Treating symptoms causes more issues.

[Mumof31983]

So if I use a medication to fix a symptom, I can end up worse off. Recently I took mebeverine to slow motility as I pass a lot of bowel movements a day. It was to help with morning cramps. I just felt sore, constipated and couldn’t eat as normal after. So the mebeverine fixes one problem and causes another. Anyone else feeling this way.

[Luisa22]

I wonder if a smaller dose might work for you? I don't know how mebeverine comes...is it a capsule or a tablet? You could maybe try with half the dose. Either open the capsule and halve it or cut the tablet in half. I hope that works.

[Mumof31983 in reply to Luisa22]

I wonder if that could work. I am underweight.

[Hidden]

Hi,

Not only treating IBS but other health treatments can destroy the gut. Massive amounts of anti-biotics initially destroyed my gut. It has taken me 7 months to go from no drugs and a manageable gut, to BP meds, gastro meds and type 2 diabetes meds to finally stop eating with a destroyed gut. Go off meds and the stats get better including my kidneys, which none of this is supposed to happen with these so called kidney friendly meds. Friends like these I don't need but can't survive without! Test results prove my point, my Dr's can't refute their own test results. I have gone through the meds, no meds, twice now to make sure of the results and yes same result each time. I react to most meds in a way most people could only read about. Just been crippled from 3 tabs of Baclofen. Eye sight impaired, unable to support myself without walking sticks, vertigo like symptoms and more thrown in for good measure. Empagliflozin causes me anaphylaxis. A shock to say the least when I'm told by my Dr no way.

Not what ED diagnosed, anaphylaxic reaction!

With 15 mini strokes over 3 days I'm forced to go back on meds if I want to preserve life, my kidney function is dropping yet again. Damned if I do and damned if I don't.

I stopped taking Mebeverine months ago as it didn't suit me. I have been put on Domperidone as a replacement. So far 4 weeks in and no adverse effects but I'm unsure just how much it is helping yet, I think it is helping.

Currently find not eating works the best for me. The bloating, reflux, GORD, raw lips and uncomfortable stomach all go, but then so does my ability to survive!

As much as it is an inconvenience, all you can do is trial medication and give your Dr feed back, good or bad. This is the only way they can change your meds if required to suit you. Medicine can react very differently for some people.

[MyStar86 in reply to Hidden]

do you mind me asking what reaction you had to baclofen? I noticed my gastro symptoms are more painful with cramping since taking them but I wasn’t sure if it was linked xx

[Hidden in reply to MyStar86]

Hi,

I had difficulty controlling my muscles below my waist and found unless I was moving at a brisk walking speed I was prone to stumbling and falling. Had to deploy a pair of walking sticks to support myself. My eye sight was difficult to focus and when I did get it right, text sizes would change with each blink. Confused and seriously constipated, freshly laid bricks without mortar spring to mind! After taking my morning pill I became hyperactive for the first hour then became tired and found it incredibly difficult to stay awake until the next dose. I recorded a 10 hour sleep one night after sleeping most of the day. I'm usually a 5 hour per night sleeper. I was lucky that I kept forgetting to take the pill most of the time but always remembered in the morning when the medicated state was at it's weakest point. I'm now 1 week off it and have a residual twitch in the right eye which distorts the focus when it decides to be inconvenient. I'm unsure if this is from the baclofen or not, just hope it goes away. I managed just 3 pills when I'm supposed to have had 8 in the time frame. I wonder what would have been had I remembered to take the full dose!

Cheers

[Rozzy46 in reply to Hidden]

I've just read your post and wanted to say how terribly sorry I am to hear what you are going through. It sounds so much and I think you have to trust your body as to what it can tolerate. Not eating isn't good though either as your system gets out of synch and lack of essential nutrients and electrolytes deprives the body of what it needs to recover and help kidney function. I'm the same as you regarding all drugs - I have an extreme reaction and I avoid them as much as possible. I struggle with drugs for high blood pressure and take a minimal dose. Have you tried relaxation breathing as it can help soothe the system and reduce the anxiety. So sorry - try and trust that all will be well.

[Hidden in reply to Rozzy46]

Tell me about it. The longest I have managed without food was 2 months living on cups of tea, white and sugar. I got to the point I was scared to break wind in case I disappeared!

Tried most everything that can be backed up with scientific proof and a few things that can't be, just in case. Tired of being told not to worry. Great words, but as yet nobody has been able to show me the switch. Woke up this morning with raw lips, particularly left side which has also dribbled out and caused the outside of the lips to become raw as well. Must have been a fantastic dream is all I can think!

Ten days until I'm fitted with a data logger to log the ph levels over 24 hours. Just hope it is a day I have a big flare up. Can't cheat this one as I have to record everything that goes into the mouth (fortunately nothing coming out of then mouth!) and every reaction.

