh fish and scones or farleys for breakfast or just to nibble on. Just try it for a couple of days.

Thanks I do most of that chicken potatoes and just tired . I also tried that tablet you mentioned but it never helped . My acid reflux . I took peppermint oil and found they helped but made my acid reflux a bit worse so stopped that . I try my best but I can’t give up . .even though you want to . But will just keep going .

Agree no fibre for me in fact my diet would be considered unhealthy. Fresh fruit and veggies are terrible for me. Lactose is replaced with a limited amount of lactose free milk (no more then 1/4 cup throughout the day) any more and I feel it. I started using oat milk and am finding I can tolerate that in limited amounts. Beef or any red meat is out but I can eat chicken, pork and fish but not too much.

Readmeastory profile image
Readmeastory in reply to Gypsy67

Will have to cut the fibre and see if that helps . Do you eat bread at all I try and limit my bread to one slice a day .

Gypsy67 profile image
Gypsy67 in reply to Readmeastory

I can eat bread but stay away from high fibre bread, I can also eat noodles, potatoes and rice (white). Everyone is different I have just found what I can eat but then always get that one surprise once in a while.

Readmeastory profile image
Readmeastory in reply to Gypsy67

Thanks will try low fibre and see how I go with that I do enjoy bread but cut it right down . But since I retired and stopped being a carer for my parents and grandson .I think not rushing around and bein active as much started it al, .

Gypsy67 profile image
Gypsy67 in reply to Readmeastory

But just because it works for me is no guarantee it will be good for you. Wish it was that way for took me many years to figure out what I can and cannot eat. AND then things change. I just recently had a bad reaction to raw apples. Ended up in emerg. I have eaten apples in very small amounts all my life but throat and tongue started swelling. Nothing to do with my IBS I was told but a allergic reaction.

Gypsy67 profile image
Gypsy67 in reply to Readmeastory

My stomach is tied to my life lol. All I need is a stressful situation good or bad and it rules my life. Yes if I eat only the things that do not bother me I am fairly ok most days but anything happens and all that goes out the door. I control those days with immodium and try to take “before” I have a issue which for me works better.

You might be milk protein intolerant as well as lactose intolerant. I am both. So, lacto free milk is out. I use sweetened soy milk but only in decaf tea. I have to be careful because I'm intolerant to sunflower oils and dextrose. They are in most things. Any thing with yeast is out too. I make my own scones...yummy! I also eat Farleys baby rusks. They're nice too and contain vitamins etc. Do You get acid reflux? I do, i have stomach errosion but can't take Omeprazole or over the counter antacids. It's a nightmare.

How did you find out you where intolerant . Did you just cut out stuff . I’m just confused as been told high fibre b6 docs the low fibre . So will try food map or low fibre diet . I stooped eating for about 6 months living on yougurts and mashed potatoes . List 2stones . So just brought stuff back slowly chicken fish and venison . No other meats . I eat tuna and smoked fish . But I only 1/2 a chicken breast and small fish . .gave up everything . But that didn’t help either .

Yogurts are dairy and possibly a no no for you. I would stay away from all dairy. Venison is too rich. Smoked fish is processed. You need to cut out All dairy and lactose. Don't starve yourself but eat foods that are low in fibre. Make your own meals from fresh. Make scones with soy milk as a substitute for bread. Stick to a diet of chicken or plain fish with potato but not chips. Try powdered baby rice as a porridge to fill you up. After a couple of days introduce eggs then if you are okay introduce bread. Then introduce carrots. Try things one at a time. That way you will know what you can eat.

I’m waiting on the result from my ultra sound . But will start with one thing I will try the dairy free and do that . Thanks for your reply

Yes you are probably right about the milk protein. I was a milk intolerant baby (mom fed me Oatmeal water and honey in my bottle. In those days no one knew not to feed babies raw honey. I survived.

sue32 profile image
sue32 in reply to Carlettejaque

Wow! Now I can’t eat tomatoes of any kind.....I have to peel all fruit or I’m in trouble😳. And I love tomatoes.....The FODMAP didn’t work for me either so I now tend to keep to rather bland foods....

Carlettejaque profile image
Carlettejaque in reply to sue32

Yes, I can only eat tinned tomatoes because of the peel. You are very lucky that you can eat fruit.

Covid = chance not to work as hard as before.GP's will be dreading this pandemic ending and them having no excuses any more to sit talking to patients on the phone. They can clear their worksheet in 30 mins.

I know how you feel, it feels as if people with IBS and digestive issues are just brushed off by the NHS. I was lucky to have a doctor that agreed to refer me to a gastroenterologist, and it took over a year of tests to be diagnosed. I used to have horrible pain every few weeks that left me doubled up, bloated and unable to sleep for days, and the only thing my surgery offered was Buscopan which did nothing but give me diarrhoea. Last year after different health issues left me in hospital and needing a hysterectomy, I was told that the pain was due to chronic inflammation of my fallopian tubes and a large cyst, sometimes doctors are too keen to blame everything on IBS and will ignore the possibility of it being something more serious. I was very lucky that the hospital doctors were so thorough as without them I would have developed much more serious health issues. I hope that you get the help you need.

I know exactly what you mean. How many times can you put up with being patronised. Because nothing is showing up on a scan then you must be imagining the pain or be depressed, having coped with the NHS for 3 years I think depressed is an under statement! All you want is not to wake up in pain every morning.

That’s how I feel I’m still waiting to see gastro and hear about my stool sample but we can’t give up the fight . I’m 66 only had it 2years 18 months in lockdown so it’s been hard . I to don’t want to wake up but we can’t think that way . That’s why I rant on here 😁stay strong

I empathise completely. I suffered for about 20 years before a diagnosis. Thanks to a brilliant GP he prescribed Mebeverine, which has changed my life. I take it alongside Loperamide. At least I can now leave my home a bit more than I did! 😘

So glad you got help after all that time . Mine is more constipation and slow track bowel so everything takes ages to pass through my system . But glad you got help 😀

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