Witts end with over 2 years of gut problems - IBS Network

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Witts end with over 2 years of gut problems

Riddick123 profile image

Have had colonsoscopy/endoscopy , CT Scans , Mri Scan , Ultrasounds , Xrays. Checked for prostrate cancer , Numerous Blood Tests, 5 different diets. Nothing has been found. Had always been pain free for 53 years , never been to a hospital till this started. 2 diets initially made some improvement but both went backward after about 8 weeks to where i started from. Tried CBD oil (prescribed & reputable ) didnt help 1 bit even on high dosage. I refuse to take prescribed drugs again after they tried me on Amatriptaline which did nothing for my gut problem but gave me other problems. Into year 3 with this and my gut related problematic system list is just getting longer. now beside just the pain i have been experiencing odd bouts of diahorria , Nausea & light headedness , and stabbing pains around the sore gut area. 5 specialists and they admitted they dont know & i have been tossed into the IBS bin , thats it , i appear to be on my own dealing with this. Pretty much at my witts end how to deal with this because when i eat it exasperates the problems , when i dont eat like 48 hrs problem not as severe but its always there regardless , just varies in severity

10 Replies

Hi, I'm new too. What to say, doctors have no clue. But there is a reason they don't. Doctors look for physical damage. Infection, inflammation , lesion, tumor, etc, some sort of damage in their profession. IBS is an umbrella of functional disease, which means there is no damage they can find. It's good news compared to finding out your thyroid is destroyed or that you got cancer. At least that's how they see it. I'm going into year 3 myself. I don't even have pain. The solution to this clearly has to lie in an area of dysfunction doctors ignore. Neurological and-or bacterial and-or something else. Since you're at your wits' end, let me mention some desperation treatments you probably haven't tried: sibo antibiotic combo, nematode injection, fecal transplant... But I recommend trying some more benign treatments first. Relaxation techniques and meditation are always helpful in IBS, for instance. (An indicator of neurotransmitter imbalance, perhaps.)

What I can say with confidence is while restrictive diets can alleviate symptoms in the short term, they tend to not resolve the problem.

Riddick123 profile image
Riddick123 in reply to Dio-genes

Hello Dio-genes. Thank you for taking the time to reply to my comment. Found your info very interesting & possible solutions. Not keen on the latter 2 but the 1st one , SIBO , i hadnt heard of or been told about & when i read up on it , well it made sense. The symptoms described for SIBO were the closest to mine of any i have read up on by far & the PPI which i have been on for 7 years just pit the icing on the cake as far as an alternative treatment , now i just have to convince my GP & specialist we look at this treatment but this has given me renewed hope. Can i ask , you say you dont have pain so what symptoms do you suffer ?

Regards & Thank you

On your different diets did you try the low FODMAP plan? It is not a diet but a way of finding out which sugars you can tolerate. Look at the FODMAP thread, there is a really good app.

Riddick123 profile image
Riddick123 in reply to Judith17

Hi , thanks for the input . I have done the Low Fodmap diet & absolutely no change in my condition the same for lactose free & dairy free. The 2 diets that had limited success for me were Gluten Free & Processed Food free which was extremely hard to avoid 100 %. After being on these 2 for about a week ( i must state 1 was in 2018 & the other in 2019) i started to notice gradual improvements to stage of week 6 then both of them just stopped working & i reverted back to where i started with all the problems which was pretty gutting.

Have you tried any of the scientifically studied probiotics such as Alflorex or Symprove?

Have you been tested for Bile Acid Diarrhoea? Odd bouts of diarrhoea can be caused by the malabsorption of bile salts which instead of going round in a loop in your body end up in the large bowel and cause diarrhoea. I had this for over 40 years before it was diagnosed and treated. I take a Cholestyramine powder daily and with the addition of a small dose of Amitriptyline have no further trouble.

Hi Riddick

Sorry to hear you’re suffering.

I’ve been diagnosed for 10 years and had various tests undertaken. However since new year I’ve been in constant pain and once again going through the usual scans, blood tests due an elastase test . I’ve requested a second opinion after first consultant just generalised IBS and advised FODMAP which I’ve already done and now avoid my triggers. I’ve recently come across ‘The Gut Friendly Dietician’ online she’s based in Australia but talks about food chemical intolerance vs FODMAP. facebook.com/thegutfriendly...

So even if you’ve followed FODMAP and are still suffering it could be due to chemicals such as Salicylates, Amines, Glutamates or Food additives. Royal Prince Alfred Hospital in Australia have some information about food intolerance and cover food chemicals. slhd.nsw.gov.au/RPA/Allergy...

As usual most of us do a lot of self research in addition to getting advice from this forum.

Good luck and I hope you get the answers or potential solution you’re looking for.


Clare :)

If you're thinking SIBO, one thing you could try for it is Atrantil. I tried it, and think it did help me a bit but not dramatically, but that was more than anything else had done at the time. Like everything else, it sounds like it helps some people a lot and others not at all, and my symptoms were not much like yours. I did take it a bit longer than they suggested and at the maximum dose, but I stopped completely when I stopped rather than keeping taking a maintenance dose.

Please try not to feel like you're on your own. There are so many in a similar situation. Either nothing found at all or possibles turning into dead ends.

I've been going through the same processes with no answers. Had surgery 2015 to remove gallbladder as multiple gallstones were found. It was full and flopped over. Scaring to bile ducts, gut inflammation for no reason, vomiting, diarrhea, constipation, joint pain and swelling, occasionally blood in stools and extreme fatigue. Mouth ulcers on a regular basis and of course the obligatory gut pain that ranges from ok ish to you could die type pain. BAM low but not low enough, low folate to which I'm taking folic acid for a few months and the same happened last year , low vit A & D, lower end B12 and ferritin but I take liquid B12 and liquid ferritin to help this.

A lot of it you are left to deal with on your own. My appetite is poor at the minute and initially a few years ago went for scans as I lost over 5 stone in about 7 months. Granted I did have it to lose. When feeling ok I do put a bit on but when flaring I can lose 10kg in a couple of weeks. The lockdown weight I gained in March/April has now gone and a bit more. I weigh less now than I did when I left school. I'm now 6 stone less than I was a few years ago.

You just have to find what is best for you and this takes time. I have developed my own list of safe foods and how to prepare them when i don't feel so good. I also couldn't go down the antidepressants route to treat the pain, I just felt more depressed

Hi Riddick

Do you know what blood tests you've had done?

What Antibodies have been tested?

Have you been tested for Coeliac Disease? Did you know that you should eat lots of gluten in the days before the test?

Have Colitis and Chrohn's Disease been eliminated?

Have you got copies of all your medical investigations reports - blood tests and all scans?

Have you ever had a Barium Enema ? Barium Swallow?

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