IBS is a serious condition: Do you ever feel as... - IBS Network

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IBS is a serious condition

howarddavies
howarddavies

Do you ever feel as though anyone who doesn't suffer from IBS looks upon it as a nothing condition & that any sufferers who complain about it are making a mountain out of a molehill?

42 Replies
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Yes, especially GP's. They see it like "well we've ran all the tests and there's nothing to worry about"

I'm thinking they've never had diarrhea and vomiting to the point of collapse, they've never crapped blood, they've never had fatigue as such where you struggle to make it to the loo without an accident, mouth ulcers that line your tongue, cheeks and gums. Then there's swollen joints, sore muscles, skin problems, heart palpitations, the condition that keeps on giving.

I so wish this was a nothing condition. Then I would be fine. There is always something going on, when one thing settles down something else flares up. I rarely see my GP now because they can't help no more.

Batteria
Batteria in reply to Viklou

Yes. In the early days. Especially my own brother but I forgive him because he was only sixteen at the time. Now he understands and sympathises. I now choose very carefully who I tell. I even had folk thinking it was comical and making insulting jokes about it. Most people nowadays are very kind and try to help. If anyone offends you rise above them because you are miles better than they are. They don’t have to put up with your difficulties. Best regards.

SewingX1
SewingX1 in reply to Viklou

I emphasize with you. Concerning the swollen joints, perhaps you should see rheumatologist to rule out autoimmune disease. The GI issues, swollen joints, skin problems, muscle pain may all be related to autoimmune and may possibly be treated.

Viklou
Viklou in reply to SewingX1

That maybe next but I was tested for RA and was negative.

warnout
warnout in reply to Viklou

yes at my wits end to same here were do you turn i live upstairs bedroom near the toilet,,,, got worse since i got ol;der to,, and not mentioning gas pains on stomach what a night mare,,, i can relate to you tex up there exact ally

Yes like Viklou said especially the gps, they can be very dismissive which is so sad because it is a nasty thing to have, my family are even at the point of “what now” I sometimes feel very alone with this and there isn’t a day goes by that something in body isn’t playing up and I get well it’s only IBS so what’s the problem, if only they knew how dibiltating and painful it is, I just want to feel normal whatever that is ☹️

SewingX1
SewingX1 in reply to Cimmy

I’ve had IBS over 50 years. I found it very helpful to seek out a gastroenterologist. They have been very helpful in prescribing different meds throughout the years, Metamucil being a great help.

Cimmy
Cimmy in reply to SewingX1

I’m under a gastroenterologist, have been for years, it’s so hit and miss, I’ve had numerous tests but still in pain, my GP has just put me on painkillers that dissolve under your tongue, which seem to be helping. I have just read up on Metamucil and it sound very interesting, I will give it a go, I will try anything just to be me again, thank you for your reply it’s very much appreciated

warnout
warnout in reply to Cimmy

i just want to feel normal ((((

warnout
warnout in reply to Cimmy

my doc told me they cant give me any thing,, in case its food poising,, iv had ibs since i was 20 ,im 76 now it gets worse , i used to take Kayleen and morphine , but as im on othere medication for blood preasure ect , iv never any thing,,deprecate noe need to know if i can still take this medication

Yes, definitely.

I’ve found even specialists to be quite dismissive and be like ‘well you’re not suffering from bowel cancer or IBD so why are you moaning’.

I’ve lost many years of my life to this condition now. I can’t go a day without diarrhoea so live on loperamide (as authorised by my specialist). I have a very restrictive diet now as a lot of foods trigger me. I developed anxiety because of it, it goes on and on!

Those around me don’t really take it seriously. They think it’s something I can just control and do it on purpose...

yes no one understands you feel icelolated ,

What I would like to see happen is a 're-rebranding' of ibs to reflect the seriousness of the condition. An ad campaign similar to the ones created by Vs Arthritis would be great. Also changing the name of the condition would help. Calling it 'irritable bowel' definately downplays the impact of the illness.

