How do you give yourself security?: Mine is a... - IBS Network

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How do you give yourself security?

darinfan
darinfan
18 Replies

Mine is a bit of a saga. Had IBS for a very long time, off and on. The worst period of flare up (until recently) was one in 2012 just after my dad died. That wasn't severe compared to many of you, but it was bad enough to make me lose my confidence in going out once I had been caught on a bus. I wont go into details.

Then everything grumbled along relatively ok until last summer. I got an ear infection and went to the local walk-in centre and was given some antibiotics. Five days later, explosive diarrhea with blood etc. This went on for four days - obviously the antibiotics were stopped, but the damage was apparently done. After that first bout of four days, I went on a bizarre cycle of three or four days of not going to the bathroom at all (or very little), followed by an evening of diarrhea. And then again. And again. I saw the GP, and various stool tests were done - all negative. The blood had gone away quickly, and no-one found out where it had come from - possibly stomach lining I guess or maybe internal piles even.

Two months passed, and life was a mess. This cycle was ruining life. I was referred to a specialist, but it was going to take some time, and so my mum paid for me to go to Bupa. Neither of us had ever gone private before, but I have bipolar too, and things were pretty bad. Just before I saw THAT specialist, a FIT test had been done, and come back negative. A good start, thankfully. I ended up having a colonoscopy and an endoscopy. The only thing abnormal found was more acid in my stomach than there should be and a hiatus hernia. Nothing abnormal in the colonoscopy. By this point, the specialist had put me on 10mg of Amitryptaline, which seemed to help with the diarrhea episodes, and certainly reduced the pain that came with them. Unfortunately, the scopes themselves started everything off again, and it took about two weeks before my stomach returned to anything like it's normal state (normal for me, that is).

That was the end of October. IBS was declared (presumably exacerbated by the antibiotics). Since then, things have limped along. I seem to have an evening of D around every three weeks. Inbetween that, I often have pain before going to the loo, but it disappears once I've been. No matter whether I'm going normally or with D, I tend to go around two to three hours after my main meal. Often over several visits lasting an hour. That's not abnormal for me. Even when I was a kid. And I assume the D is indeed IBS as it follows that same pattern.

But the biggest problem is that knowing what it ISN'T - and, don't get me wrong, I'm pleased to know it isn't some of the things mentioned by the doctors last summer - or even knowing it's IBS doesn't help put it right. Sure there is peace of mind in knowing that the FIT test and the colonoscopy were clear (if it were one and not the other, I might have questioned something had been missed), but it doesn't help on a day to day basis. And having D on a seemingly random basis, not triggered by anything particular that I eat (or don't eat), means you can't really take Immodium. After all, when I do have D, it's over and done with in an hour or so. It doesn't go on all night, or into the next day. But the constant worry makes life hard work - what time will I have to have my main meal so that I've been to to the loo before I go to the theatre tonight? How am I going to arrange my meals when I'm on holiday? As examples. "Luckily" in the context of this, I don't work as I have severe arthritis too. Otherwise it would be more of a nightmare

But I was wondering how others of you with a similar scenario "cope" and manage to work your lives around the IBS? I know some of you have the IBS-M variant, which I guess is the nearest to mine (there are often two or three days a week when I don't go), so how do you make yourself reliable for the things you HAVE to do on a daily basis - or even when you go away, or go to the cinema, etc. What do you do to give yourself some security, if only for special occasions? I am doing a gig in March (I only do a couple of year) and I am really concerned this year that IBS could really screw it up. My thinking at the moment is that I should live on crackers for two days before it!!!

Thanks.

18 Replies
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jbrking

Hi. My story is similar. Was told I had IBS for years or it was what I was eating. Tried cutting out wheat and dairy and did fodmap diet etc. Cut a long 20 year story short it go so bad I was up every night for a couple of hours sitting on the toilet and being sick in the sink. Had colonoscopy which was clear. Gastro then mentioned a little very undiagnosed condition called bile acid malabsorption (bam) sometimes called bile salt or bile acid diarrhoea. Basically when you eat you release bile. Any unused gets reabsorbed and reused. If it doesn’t get reabsorbed then it comes out in watery diarrhoea. It causes pain, explosive diarrhoea etc. I try to eat little and often but if I eat a a bigger meal I assume more bile is released. I can’t eat anything fatty. Caffeine is also a trigger. Anyway diagnosis is through a sehcat scan - you take a tablet and are scanned a few hours later. And then scanned again a week later to test your retention. I am now on special binder medication which is wonderful! Have a look at bad-uk.org website and see if you think this is what you have. Gastro told me it’s the most undiagnosed condition and lots of doctors don’t know much about it. It’s very important as you can’t absorb certain vitamins properly so I have to take supplements for Vits D and B12, iron, potassium and mega strength fish oil tablets (prescribed 4 a day) because I can’t maintain my good cholesterol. Worth investigating as the longer you leave it the more damage lack of vitamins has done to me. Maybe worth keeping a diary for a week or 2 and note everything down - what you eat/drink, time, bowel movements etc. Good luck

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darinfan
darinfan
in reply to jbrking

Do you mind me asking if there were side effects to the table you had to take for the test?

