Anyone have similar symptoms or advice. - IBS Network

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Anyone have similar symptoms or advice.

13 Replies

Hello all. I was diagnosed with IBS about 5 years ago based on symptoms alone, no tests given just an ultrasound and bloods. I suspect it was triggered by a diet which turned into anorexia or a hysterectomy.

I have usually had both IBSc and IBSd, both pretty much as bad as each other.

However, recently I have being having IBSd regular as clockwork every two weeks. I eat a high fibre diet and drink lots of water, otherwise I would have severe constipation, as a result I go very regular usually, not at all some days and up to5 times other days.

No foods seem to trigger it. I tried lactose free diet, dairy free, caffeine free diet, bran and wheat free, gluten free diet, processed free. I ate very healthy, ate probiotic yoghurt and supplements, peppermint tea, herbal tea, brat diet, fodmap, did have to stop eating golden linseed as it was making me too regular. Worked like a colonic irrigation.

Each time I have ate different things on the day in question. Happens every two weeks without fail. Get the the gurgling noises in stomach, followed by severe lower stomach cramps which only ease off after the diarrhoea comes and severe sweating, and a feeling that I am convinced I am going to do an Elvis and die on the toilet, my diarrhoea, which, sorry to be disgusting, fills the toilet bowel to the top. I have about 3 - 4 episodes and then everything is pretty much ok apart from sometimes a severe right groin ache which I have been told is IBS. One time the groin pain spasmed so bad I had to go to hospital for morphine. Weirdly, the groin pain is where i had severe ovarian cyst pain and is similar but I had a total hysterectomy 16 years ago so I don't have ovaries.

Oddly enough before the diarrhoea starts I always have a normal bowel movement and then I have to sit and force the diarrhoea to come as only then will the cramps ease. My family get scared when they hear me screaming in pain.

Last night I had the diarrhoea and cramps, today just a little niggly gurgle and ache in stomach.

I am not stressed and no food seems to be triggering it. I also suffer a feeling of fullness in the rectum, like having a tennis ball up your bottom and only way to ease it is to force myself to have a bowel movement which gets rid of it for a while. Does anyone else suffer like this?

Doctors just tell me to live with it or get a hobby. After an episode I feel exhausted and drained and depressed.

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13 Replies
lynne25ukuk profile image
lynne25ukuk

Unfortunately it all sounds pretty normal for ibs d. Fibre is not your friend when you suffer with this. A little every now and then is sometimes ok. It doesn't say if you drink or smoke but there no nos.

No not a smoker, never have been, as for drinking, one glass of wine with Sunday lunch.

I'm so sorry to hear all that you are suffering. My IBS by comparison seems minor but instead of having relapses, mine is with me all the time. I have gas and bloating which when really bad causes stomach problems as well. I too have had a total hysterectomy (4 years ago) and after the op I had severe digestive problems which eventually went away until last year when the IBS started. I also had acid reflux and gastritis when I went through my natural menopause. I was convinced there was a link between the loss of estrogen and what was happening to me, but try telling this to a Doctor! After much research on the internet, I found an American site called 34-menopause-symptoms.com and it is well worth a visit. In there I found not only the answer to other distressing symptoms caused by the menopause but also a section on the "Causes of Digestive Problems". I have also noticed since my hysterectomy that my mind and body no longer cope with too many demands being made of it and I easily become stressed and anxious, which I believe was a major trigger in my current digestive problems. I try to stay positive as I think in my case the IBS is here to stay. As much as possible I try to avoid medication as I've tried everything and whilst it helped initially, I don't find much benefit from it now. I avoid wheat where I can and eat little and often instead of three meals a day which helps when the symptoms are more severe.

MarkBrennan profile image
MarkBrennan

Hi,

I have alternating C & D but with no pattern - yours makes mine sound like 'a bit of a tummy ache' (although it is far from!)

There is one thing I have seen a few times, for some reason, only women can take it - which makes me think it might be oestregen linked?

Anyway, the possible side effects sound horrendous, but itis something you might want to look into. lotronex.com/

Hi

I can totally relate to what your saying. I have IBS -C which occasionally turns to D. The thing I cannot cope with anymore is the severe stomach cramps just like you described its like been in labour, the pain is that bad that if someone gave me a gun I would not have second thoughts in using it! I have been told I have IBS which I first suffered from at 17 I am now 40. I have not had a single test, until recently, they gave me a blood test which came back clear. I have now been offered a Colonoscopy but so many people have put me off I am going to cancel and live with the pain. The worst part now is the anxiety and depression I can no longer go out for a meal as I can only eat a small amount. It is nice in a weird way that other people can relate to what we have to go through.

