Just dont know what to do next?!: Ive had ibs... - IBS Network

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Just dont know what to do next?!

DM14
DM14

Ive had ibs for 13 years (now 26)

It causes me pain 24.7 i have a dull.ache constantly and also my lower back. I have always bloated but also have extreme flare up where even tramadol.doesnt help me. I have been tested for everything under the sun, you name it ive probably had it (coeliac, colonoscopy, endoscopy, laparoscopy, UC Crohns) Also, medication been there done that notbing eases or improves it ( movicol laxido anti spasmodics laxatives prucalopride supposirtories lactulose) I have been on all sorts of free from diets (wheat dairy gluten) and also done numerous food diaries..NOTHING HAS HELPED.

Im now feeling at a lploss. Its.taken over my life for way way too long. I am getting depressed about it and struggling to be happy anymore. I cant do this anymore

I do have quotr a fee allergies (one very severe-anaphylaxis)

Please can anyone suggest anything to help???

9 Replies

I ‘m very sorry to hear about your troubles and I hope you get some help soon. I find that a warm hot water bottle helps with the stomach cramps.

This is probably very unlikely, but check also with your gynecologist.

DM14
DM14 in reply to b1b1b1

Hey.. Yes I had a laparoscopy not long ago in April. Everything was clear and I have now been signed off their service

How very depressing for you, you have my sympathy. People don’t understand how it can take over your life. I used to view the hours between getting up and going back to bed as torture. Had the tests and tried the drugs too.

I have had most relief from Amitriptyline. Twice I’ve weaned myself off and twice I’ve had to go back on. There are some horror stories online about side effects, but apart initial tiredness I’ve had none (on 20mg). As I understand it, it reduces neuropathic pain. I’d had so much pain for so long that I think I was feeling more than there actually was ie I was primed to feel the pain at ridiculously high levels. Amitriptyline dials it down. It did for me anyway.

Hope this is a new suggestion for you. I would say don’t give up, keep trying, and enjoy those moments when you feel ok

All best

Jo

DM14
DM14 in reply to jojo12345

Amitriptyline.. is this an anti depressent??

jojo12345
jojo12345 in reply to DM14

It was developed as such many years ago - at very high doses. At low doses it’s used for lots of different ailments, though no-one really seems to know exactly how it works. It’s cheap too.

It does take about 6 weeks to reach full therapeutic level in your body though, so it’s not a quick fix. Titrate up slowly - I made the mistake of taking 10mg on the first night and was zombiefied the next day.

I guess it’s different for everyone, but it’s helped me. I still get pain, but nothing like it was

I know just how you feel. at one point I wondered if it was better to give up eating altogether. Before my colonoscopy I had five days on the most uninspiring low residue diet, but before the end of the second day I realised my problem had been eating too much fibre. I am now on a low fibre diet, but have added a few extra items over the past few weeks. I still get the odd day when I have cramps, but at least I know what has caused it.

It works for me, though as I often say, one size does not fit all. It might be worth giving it a try just to see if it works for you.

I am like you and have tried everything from Accuputure to Massages, Lo-food map diets, you name I have tried it. Too add to my problems I have Breast cancer. I have spasms every two hours at night. Right after the spasms wakes me up: I have to go pee. I hope you can find something that works for you.

Ugh! I hear ya! You are not alone. I am the same way :( I have done the same, also did a HIBA scan for my liver and gallbladder. I just really wish that we could get diagnosed with a problem so we know what to fix and move on with our lives! I feel like I know more about gut issues than doctors. I have been so desperately researching. I have also tried Xifaxan which is supposed to help with SIBO (small intestinal bacteria overgrowth. Not sure if you have looked into that? Wasn't my problem, but just something to throw out there. Best wishes! Hang in there ( I am trying at 33).

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