Unfortunately this is all a long way off.

Batteria
Batteria in reply to Fencinggirl

I now call it severe faecal incontinence.

Agree with all the replies - GPs in particular could do with improving how they deal with us. And I can't believe in the 20 years I've had this condition that nothing has moved forward. It's still the same old stuff trotted out, generalised and not specific to a patients individual needs.

I've also noticed IBS gets treated as a joke condition in media (e.g. comedians thinking its a fun target). There will be a subset of people who manage to get on with it, but there are many whose lives are ruined.

Fencinggirl
Fencinggirl in reply to RickyW

Yeah I've noticed that in comedies too, particularly in America. Ok some people are always going to find poop jokes funny, but it's a bit of a low blow.

warnout
warnout in reply to Fencinggirl

so true

Definitely feel it is overlooked, downplayed. I've had IBS for years but never as bad as the last 7 months & a 2 stone weight loss. Mine isn't from anxiety but intolerance to foods which I cannot track down to single trigger food. Fortunately my GP's are doing quite a lot of testing but it is only because I won't let the matter go - think that's because I feel so ill when I have a flare up & it takes ages to recover fully!! So far all tests are clear as I expected after reading what other sufferers have said. The Monash University in Oz have done lots of research & has an app. So has Kings College, London - makes interesting reading.

I hope all you poor people who suffer so much have had Bile Acid Diarrhoea eliminated as a diagnosis. GPs won't always have heard of it, but it can be successfully treated.

Viklou
Viklou in reply to Whitesugar

Yes I have. Apparently mine is low but not low enough to be treated 🤔

Never heard of bile acid diahorrea, is it common, and what does the test involve please, I want to go to my gp with all the info, maybe it’s worth looking into, I just feel so exhausted from trying to find a solution 🤦‍♀️

Maureen1958
Maureen1958 in reply to Cimmy

Hi Cimmy, have a look at this and come back to me if you want to ask any questions. Maureen.

gutscharity.org.uk/advice-a...

warnout
warnout in reply to Cimmy

awww isnt this so sad no one seems to solve any thing ,,

I was diagnosed 35 years ago. Actually had the condition all my life, I just didn't know it. I'm now 50 and I completely agree with everyone else. I had a barium meal at 15 and the consultant spat at me " all you have is spastic colon". Of course I had no idea this meant IBS. At work my colleagues could not understand why I was doubled over in pain on the floor of the toilets when my period came. I couldn't explain it, to someone without this condition it seems absurd. There IS more info on it now but I really don't think the average layman ' gets' it. Along with my Hypothyroidism at 16, migraines with aura in my teens, 2 herniated discs from picking up an extremely large woman at 35 and in perimenopause, I feel like a train wreck. I am now looking for a job and I'm sure they will be lining up once they know about all of those! I just feel exhausted- both mentally and physically. 👍🏻👍🏻👍🏻👍🏻

Maureen1958
Maureen1958 in reply to Ham-Mod

There seems to be link between hypothroidism and IBS!

Yeah definitely I’ve been suffering every day nearly for 6 months I’ve had every test and ibs so bad I’ve got ibs c

Hi, yes very much so. I have suffered for 15 years and every day gets worse, so bad that I have tried to end my life. People don't realise the pain you suffer, I asked my Gp for a painkiller and was hit with Paracetamol, waste of time they didn't help at all. It also has me that I'm not fit to do anything and can sleep 24/7. Hope you feel better

Cimmy
Cimmy in reply to rosco1

Hi rosco1, I was in horrendous pain with my IBS and divaticular disease , I kept on at my gp because the paracetamol wasn’t touching it, he relented and gave me tesgemic which is an opiate based painkiller, I was worried about taking them, but they are a game changer for me. There is no reason anybody should be in pain this day and age. Keep pushing for some relief . Take care

rosco1
rosco1 in reply to Cimmy

Hi Cimmy, to be honest I'm fed up asking for a stronger painkiller. I've had a Emergency Doctor at me hundred of times and they seem to be more giving, they give me a injection that helps a lot better, I've even mention that to my Gp and Doctors in the hospital when I've had to go to the hospital and they at me as if I'm stupid. They say they don't know what kind of injection that can be, so I've gave up. Hope your doing ok.

warnout
warnout in reply to rosco1

i need to go through the night to loo a lots of times soon as i wake on come the gas pains it my whits end

Maureen1958
Maureen1958 in reply to warnout

Hi, just read through this post again. Please have a look at the link below. I think you might have BAM (Bile Acid Malabsorption).

gutscharity.org.uk/advice-a...