Hi Fizzfairy,

If I were you,there's no doubt I'd be back at my GP surgery demanding tests and/or an appointment with a specialist. Once you've got a diagnosis of 'IBS' (ha!), you really have to fight your corner to get any medical help - threatening to camp out in the waiting room sometimes gets a result.

Although FODMAPs (with many additions) works well for me, if I step off it slightly, it takes me a week to get back to 'normal'. During that time I, too, used to have to bear down really hard to empty my bowel although the result would still be a very loose stool when it finally arrived. However, I recently discovered that, when that and/or the tennis ball sensation happens, by using a glycerine suppository (which makes the bowel muscles contract), everything that's stuck gets expelled in one go along with the pain and wind (stomach gurgling). Might be worth a try.

Have you read the post by Ibsr on 28/06, entitled 'Interesting article...may help some.'? I'm following up what I read there as I think it's more than interesting.

Pagan

Thanks for all your replies everyone, I think of IBS as. Cinderella disease. Doctors and specialists are just not interested in finding a cure or the trigger for it. I have seen so many doctors, been told to get a hobby, been laughed at, told to live with it and the last doctor I saw in the casualty dept of the hospital told me to see a psychiatrist or a counsellor.

Will try your suggestions, it does feel comforting to know other people are having this horrible disease and you are not alone.

Although I swear I will lamp the next doctor that says to me it is not an illness it is a functional problem.

angbri profile image
angbri

Well I have gone through alot of what your explaining but not quite to your extreme, but could literally eat nothing or it would be painful trips to bathroom & horrible cramping. Well no dr or specialist cared to help, I got with a naturopath dr (never did before) well in one visit she did more for me than any dr & spent an hour n half with me. She claims nobody should live with this, something is causing it. I did all the bloodwork & samples, everything was good. She had me get tested for SIBO (small intestinal bacterial infection) sure enough my levels wer extremely high! Went on antibiotic, probiotic & special fodmap diet, I'm not 100% yet but holy cow am I doing better!! It takes time to heal your stomach back up from that bacteria. You have to stay strict on diet to kill off all the bad bacteria, antibiotics alone can't kill it off 100% so staying on diet, your not feeding the bacteria. I'm 40 & have had this for over 20years, so it will take about 6months of helping digestion with right tools & staying away from food that the bacteria can live off of. Please think about this, everyone is different but it's a start to see if you might have. My dr says this goes undiagnosed in alot of ibs patients. contact me anytime.. It has changed my life & im heading in the right direction. If I can just help one person! I would be so happy & blessed to :)

angbri, so glad things are looking up for you now and getting better, it is such a horrible disease. Where I am in the Uk naturopaths are virtually unheard of. I have heard of this bacteria and the breath test but it is not something doctors here are willing to go for in my experience. I have a fear of antibiotics because my IBS does not like them and I can guarantee I will have two weeks of ,insert after I stop taking them.

It is certainly something I will keep in mind should any naturopaths pop up in my locality and it makes me wonder how many of us are suffering because of this bacteria. Thank you for replying and so good things are turning a corner for you.

in reply to

My gastroenterologist recently referred me for a SIBO breath test here in the UK. Not all hospitals do it, but many do. You can also get breath tests for lactose and fructose malabsorption. It's worth pushing for these.

Sammi7 profile image
Sammi7

Hi there

I suffer with some but not all of your symptoms but I have been seeing a very good specialist. He has told me basically fibre is a big no no. I don't eat fruit by choice because I hate the stuff but my specialist also told me that if I ate both fruit and veg he would be telling me to cut one or the other out. I eat small amounts of veg but do find salad better. I tend to stick to soya milk as I find dairy makes me bloated.

sickandsore profile image
sickandsore

My symptoms are not dissimilar, Im just wondering how long you stuck with the low fodmap diet?? it took 4 months before I saw any improvement at all..and even though I feel less bloated when wheat free I have been able to reintroduce some wheat and dairy..but don't go near garlic or onions as know I will suffer..aside from that ive had some relief from the more severe cramps for which I had to take oramorph, since I had my mirena coil removed. a lot of my worsening IBS symptoms I think have been related heavily to hormonal changes, I feel a lot better since that coil went! My main concern really with listening to your experience is that nobody has taken a thorough look at you, that feeling of fullness in the rectum can be a sign of bowel cancer, im really shocked that your gp hasn't referred you to a gastro consultant for a colonoscopy as a starting point to rule out anything sinister. Mine showed up ulcers and after the lowfodmap diet im still getting problems my consultant is doing an MRI looking for possible adhesions..it could be many things causing your pain but you really do need to nag your gp or get a new gp, as I think its awful they are leaving you to suffer and not looking for answers..best of luck x

sickandsore profile image
sickandsore

Oh yeah and to really echo sammi7, eating lots of fruit and veg is a big no-no..i used to eat loads of fibre and since I stopped I rarely get IBSD..

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