Anyone diagnosed with IBS needs to appreciate there are no rules of engagement. IBS is a generic term use when nothing else fits. Hence any rules only apply to a particular set of circumstances and we don't all have the same circumstances to start with. To get on top of IBS you need to cut back to food and fluid you can mildly tolerate, it may also mean the quantity has to become minimal as well. For those of us with extreme cases it becomes very difficult to achieve, but achieve it we must. You can not start rebuilding the gut from half way, in severe cases it is all or nothing. Fodmap is the usual way to start, but it is not for everyone, as I found. For me it came down to water and a one egg omelette was mildly tolerable, and you do get tired of it as well. Eventually I was able to introduce small amounts of cheese or ham into the omelette and then another egg. Slowly introducing other foods in very small amounts so as to keep any reaction as small as possible. This is not an over night solution, it is a long term in the months and years to get to where the gut flora has changed and you are able to eat more varied foods and more volume. I'm many years on I'm still only eating smaller portioned meals and only one and a half meals a day. Instead of 3 meals a day try eating small amounts more often during the day, what most people call snacking. Limit physical exercise as much as possible as this also can stir up the yeast in the gut.
Your journey is likely a life time trip, one you shouldn't deviate from without first considering the consequences of the deed you are about to commit.
It isn't going to be easy and there are no short cuts that I have discovered, other than fecal transfer, which is usually not offered. In my situation I had to try and find a balance in the gut flora as I had been left with a yeast prevalent gut. Hence the severe bloating and reaction to anything thrown down the gut. I tried a lot of weird and wacky things but it all came down to stripping back what I ate and drank to the very basics before starting the long slow rebuild. There will be many set backs you have to deal with, but this builds up a list of foods you can tolerate, always adding to it as you go. It takes desperation and determination to get on top of IBS and you will never cure it fully, but you can get to the point where most foods are tolerable and some of the foods you don't tolerate can be consumed is very small amounts very occasionally. When you find the right foods for you stick with it as you are only one bite away from relapse.
A word of warning; probiotics are not the magic pill some think. Depending on your circumstances there needs to be a plan in place to use them. The yeast in the gut loves them and they cannot survive in the gut without food they live on, so consider a prebiotic which is the food for probiotics. Willy Nilly firing probiotics down your gut in some circumstances will only make the yeast so strong it is almost impossible to establish a balance in the gut flora without severe measures.
There can be light at the end of the tunnel, just be determined to succeed and give it your fullest attention.
And I really like that you mention the need of initial food intake reduction.
As i am part of the IMBS (Intestinal metabolic bromhidrosis syndrome) patient space, our cases have the additional aspect that our bodies begin to emit a strong body odor years before IBS (irritable bowel syndrome) symtoms can set in.
But what we discovered in a pilot investigation is that there are hints of a mitochondrial impairment in intestinal barrier cells and at the same time impairment of the urea cycle with signs of elevated ammonia levels.
In fact blood analysis in those cases can reveal slightly elevated ornithine levels and up to 10 times elevated citrulline levels in urine compared to the maximum barrier of normal ranges. Also the glycine, serine, tryptophan levels tend to be at maximum ranges or slightly above then.
The neuronal/nerve functions will fail in those cases due to the ammonia influx and result in IBS-C symptoms with classical spastics, hypersensibility and a swelling of the intestinal wall typically in locations with higher water resorption like in the sigma of the colon.
Without the reduction of protein intake there is no way to reset the impairment beside medical treatment with the standard treatment for hyperammonia (oral sodium benzoate).
Also in those cases eating the wrong foods can again impair the mitochondrial function for days.
Elimination diet is really a good start here, but still at the end it is extremely difficult to achieve overall good outcomes at the end.
I sort of agree. I also found that nothing works in isolation. I was advised to clear my gut of fermenting foods by doing the low fodmap diet for a month and then reintroducing the food groups one at a time to find the worst offenders. At the same time however I addressed the gut imbalance by inhibiting the 'bad' bacteria with herbal supplements - I tried most of them - prescribed and then mycopryll, Candea and finally settled on oregano oil capsules one a day. Then I took prebiotics - I found psyllium husk worked best. Probiotics worked once I had gone through the first stages. I vary them between Zenflore, Biokult and Alflorex and I've changed to some soil based expensive ones occasionally to expand the strains. I use coconut based kefir once a day as well. In the beginning when I had a lot of gas, bloating and inflammation I used Buscopan but I have c and not d so Senocalm has been better for me. Once you have followed this basic protocol it can give you a base to find which things work for you but just taking one kind of pill rarely works.
