Hello and good morning. First of all, sorry for the long post.
I’ve recently joined the network as I am the main carer for my disabled sister whom has learning difficulties. I am really struggling with what foods to prepare for her and what to avoid.
Her GP says she has IBS. I am a very plain eater and pretty much clueless about a lot foods.
She used to eat anything, always loved her food. But for the last few years this has become an issue. She’s on a soft /fine chopped diet due to choking risks and has been really struggling at night with flare ups. I read one thing on the internet and then another that contradicts it. I’m thoroughly confused.
The doctors aren’t proving to be much help and I’m hoping that I can get real advice from other IBS sufferers here.
I have recognised some of her triggers and have put a very strict diet in place the last couple of weeks to try and help her. But it’s very basic and quite limited due to my lack of knowledge about food and IBS.
We are surviving on very little sleep some nights due to her discomfort and my anxiety levels are through the roof. I’ve started to become almost scared of what I’m feeding her incase she flares up at night. That anxiety being heightened when it does flare up as she cries in pain and I can do very little to ease it. It’s just awful 😞
I’ve cared for her for 21 years now and have never been through anything as difficult as this.
Sorry again for the long post but thankyou if you read this far.
Any advice and help would be truly appreciated xx
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CharlieGirl82
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Hi CharlieGirl82, what a lucky person your sister is to have you!
It seems you are doing all the right things. The fodmap diet is the one that is supposed to help with IBS. See link below, there is a short video about it along with other information
I say "is supposed to work" because it's not for everyone. For some people food is not the problem. But is a good place to start. My IBS started in the late '80s and the fodmap diet wasn't around then, so I just kind of made a mental note if something seemed to upset me. But personally I don't think my problem is food. Funnily enough we had a discussion on here just a couple of days ago. See link below:
Hello Maureen1958.Thank you ever so much for your reply.
I came across the FODMAP diet last week and have been following it since. There are a couple of things in there that I know are triggers for my sister so have avoided those.
There are also a lot of things I have never cooked with if I’m honest.
It’s IBS/C for her but constipation has been a problem for her all of her life.
Her flare ups always seem to be worse at night. She’s cries, is very restless and rocks back and forth with the pain.
I’ve started a food diary to try and help us and the last 3 nights have been good for her. She complained of tummy ache before bed last night but slept well.
I’m not entirely sure if I should be but I’ve been using gluten and lactose free products. But she’s missing her usual snacks and treats and I’m worried after reading that stress could be a trigger that not having these may start to distress her.
Can I ask if you know if IBS affects the bladder? My sister isn’t usually incontinent but occasionally when she says her tummy hurts she has been incontinent.
Thank you again. I shall have a look at the links now ☺️
Hi Charlie, regards your comment about using gluten and lactose free products, if your sister is missing these perhaps try her with one of her favourites but just a small amount and if that is okay you could increase the amount. Then if that seems okay you could do the same again with another gluten or lactose product. If she can tolerate one gluten product she may be okay with gluten and the same would apply to lactose too. But just do it all very slowly, perhaps make it like an game/experiment for your sister, so if she is okay with something she can be happy to be able to have that product again.
Regarding your question about IBS affecting the bladder, I would say yes it does, because when my bowel is pushing on my bladder it makes me want to wee too. I am an old hand with this and I just ignore the feeling of needing a wee, in fact I have found that by having a small drink, about 125ml, the feeling of wanting a wee seems less intense. Of course that may just be me, but might be worth a try.
We’ve been and the doctor has prescribed Amitriptyline 10mg tablets for bedtime and some peppermint oil capsules. My sister has been referred back to the dietician and also asked to provide a stool sample.
I’ve been to boots and picked up a box of Alflorex to try. At this point I am willing to try anything!
My worry is that doctors aren’t trained in this area and can only hope the dietician referral doesn’t take too long.
Oh my gosh! IBS as well as everything else must be overwhelming for you and for your sister. Flare ups are so unpleasant, and can cause anxiety when they are happening.
I also find conflicting information on the internet so you are not alone with that. For instance, one website says asparagus is low fibre, another says it's high fibre! And quite a few other inconsistencies all over the place.
Thrown in at the deep end, you have done brilliantly well finding out some of her triggers. I guess those are certain foods?
