Newbie

[Katerina1]

Hello, I am new here. Struggling for some years with IBS. Constant sudden and unpredictable diarrhea, tummy pain, nausea. Also very tired. I have lots of interests and love to get out and about but am so anxious about getting an attack which makes me afraid to go out. Keep tweaking my diet and trying loperamide, codeine, buscopan and pregabalin which sometimes help a little. I don't know anyone else with this condition, so it makes me feel very alone. Thanks for reading this. Katerina1

[hampson]

Hiya. I know it's awful, i feel it to. Suffered since i was 14 and 50 now. Stress is a major factor with me. Also many many foods. I to have tried lots of medications, herbs, diets, alternative things. Nothing seems to work. Only in October i was rushed to hospital for chronic constipation, it was dreadful. I also went gluten free for two years but had no energy and was constantly hungry and lost half a stone. I'm currently taking menopause support, korean ginseng and vit c with zinc and laxadol once a day to keep regular. People don't understand. I wish you all the best x

[Katerina1 in reply to hampson]

Thanks Hampson. Chronic constipation sounds really awful, especially if it's bad enough to be rushed to hospital. Menopause is hard too. Like you I've also tried many medications, different foods, meditation, hypnosis but nothing made any difference. Just try to be prepared now - spare clothing when I go out.

[torcol]

I too have had these exact same struggles. It does indeed effect quality of life in a very negative way. I have struggled for more years than not but have found ways to deal. I never eat before going anywhere early. I know to schedule appointments in the afternoon because I have several “episodes” after my first meal. I have learned to ignore my pain as I know it isn’t life threatening so it’s just a nuisance but I can handle that. My nausea is almost always about twenty minutes after eating and short lived so I manage that too. I block the anxiety or I would never leave the house. I take 20 Mgs of Omeprezol maybe twice a week. I don’t know if this helps but I live pretty normal now by not letting it get me down mentally or physically. I hope you too can find a comfort zone so this does not rule your life.

[Katerina1 in reply to torcol]

Yes, like yourself I don't eat when going anywhere although this strategy doesn't always work. I sometimes take an imodium before going out which can help although not always. I schedule appointments very carefully too which is quite frustrating and must look odd to others. I take prochlorperazine for the nausea which helps a lot. I try to keep moving forward with my life - don't want to waste time. Thanks for your ideas and experiences. It's good not to feel so alone.

[Kilgh]

Yep. That describes me perfectly!

[BabsyWabsy in reply to Kilgh]

Me too!

[Kilgh in reply to BabsyWabsy]

Seems weird "liking" that though. lol. They need another option on here. Like a "commiserate" button.

[BabsyWabsy in reply to Kilgh]

Yeah, it is a bit inappropriate.

[Maureen1958 in reply to Kilgh]

Yes, I keep thinking that too.

[one-n-den]

Hi Katerina,

Sorry to hear that your IBS is getting you down. It’s a very ‘controlling’ condition if your lifestyle doesn’t allow you to manage it.

I don’t know your full circumstances (work, family etc) so apologies if none of my suggestions are workable.

I have had IBS for 40+ years, but it has come and gone in intensity over that period.

The most effective approaches I have tried are: probiotics (try Holland & Barrett Acidophilus) to overcome the bad bacteria in the gut, Colpermin to calm the cramps which cause the pain of IBS, and the FODMAP diet (not really a diet - a list of ‘good’ and ‘bad’ foods) to reduce diarrhoea and bloating (oh, all right, flatulence!))

Give anything you try time to work, preferably in isolation from other ‘remedies’.

I very rarely fall back on Imodium if I really can’t afford an episode of diarrhoea - my hobby is diving - stuck in a drysuit for several hours - not good......!)

I hope at least some of that helps.

