New support tool- at least trying

Hello all, I'm new to this forum, but given the humongous lack of support & awareness of my condition I decided to give this route a try. What do I have to loose?

In a nutshell, the last 14 months have been and continue to be a living painful hell. Going from a young healthy, active, sociable woman (37 going on 38) to a person who can no longer cope with daily life due to the physical and mental exhaustion caused by withstanding a minimum of 10-12 hours non stop daily abdominal pain. Add to that having to follow a very strict diet, numerous trips to A&E, reducing 90% of activities both inside and outside work, non existent social life, insomnia and "tricky" bathroom situations. They call it IBS.....

I'm thinking 💭 mmmm peppermint oil is not really cutting it as a possible remedy.

Have tried all popular recommendations both conventional and alternative medicine to no success.

Grateful to hear about any fellow IBS or similar "invisible illness" sufferers where chronic pain is the key issue.

Best regards

10 Replies

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  • Hi Popetta and welcome to the forum.

    Very briefly and from my own very limited experience . Try hard not to get over stressed. Yes, I do know it's a lot easier said than done and the stress of pain is always there but remember the old saying scared sh.....s also I have found it is best not to have a mug of milky cocoa in the afternoon. Before bedtime, it seems to be ok, perhaps it's because it's a relaxing time of the day... So keep a food diary on paper or otherwise and work out what is best for you, along with keeping calm when /if you can. But as I said, my experiences are limited as chronic pain sufferer. Good luck in your search.

  • Thanks for your feedback. I do find it helpful to keep a food diary, albeit mine is a mental one given the time & long list. I also try to tap into my creative skills to reduce possible stress, plus during the worst hours of my insomnia. I guess it's a different way of utilising "dead hours". I have to agree with you that stress and/or anxiety are no good for this condition and it's a challenge to eliminate them as in my case they are a direct knock on effect of continuously trying to fight this battle. I made some lifestyle changes too to see if they can also help: I.e avoid watching/reading disruptive/upsetting news/movies, working with music 🎶, removing toxic people from my life, avoiding conflictive situations, using my lunch breaks to go for walks etc

  • I have diverticulitis which is similar ie cramps and pain during flare ups etc. One of the best things was the advice of dont have anhthing to do with the cow ie diary free its worked for me.

  • Thanks Andy, I'm on dairy free too. A lot of "free from" actually: no gluten, no grains, no pulses, no wheat, no meat (it makes me really sick 😷) no onion, no garlic, no veggies prone to cause gas/bloatedness, no alcohol.

    Glad it's working for you 🙂

    I originally thought mine could be diverticulitis, though it was ruled out by a colonoscopy.

    I will continue to fight my battle & see it through with a good sense of humour (at best of times!) but it's great to hear feedback from other fellow sufferers. I believe there's always something to learn from others going through a similar ordeal.

  • Have you tried Dicycloverine Hydrochloride (prescription)? It's truly a magic pill for me. The pain is the worst symptom for me and of all the available medication it's the only thing that stops the pain.

  • Hello Tabby-cat, no I've never heard of this one before. I will mention this to my doctor on my next visit, I did try Amitriptyline and it did not reduce the pain plus the side effects were horrendous.

  • Amitriptyline is an anti-depressant so acts as a muscle relaxant, but Dicycloverine is an antispasmodic and acts directly on the spasms that cause the abdominal pain . You can take them regularly each day or just when you need them, depending on your pattern of pain. I find they work extremely quickly. If I take them immediately the pain starts, it almost always stops completely within about 10 minutes. And I get very severe pain where I'm literally on the floor, and was ambulanced to hospital numerous times before I was prescribed them by a gastroenterologist. Hope they work for you.

  • Hi there and welcome to the forum, im not a victim of your condition as such but i do suffer similar due to the horrendous coctail of chemicals i have to take which makes almost all solid fuel intolerable, aside from the similarity im sure that you will find that many here who dont have your unfortunate condition will also suffer from other chronic diseases that are also misunderstood and so can empathise with that frustration. I have been told that hypnosis can help but although i have been a registered hypnotist for 16 years it was not something that i ever helped with during the 10 years i practised. If it is something you havnt tried it may be worth contacting a local practitioner to discuss what help they feel they can offer, if nothing else they should be able to lead you to better and more frequent relaxation.

    Blessings

  • I found tomatoes made mine worse were a definite nono

  • Hello,sorry to hear of your problems, have chronic pain too, but very different and in my neck! Still an ivisible illness though. Have you tried the high dose pro biotic tablets? A friend of mine with IBS found them helpful. Sorry if it sounds like suggesting peppermint tea though :)

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