Does she have IBS-D (diarrhea) mainly, or IBS-C (constipation)? Because which foods are good for one might make the other worse.
Have you investigated the "Low FODMAP" diet?
Now, because we are all different, I find the low Fodmap foods a decent guideline, but it doesn't necessarily mean ALL low Fodmap foods will suit. They don't all suit me at all. The plan is to eat only low Fodmap for about 6-8 weeks, and to see if it settles the symptoms. Then to gradually, one food at a time and in very small amounts, re-introduce some on the "high" list. The reintroduction phase is experimentation of course and some foods we try to reintroduce can cause flares again.
The secret is to try very tiny amounts at first, see how it goes, wait a couple of days, then try again, and gradually to increase the amounts.
The strategy is to find out if there is something that causes problems in digestion. It could be gluten, or fructose, or any sugar. or any alcohol (though that probably doesn't apply to your sister). or it might be lactose. etc. If it is lactose, there is an enzyme called "lactase" which the doctor can prescribe and usually works to make dairy products digestible.
But usually with all those suspects, the elimination phase should give good clues. If symptoms improve when something is cut out (like gluten for instance) then that's obvious that gluten is a big trigger.
Sorry, this all is so complicated and I hope I'm not laying too much on you. You must feel overwhelmed and exhausted.
I am at risk of writing a thesis here!! 🙄
Another thought is any medication or natural remedy that might help with the type of IBS she has (anti-diarrhea medicines, or fibre supplements, probiotics etc)
Please, if any question springs to mind, ask. I'll leave it at that right now, but there are loads of other things I could mention.
Good morning Luisa22. Thank you for your reply. This is all so difficult I really do appreciate your advise.
It’s IBS/C for my sister. But constipation has always been an issue for her. She’s 55 and for as long as I can remember in my own 40 years she has struggled with it. Just the last few years she started to change and with that constipation that she usually coped with ok came the tummy pain.
Im currently following the FODMAP diet and had 3 good nights in a row but last night was bad. She was very unsettled and crying in pain after being asleep around an hour. It’s always at night when she goes to sleep that it starts. Its just soul destroying to watch and is so upsetting for me that there is nothing I can give her to ease the pain. We just have tummy rubs, hot water bottles, a peppermint tea and chat to try and take her mind off it.
She has 20mg of buscopan before bed along with some other medications for her other conditions. I don’t feel the buscopan are helping at all. I am going to call the doctors this morning to discuss this.
Sorry if I’ve rambled a little, I’m from very little sleep this morning.
It is possible that your sister has a gut bacterial imbalance, which might be contributing to the pain. This is what happened to me. Alflorex probiotic which has been scientifically studied for IBS has worked wonders for me in terms of the pain. I am also now more tolerant to a wider variety of foods. If that doesn't work entirely and I see that you mention IBS-C, I am also taking Linactlotide for IBS-C. Ask your doctor since it is available on prescription. In addition to helping with the 'C' it calms intestinal nerves, helping to reduce the pain.
You are a wonderful person to have cared for your sister for all these years. Are you getting enough support yourself? For example, respite carers that will allow you to have a break now and then?
Hi xjrs, thank you for taking time to reply to me.
I’ll be honest and say that I really have no idea if it could be a gut bacterial imbalance. I will have a read up on this.
I watch her at night and it seems to kick off soon after she settles to sleep. She rocks back and forth with short 15-30 second breaks in between each rock. It’s almost like the pain comes in waves, like a contraction maybe.
The hardest part is that she has very limited understanding and communication so isn’t able to help me with any of this. All she says is that her tummy hurts and she cries, really really cries. It’s honestly so upsetting.
She does have carers that work through the week but that isn’t everyday. She sleeps out once a fortnight but I’m honestly struggling. I have 3 children, 2 still at home with my youngest being 12.
Statistically more people with IBS will have a gut bacterial imbalance than those without IBS. It isn't something that needs testing for. However, it is worth trying a good probiotic such as Alflorex as a trial to see if it helps. If it does, you'll know that that has been a contributing factor. I know a lot of people with IBS try different things until they hit on something that helps them. Good luck.
We have a doctors appointment today. I’m going to mention some of the things I’ve learnt and hopefully we can get my sister some help. Thank you again.