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jbrking
jbrking
in reply to darinfan

None what so ever. In fact the week in between the scans I had a really good week diarrhoea wise and was worried that the test wouldn’t show anything. But it did confirm it. As others have said about the meds, I take a sachet of a med called questran which is a brand name for cholestyramine. I still get the gurgling after I eat but the meds stop it being so runny so not the quick dash to the toilet or have any accidents in the night!

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darinfan
darinfan
in reply to jbrking

Thank you :)

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xjrs

I reiterate jbrking. Also, you don't specifically mention if you have been referred to a dietitian to take you through the fodmap elimination and reintroduction diet. If not, you can ask your GP to refer you. This cured my unpredictable diarrhea.

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darinfan
darinfan
in reply to xjrs

I have tried the Fodmap before and it did nothing, alas. That said, I have always eaten bland foods - not because of IBS, but because it's what I prefer. The specialist ruled out caeliac's, which is something, at least.

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xjrs
xjrs
in reply to darinfan

The fact that you don't respond to a fodmap diet is interesting and could point more towards Bile Acid Malabsorption. There are others on this post more familiar with this than me. I do hope you get the right diagnosis so you can get treatment and move forward. Good luck!

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Whitesugar

Just like jbrking I was going to suggest Bile Acid Diarrhoea (BAD). I had it for over 40 years before a gastroenterolgist suggested I try the bile acid binders medication. My diarrhoea was unpredictable and erratic and apparently unrelated to my diet. I would get a sudden gurgling in my descending colon and would know what was going to happen next. I have been on the medication (a powder generically called Cholestyramine) for 18 months and have never had another incident. The BAD website says they think 1 in 3 people diagnosed with IBS may have BAD.

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darinfan
darinfan
in reply to Whitesugar

I get the gurgling, too. It's like someone taking the plug out of a sink of water, and it gushes down your left side. I know that's a random description. But I get it literally about 30 seconds before the diarrhea comes - I normally have the pains and feeling of wanting to go for about half an hour or so before that. Does that sound familiar?

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Whitesugar
Whitesugar
in reply to darinfan

That is exactly it

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darinfan
darinfan
in reply to Whitesugar

Thanks. There is at least some comfort in knowing someone else knows what we're talking about!

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darinfan

Thank you. I will chat about this when I see the doc in ten days or so.

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Maureen1958

Hi, if you don't get diagnosed with bile acid malabsorption also called bile acid diarrhoea, then all I can suggest is that you live your life as best you can working around your bowel. You don't say how old you are but must be relatively young as you mention your mum. I have had IBS for 35 years now and have not come up with any answers as yet! I just try to go through my day as best as I can, doing what I can when I can and going to the loo as and when if I really have to. I always go first thing, after 3 mugs of tea, but never know what will happen after that, I just try to go with it. Somedays I can hold the rest and other days I have to go back to the loo, but I am not able to go back once, I always have to go back twice and on that last attempt, in order not to have to go back again a fourth time, I just have to stay in the loo as long as it takes. I have tried fighting it but doesn't work. I am lucky in that I don't have to work either (I'm 62 in February). I guess what I am saying is that you just have to change your life to work around the IBS. My life has gradually become almost non-existent now but you have to just enjoy the little things in life. Sometimes if I'm feeling alright I will go out and have a cake and a drink in a cafe. That to me is probably like somebody else (a normal person without IBS) having a weeks holiday by the sea. I don't know if that answers your question or makes you feel better about your own situation!

As regards your gig, sometimes I find if your really have to do something or really want or need to sometimes you just manage it somehow but you don't how! I spoke to a nice doctor I had many years ago about this and he said it was just the way the body worked if you really have to do something but it can't do it on a daily basis. I guess it has something to do with adrenaline!

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darinfan

I hope so! I'm 45. I think the most annoying thing for me at the moment is the unpredictability of it. I get the pain before going to the loo probably four days a week, but nine times out of ten, I just go normally. A bit like giving birth, sometimes, but get there eventually. And then (at the moment) every couple of weeks it's a diarrhea effort, and you never can predict it. The only plus side is that it normally only lasts an hour or so and then it's over - even yesterday, when it was the worst it's been for a while, it was 90 minutes and finished. I'm sure (says he, lying) the show/going away will end up fine - and I'll eat extra carefully that week, to try to keep it in check. The wonderful world of what I now call "cream cracker" days.