Please read the above and see it it fits yours symptoms.

Maureen

I've read some of the replies with the symptoms and had similar experiences. I was made to feel that I was a hypochondriac. I went to many specialists, top in the country, like Mayo clinic and changed GPs because of the dismissive attitude. Praise God, I finally found the answer to my symptoms and am currently being treated. I was referred to a lady doctor, who listened to my symptoms, thoroughly reviewed my chart the best should could with limited access, looked at my bloods ( hypereosinophilia-white blood cells, erratic liver enzymes, nodule on lung, and at minimal to severe anemia over a period of 2-3 years. No one asked if I had been out of the country and was dismissed when attempting to bring it up as, "oh, you don't have any of that". I have parasites. Several different ones. They cause either severe chronic constipation or diarrhea. Nausea, weight loss, muscle/ bone pain (like arthritis) headaches, insomnia, moodiness, like anxiety, etc. They can make you skinny or overweight. They take your minerals & vitamins, so you have cramps from vitamin deficiencies. They cause skin problems. Check blood work & before stool test take antihelmetic med.It will cause them to come out and you will know. Hope this helps someone.

I've been told "We all have things we have to deal with. This is just yours." That is so dismissive and ignorant.

It's not normal to suffer every day.

This disease takes up at least half of my thoughts throughout the day. I've had internal and external bleeding, extreme bloat, fatigue, pain, excessive gas, horrible acid reflux (scar tissue to prove it), anxiety associated with food, inability to digest foods, the direct impact is had on your nervous system (as the gut and brain are connected), constipation every day, occasional diarrhea, painful muscle tension/contractions, higher risk for certain cancers.

Then there's the mental affect it has. Anxiety associated with eating, having to be extremely restrictive with what you eat, trying all these medical diets and supplements to feel better, always being worried about the bathroom situation anywhere you go, suicidal thoughts, basing your life around the disease, exercising is difficult, not traveling, missing out on events/parties/life in general.

It is so much guess work and doctors visits and money and hopelessness and testing and embarrassment and loneliness. I may look normal and "healthy," but I am not. I don't want to be alive like this.

It is debilitating. You are being controlled by your body, and it feels like your body is trying to kill you. People do not understand that.

I understand it’s hell pain sickly no appetite and the rest I just feel like I’m getting on my family’s nerves keep going on about ibs and my pain cause no one understands till you’re going through it . Just want my life back. Amber

yeah i feel like an extreme financial burden and annoyance to my family

You're family shouldn't make you feel like that

omg so true

It’s hell been sick for 5 months now I just want my life back

Yes, all the time

Oh yes. I have so much pain with my Ibs. There are some people claiming disability benefit because their Ibs is so bad. Although mine is quite controlled the pain is still really bad. It can be excruciatingly painful too. I also hate the constipation and loose stools, and I'm mortified nowadays as I cannot control the wind. My Ibs just wipes me out most days, I'm just struggling to maintain any semblance of life. It has me scared to eat food a lot too as I just can't win no matter what I eat. My absolute is roasted vegetables. This just flies right out of me these days. Anything apparently good for you just gives me diarrhoea. Ridiculous 😞🤔

Has anyone ever been given the impression that their doctor isn't taking them seriously because they are female? I know that a lot of men also suffer from ibs, but it is still seen as a predominantly female condition. I was just wondering whether this has been a factor in how anyone on here has been treated, or do you feel that this doesn't make a difference?

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