Good idea. Please be aware that doctors tend to prescribe drugs and unfortunately don't always talk about non-drug therapies such as probiotics. Might be worth bearing that in mind. It's a shame since there's much out there that has a lot of science around it, but their training limits what they can recommend.
We’ve been and the doctor has prescribed Amitriptyline 10mg tablets for bedtime and some peppermint oil capsules. My sister has been referred back to the dietician and also asked to provide a stool sample.
I’ve been to boots and picked up a box of Alflorex to try. At this point I am willing to try anything!
My worry is that doctors aren’t trained in this area and can only hope the dietician referral doesn’t take too long.
Amitriptyline is the standard treatment for functional abdominal pain/visceral hypersensitivity which can be an aspect of IBS. There is information about that here:iffgd.org/lower-gi-disorder...
It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by stress. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate.
Also as mentioned a gut bacterial imbalance might end up sending more pain signals to the brain in addition, so there is a double whammy effect. Great that you've picked up Alflorex to try. However, I would be tempted to try the Alflorex prior to the amitriptyline otherwise you won't know which one is helping her. Though you might need to wait a few weeks to find out if it is helping. In my case I experienced benefit from Alflorex after a week, but everyone is different.
Note that amitriptyline can cause constipation, so it may make her constipation worse. If it does or she can't tolerate the amitriptyline (I was unable to), it is worth asking about Linaclotide which only acts locally in the gut, plus it is meant to help with the constipation side too. With Linaclotide the pain effects are experienced the most around week 10. Good luck.
Thank you, I honestly appreciate you taking the time to reply with all this help. It’s helping with my anxiety about all this.
We started the Alflorex yesterday and I gave 1 of the 10mg Amitriptyline as my sister had complained of tummy ache all day. She was exhausted and still in a lot of discomfort at bed time.
Thankfully she slept really quite well and has woke in an extremely good mood. She’s currently singing her little heart out to her favourite Daniel O’Donnell cd ☺️
My plan is to get the Alflorex into her system and only use the Amitriptyline if she’s showing discomfort on the run up to bed time.
Can I ask if you know which would be the best laxative to use for her? She had movicol for years but refuses it now so we have Lactulose 3.3G. I have a friend that says this can cause excess gas and tummy grumbles. This now worries me as I don’t want to be giving her things that are potentially making her situation worse.
That's so great that she's had a good night's sleep. I would get advice from your doctor about the Amitriptyline, since I don't think that you can take it like a normal pain killer on an as needed basis. It is one of those things that builds up in the system I believe. Plus to come off of it you normally have to taper down e.g. take it very other day instead of every day or then every three days etc., but all of this needs to be done under the guidance of a doctor. I understand that if you take it on an adhoc basis it might mess with the levels of different hormones which may not be good for her.
I haven't used laxatives myself (apart from Magnesium Oxide, but I wouldn't take that long term), but I have used Optifibre, which acts as a bulking agent. It is also a bit prebiotic - this means it feeds gut bacteria, so it needs to be worked up slowly in terms of the amount to let your body get used to it. How to work up the dose is on the tub and with the information provided by Nestle the manufacturer online. I found that there was a particular dose that helped me without causing excess gas.
You could also try ground flaxseed, adding it to cereal. Also, how much fibre can she tolerate such as wholemeal bread, oats, oat bran, All bran, buckwheat pasta, quinoa, new potatoes with skins, pre-soaked chia seeds, high fibre fruits such as raspberry, dried apricot, 2 kiwis, oranges, 2 small pears? It's always good to work on the fibre if she can tolerate this first. If that's causing too much pain then the Alflorex or Amitriptyline or Linaclotide can work on that, increasing tolerance to foods and allowing you to increase fibre in addition. It is always good if you can enhance the diet more so than relying on laxatives.
Lactulose certainly isn't very good for IBS sufferers.
I spoke to a friend about the Amitriptyline this afternoon and she said the same as you about not using it on a needle basis, the doctor didn’t make this clear to me. I think I may try just the Alflorex as you suggested to see if that makes a difference on its own first.
I’m going to look into seeing a dietician privately as I think the waiting list on the nhs will be quite a wait.
I’ll also be looking into an alternative laxative and I’ll have a read up on the optifibre you’ve mentioned.
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