I have to say the BAM thing, when I looked it up, does seem very familiar to me - especially as the excess bile was found in my stomach during the endoscopy. I always find I go looser when I've had more of something like Gaviscon - but perhaps it's not the Gaviscon that makes it loose, but the reason why I'm taking it! So, while I'm not hoping it's BAM (that would be a bit silly), I could take away from such a diagnosis that at least I now know what the problem is and I could set about working around it. A general "IBS" diagnosis doesn't really help anyone (except put your mind at rest it isn't something growing), as you don't know what to do to help it.

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Maureen1958

Sorry I didn't get back to you last night, I came over rough again.

I was tested for BAM about two years ago but didn't have it. I have a cousin with it, so I think that's why they agreed to test me for it! But I was quite down after being told I didn't meet the criteria, as I find people in general (ones without IBS mainly) just think it is trivial and don't understand why you can't do things. I felt a bit down for a couple of days but pulled myself together and got back on with life as best I can. But I agree with you (as I think most people would on here) that it's the unpredictability that makes it so difficult.

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darinfan

Thank you for all the replies, comments and suggestions. I'm at the GP next Tuesday and so will discuss with him the bile issue and see if it can be arranged for the test to be done. I wrote my opening post after a particularly bad day last Thursday. Literally no trips to the loo since then until tonight when last Thursday repeated itself. This is what was happening last summer. Every five days. I know it sounds odd to say but it DOES seem "mechanical." What happened tonight was exactly the same as last Thursday - even down to what I have come to call the "aftershocks"...when the main D has finished and you still make an occasional trip for an hour or so and with little to show for it.

I'm guessing that others have the same issue I do in that I feel I can't take immodium to stop it. Firstly, you don't know what day you're going to have it, so you can't take it in advance. Secondly, once the process has started (stomach pains, but barely able to pass anything at all) you think it's better just to let it get on with it as you know that within 90 minutes or so it will have gone beyond the constipated stage, through normal, and ended with diarrhea. i fear that if I took immodium while it was still happening, that it would make things worse, keeping whatever is inside me there and giving me yet more stomach pain! Oddly, today I felt really quite ill for a few hours before it all happened, which isn't normally the case (I feel fine now it's over), and this time and last Thursday there was more D than usual, but it still all seems to be variations on a theme.

In many ways, I hope it is the BAM/BAD that you have all been talking about, as it least it gives it a name, and a rhyme and reason as to why it does what it does. That makes it easier for me to cope with - at least in my slightly bizarre bipolar brain! On the plus side, I've had the colonoscopy and one going down (can never remember what that one's called). And, other for the hernia they were clear. I have to have blood tests every three or four months for my arthritis meds, and so I know blood counts are fine, liver is fine, kidneys are fine. So I'm not sitting here anymore worrying I've got some deadly disease - but, of course, that doesn't stop us worrying when our plumbing problem is likely to occur next! Sadly mine seems to occur after my "tea" (as in 5pm meal), which is a right royal pain in the butt when you want to go out for an evening!

I think when I get to the week of the gig, I shall literally live on ham and boiled potatoes for the week and hope for the best - not that they did me much good today, I might add. Do other people have "safe foods" that they use because they know that nine times out of ten they won't cause problems?

Sorry, I've written loads again!

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Maureen1958

I recognise everything you are saying here, something that particularly resonated with me was your phrase "variations on a theme". The times that I have said that!

Going back to the gig, I'm not sure that it will matter what you eat. Four years ago my son graduated and I so wanted to be there to see it personally rather than watch it on a video after the event. We booked a hotel for the evening before and the next night so we didn't have to pack up and leave the hotel in the morning (in order to give me a safe place). Somehow I managed to get to the graduation that day. I went through the usual morning ritual, but starting ealier, but couldn't go to the toilet. This never happens. So I was panicking. I tried to talk to myself calmly. I waited a couple of hours and tried again. I still couldn't go, so by now it was make or break time. So I got out of the toilet as quick as I could and went and sat down in the room so I could think straight and try and make a decision on what to do next. I realised if I went back to the toilet again I wouldn't make it at all, so I got ready to go. I didn't eat or drink anything else, held my breath (I do that a lot, it's my go to) and off we went. Of course, my husband and son had had massive breakfasts before we left!! I think we left the hotel about 10am and got back about 4pm. I came over dodgy a few times but just kept telling myself I could do it. So like I said above, sometimes if you really want to do something, you can , just not all the time.

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