Had enough can’t fight it much longer. - IBS Network

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Had enough can’t fight it much longer.

Readmeastory profile image
21 Replies

I’ve had enough feel like giving up .ive been on linaclotide 290 since October and sachet of laxido once a day . I take the tablet in the morning before breakfast . . I been on before and asked or help I’ve taken 2kiwies a day been on a restricted diet and a high fibre diet nothing helps .im in constant pain and had every test going . Been told slow tract bowel with narrowing and scar tissue . Specialist told me he didn’t have a magic wand to make it better . So I just had to get on with it . Trial and error but with lockdown it’s seems to be worse . I’m try the alflorex but I felt it made it worse so came off it but nothing changed so how long on ate alflorex before anyone noticed a difference . My husband bought me silicolgel to try but scared as it’s for diarrhoea has any one tried it for constipation . Sorry for long winded post but I had enough of the pain .and doctors unable to help . Just need some help or advice from people who no what we suffer . Fed up fighting this .jean 65 only had this since June .

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Readmeastory
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21 Replies
siouxbee19 profile image
siouxbee19

Have you tried Milk of Magnesia, or magnesium supplements? I usually have the opposite problem as you do, but sometimes it's the same.

I'll write more later, as it's 2:53am here in the USA & I should be sleeping, but am up with my precious 19 year old dog. She often acts much younger, & gets around really well for her age & being deaf & blind, but it's catching up with the sweet angel.

Please do take care & I would love to follow up with you about this, just wanted to pop in quickly & acknowledge your post.🕊️💐

Readmeastory profile image
Readmeastory in reply tosiouxbee19

Thank you for your help . I did take milk of magnesia today as I had some in my cupboards it helped a little so will up the dose . I will see about magnesium as well . It’s all new to me been trying different things to see what works. But nothing seems to work apart from lots of laxatives the I go the opposite way . Thanks once again 😊

siouxbee19 profile image
siouxbee19 in reply toReadmeastory

I also wanted to add, now that it's a decent hour and I am fully awake ;) - After a lifetime of GI issues, especially within the past 20+ years, countless tests and over-the-counter products plus prescription medications, I just recently discovered IBGard! This, along with prescription Codeine (slows bowel transit time) is what works for me now.

Iknow you have the opposite issue, constipation, so the Codeine wouldn't help, but IBGard is supposed to help both C & D. It's the way it's released into the bowel that is the secret, it works differently than other peppermint products.

ibgard.com/ibgard-differenc...

I am not sure if it's available in the UK, as I said I am in the US, but it's worth a try. I first frowned @ the suggestion by my GI doc, yet another something to try that won't work, but boy how I was pleasantly surprised! It works better than everything I've tried so far (and that's a whole lot of things, some 3 & 4 different times) in these past 20+ years!

Even though I have the opposite problem than you, I do have that issue occasionally, and the pain, so I do know how you feel and am wishing you get some relief. Hang in there, I know it's hard, but treasure the "good" days, take good care of yourself, and know you are not alone! :)

Readmeastory profile image
Readmeastory in reply tosiouxbee19

Thanks for your help will have a look at that as I can’t take coding . But couldn’t answer yesterday as had such a bad day . But will see once I can see my go or specialist 😊

Eliana5 profile image
Eliana5 in reply tosiouxbee19

Hi..I'm interested in what type of Magnesium you use. I have severe and chronic IBS-C. Nothing..food..fiber..exercise..vegetables..Trulance, Relistor, Linzess, Resolor..nothing helps except Senna..unfortunately..a stimulant laxative I have taken for 14 years is all that helps. I don't want to take the liquid Magnesium..but the supplement capsule kind. The Magnesium you are talking about..is it Magnesium citrate? If so..how much? I have some on my kitchen counter and have yet to use it because I have no idea how much. There are so many different varieties of Magnesium. I also have difficulty sleeping and heard Magnesium helps greatly with relaxation and sleep. Thanks! ☺

siouxbee19 profile image
siouxbee19 in reply toEliana5

I actually only take Milk of Magnesia (magnesium hydroxide) on the rare occasion I have a problem with C. Having a propensity toward D., I learned the hard way from taking heart health supplements w/Omega 3's that contain magnesium taurinate, magnesium glycinate chelate, and magnesium oxide that they can cause D., so I am thinking a person with propensity toward C might have good results with this?

I have also heard that magnesium citrate is good for C., but have not used this, so don't have first hand knowledge, but here is a good article I found that may help with the dosage, etc... It was written by a doctor, so it might be spot on. Hope it helps!

healthline.com/health/diges...

Eliana5 profile image
Eliana5 in reply tosiouxbee19

Thank you! ☺🌹

Readmeastory profile image
Readmeastory in reply toEliana5

I take milk of magnesia to help it does help a bit it would be worth a try .

xjrs profile image
xjrs

Sorry to hear you are still struggling. You could call the PrecisionBiotics advice line about Alflorex:

precisionbiotics.com/uk/con...

They say it can take up to 6 weeks to work and some people may experience some problems at first before it settles down. They may recommend that you start slower by opening the capsule and emptying half into some water and retain the other half for the next day. I started getting benefit after about a week and didn't have any side effects but everyone is very different.

