Hi, I'm new here: I've been suffering with... - IBS Network

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Hi, I'm new here

BluDancer profile image
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I've been suffering with symptoms of IBS for many years, but was trying to deal with it on my own. I'm suffering from a very bad bout lasting over a month, which has forced me to be diagnosed, and has left me very weak and in continuous pain. To be honest, my faith in my Dr isn't very high atm, and I'm in such poor physical health that I'm terrified of taking a misstep. Every bite of food feels like a game of Russian Roulette. I'm diagnosed as IBSa, but I have had diarrhoea for years, and think that the constipation I suffered was thanks to the Codeine I was prescribed.

If anyone can suggest good foods to help get energy back and weight on in a gentle way, I would be eternally grateful. I also get a lot of back pain, with the condition and have bought a tens machine, purely for the back pain. Has anyone had experience using this, it feels great and I can differentiate between different pains instead of it being a mass of pain, but I'm hoping it won't have negative effects.

Any help and advice would be greatly appreciated

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BluDancer
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5 Replies
Ughpain profile image
Ughpain

Hey. First you’re not alone. I’m a nurse and I lose confidence in my doctors, especially when things happen so slowly. I am in same boat as you. I’ve hurt for a long time and they tell me I have fibromyalgia, which I do. I have everything that describes it. But with that pain it made me ignore worsening pain between shoulder blades. I went to ER cause nausea got to bad with pain. I’ve seen my PCP and now 2 gastro drs. First one said, “not a GI issue”.. what??? Ugh. So went to bigger city and he put me on Bentyl. Although I deal with more C than D. But for now that medicine in past 3 days has helped significantly. I’m at least out of bed. I feel very tired but I’ve not eaten much. It seems red meat is my enemy. I’ve been tested for everything under the sun and it all is “normal”. But I’m still not convinced it’s not my gallbladder BUT I might be a nurse who thinks she knows more! Ha. I get very down cause it’s taking me out of life. I’ve missed work and doing things with friends & family because of this. I quit one job cause I was afraid they were going to fire me cause I was having to call in sick so much. I hate being so undependable! And now it’s happening again in my new job. I know it’s not my fault but I want to be out of pain and part of life so bad!! Not sure what to do but hope bentyl will change things.

Haylesss profile image
Haylesss

Hello.

Have you tried the FODMAP diet? It worked wonders for me, even though it can feel like a long, boring and overwhelming process in the beginning.

I was eating very little and the same few meals for a while as I, too, was scared to eat anything when I was first suffering!

Don’t stress yourself trying to get back to eating how you did before IBS. Take your time and introduce one or two new foods a week that you’d like back in your diet - taking note of their FODMAPs of course - and see how you react. Accept that it’ll take a while. (Which I struggled with initially).

I also avoid large volumes of high-fibre foods as these cut through me. Not ideal, but I’d rather be able to leave the house.

I keep my meals fairly plain and simple (don’t overload with a million different veg/ingredients) and try to spread snacks out throughout the day, like fruit, so it isn’t overload on my system. Unfortunately it seems to be all the healthy foods that get me - when in high volume or several together.

You may also want to explore whether gluten is an issue? It wasn’t for me but it can be. Cutting out dairy and soy for myself was a life-saver.

It’s really a long road of trial and error, which isn’t ideal but I hope it can work for you!

Good luck!

Marygulliford profile image
Marygulliford

Have you tried taking probiotics? Always take them and folic acid. Doesn't take it away altogether but keeps me sane. I've had a particularly difficult couple of weeks and haven't wanted to get up in morning cos I'm sick of living my life on the loo!!! Afraid docs don't have any answers unfortunately.

Katerina1 profile image
Katerina1

Hello BluDancer, Sorry you have been suffering so long. Like yourself I think the codeine I was prescribed led to IBSa rather than all diarrhea. I'm still, as always, trying to improve matters and wondered whether you have tried reducing the codeine dose, maybe halving it to see whether that helps. Another way I am trying is to take codeine on certain days of the week to give my insides a break. As yet though the diarrhea still hits me frequently. Like others on this site I suggest a simple non high fibre diet, not too great a quantity of veg and be very careful with fruit. Have you thought about whether you could be intolerant of lactose? Many people are and it is present in milk and other dairy products. I have heard that yoghourt is better in terms of being easier to digest. I know exactly how you feel - every bite of food is like Russian Roulette. My doctor told me to eat more of the 'healthy' food when my insides calm down (very rare) and go back to the simple bland food when it flares up.

IBS does sap your energy and as you have had it so long it might be might be the reason for your low energy. You don't describe your situation, but would you be able to pace yourself more? Less energy output per day might even help put on some weight. All the best. Katerina1

BluDancer profile image
BluDancer

A big Thank you to every1 who responded, but it turns out I'm a different kind of cautionary tale. I think with the problems I've had in the past I do have IBS, but that wasn't the problem this time.

I had to go to A and E, couldn't take the pain anymore, and the Dr there listened when I described this lump deep inside me and did an ultrasound followed by a cat scan. I have very very enlarged ovaries due to cysts and fluid was leaking into my abdominal cavity causing an infection that was poisoning my digestive tract.

I've now had 7 different antibiotics, but progress is very slow. They are draining the cysts today so at least I won't be leaking more infection into my abdomen, and it looks very likely that I'll have a hysterectomy as soon as the infection clears and I'm strong enough.

I'd like to urge anybody who can on this site to skip to hospitals where there is more diagnostic equipment if the nature of your IBS changes, in case another problem is hiding behind IBS symptoms

Again deepest thanks to you all :)

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