[Katerina1 in reply to one-n-den]

Thanks for your reply. Diving in a drysuit for hours - that must be a really big challenge. with IBS. Sounds really brave of you. I play in orchestras which can require performing in churches with no loos. I tend to take imodium and work out the nearest place to rush to if necessary. I do try all the different 'remedies' including FODMAP. Mostly I keep buscopan, imodium and prochlorperazine (for nausea) in my bag and spare clothing in my car. Fortunately I am retired so I can mostly adjust my arrangement if necessary. Try not to cancel things, but it does happen.

[one-n-den]

Oh, forgot to mention Fybogel, which I find helps reduce instances of diarrhoea - a lot of people think it’s a laxative - it’s not, it’s a ‘regulator’ of bowel movements. Available over the counter without prescription.

[FerdyOne]

Hi Katerina1, I take codeine phosphate, which does help me but about 5 years ago a doctor recommended golden linseed (soluble fibre) as well. I take a spoonful with some muesli every morning. (You could take it three times daily.) He also recommended seeking out other 'soluble' fibre foods, like for instance Rye crispbreads as replacement for bread when possible.

[Katerina1 in reply to FerdyOne]

Thanks FerdyOne. I hadn't heard of golden linseed and will look it up. I don't get on very well with soluble or insoluble fibre although try to go more for soluble fibre. I do have two spoonfuls of oats every morning. Not sure whether they help. Not eating too much bread might be a good idea too although I tend to fall back on dry toast during a flare up as it's all I can face.

[lucylily]

I feel for you. I have had IBS a long time but only recently been given a name for the condition. I have had all the tests and have been assured I am otherwise healthy. It is a nuisance but I can manage it to a point. I take ompraxole daily and lopermide every other day but more frequently if needed. I also use buscopan if things are bad. I take iron tablets as frequent diarrhea can prevent iron absorption making me tired. Anxiety makes it worse but you can learn to manage it in the way that works for you. Good luck.

[Katerina1 in reply to lucylily]

Thanks lucylily. Loperamide and buscopan are lifesavers for me. You are right, anxiety does make it worse. Glad you have found positive ways to try to manage things. I had a flare up over Christmas, but having a lovely week not with a settled spell.

[Kk1987]

When I first had ibs diagnosed I was in my teens and soon after realised it is a game changer for social life. You will be suprised these days how many people have it and people do understand if you have a reaction. Mine is tomato’s, stress and strawberries! Have you tried Low FODMAP diet? Takes a while for your body to adapt ie daily ibs but I’m hoping it will help me! If you feel anxious a low prescription of anti depressants helped me. I’ve come off them but don’t let yourself become trapped because of it. I tell myself and sometime look online where the toilet is where I’m going (sounds pathetic) but it puts my mind at ease. How long do you “bouts” last? From tummy pain to going mine if 10mins. I think if I can cope at home I can cope out. I take earphones and listen to headspace app whilst in the loo! Helps me breathe, may sound like I’m giving birth to the person next door but I don’t care anymore! Embarrassed yes but you have to put yourself first!! Hope this helps. Therapist are good for anxiety too x

[Katerina1 in reply to Kk1987]

Hello Kk1987. Thank you for your thoughts. You are so right - tomatoes, stress and strawberries, all to be avoided. Maybe people do understand, but I do find it hard to say anything. Yes I have tried low FODMAP and try to avoid high FODMAP foods. I take pregabalin for nerve pain which is also prescribed for anxiety, so hopefully it helps for both. I had the low prescription antidepressant but it didn't mix too well with the pregabalin. Just like yourself I look up where all the toilets are which helps a lot. Only a few minutes to make it though when the tummy pain starts. A bad bout can last a whole evening but can be just a few minutes. Makes planning difficult, but just do the best I can. Have always managed somehow.

[Kk1987 in reply to Katerina1]

I’ve just scrapped avoided white wheats like bread and pasta and it seems in the past two day my toilet troubles are lessening. I’m finding with IBS D stodgy food help. But hey everyone seems to be ever so slightly different xx hope you’re ok!

