finding Answers

[LadyHash]

I have had diarrhea most of my life and have used Imodium for the most part. Have been working with GI specialist but no help so far. Taking Colestipol which at least usually keeps me from having an accident but goes not help the symptoms of needing to go. They seem to want to find right pills to help me live rather than looking for answers. How do you get the right tests or drs to listen? I have had like 15 surgeries for one thing or another, including gallbladder. I am a travel agent and travel the world. This is making my life hell and so much stress which just makes it worse. Thoughts, ideas?

[Luisa22]

I wonder if it could be bile acid malabsorption?

Take a look at this and see if it might apply to you:

my.clevelandclinic.org/heal...

Apparently that can happen after gall bladder removal. But there are other causes too.

[LadyHash in reply to Luisa22]

We thought if that, but I had issue prior to that but think it got worse.

[jbrking in reply to LadyHash]

Definitely sounds like bam to me. Look at bad-uk.org website. I have it and still have my gallbladder, mine is due to non alcoholic fatty liver disease. There are many reasons for bam. A lot of people, like myself, are told IBS, when in fact it was bam. I know people who have it, then have gb removed, and it gets worse. Google professor Julian walters he is the top man on this condition. The fact colestipol is helping - which is a bile sequestrant med- speaks volumes. The definitive test for bam is a sehcat scan which a gastro consultant can do it measures the retention of bile

[LadyHash in reply to jbrking]

Hmm, he is planning on doing scope but not sure that would find anything like that. Will keep it in mind though. What do you take for yours?

[jbrking in reply to LadyHash]

A scope won’t show it, or colonoscopy. The only test is a sehcat scan. I take a bike sequentrant med called colesevelam. I have to take 4 a day. I also follow a low fat diet and have figured out what I can and cannot eat I’m 55 and been suffering this from my mid 20s and didn’t get diagnosed until 7 years ago

[Hidden]

Considering IBS is not a disease but a collection of symptoms with an unknown cause, there is no cure. Until there is a cause we are left treating the symptoms anyway we can.

The clue is in the label, irritable bowel syndrome.

We change diet, lifestyle and anything we can in an attempt to find a fix and generally we are left wanting. We just have to find what works best for ourselves and stick with it.

Cheers

[Hidden in reply to Hidden]

Hello

Have you found things that help you with it?

[LadyHash in reply to Hidden]

Yes the Colestipol does help. Finding the right dose I think might be the key. But you still feel like the gurgling gut

[Hidden in reply to LadyHash]

Does it stop it form going out of control then?

[LadyHash in reply to Hidden]

Yes in most cases. I just went to a river cruise with excursions that stressed me out and Switzerland driving was taking enough that really did not go much at all, which does not feel the best. But no accidents.

[Hidden in reply to LadyHash]

Is it stress related for you?

[LadyHash in reply to Hidden]

No I don't think so. I know it makes it worse when it flares up, because your always worried you will have an accident and people will see it. Hate acting weird around people but its scary.lol

[LadyHash in reply to Hidden]

In my case it’s the first time I eat. Does not really matter what it when. Figured that out after years.

[Hidden]

Hi,

It is more about things you don't do or eat in an effort to minimise the reactions.

You do the fodmap, gluten free and lactose free diets. Start a course of prebiotics and probiotics, bland foods, no alcohol or fizzy drinks. Basically no fun with food! None of it has worked for me but then some do minimise reactions. I find small amounts of food only and multivitamins is about the best I can do other than starving. That really works for me but as you might imagine it is very short term, for obvious reasons.

Through it all the one food that generally has little or no reaction is dry roasted chicken with nothing else but a drink. I recently found the causes of my IBS. Anxiety and medication. Anybody who doesn't get anxiety with IBS doesn't have it bad. You can't help but worry with it and that eats us alive. That is when I resort to Rescue remedy pastilles, suck 2 at a time and the anxiety level drops.

It is safe to say full on IBS can take over your life, if you let it. You just have to keep trying different things to find something that works for you. It may not be a fix but it could ease the situation for you.

Just don't give up and take it.

[LadyHash in reply to Hidden]

Thanks. Yes I travel a lot. Stress is my friend with this. Lol just have to keep going. Not going to give up b

[Hidden]

I believe I'm an extreme case of IBS with intolerances to many things including most medications. Were it not for me wanting to find a better way and not accepting the, take this pill and go away attitude. I would have succumbed to my health issues and suicided out.

My wicked sense of hummer keeps me pushing back at these so called specialists, forcing them to deal with me and my problems. If only to waste their time and money which gives me

a lot of satisfaction using up my prepaid tax health dollars.

