I've been dealing with IBS for around 30 years now. Have tried most diets, supplements, teas, shakes, exercises, even meds. I've kept food diaries, I've had up scopes and down scopes. I've tried massage, chiropractic, hypnosis and healing prayer services. The only thing that has helped at all is Librax but the geniuses at Medicare think I'm too old and feeble to take it - fall risk and all that nonsense. We've spent 10s of thousands trying to find a practitioner who can help me. It always ends the same - with me being disappointed as I tend to get about 20% better. Then two weeks later it starts up again.
My IBS is weird. It isn't really D or C - it does alternate, but mostly it's cramping throughout my GI tract from the start to the end of it. I always start the morning w/ GI cramping and am in the bathroom 2-10 times. I do know that stress exacerbates it, and I don't eat food that I haven't made in my own kitchen.
I try exercising daily but don't get much relief from that either. I have an underlying adrenal gland issue and sometimes I'm too worn out to walk, which makes me feel pathetic.
Sorry to sound like I'm whining, I guess I just need to know that I'm not alone. Thank you.
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OldgalwithIBS
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No, you are certainly not alone but it's still very miserable for you.
And you have tried everything. I can't imagine what else you could try!!
The one thing (in my own case) I have learned about my own IBS is it plays a cat-and-mouse game with me.
I can be fine for ages, and not do one thing wrong...not change any food that normally suits me, etc. Yet suddenly the IBS will come back for no reason I can understand.
I just had a pretty normal winter, since about last October or something. with only slight ups and downs, perhaps from trying a new food to add to my vegetable list. But always OK again in one day. So months of being quite steady. I had a practitioner working with me, and I had to "fire her" because I was so much better! Of course that was friendly and she was pleased I felt better.
Now the last few days my guts have turned to mush again...I'm exhausted...not getting enough sleep....etc. And simply no reason I can think of as to why it has suddenly come back. I have been careful with foods and haven't had any sudden stress.
I go walking too, but my lower back aches much more when my IBS is worse, and so walking has become painful. I still do it but literally cannot wait to get home and just get down on the floor where I can rest, so can hardly enjoy the beautiful sunshine and countryside.
1. Alflorex probiotic (Align in the US), which has been scientifically studied for IBS on a 3 month trial.
2. This may increase food tolerance. If you have any remaining food intolerances ask for a doctor referral to a dietitian to take you through the FODMAP elimination and reintroduction diet. By taking Alforex first hopefully the food intolerances will be less.
3. Alongside try the Nerva gut directed hypnotherapy app or meditation or mindfulness techniques (plenty online or YouTube)
Thank you so much for all of this information! I have actually tried Align, here in the US, and it did nothing. But I did find another probiotic that helped and will get that back in place soon. I've also done the FODMAP elimination diet with very little success. But I will try the Nerva gut program and see if that helps. Thanks again!!!
Firstly, I apologise for the length of this response!
I empathise with you entirely- I have had IBS-C for ten years now which, I’m hoping, is responding to a new approach! By the way, I’m 4 years older than you, and like you, probably, underwent Colonoscopy and other investigations. My IBS, however was part of a severe post- viral illness, the terribly debilitating fatigue symptoms passed off, mercifully, after four months but left intractable pain and bloating. I do believe that my illness was occasioned by a lifestyle which damaged my gut microbiome.
You say that you have tried everything, which, I’m sure you have. I had no response to ALL the usual allopathic remedies handed out by my family doctor, apart from the occasional relief from peppermint oil. Diets of various kinds have had limited effect- I did develop an increased sensitivity to salicylate containing foods after becoming ill , which has produced considerable problems. I did respond well initially to Linaclotide, the motility drug, but then experienced intractable diarrhoea!
If I was starting out again, I would begin by taking good care of my gut microbiome! Excessive stress and fondness for fine French wines didn’t help! Interestingly, it’s the individual’s, especially with type A personality traits, and a feeling of physical invulnerability, who are more prone to develop IBS!
However, there’s no point in crying over spilt milk, so!:
1) Bifidium Longum for three months, in the form of Alflorex. If that failed, I would not take a product containing several strains because it now seems that studies have shown that, in rats, it produces disturbing alterations to the gut microbiome, as well as abnormal inflammatory markers in the blood. I did try Symprove and VSL#3, but, as I stated, in view of the most recent studies, I wouldn’t try them now. I would accept that many have tried them and found relief, but that represents the difficulty of knowing what actually works, and what might just be a placebo, as probiotics still have an uncertain role in this perplexing condition!
2) I would try Ferrocalm, which contains a novel strain of Streptococcus Thermophilus, developed by a Cambridge Team in England which has show promising results in studies. You have to be careful because this strain releases histamine,as it did with me, and be a problem.