The point I keep making to my Dr's is that it appears to be the quantity of food that triggers my problem. I had 2x saveloys with 2x slices of wholemeal brad and margarine and some tomato sauce, less then normal for me. Followed by 2x gluten free toast and margarine with a cup of tea. That is the biggest meal I have had in weeks. I had got to the point of sod it I'm hungry. No lunch and you guessed it a good old cup of tea for breakfast with 1x gluten free wheatbix. Not my normal diet but as I said, sod it, something for me for a change. Yes I'm paying the price, but hell it was a nice change if only minor in the moment.

Strangely enough stopping eating is easy and all the problem abate, making it even easier to stop eating.

Cheers

[Linley in reply to Hidden]

Understand where you are coming from DC39. For a few years now I skip a meal if I am going out or working in the afternoon I have always had alot of stomach acid but by missing a meal I believe that I have given myself acid reflux, and I feel worse than when I have my diahorrea attacks😞

[Hidden in reply to Linley]

Hi,

So far the only thing I haven't tried is death it's self. Well not recently anyway, although surviving one death and many near misses does make me indifferent to it. Living on the ragged edge with severe IBS does keep it in the mind, constantly. After surviving 15 mini strokes last month without lasting effects tends to focuses the mind some. Once past the shock of how lucky I have been and I do understand just how big that dodged bullet was, I tend to think what would it really take to end it all. Can't help but wonder just how far the brain will push the body for the thirst and addiction to life.

Do I stumble along as always getting back up and fighting for life with each knock back or is it time to let nature take it's course to the inevitable conclusion we all get to in the end.

I get incensed with being told I'm depressed when in fact I'm utterly frustrated with idiots that won't or can't listen then act accordingly. Few understand death is a real option when born of frustration of all the pain and suffering you go through while waiting for change or help that never arrives.

Think of your worst stomach pain you have ever had and figure that non stop for a decade, now you are getting close. Multiply that with constant constipation and a spattering of diarrhea thrown in. Pun intended! That's the wonderful world of IBS, never a dull moment, full of flare ups and desperation. Lurching from one situation to the other and back again, constantly revolving.

For the moment I have a good team about me doing what they can to help. Just a pity it is taking so damn long to get anywhere. Then again what is a few months compared to the decade waiting for help.

I'm cursed with not being able to give up on anything I do or touch. I have to win, I have to beat the odds, I must see it through. Doesn't mean I succeed, but it does mean I will push myself to the absolute limits before buckling.

Ah, it would be so much easier to just give up, maybe one day the brain might realise that. But for now I have a fight that requires my attention and some porcelain that requires polishing!

Cheers

[Linley in reply to Hidden]

I am so sorry to hear you are suffering from complex issues and I hope you have the strength to get through them. Good Luck🤞

[Hidden in reply to Linley]

Hi,

I look good, I sound good so I must be good. If only! It doesn't help I don't look anywhere near my age as well. I usually find it easier to just say, everything but my heart and lungs are trying to kill me.

I'm ever mindful there are others far worse off than me. At least I can walk, talk and cause trouble. So, my wife tells me I must be OK, who am I to disagree with the Boss!

Cheers

[Shepherd777]

It is a constant battle between loose stools and painful constipation. My wife uses hyoscyamine to reduce cramping and slow motility so she can go out and about. Than 48 hours later she is constipated and bloated so she drinks slippery elm, takes stool softeners and Miralax. Than she can go no where for most of the day. She has had 4 gastrologists over a 15 year period, and they all say, yup that is IBS or IBD and nothing more we can do for you.

[Misspomfrey]

Hiya

I ditched the Mebeverine years ago, made me a lot worse. I came to the conclusion that prescription drugs are not for me and I've dealt with it myself ever since. I try to think natural all the time including food. Anxiety is my worst enemy, controlling that gives brilliant results.

[Mumof31983 in reply to Misspomfrey]

I found yoga and meditation useful day to day but not useful at all when the symptoms start.

I used to be able to control ibs with food and not eating but now I have the symptoms even if I eat.

[Misspomfrey in reply to Mumof31983]

Hi

Yes, I understand completely, once the IBS symptoms start, there's no stopping it no matter what you do. It's prevention I have to work on. I live in Cumbria and do a lot of walking, climbing, etc and it's been my savior. But once it starts, I can't go out and if I do, I'm worrying 😞 in case I need the toilet. Fortunately thus far I've got away with it, but one day I'll get caught out I'm sure. There's no toilets on top of mountains ! 😏. If I can manage to go out though, after walking a few miles I feel tons better.

When I'm not feeling good, I feel really down and nothing can shake it off, I also get fast heartbeats and feel unbelievably tired and lethargic. Then once it's passed, these symptoms go too. Do you experience this?

[Luisa22]

I rarely can take drugs for anything either, I have such a bad reaction to many drugs. That happened even pre-IBS when I was much younger.

I take herbal remedies or homeopathic which have helped me to some degree (I am better than I was a couple of years ago) and seem okay for me.

[Linley]

Perhaps your GP could recommend something else. I personally find Mebeverine helpful. As the saying goes one man's meat is another's poison. Good luck in your search for comfort🍀