[juniepoonie]

has it been worse since gb removal

[LadyHash in reply to juniepoonie]

Yes I do think it has been. I know there is a lot of discussion on not being told you need other enzymes after removal. So far not taking anything for that. But maybe I should. will have to look into it.

[Musicalways]

So sorry your having to deal with this. I find it so difficult when symptoms come on. Life hey .... For some reason I seem to keep repeating the same poo tests with negative results. I keep going to A &E with cramps because it pushes my BP very high. I'm currently awaiting test for bile acid malabsorption. Let's hope you get answers soon LadyHash👍Thanks for your reply

[LadyHash in reply to Musicalways]

Good luck. We all hope for some solution. Tell me what test they do for that when you can.

[Musicalways]

PS I've noticed Colestipol is used as treatment for bile acid. So indeed where do we go from here?

[LadyHash in reply to Musicalways]

I did not know that. I had a friend on it so convinced drs to let me try. GI specialist is going to do a scope but I don't hold out much help with that. Not til NOV

[Vasiliki99 in reply to LadyHash]

Scopes r difficult if u don't drink it just makes u feel awful the prep does me in

[Musicalways]

LadyHash your right stress does not go well. Its all trail and error. If my blood pressure wasn't going up really high because of symptoms and being on the loo so so often I really don't think anyone would listen to me. Have you tried a private Dr. They can diagnose and your local gp then provides the prescription via NHS. I've done this for other medical conditions. I really hope you get the care you deserve 🤗

[LadyHash in reply to Musicalways]

No I have pretty much stayed within Presbyterian. They do let you see specialists but usually within the same network. I am staying on them to find answers, but maybe there are none. I just figured there had to be a reason, but maybe not. Dr ordered Xifaxan again to try with the Colestipol. Still waiting for it. Its 14 day treatment.

[Vasiliki99]

A lot of people get this I just starve a lot or eat small amounts GI doctors NEVER helped it's not going to be great , nothing but distraction and instincts to be fair underneath I heard that 80 per cent of the UK has diseases u can't c from outside people lie also

[LadyHash in reply to Vasiliki99]

Mine is different than many peoples. Once I eat for the first time and get Diarhea then its over. I am fine the rest of the day. Just have to have time to deal with or block it up. Hard when you run a business or travel a lot like I do. Of course, like many there are times you eat the wrong food period and have issues but that's rarer. Love breakfast but its really a nightmare for me, especially for business breakfast or cruise. Many times I cannot even get to bathroom quick enough. Just all so embarrassing. Would like to be able to enjoy like a normal person.

[Vasiliki99]

Don't eat what u love or not much u have to get to the loo safely I wud say eat in room and when u feel urge run loo

[LadyHash in reply to Vasiliki99]

I so agree, but hubby likes me to go, even though I have issues. LOL Well I should mention also I had weigh loss surgery like 2 years ago, so in general I eat less. Many cruises don't offer room service or is not free. Too many times we need to leave early for an excursion.

[Vasiliki99]

We can't never get back to normal it's not possible...

[Vasiliki99]

Not in my case I can't eat much

[Vasiliki99 in reply to Vasiliki99]

Just stuffed my fave after days don't care tired and the energy will help me work although I feel nauseous but felt nauseous anyway since when does things stop for how u feel n wat us the point to stop it all all the work since it's going be needing to be done anyhow somehow

[Vasiliki99 in reply to Vasiliki99]

Face I just want to be asleep before midnight

[LadyHash in reply to Vasiliki99]

Thats the truth. In my case its the same with tour or excursions while traveling and drs appt and PT when I am home working. I work from home so that helps a lot.

[sugarplumferry]

Here in UK the ‘treatment’ for bile acid malabsorption is a powder Cholestyramine or if that doesn’t work then capsules Colesevelam. If they work then that pretty much confirms BAM. A definitive test is the sehcat scan but I don’t think it’s licensed in USA? Can you try these either of these medications? You do have to play around with the dose and timings to find out what works for you. BAD UK have a FB group which is very supportive. I didn’t get on with Cholestyramine and didn’t want to try the capsules so I manage by taking a psyllium husk capsule before my evening meal and loperamide (Imodium) as needed.

[Judym]

Have you tried a probiotic? I use Symprove every day and it has really helped my loose bowels.

[LadyHash in reply to Judym]

Yes I take a great multi after my weight loss surgery that has all that in there, and I take fiber daily.

[Vasiliki99 in reply to Judym]

I used to do milk n water kefir but not done for ages as u got to keep feeding it prunes n sugar but it sort of ok not alleviation though

[LadyHash in reply to Vasiliki99]

So far the Colestipol the best option. Was able to go out to eat like a normal person. Have to find the right balance. At least it helps your cholesterol

[Vasiliki99]

Truth is very difficult lifestyle these days maybe contribution