Thank you so much for your post. You have done so well to achieve what you have. I completely agree with what you have written. After a very long time with IBS-C, trying every supplement under the sun, I am now trying to be so good with my diet, making my own Kefir, (I really enjoy it, it’s my treat every evening, and so far has been so helpful to warn off eating unhealthy foods, which I do love!!) Wishing you continued success x
I have had IBS for over 30 years, I have has tubes out in places they should not be put had X-rays scans you name it they did it then to be told you have IBS and sent on my way. I struggled on and off for years, having bouts when I could not get out of bed, going from diarrhoea to constipation. Then it was notices each time I drank a glass of water from the tap I would be sick witching 5 minuets so I went out and got some bottled water, volvic bottled water if I remember right but that still hurt my stomach down the right side under ribs, so with me being tight fisted I got a bottle of cheap water from Aldi and as I drank the first glass full it felt strange as there was no pain after and I noticed I liked the taste. On talking to my dietitian and doing research I found that water companies add fluoride to the mains water to kill any bugs in it, a lot of people can’t tolerate fluoride, people with IBS get up clean their teeth and rinse with tap water so are getting a double hit of fluoride. Aldi changed there supplier and the new water affected me so I contacted the company that used to supply Aldi (sheply springs in Yorkshire)and they gave me a list of where I could get their water Sainsbury Iceland’s act, they also told me they have a lot of people with IBS who find their water helps but they can’t tolerate water from their sister company as it comes from a different source. I still have flare ups from time to time, I had a bad flare up last week I had the dreaded sweet corn, why I don’t know I was feeling well I guess but IBS soon reminded me that it don’t tolerate fools kindly.
Thank you for your support. In my journey through IBS I've had it all and still fight a tuff battle against it. I don't know of many people who would have had it so severe they could not eat or drink for weeks. The good part is I lost excess weight and some, if I turned sideways you'd miss me. There were days and weeks of wishing to end it all, it was so unbearable. Then to have CKD thrown into the mix and subsequently Diabetes type2 really shattered my world. Panic seems to be too kind a word for the devastation wrought on me. It was so unfair, the world owed me, well that was part of the thinking at the time. Nothing but a load of BS, nobody owed me anything, I owed it to myself to get off my rear end and do something about it.Determination to prove the medics wrong kept me going. I don't have to live with it, no ones going to tell me what I have to or not. IBS was given to me through a particular set of circumstances which I believed could be undone.In the last few days I was the first person to respond to a suicide attempt of my friend, something I thought would set my IBS back with copious amounts of anxiety and stress. I succumbed to temptation and tucked way one fried fish and chips embellished with salt. Damn that felt good. All on the fore bidden list only to be consumed very occasionally and of small portions only. I went full hog filling the gut to busting. Comfort food you can call it, but then to wait for the flare up which normally hits when the diet is broken. Two days in and no sign of a flare up, nothing from the anxiety nor the fish and chips. I'm finding it difficult to believe to be honest. Have I come so far that a possible end is insight, or have I just been lucky. I don't know, but I'm cautious and not yet ready to accept my IBS has changed. For sure it will never be cured but to be able to control it to some degree, that's powerful. It renews my determination to self manage my health issues. No more accepting I have to live with anything they tell me I have to. While I cannot cure some of my health issues I can at least slow them and be more comfortable in the process. I firmly believe we can do anything if we want to, all we need to do is figure out how, then set our minds to it with absolute determination. I always wonder at people who say they can do what ever, how on Gods good earth do you know if you don't first try, beats me.
My hope is that anyone starting out on the IBS journey takes note and applies themselves fully to getting on top of their IBS. A half hearted attempt will only prolong it, at your cost.
This site is the best place I have found for help and insight. Read and research then make an informed plan forward, don't just grasp at the first magic pill, there isn't one.
It's rough, it's tough and death looks so inviting, but stick it out, you can win, there is hope for something better.
Incidentally I filter my own tap water, I have never liked the taste of water, chilled it goes down a treat.
You are right about diet. I've had IBS for 45 yrs. I am intolerant to all dairy/lactose, yeast, sunflower oil, eggs and dextrose. That eliminates a huge portion of my diet. I cannot eat fruit either. I have whittled down my diet and now I am limited to eating farleys baby rusks for breskfast, chicken, beef or fish with half a kilo of baby carrots for dinner, tinned plum tomatoes mixed with tilda basmati rice for lunch. It's boring having the same things every day but at least it's mostly stopped the stomach cramps and the runs. I have another autoimmune condition and I'm on lots of medications which all contain lactose which is not good. I wish pharma companies wouldn't use lactose as a filler when it's known that many people now are intolerant to it.I had a short stay in hospital a few years ago after having a small stroke. There was absolutely nothing they could give me to eat. They didn't cater for anyone with dairy intolerance or IBS! The menu was macaroni cheese or stew or the vegetarian option was cheese salad.
I remember rusks fondly, even went back to them to get food into me. Sadly it didn't matter what I ate, same result back at the start. It is hard enough dealing with CKG, diabetes dietary requirements now let alone the IBS and arthritis. To have lasted 45 years with IBS and your dietary requirements is a tremendous achievement. An indication of how determined you are to survive, regardless. Congratulations. I always look at my time in hospital as a time to adjust my weight. My wife tells me when I start complaining about the food and service I'm ready to check out!
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