3) Juvia. This is a mixture derived from Barley, developed by Professor JohnHunter in England, and is based on his belief that some types of IBS are due to so- called malfermentation of sugars which give rise to the symptoms of IBS. His studies are very impressive, and more information can be gleaned by reading his booklet, Irritable Bowel Solutions, and can be obtained through Amazon
4) Enterosgel. This is for Diarrhoea- predominant sufferers and has been shown to in clinical to be very effective- I suggested this to a friend who responded that it had changed her life!
5) Herbalism and Homeopathy. I tried the former but resounded badly in view of my salicylate intolerance, but it’s certainly worth a try. This approach also includes Iberogast which has been around for many years. The latter, which I originally rejected as a sham, can be very helpful- I experienced a negative effect which I thought was extremely impressive. I can accept a positive placebo effect, but not one which makes one’s symptoms worse, a phenomenon of which I was unaware at the time, and which I found extremely impressive!
6) Melatonin and Ebastine. There are serious studies which suggest that these might help, but, unfortunately, didn’t help in my case.
Oh my goodness, you've given me so many new ideas to consider. I steered away from allopathic docs a long time ago. My favorite "healer" is my trusted chiropractor and he muscle tests me to make sure I can tolerate meds, vitamins, etc. I so appreciate you sharing your wisdom with me. Blessings from sunny Central Florida!
You make some excellent points. Totally agree re effects of lifestyle, stress, disruption of microbiome as a root cause, and type A personalities! I understand that salicylate problems can be secondary to oxalate issues (often caused by dysbiosis due to antibiotics) and that oxalates, salicylates and histamine are all dependent on degradation (phase 2 liver metabolism) needing sulphate. Epsom salt footbaths can be helpful in this situation (I did find a study supporting transdermal absorption of MgSO4 and I definitely notice the effects.) Although trepidatious, I was very impressed by all the information on the Elixa probiotics site, answers to queries on the FB group and my emails, and I personally had an excellent response to the very high dose, short course of probiotics (which had been preceded by S boulardii). Certainly not a placebo response!
Many thanks for your reply. Oscar Wilde suggested that “youth “ was wasted on the young, which is very true, to which one might add, that good health is also wasted on all those who don’t nurture and appreciate it until it’s gone! Your comment about Epsom Salts is very interesting! Might I please have the name of the study you mentioned and where I can find it? Taking Mg SO4 orally is not an option, presumably, as it’s a very harsh laxative, and little of the Sulphate would be absorbed. I’ll certainly give the foot baths a go once you have kindly furnished me with the study details, or possibly how much of the powder one uses , and for how long the soak should be. Does the study indicate how much magnesium is absorbed? I take the accepted, standard dose of Magnesium Hydroxide at night because of my IBS-C, because of my problems with a high fibre diet, but could stop it if significant amounts of Magnesium were also absorbed transdermally. By the way, I abandoned multiple probiotic formulations as I saw a recent study, carried out on rats, which suggested that they produced very disturbing results in terms of damage to the gut microbiome, and the presence of systemic inflammatory blood markers. Regards
Just ordered the salts through Amazon. I note the general advice is to use it twice or thrice weekly which I’ll do, and observe simple skin measures. Many thanks again
Yep, totally Type A at this end. I've been looking into the oxalate issues. I went on a diet that got rid of them but still didn't get much of a response. I've just started using Magnesium spray on my feet at night - wonder what it might do.
I was the same, I have struggled for about 30 years, then I found out it was the tap water as some companies put flouride and chlorine in it, my gut can’t handle it. We had a water filter fitting in our kitchen that takes all them out, the second I drank my first glass I was like my first drink of nice water in years, even if you drink well water there are so many chemicals put on the fields, run off from roads, people put on garden, and not forgetting a lot of drinking water is water that has gone down our drain that gets treated and sent back out for us to drink. It’s scary when you think of what we could be drinking from our taps, we have had the filter for about a year now, not only has my gut been 80% better my wife’s cough has gone away, I can smell the chlorine in the water from the normal tap now as well, one issue is I have to be careful what foods I pick up as some salads are grown in water, a lot of fruit juices are part water, even cans of fizzy are mostly water, we use filtered water for cooking as well and it’s nice making jelly again, can’t buy shop made jelly as it’s water, I tried a shop one and as soon as I swallowed first spoonful my gut said Oi NO lol
I had a call from my gastroenterologist last Friday, been waiting a year for the follow up call, when I told her she said sound like your gut is intolerant to the chemicals in the water and she was going to research into it more and contact the water board to see exactly what they add.