Have you been tried on any nerve pain medication or enteric coated peppermint?

In terms of diet once getting some relief from the pain I've had to reintroduce foods (including fibre) really slowly. Starting with a small amount (e.g. 1/4 normal portion size) for 3 days and only increasing if symptoms are tolerable or staying on the smaller amount for longer.

Readmeastory profile image
Readmeastory in reply toxjrs

Hi thanks for the reply I email the probiotic as I’m profoundly deaf and struggle to hear on the phone . They told me to stop taking them see if it helps and if it doesn’t to try again . So I stop and no real difference in the pain of symptoms so will take them again in a few days . I do drink peppermint tea but I will look into the tablets . Only pain relief I take is parcetomol . But sometimes it just gets to much to take . Thank you for listening and replying 😊

xjrs profile image
xjrs in reply toReadmeastory

Peppermint tea may encourage acid reflux, whereas the enteric coated pill should be better since it gets delivered into the intestines where it starts to work. If you are in a lot of pain maybe you could email your GP practice and ask for a dialogue by email instead of on the phone - they should be able to accommodate you. You might just need someone else to call them first to get their email address and explain your circumstances and needing this type of communication. Good luck.

xjrs profile image
xjrs in reply toReadmeastory

Also have you tried any heat pads to help with pain when you are desperate? I have a product from these people - it's really good quality plus it's nice and fleecy and comforting. I used to experience pain from my intestines in my lower back so I have the lower back product and it really helped; however one of the square ones might be more versatile:

homefrontproducts.co.uk/ele...

Readmeastory profile image
Readmeastory in reply toxjrs

I use a hot water bottle most days . I’ve got a small one that tuck into the waistband of my trousers 😅 but it helps . Will hav3 a look at the heat pads .

Readmeastory profile image
Readmeastory in reply toxjrs

I have colpermin caplets but not sure if they are enteric coated . Would theses work .

xjrs profile image
xjrs in reply toReadmeastory

Yes. The product info says enteric coated:

medicines.org.uk/emc/produc...

Readmeastory profile image
Readmeastory in reply toxjrs

Thanks I took one earlier and it’s eased a wee bit . So will take it again . I know this sounds daft but I thought the coating was to thick to dissolve so was unsure of taking it 😊

Pleesee profile image
Pleesee

I am with you and have had trouble constipation for a while however, I manage well. Do you do stomach massage? I massage my tummy at night before I go to sleep for 10 minutes. I take a teaspoon of olive oil in the morning when I get up. I also fast walk for 20 minutes when I wake up. I also take a teaspoon of olive oil when I go to bed. I now am going regularly. You can see how to massage your stomach on you tube. It really helps. good luck.

Readmeastory profile image
Readmeastory

I do massage at night it I will take olive oil I did try it once but was unsure of how much to take .. but will try it again . Thank you for your help as sometimes with the pain you just feel overwhelmed . ☹️

Hi there. Have been in the same place as you have the same problem with tarry poos. After years of meds and fibregel sachets I found relief by pinpointing food intolerances. Where I live it is called celiac disease where the body rejects foods and they create an autoimmune respond with inflammation. Multi histamine flares from foods and drinks may create the unpleasant symptoms. Do you live in the UK? The usual tests are for dairy grain with gluten and egg. The limited range of tests makes diagnosis difficult. I was called normal after asking for gluten tests thinking this would solve my problem. I have a multi grain allergy including wheat rye barley rice and maize. Also egg dairy and banana. I had tests through a smart finger prick taking a couple of minutes and results back within an hour. It was the best present from family ever and would recommend it as non invasive. I removed every food I ate from bread cakes biscuits cow's milk with lactose most soft cheeses yogurts and barley malt found in sweets cakes whisky beer and maize added to many foods in cornflour and sugar free sweets labelled sorbitol. Am much better. If I had had this test years ago am sure I would have been fitter. Of course your specialist is looking after you it is just that rigid guidelines rule healthcare systems so you don't know about food intolerances. I was seventy when I discovered what was causing my problems so it is not too late to get help.

Readmeastory profile image
Readmeastory

Yes I live in Scotland I’ve had gluten test and came back normal . Doctor doesn’t do test for milk and eggs . Because everything is on lock down it’s been difficult to get to see anyone . I dis see doctor who examined me . And told me I had inflamed piles . So using cream for that I’ve was on a very limited diet and lost 19 kilos . I’m under a dietian on high fibre . And then low fibre diet . Tried everything . But will see about tests .. my motions go between very loose and thick tar . Just get so down about it all . I have put on some weight and I’m now 51 kilos down from 67 . I cutout red meat corn fizzy drinks chocolate opinions peppers and have 2slice of bread a day . Doing everything to try . But people suffer for years . . 💕

JasonLegrand profile image
JasonLegrand

Ok so I take one full glass of prune juice no pulp only stopped to breathe and then you follow that with downing the same amount of water and after that continue to just sip on water when thirsty and don’t eat after until you realize you stopped going to the bathroom because once it starts it almost dose not stop I take a chair to the bathroom lol but after it does stop or significantly slows then it the best time to eat healthy meal to promote healthy movement and this always helps me until I start the unhealthy eating again

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