[Bellyboy13]

Hi I’m new here too, but had IBS 30+ years. I’ve tried probiotics and didn’t work for me. I do get some relief by drinking Kefir, a yogurt type drink the Polish use. It’s only just over £1, so a cheap way to see if it helps any Polish shop sells it and some Tesco’s. Peppermint tea can help and peppermint oil tablets. Unfortunately everyone is different and you do have to try & see. I avoid spicy foods, although I love spices...we have to see if there is any trigger foods. Anxiety is a major cause and I use propanol(beta blockers) if I am very anxious or stressed. Your GP can prescribe if necessary. Buscopan and mebeverine do not help me with pain. I just take paracetamol. If you have the runs, pain killers with codeine can help as their side effect can cause constipation, which is a plus in this situation, but don’t allow yourself to get constipated as this causes pain too. Fybogel is good if this happens and tastes ok in orange flavour. I use a hot water bottle on the pain in my abdomen. I have just heard of Bile Acid Malabsorption and I am seeing my GP 14/1 to check and see if it’s possible to try medication for that...it may be the cause of my symptoms, which yours sounds similar. Try your hardest to accept you have IBS, it’s crap but it’s not life threatening. We just have to try our best. I use Imodium if I go on a long flight sometimes and then I don’t have to worry. See a therapist if you need some support and remember you are not alone, SO many people have these problems. I just go in the nearest pub and pretend I’m looking for friends and use the loo if I’m having an emergency, most people don’t even notice. I’ve just started CBD oil as many people have said it helps, it’s too early to say if it will work for me. Good luck.

[Katerina1 in reply to Bellyboy13]

Hello Bellyboy13. Kefir is interesting and not something I have ever thought to try. Like you I can't tolerate anything spicy, in fact my diet is really dull and bland with things that seem to be safer. I can't cope with fruit either which doesn't feel very healthy. Yes, I've had the constipation from codeine. It was a nice break from the diarrhea but not worth the pain. I tend to fall back on imodium and buscopan at the moment. Good luck checking with Bile Acid Malabsorption. I think the prescribed bile salts do help some people. I had the SEHcat test, but it was clear so it's back to probable IBS. Good idea to make for a pub for a loo, especially if it is busy. I know all the places like department stores. I did have some sessions of hypnosis and CBT and found the support helped, however coming on this site has shown me that there are many other people coping with IBS long term so it is not just me. Like you say, just have to do our best.

Interested how you get on with CBD oil. I have read about it but have not tried it.

[Bellyboy13 in reply to Katerina1]

Good luck and if I get some relief with CBD I’ll let you know. It does help knowing we are not alone. Happy New year

[Hidden]

The key to winning against IBS is in nutrition. Let me explain:

I have a theory that explains the cause of IBS and why it becomes chronic. I also have a proposed cure that doesn't involve chronic use of medication. Some will laugh but that's ok.

I believe that IBS, both C, D, and A are related but work differently. IBS starts with a vitamin and mineral deficiency, not a specific vitamin but a generalized malnutrition. This damages the nerves and lining of the gut. The nerve damage is called neuropathy.

In IBS-C (constipation predominant), some intestinal nerves are not working at all, while the ones that work are trying to carry on the peristalsis job, causing spasms and an inability to "evacuate", as peristalsis only works in a proper wavelike pattern. In this version of IBS, the intestinal lining is not severely damaged, perhaps not at all, just the gut nerves. This version responds to laxatives to some extent. If the nerves are severely malfunctioning, even laxatives don't help. No motion will take place and fecal matter will only empty the intestines by virtue of being pushed out of the way by food arriving from the stomach. Bulk forming laxatives inhibit nutrient absorption, in particular psyllium husk. In the long term, laxatives will make malnutrition even worse. Probiotics can help by breaking down the stool material further, making it easier to pass. Sensation of constipation explained: You get constipated because some nerves don't work and won't move the fecal matter, but you get the sensation that you need to go to the restroom because the nerves that work keep getting stimulated by the fecal matter that is not moving. The resulting stool can be segmented or pellet like. Segmentaion/pellets are caused by the few functioning areas in the intestines that actually produce contractions, therefor cutting the stool in pellets or just segmenting it. The stool won't move and its stuck there, and will only pass when another stool from behind pushes it out. This is why you feel bloated or have a sensation that you have not fully evacuated, because you haven't. Now lets move onto IBS-D.

