I've just come across this forum and I'm hoping that you kind folks can give me a virtual hug and some kind words.
To sum it up as briefly as possible, I am 48 and have had IBS for 28 years. Its always there in the background but I used to get serious flare ups that lasted for months if there was a stressful life trigger. Unfortunately the last 3.5 years have been permanently stressful. In October 2020 in the middle of the covid pandemic my Dad suffered a catastrophic stroke following a previous one which had left him unable to walk. Due to the pandemic restrictions we were unable to see him for 6 months while he was in hospital and his move to a nursing home. To cut a long story short Dad's needs were much more complex, he lost his speech, could not feed himself and needed support for everything. In the years that followed he has deteriorated to the point we are at now where he has dementia, is constantly in and out of hospital with infections and is on a palliative care plan as he has prostate cancer. Living like this, losing him a bit every day is horrendous and my IBS is now a permanent thing, however I manage it as best I can and still manage to go to work every day.
This week I have managed to get covid, meaning I cannot see Dad but my IBS has been much worse. Is this a thing does anyone know? I have googled and it says it is but googling is not really my friend as it make me more anxious.
I am just struggling with everything, I have support from my husband, but he works away a lot. My children are grown up and have left home. For 7 years I have been the primary support for my Dad and my Mum who now shows signs of dementia herself. I have two brothers who do nothing to help at all and leave me to deal with everything.
I take mebeverine when I have a flare up which usually helps but isn't doing much this time.
I would just like some advice as to what coping techniques people use if they have stress related IBS. I cannot stop doing what I am doing for my parents or stop working, if it's not going to improve so would welcome any advice as to how people get by.
I've just read this back and it sounds a bit rambled, so apologies but I suppose that's how I feel at the moment
Thank you in advance for anything you have to offer
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MidnightReader
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Argh, what a nightmare, be sure there are people here who can give moral support and some useful tips.
Well mine seemed to kick off big time post-Covid. I do wonder, and have posted about this before. I honestly don't know why this thing comes and goes.
You still manage to go to work through all this! Wow, I salute you. I was already close to retiring when mine kicked off and had many months long-term sick leave. One good thing Covid did do was make teleconferencing viable so I didn't (and still don't) have to go to physical meetings all over the place. I stil do a sort of work, and I can do a lot by WFH.
As for stress, if you can afford it get some professional (not NHS) CBT. There's also an app called Nerva that some recommend. I started to use it until a) I had a problem with the charges (it's not cheap) and b) I felt I was beyond what it could deliver. But from my brief experience I do believe it could be a help and I may rejoin.
Thank you for replying so quickly - thank you but there's nothing to salute I'm afraid, I'm just very lucky to have my own office and a bathroom that I only share with two people who are hardly in the building. I was on long term sick for a long time in a previous role where I was customer facing!
I've had CBT before so that's an idea to look at again and yes I'll have a look at the Nerva app.
Hi, it can be hard dealing with caring for someone and also coping with IBS. I have found that looking at the Fodmap diet has helped (you can ask to be referred to a dietician but there's quite a lot of information online). Since I have identified trigger foods, my symptoms have reduced. Also if you have tried cbt before, you might be able to frame some positive phrases to help you reduce anxiety. If you connect these with an action, eg tapping fingers together, or your temples, or rolling a pebble in your pocket, this might help you regulate how you feel. Good luck xx
Thank you, my daughter has mentioned the Fodmap diet previously so I am going to have a good look online. You're absolutely right about using the techniques I was told during previous cbt sessions - I'm having a terrible day today with anxiety so am trying to get back into the mindset of practicing what I learnt. Thank you for reaching out, it's very much appreciated xx
Hope you're feeling better soon and the cbt is helpful. Fodmap is a nuisance at first because you have to start with a very restricted diet, but once you know your triggers it's easy. You can get an app called fodmap a-z which lists foods so you can look things up if you aren't sure.
My IBS is C so I have no advice to offer but I just wanted to send you a virtual hug. You are going through so much, and have been for several years.
I can really empathise with this as I seemed to lurch from one family crisis to another. After one was dealt with, another always kicked off soon after. My dad also had prostate cancer, my mum had four strokes and I was a carer for my aunt who had vascular dementia, so I know what you are going through.
I have found patient forums like this, to be SO supportive when I have felt alone with no-one else to turn to. Take care, as much as you are able to, with everything you are dealing with, 🫂🫂🫂.
Thank you for taking the time to reply. It means such a lot. It sounds as though you know exactly what I am going through and I'm sorry that you had to go through it too. Losing your parents is unbearable but losing them slowly is worse than cruel, for them as well as ourselves. Thank you for the much needed hugs
First and foremost, I'm sending you a massive virtual hug.🤗 It sounds like you've been carrying an incredibly heavy load for a long time, and I'm really sorry to hear about all the challenges you're facing. It's completely understandable that your IBS has been worse given everything you're dealing with.
