Remission from IBSD

[Tigger07]

Hi, Ive had IBS-D for a few years now, Sometimes I'm too frightened to go out anywhere in case I have an accident but im kind of controlling it by taking immodium beforehand. Im fine most times when ,I'm going to work . What I'm wondering is that sometimes for about 1 week a month I can be fine even when Im not watching what I'm eating or drinking and yet the rest of the tine I get really bad cramps and diarrhoea after eating. Its great for that limited amount of time feeling what it must be like to feel normal . There seems to be no pattern, like what am I eating to trigger this the rest of the time. I would like to know if anyone ekse experiences this.

[Luisa22]

Yes, I do experience the same thing. All of a sudden my gut turns 'normal'. No change in diet is involved, and it's not to do with stress, sleep, or anything else. It just happens of its own accord. This past summer, and that's for over 2 months, I was totally normal 98% of the time. I had one or two mild glitches for a day, and that was all. Even during the heatwaves.

At first, I used to get those mini remissions which lasted a few days only but as time went by, I sometimes do get longer periods, so I hope you will, too. But it does seem nothing is fully predictable with IBS. I wish I knew....what exactly is it that just switches on and off and why?? I have done hours upon hours of research and my own 'detective work' and am no closer to knowing what it is.

[JanetJAM in reply to Luisa22]

yes this happens to me too we went to Greece for a weeks holiday and I was completely normal the whole time I was so worried the change of food would make it worse but it was great you just never can tell.

[Whitesugar]

Have you been tested for Bike Acid Malabsorption? It is frequently misdiagnosed as IBS. Check out bad-uk.org/

[Tigger07 in reply to Whitesugar]

Thanks I'll take a look at this.

[Luisa22 in reply to Whitesugar]

Is BAM all the time, continuously? Or can it disappear for days, weeks etc and just flare up sometimes? I am probably wrong but imagined if there's malabsorption it happens every day (?) I can never find a clear answer about that.

[Whitesugar in reply to Luisa22]

I can only answer for myself as an expert patient! I am sure everyone is different, but my experience was normal for days then with no warning my large bowel would start to rumble and within minutes that would be it, I’m sure you can imagine. I put up with this and all the horrible situations it got me into for over 40 years with a diagnosis of IBS. Since being diagnosed with BAD in 2018 and taking colestyramine I have never had the diarrhoea again. It seems logical to me that fluctuations in diarrhoea may depend on how much fat you eat that determines a good or bad day, but I’m only guessing. An expert gastroenterologist with an interest in BAD would need to answer that question.

[Maureen1958 in reply to Whitesugar]

Hi Whitesugar, I hope you don't mind me asking but do you find Questran more effective than imodium is? Do you take the original one or the Questran Light? I ask because I had the SeHCAT test about 4/5 years ago but didn't meet the criteria for it. But I recently got my notes from the hospital and I wasn't far off the cut off point. I, like you, have had IBS for nearly 40 years. I am 64 now, and mine all started when I was about 27/28. I didn't make a note of the date as I didn't think it would last this long! 😊

I have tried imodium on occasions but I find it makes me feel like I need to go even more! I have always said that I am wired the wrong way round! 😊 I did try pepto bismol lately but I haven't bothered with it since, so it couldn't have been much use.

My bowels are not actually as runny as they used to be now but I still feel I have this constant drip running down through my colon. What I think is happening is the solid that is in the colon is absorbing the liquid that runs down but while it's doing that it makes me very jittery and I feel it might run out! I don't know if any of this I am saying strikes a cord with you. I would be most grateful if you could give me your thoughts on what I have described!

Many thanks, Maureen

[Whitesugar in reply to Maureen1958]

Hi Maureen. I started with original Questran which I got on well with, but when there was a supply issue a few years ago my pharmacy switched to a brand of colestyramine made by Mylan. I have used that ever since as I don’t think it is useful to keep switching brands. It is a light version with artificial sweeteners, but seems to be ok for me. I do take an Imodium every other night as I find it keeps me stable and is more palatable and less complicated than taking a second sachet of colestyramine (any other drugs have to be taken an hour before the powder or four hours after the powder). I did use Imodium as a rescue remedy before I was diagnosed with BAD, but of course it isn’t the answer. I don’t relate to the feeling you describe in your message. I often read your posts and wish you could have a trial of colestyramine. I did not have a SeHCAT scan, but was given the diagnosis after trial of medication (and the full set of tests to eliminate other bowel conditions) by a gastroenterologist who recognised the problem from my symptoms.

[Maureen1958 in reply to Whitesugar]

Hi Whitesugar, many thanks for replying to my questions. It's very kind of you.

I tried to get my doctor to just prescribe me some questran to try but she said I had to do the test. I'm not very good with taking tablets, I usually crunch paracetamols when I occasionally take them. You have to swallow a radio active capsule, so have to swallow it straight down. I spent several weeks beforehand practising swallowing things to see if I could do it without reaching or being sick. You can't mess with the radio active capsule. Luckily on the day, I managed it okay but had visions of me coughing the thing out, which I often do with pills. Luckily it was quite small but when I had phoned to find out how big the pill was, I was just told it wasn't too large!

Anyway, my next step it to go through Benenden Healthcare. I am thinking of giving them a ring to see if they can give me a trial of Questran. I would have to pay for it, but I don't care about the money, and if it works, I can back go my GP and argue it out with her!

Thanks again for your help.

[tomc]

I did B4 i got an Ileostomy. now I am wary going out incase the bag fills and bursts, but, at least I can feel a lot better than B4 the operation.

There is no accounting for why you feel good one week and so down the following.

Just keep a note of any foods that irritate and foods that don't keep a diary to help any doctor with your condition.

[Ruthy1960]

Hi there, I know exact what you mean, i am very like you. I don't work anymore which makes it a bit easier to manage my life. I do get very depressed but have a very supportive husband luckily. Sometimes I'm not sure if it's a stomach bug i have or my ibs and it can go on for weeks. I take buscopan for cramps and immodium occasionally if it's particularly bad. I can also like you go for weeks and have no problems at all. I try to stay positive and unfortunately my son has ibs as well. I wish you well, keep smiling. X

[Sparrow58]

IBS seems to have it's own rules. We just have to accept the good days and manage the bad. If only someone could find out why wouldn't it be wonderful!

[linedance]

Yes, I have exactly the same experience. I find that taking immodium does help to calm things down and makes me feel safer when I am out and about. Just last night I started getting the usual griping pains but I had not eaten anything out of the ordinary in the last week so don't know what caused it. But it does make you on edge especially when staying in someone else's house as we did recently.