In IBS-D (diarrhea predominant), both the nerves and the gut lining is injured, weakened, or damaged. And the damage is MUCH MORE severe than in IBS-C. As a result, you will see normal stool followed by watery diarrhea, or just diarrhea. The reason why you might see normal stool followed by watery stool is simple: the normal stool puts pressure on the intestinal wall, irritating it, and causing diarrhea. So you feel cramps from the malfunctioning nerves, and diarrhea from the irritated gut that cannot absorb water. Now let's move onto IBS-A.

IBS-A (alternating between Diarrhea and Constipation). This might perplex you. How can someone have both diarrhea and constipation? The answer is simple and its actually a variation of IBS-D. This form of IBS is actually a midpoint between IBS-D and IBS-C. The intestinal lining is not severely damaged but the nerves that control peristalsis are, so they create a sluggish movement. During this sluggish movement, you will experience constipation, but the pressure caused by the dry stool not moving fast enough will injure the weakened gut lining. Once the gut lining is injured enough, it stops absorbing water and therefor creates diarrhea. The diarrhea allows fecal material to pass thru fast and without creating any pressure, thus allowing the gut lining to start recovering. But just as this recovery is barely beginning, solid stool starts to form again, creating pressure again and injuring once again the intestinal wall. Once the intestinal lining is injured again, water is not absorbed, and diarrhea comes back. This cycle continues indefinitely, making the disease chronic.

So why do some people benefit from laxatives and probiotics?

Laxatives help with constipation, there's not much mystery there and I won't elaborate. But probiotics help in 2 ways: 1) they fully digest the food so its not so solid, helping with constipation, and 2) probiotics compete for space with the bad bacteria. Bad bacteria injure the intestinal lining, therefor causing diarrhea. By keeping the bad bacteria under control, diarrhea is diminished.

Why is this disease chronic? Why won't the intestines and nerves ever heal?

The answer is simple. Like I said, IBS starts out with some sort of malnutrition. This malnutrition causes injury to both the intestinal nerves and gut lining. To heal these nerves and lining, the vitamin and mineral deficiency must be corrected. But it's not possible to correct this malnutrition for the following reason:

In all 3 forms of IBS, you will either experience CONSTIPATION or DIARRHEA, or both alternating. Both are bad for nutrient absorption but in different manners. Diarrhea is obvious: The food is just passing thru the intestines very quickly. Nutrients don't get a chance to be absorb and go right out into the toilet. Constipation is different: the food dries out excessively from the sluggish intestinal peristalsis, forming a dried out bulk that will not release any nutrients for absorption.

So why can't we just take a vitamin/mineral supplement to fix this?

Well, we can, and it will help a little with IBS-C, maybe IBS-A and not at all IBS-D. Since in all 3 versions of IBS absorption is compromised, oral supplementation is a poor solution. But IBS-C is the better of the bunch since some absorption might take place before the stool dries out excessively. Yet in IBS-A and IBS-D, there is too much gut lining injury for significant absorption to take place. Furthermore, in IBS-D absorption of nutrients is so minimal that vitamin/mineral supplements just get washed away by the chronic diarrhea.

So if supplementing won't work, what can be done to restore nutrition?