Coping with IBS, especially when it's exacerbated by stress, can be incredibly tough. I had a bad IBS attack about 2 months ago from being overworked & family stress and responsibilities Here are a few strategies that might help you manage:
1. Mindfulness and Relaxation Techniques: Practices like deep breathing exercises, meditation, and progressive muscle relaxation can help reduce stress levels. Even a few minutes a day can make a difference.
2. Diet Adjustments: Keeping a food diary to identify triggers can be helpful. Low FODMAP diets have also been known to help some people with IBS.
3. Regular Exercise: Gentle activities like walking, yoga, or swimming can help improve your overall well-being and reduce stress. It has been a life saver for me. helps me keep my body and mind healthy
4. Hydration and Rest: Ensure you stay well-hydrated and try to get sufficient rest. Fatigue can exacerbate IBS symptoms. This can be challenging as I have to care for all my family members and have so many responsibilities..
5. Community Support: Connecting with others who understand what you're going through can be incredibly validating. So glad you reached out.
It's also important to acknowledge the emotional toll all of this is taking on you. Balancing caregiving responsibilities, dealing with your own health issues, and managing work is a lot for anyone. Be kind to yourself and recognize that it's okay to seek help and take time for yourself.
Please remember that you're not alone, and it's okay to reach out for support. Lean on your husband when he's available, and maybe even have a candid conversation with your brothers about sharing responsibilities. Your well-being is just as important as anyone else's.
You are doing an amazing job under incredibly difficult circumstances. Don't hesitate to ask for the help you need and deserve. Hang in there, and take things one step at a time.🌹
Thank you for for getting back to me with so much helpful information, it's very much appreciated. I've tried to start today with a different mental attitude - I keep telling myself that IBS is not going to get the better of me this time and I won't let it win. Whether I can achieve that or not remains to be seen but for me it's a start and all I can do is try. I can't go back to the person I was 13 years ago, when I was off sick because of IBS and scared to leave the house on my own for 14 months. I'm going to have a good look at all the things you have suggested, exercise is certainly my thing. I used to run regularly and need to take back some time for me in the midst of all this.
Sadly I can't have any conversations with my siblings, they do not want to accept what is happening to Dad and Mum so the way they deal with it is to stay away and pretend it is not happening. I do have wonderful friends who offer to help and I think now is the time to take them up on that having always said no in the past as I don't want to be a burden to them.
Thank you again for taking the time to reply to me
I'm so glad to hear that you're approaching today with a different mental attitude. It sounds like you're taking some really positive steps forward, and that's something to be proud of. Remember, you’re doing an amazing job under incredibly difficult circumstances. Taking even small steps to care for yourself is a victory. Keep pushing forward and being kind to yourself. You're stronger than you know. sorry you can't have any conversations with my siblings.. It is a difficult situation. .. It isnt always easy to get others to undersand etc.. You sound like a really good person.🌹
Hi, just wanted to say that even tough my flare up was just as bad this morning I certainly feel in a lighter place mentally today. I went for a short walk in the fresh air yesterday, listened to some music and did some cooking. I thought about what my Dad would want me to do and that wouldn't be to sit there feeling sad about his condition. My Dad is the most unassuming, kind and gentle man you could meet. I owe it to him to live my best life because that is what he would tell me to do if he could.
Thank you for saying that I sound like a good person, I really do try to be one. You also sound like a good person, I've just seen one of your older posts and your words are really inspiring and uplifting 🥰
I developed IBS after my first bout of Covid, and then when I got it again recently it flared up really badly. That said, I was only told I had IBS by docs who didn't do any investigations to rule out anything else (apart from the bowel cancer stool test and blood tests).
Interestingly I have totally perked up after taking famotidine, a H2 histamine blocker. It's not quite resolved my digestive issues which need time to heal and a few more investigations. I do know Covid and other viruses can cause mast cell activation. Not saying that's for you to consider, just sharing my experience this far.
Sorry to hear what you have been going through. Stress is definitely not IBS's friend.
Yes. There is a strong link between IBS & COVID-19. There is scientific evidence that it messes with the microbiome. For many people with IBS the microbiome is out of kilter anyway, i.e. not enough good bugs dominating to stop the bad ones from taking control giving symptoms. COVID-19 has even been known to cause IBS for those who don't have it. It is such a multi-faceted disease. It attaches itself to various sites in the body including the gastrointestinal system. I know most people would rather treat COVID-19 like the flu and it has disappeared from the media (government more concerned about revenue than health), but we are not there yet. I'm hoping one day it will morph to the common cold. I still wear a mask with a filter when I meet others in person. I don't want to go back there again with my IBS, which has improved with careful management.
