15 years of hell and still no better

[Argjfj]

Hey as per title I have suffered for a long time I'm 28 and currently the lowest weight I have been sitting at 9st. I have tried many nerve blockers amitriptyline worked best but just stopped working, even keeping me awake, Im having to drop days I'm working as I just can't function my gastro doc is just stumped and just throws pills at me which I seem to react badly too my lastest episode has been going on almost a year no appeal for food not really sleeping and symtoms just seen to be getting longer currently hot flushes with night sweats,and dizzy spells I'm just soo fed up. Does anyone no any other routes to go down I have done

Neurology, bloods, cameras everywhere, food maps diets, gluten free and lactose free, multiply food supplyments I'm still currently on fortisip which is okay but does make me feel very bad some days ?

Please help sorry about rant 😭 just really struggling

Tia

[Maureen1958]

Hi Tia, I'm afraid I have no answers for you but didn't want you to think nobody was interested. I have had IBS for 35 years and am at a complete loss of ideas myself now! You sound like yours it pretty awful too. They are a nice bunch on here, I expect someone else will came along and say hello later.

[Pte82]

Argjfj, thiamine is critical for proper function of the brain and the vagus nerve connecting the gut to the brain. Although the first link focuses on SIBO it also applies to IBS and contains visuals of the vagus nerve's connections in the gut for a better understanding. Searching on "IBS thiamine" will expand the subject. In addition to thiamine found in foods are three forms ordinarily not found in multi supplements that offer heightened absorption and other benefits TTFD, benfotiamine and sulbutiamine. Take time to study each. The B vitamins work better together. The enzymes created by magnesium are needed to activate thiamine so a deficiency could also result in a thiamine deficiency. Search on "krispin magnesium" will provide additional magnesium info. Anti thiamine factors make it difficult to maintain sufficient thiamine. Sulfur dioxide in addition to other anti thiamine factors deplete thiamine some of which are found in the last two links. Always consult your health care professional before using any supplement.

eonutrition.co.uk/post/thia...

chroniclesinhealth.com/inde...

stuttersense.blogspot.com/2...

[Daz1113]

Really sorry to hear this. It’s a horrible thing to have. And more so that the only people who understand it are sufferers themselves. I wish I could offer you some comfort and some advice. But it sounds like you’re a lot further down this road then I am. But I’ll send you love and hope. Take care

[rustydog]

So sorry you are suffering. I have had IBS for 23 years and am at a loss as how to control it. Like you I have had cameras up and down, scans etc, tried all kind of diets etc nothing seems to help and infact the older I am getting, the worse it is. I do know that dairy is a huge no for me, have you tried giving it up? I know for me personally the fortisip would make me very unwell.

[Oscar091]

Hello I’m so sorry to hear. I’m going through the same I had been diagnosed with SIBO too and still really sick after having antibiotics no improvement. And the gastroenterologist is no better I think he just thinks it’s psychological. Amber x

[Tongshine]

Hi Argjfj, I'm sorry I don't have answers for your problem. Nevertheless, I just want you to keep being positive and be careful not to get involved with some of those addictive drugs that end up compounding your problem. Also, consider changing to a different doctor. You may get the 'miracle' you need. Get well soon.

[Cornwallgirl]

Hi Argifi oh I know that you are suffering as I have had ibs for over 30 years. About six months ago I cut out everything onion. All processed foods as most include onion powder and other nasties. Even apple powder in salt and vinegar crisps set it off!! Today I was fine then wham with no reason to it. It makes you feel so ill, I had to cancel the dentist. I'm on mebeverene and amitriptyline which do help but, as you will know, when you have a bad attack nothing helps. Sorry I have no answers but at least everyone here understands.

[marshamclean]

I seem to become sensitive to more things the older I get. Am 74 and have suffered for 10 yrs. Recently I started reacting to anything with chocolate or vinegar. I am so sorry you are suffering so. However, you do have lots of company😥

[Nothing_but_books]

Here's a thought from left field. The gastroenterologists never seem to bring it up, at least not in my experience. Could you have a post-nasal drip and a lot of mucous in your stomach? I had horrible stomach trouble and none of the drugs did a darn thing until I got help for my sinuses. I hope you start getting better soon.