I have a solution but there is a big problem. Nutrients must be delivered to the blood supply directly, bypassing the injured and malfunctioning intestines. This can be achieved in 3 ways. 1) IV infusion, 2) Injections, and 3) Sublingual supplements. This is the solution. The big problem is this: I have researched extensively to find injections or sublingual tablets that can supply all 29 vitamins and minerals. Unfortunately, there are no injections or IVs to my knowledge that supply all 29 nutrients. There are B-complex injections. But that leaves vitamin A, C, D, K, and all 16 minerals out. That's a total of 20 nutrients left out. Being deficient in 20 nutrients is still a problems. There are individual injections of vitamin A, C, D, magnesium, zinc, selenium, copper, manganese and chromium. That still leaves 7 minerals out. Being deficient in 7 minerals is still bad. Most of these injections are available in the U.K. only. So you will need to move to London just for a few minerals. Many of us have heard of TPN, or Total Parenteral Nutrition. No doctor will ever prescribe TPN for IBS. I found one company that makes sublingual vitamins as it's main business. It's called Frunutta. Their web address is Frunutta.com. They make supplements that are sublingual and absorbed via the blood vessels in the mouth. So you don't need to swallow. But their selection is very limited and does not cover all 29 essential nutrients.

If anybody has any information of complete supplementation of all 29 nutrients via injection or sublingual tablets, please let us know. If you have IBS, regardless of which kind, you will have some sort of malnutrition that is not correctable orally, and this in turn will not allow your intestinal wall and nerves to heal. Its a vicious cycle that never ends and gets worse.

If injected or sublingual nutrition could be found and used, mild to moderate IBS could potentially be cured. Severe IBS were nerve neuropathy is too extensive will not be cured but potentially improved. With nerve neuropathy, resupplying nutrition will cause paradoxical symptoms that will mimic the disease and appear to be making things worse. Basically, you get worse before you get better. This is my opinion on what causes IBS, and how it can be cured.

[Katerina1 in reply to Hidden]

Hello m7m2018. Thank you very much for your detailed reply which makes a great deal of sense to me. I have an autoimmune disorder which has caused a form of neuropathy in terms of damage to small nerve fibres causing burning pain in my legs. Doctors tell me the damage can not be repaired. It makes sense to me that the co-existing 'IBS' is also the result of neuropathy in my intestines. I have wondered about the nutrients methodology which you describe. There is a little bit on the internet about the link between neuropathy and IBS but perhaps it is a new idea and may be researched more in the future. I am not sure that most doctors are very well up on this. Perhaps as you say, London would be the place.

[Hidden in reply to Katerina1]

Yes, the link between nerve damage and IBS is new. People with IBS are more likely to suffer from carpal tunnel syndrome, which is damage to the carpal nerve. But Katerina1, I want to tell you this. Don't assume that nerve damage from autoimmune disease and lack of B-vitamins are mutually exclusive. You can have both. When you have nerve damage like you do, the best thing to do is to keep those nerves healthy and nourished. The thing is that people with IBS tend to be malnourished. When you have diarrhea everyday, you just don't absorb all the nutrients. What's worse is that any new symptoms you might have, you will simple attribute them to your autoimmune disorder, which could cause your problems to become permanently worse. What I tell people with chronic diarrhea is that they are likely malnourished and supplements like Centrium are simply not absorbed. What's even worse is that supplements containing Iron and Vitamin C can make diarrhea even worse as these two nutrients are very irritating to the intestines. You will need either sublingual vitamins or injections. Injections are expensive. You mentioned the burning pain. That's common with B-complex deficiency where neuropathy is present. Suppose for one minute that half of the burning is being caused by the deficiency and half by the autoimmune disorder. We know you have IBS-D, which makes you a "candidate" for nutritional deficiency. I thinks its worthwhile to give it a shot and rule out nutritional deficiency in your case.The worst thing that can happen to you at this point is having two conditions attacking your nerves. Here's a story about this lady that had neuropathy, including burning pain, and it mostly resolved with B vitamin shots: onusiv.com/currents/2016/8/... I'll keep in touch Katerina. I'm getting my first shipment of sublingual vitamins tomorrow. I can't wait. I think I'll make a YouTube video and post it here somewhere if I have time. People on this website often know more than the doctors and that's help me a lot make some good decisions. Otherwise, on my doctor's advise, right now I would be at the psychiatrist's office being treated for my "anxiety" problems. Anyway, check out this website if you would like more information on sublingual supplements:

frunutta.com/collections/ou...