Having a really bad time right now: So i was... - IBS Network

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Having a really bad time right now

Azazealblack profile image
17 Replies

So i was diagnosed with ibs-d a few years ago now and when it started i was optimistic i was going to beat this. Lately its just getting me down so much its like the condition is winning and i hate it. Any advice basically to get my optimism back

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Azazealblack profile image
Azazealblack
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17 Replies
winfong profile image
winfong

Ugh! I know it can really get you down.

That said, I fear that the lick-it-in-a-few-years idea might not have been realistic. Personally, I've had it for 40! I think the real trick is learning to live with it, at least to some degree.

What are you taking for it now? There's plenty of stuff out there - you've just got to find something that works for you. And, personally, I've always thought that include things outside of just straight IBS meds - diet, exercise, mental health.

Good luck! Let us know how it goes.

Azazealblack profile image
Azazealblack in reply towinfong

Thank you for your response im taking alvarine citrate 3 times a day and Imodium when i need it, do you have any advice for exercise like is there certain things that might hurt my stomach or anything

winfong profile image
winfong in reply toAzazealblack

As for exercise, once again, it's whatever works for you - walking, biking, gym, tennis ... Any kind of exercise can be very beneficial overall. I often find I have to really force myself, but it seems to always pay off.

Claire44 profile image
Claire44

I'm so sorry you are having a bad time, although I feel your pain. I take Entersol gel and it really works for me. I only take it in the evening now and I am on Symprove. I tried it in the summer and gave up. But I've bought some more and am now thinking it is helping, I'm on month 3. Mebeverine does help too. I have good and bad days, but I would give Entersol gel a try, it works for me. Feel better soon xx

ArnoldAx profile image
ArnoldAx

I am so sorry that you're struggling right now and I agree with both other comments about finding what works for you. After years of feeling a little dismissed and some v basic advice from my GP I asked for a referral & after discussing my specific and individual symptoms with a Gastroenterologist am now taking a prescription medication that was never licensed for GI. So I think the take home message is that this is your IBS-d, seek out the answers specific to you and although I am by no means cured, i am back within the boundaries of manageable. I wish for you the same, take care, A

Maureen1958 profile image
Maureen1958 in reply toArnoldAx

Can I ask what this prescription medication is that you are taking please!

ArnoldAx profile image
ArnoldAx in reply toMaureen1958

Yeah sure, the only reason I wasn’t specific before is that was my point. Each person has different triggers & symptoms and it’s worth getting a professional opinion regarding the MOA of medication to try and be a little more targeted. I am prescribed Cholestyramine and I also use prophylactic mebeverine for pain and spasm.

Maureen1958 profile image
Maureen1958 in reply toArnoldAx

I thought that was what you were going to say. Can I ask if you have had a SeHCAT test?

ArnoldAx profile image
ArnoldAx in reply toMaureen1958

No I didn’t, but symptoms and samples suggested BAM, it was some years ago now, but we made the decision to try Cholestyramine because little harm done if there was no improvement & thankfully there is a noticeable difference, one I recognise more if I forget to take it! It’s not a perfect science and stress etc will over ride any meds. But as you said in your original comment on the post on good days we should be thankful and I have more of those now thank goodness. Do you also have bile acid malabsorption? Did you have the SeHCAT?

Maureen1958 profile image
Maureen1958 in reply toArnoldAx

Yes, did the test about 4 years ago, my cousin was diagnosed with it, we had both been suffering with IBS for years, so I asked if I could try a bile sequentrant but they made me have the test but I didn't quite reach the criteria, so they won't let me have the medication.

ArnoldAx profile image
ArnoldAx in reply toMaureen1958

That’s so sad & I'm so sorry to hear this. they’re old drugs the generic versions really aren’t v expensive, it would I’d have thought just made sense to try it, let’s face it if you had BAM you’d know if there was an improvement v quickly. Could youAsk for a second opinion? If private consult is an option, which I appreciate it isn’t for everyone there could be more scope for discussion ? However even though I initially feel outrage on your behalf, perhaps if the outcome of the test suggested this not to be the diagnosis then maybe they’re right. But I am very sorry all the same. Ax x

Boxroad profile image
Boxroad

Hi When my diarrhoea is really bad I take Imodium it calms it very quickly, look at what your eating as well? Look at fibres soluble and insoluble both are needed but act totally different, I can’t tolerate tap water and where I live in Essex the fluoride levels are rather high and I think it’s the fluoride that makes it worse, when I spoke to my dietitian she said it’s common for IBS sufferers not to be able to have tap water.

ArnoldAx profile image
ArnoldAx in reply toBoxroad

I did not know that about tap water, interesting and one to consider when I’m in a hard water area. Thanks, Ax

Azazealblack profile image
Azazealblack in reply toBoxroad

That is really interesting all i really drink is water now has soda or juice are just not good for me at all

Boxroad profile image
Boxroad in reply toAzazealblack

You need to try a few to find one that suits you, I find the water from sheply springs is ok for me, it is available in a few supermarkets

Maureen1958 profile image
Maureen1958

Hi, I think the best way to deal with it is one day at a time. If you have a bad day, learn from it if you can, and when you have a good day give yourself a pat on the back and again learn from it. Treat it a bit like a battle. When I had a good day, I would say something to myself like "well done Maureen, you won today" Try not to let it get you down (I know how hard that can be). And when the IBS wins just say "Okay you won today, but tomorrow is another day! You never know you may win the war eventually. Although that hasn't happened to me YET!

Sparrow58 profile image
Sparrow58 in reply toMaureen1958

I agree one day at a time is best and hopefully the good days will outnumber the bad ones.

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