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Stomach disorder

Blue angel 3

I have the most wonderful adult  son kind generous and beautiful.  He was diagnosed with Aspergers as a child   Alll his life he has suffered server stomach pains as a baby it was colic as a child it was anxiety now it’s IBS  he has no life we, e had test after test and yet still he goes through this almost daily my GP now tells him it’s his brain telling his gut  he can’t go out because he never knows when he’s going to get a flare up I think we have tried every pill and potion the NHS has to offer  I can’t watch him suffer like this having constant pain and no life  I’m thinking of trying to get him a private capsule endoscopy. I’m just wondering if any one suffers this way too

  • I have had similair all my life ibs etc .i was put on diazepan for a couple of years ,it really worked ,but now i just work around life , giving myself time to work out the anxiety and understand why i am feeling like i am . I have ended up in hospital a couple of times since ,but they can,t diagnosis anything ,just find the symptoms [enlarged liver,acid,enflamed stomach],i also have a thing where i need a wee and if i don't within a couple of mins it becomes agony to wee after that. i find all these thimgs worsen with stress ,change, ,extra

  • in reply to raspberrypie

    Yes, I'm very committed now to this idea that the body and mind are one and interact and we have to work with both. 5 Spirit accupuncture is something I get benefit from, as well aslotsof other things I've done.

  • i'll offer a completely different point of view... maybe its in his head. no offense. i mean, exhaust the medical avenues. i've done that... and keep searching for medical reasons. but if nothing turns up, start looking at asd, sensitivities, etc... i'm twice exceptional, 2e, and i'm just getting into this stuff (i haven't read this whole article, lol)

    https://www.edweek.org/education/opinion-medical-misdiagnosis-in-the-gifted/2013/09

    i've long wondered --- how much my sensitivities and asd played a role in my chronic pain, etc. which has ruined my life. and now i feel that every single sensitivity you can have, i have. including ---- how you sense your own body. how you sense pain in your body. how you process that pain in your body.

    once medical avenues close down --- gotta look elsewhere.

  • in reply to JT

    I was involved with a UK trial of extra-corporeal leukocyte-apheresis where the white cells are removed from the blood - it worked brilliantly.   It's a drug-free treatment over 10 weeks - pretty tough going - but excellent results.

    It's now a standard treatment in many countries but the NHS won't pay for it.

  • A Crohn's sufferer since 2012 I have seen many specialists inc. Harley St, dietitians, nutritionists, gastro., had MRI, MRe, Small Bowel, Barium Dye, Colonoscopyies, Sigmoids, etc etc. I have learned that western medicine can only offer you drugs that suppress the immune response your body is triggering to fight a problem. You need a holistic eastern mentality to help treat your mind and body connection. Meditate every morning and evening, Download the Calm app.

    But, there is hope for us all when it comes to diet. An app. developed by Dr Tim Spectre (The Diet Myth) called 'ZOE' has been launched in America. Due in the UK in 2021 sometime, tested on 3000+ sets of identical twins' microbiome, will offer tailored nutrition. This will change the life of many of us.

    There is also a vaccine being developed in Oxford to stop Crohn's disease! Blew my mind. Not too far off now as has been trials for some time.

    Good luck to us all Slight smile

  • A Crohn's sufferer since 2012 I have seen many specialists inc. Harley St, dietitians, nutritionists, gastro., had MRI, MRe, Small Bowel, Barium Dye, Colonoscopyies, Sigmoids, etc etc. I have learned that western medicine can only offer you drugs that suppress the immune response your body is triggering to fight a problem. You need a holistic eastern mentality to help treat your mind and body connection. Meditate every morning and evening, Download the Calm app.

    But, there is hope for us all when it comes to diet. An app. developed by Dr Tim Spectre (The Diet Myth) called 'ZOE' has been launched in America. Due in the UK in 2021 sometime, tested on 3000+ sets of identical twins' microbiome, will offer tailored nutrition. This will change the life of many of us.

    There is also a vaccine being developed in Oxford to stop Crohn's disease! Blew my mind. Not too far off now as has been trials for some time.

    Good luck to us all Slight smile

  • My General Practitioner used those exact words for years. It all in your head he kept saying and i had to fight to see a gastrologist who later diagnosed me with a rare autoimmune disease as well as Chronic Bile acid Malabsorption, Crohn's Disease in my small intestine and Gastroesophageal reflux disease. I have dad an endoscopy twice and they didn't go further into my intestines to find what was wrong. regular Stool samples came back negative until they performed other irregular test on my stool, in the end they had to me take some awful taking fluid and scanned me entire stomach where they found the problems. 

    What medication has he tried, Has the doctor prescribed Cholestyramine it might be Bile Acid Malabsorption if so its really difficult to get diagnosed the only way to get it diagnosed it to go through the same scan i had to go through.    

  • I'd consider consulting a natropathic herbalist. It won't be a quick fix, it'll be lots of small adjustments over time, potentially some cleanses, changes to diet, herbal teas to drink, various practices, but it could be transformative. I'm a different person to 15 years ago, but i invested time, effort and a bit of money in the transformation.

    I also find following Ayurvedic advice worthwhile. Do an online test, find out your constitution, then follow the dietary advice. Western medicine is slowly concurring with this system.

  • I'm sorry to hear about your son, chronic pain is no fun at all. I have Irritable Bowel Syndrome and enjoy a low fodmap diet as well as medication for my bowels and anxiety, plus lots of other non-medication things for anxiety. I've been doing neurodiverse yoga this evening! I'm in the process of obtaining a Just Can't Wait card from the Bladder and Bowel Foundation that apparently allows holders access to toilets that aren't usually accessible to the general public, for peace of mind whilst out and about. I'm the opposite of a thrill seeker, more of a chill seeker I guess :-) looking for beauty, fun and joy to soothe my mind and bowels.

  • Hi - Capsule endoscopy misses lots of smaller things on the way through the intestine - a standard colonoscopy is more usual and is usually more thorough.- they can stop and concentrate on any areas of interest and take biopsies of anything unusual.    

    I was diagnosed with ulcerative colitis 20-odd years ago and was having 3 major flares per year so I was getting through a lot of Prednisolone steroids to repair me.   I avoided hospital by looking after my body.

    I found playing tricks with Loperamide (Imodium) meant I could live a controllable life.    If I needed to travel, 6 imodiums meant I was good for the day - safe a able to enjoy the day - and then havea recovery day after to empty out.

    If it turns out to be Crohn's or Colitis, be aware that the cancer risk increases year on rear so a colectomy may be on the cards in the future.