Thank you so much for this. I haven't drunk tap water since I was a child. Because we live in Florida at sea level we have a pretty extreme filter system. That said, I will look into this and have our water tested because you never know. Thanks again. Best to you!
it’s not very common practice but if you take all the ‘vitamins and minerals’ are you getting enough of them.
Electrolytes are. Important in balance, excess sodium and low magnesium and even calcium can be very detrimental. Then there others like vitamin D what need to be a very least a constant 10,000IU daily as studies have shown for positive benefit.
There’s also things like slight anemia and trace minerals deficiency such as copper, zinc, most people don’t eat adequately enough, you can take supplements also of course but you look at the packets and take magnesium, iron evened calcium % only a fraction of that.
Form my experience IBS is mostly this, a deficiency in somethings, when we record what we eat, what we do and the elemental amounts we actually receive we’d find out we’re all lacking
I think you're right and will look into the deficiency side of things. I see a naturopathic doc who has me on a good number of vitamins, minerals, etc., but there could be something I'm missing. Thank you!
Sometimes compassion is the very best medicine. Thank you for this. I have become a hermit and when I do venture out, I wear Depends because I learned that lesson a very long time ago. Our daughter went into labor late one night - we had to drive 8 hours to be at the hospital with her. I was so nervous for her I literally had my husband pull to the side of the road... and the rest is history. Anyone of the I-4 that night saw a disgraced woman defecating in the ditch. I can laugh about it now... So thank you for your sweet words, Jackie1612. Blessings to you!
your definalty not alone as I have suffered the same symptoms for 30 yrs and still no help of any better only thing I suggest is check again with your doctor as it sounds like you have diverticulitis which I have been now diagnosed with as the main culprit to my bowel problems good luck and take care
Hmmm, very interesting. I don't think I have Diverticulitis because it's never shown up on any of my scans. That said, I did have a GI doc tell me once that most everyone w/ IBS has a little bit of it... thanks for your input.
You mentioned stress which also causes loss of magnesium that can become a contributor to GI cramping. Women need a minimum of 320 mg of elemental magnesium a day, a magnesium supplement such as magnesium glycinate contains 14.1% elemental magnesium so 400 mg of magnesium glycinate contains about 56 mg of elemental magnesium. When your thiamine (B1) levels are low your digestion can become erratic and may lead to constipation. Anti-thiamine factors are enzymes (thiaminases) in foods such as tea, coffee, raw fish and shellfish and chemical compounds such as sulfites or tannins can deplete or destroy thiamine. Search on "Hiding in Plain Sight - Modern Thiamine Deficiency" and "SIBO Thiamine". Magnesium is needed to activate thiamine so a deficiency could impede activation. A thiamine supplement in the form of TTFD and the form of magnesium threonate can pass through the blood brain barrier to reach the brain and vagus nerve to enhance control of the digestive system. When using a separate B vitamin use a B-Complex with it, they work better together. Always consult your medical professional before using any supplement
Excellent point about Mg/B1 interaction. And if stomach acid is low, for a myriad of reasons, nutrients aren't absorbed. I use sublingual B1 and Mg footbaths to try to compensate for this. I know what you mean by 'consult your medical professional.....' However, sadly most will look blank and say it's a waste of time because they totally lack any nutritional training. People tend to be down on what they're not up on.
I've given up completely on allopathic medical "professionals". I'm required to have one because of Medicare, and he's nice enough. He really tries to understand my issues and NEVER pushes things like vaccines on me. He knows my system is far too sensitive to handle those. He has a little nutritional training, but not enough.
Yes, there's been a drive in UK too to remind GPs (family doctors) that benzodiazepines should only be for short term use....very sad if it was the only thing that helped. May be worth looking into valerian which acts in a similar way on GABA, which helps muscular and emotional tension or look into GABA itself. (Trudy Scott in New Zealand is an excellent source of information on this.) Can relate to the too tired to walk for sure! If you're like me, you're in flight-fight mode much of the time (straining adrenal gland as it tries to produce adrenaline and cortisol all the time) and I've had to work hard to activate rest digest (vagus nerve) ...lots of exercises to help this online. You are not whining, and you're certainly not alone!
Yes, the docs in the US are running scared about benzos, which makes sense on some level. I never want to be dependent on them, but boy howdy, they work when I'm in a flare. I will look into the valerian/GABA thing. (FYI: valerian smells like homemade sin to me, I haven't used it often because of that. I do have a holistic doc who thinks outside the box and will ask his thoughts on this. And yes, the vagus nerve is important. Sometimes I get overwhelmed by all the info! Thanks though.
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Can anyone suggest anything I haven't tried? 
How to end a flare up?
DRS 1st Post- Desparately Need Advice!!!
So, so tired of getting so sick
A bit of good news !!