Some things you can look at are:
1. A good probotic - Alflorex worked best for me - this helps to control bad bugs that cause symptoms.
2. Nerva / meditation / yoga / exercise - anything that can help you relax - I find lavender oil on a cotton pad on my shoulder helpful for calming me down or next to my pillow if I can't sleep. Exercise is brilliant for switching off the fight/flight response, especially running, though may be difficult to be near a loo.
3. If the above doesn't help enough, ask for a dietitian referral from your GP to take you through FODMAP elimination and reintroduction diet, though Alflorex is best first since it may make you more tolerant to different foods.
4. Regarding your Mum, has she had a care plan put in place to give you support? If you ever have a care plan meeting with social services always say you are too busy and too ill yourself to give her the support she needs. Otherwise they will latch onto anything to avoid providing the service. I was in this position myself - very ill mother and I was ill with IBS too.
By the way if you have uncontrollable diarrhoea, try just eating white jasmine rice and some easily digested protein such as chicken (if not vegetarian) for a day to give your bowels a rest. This will be digested in the small intestine only. Once settled, add in a veggie you are OK with e.g. carrots - gradually move towards a more normal diet for you.
Thank you for taking the time to reply. I'm glad to know that there is a link between covid and IBS, thank you for your explanation which was really clear for a non scientific person like me (I did google it but it's a long time since I went to school and the scientific terms were beyond me)
What you say about running makes sense to me as well. I used to be a half marathon runner, tailed it down to 10k's due to injuries but then in January this year I injured my back. I have had intensive physio and am building back up to 5k but perhaps need to find something else to fill the gap as I always felt better when I was running regularly.
There is no social services involvement for Mum as she is deemed to still have capacity at present but I shall be all over it if/when we do get to that point.
Thank you also for all your other points - very much appreciated
Hello and welcome Midnight Reader. Here is a virtual hug from me. I can relate to a lot of what you are going through. My Dad died in 2017 with an unusual form of dementia. My parents refused outside help. We lost mum in 2018 after a fall in the bath from which she did not recover. During this time, I was self employed. My husband had vascular dementia and was in and out of hospital with various things from 2020 until his death last August. So I do understand, and it is very hard. Difficult as it was, I do miss him terribly. It is hard to avoid burn out, which I feel I had, but was dismissed as 'post viral' by my GP. If you can find some help and support, please do. I am not sure my two brothers felt they could help, so in practical terms, that might be a conversation, but again, looks like you might need to instigate it. If you can approach them, do. there are organisations that can help and support both you and the person with dementia. Here is one, but there are others. alzheimers.org.uk/find-supp...
Thank you for taking the time to reply. I'm so very sorry for everything that you have been through with your parents and your husband. I cannot imagine how hard it was for you to lose him to dementia after losing your parents so close together. The fact that you are offering support and advice to me when you have been through so much more is so very much appreciated. Thank you again
The key message I think is that I have come through it. You are already showing that you have great resilience. You are strong. There is no doubt that it is hard. This forum is great for support and help.
Oh dear, you have so much to cope with. I am sorry. I have an elderly aunt with dementia, now in a care home, but I feel so bad as another family member is doing almost everything (simply because he lives closer) I help with anything I can do remotely but it;s not really enough.
For me it's 250 miles nasty train journey with changes, waiting around, taxis etc. I made up my mind to go and help out a while back and two days before going (my bags packed and all) I had a horrible flare up and had to cancel the trip. It makes me feel guilty and useless.
Then lo and behold...as soon as I wasn't going, my gut went "normal" again! and that made me feel frustrated and even more useless because I wasn't feeling bad then.
But to even think of that journey and everything that goes with the trip makes me feel truly sick.
What I have found does definitely help me is finding space (mine is usually in the evenings or even later) where I literally "forget about it all". I put music on, I imagine nice things, remember all the details of walks with my dog in the forest. make a cup of tea, and just switch off from it all for a time. Or I watch my favourite outdoor videos on YouTube. Drop it. Forget about it. Let go of the guilt and pressure and give myself permission to do that for a few hours.
Thank you for getting in touch. I'm not surprised that you had a flare up with that awful journey ahead of you, just the thought of it would have sent me into a flat spin. You shouldn't feel useless or guilty at all, at least you do what you can remotely and your heart is invested in your Aunt's care. My brothers are local and because they don't like what is happening they choose to stay away from it. I find it very sad as Dad is still Dad. however he is. He'll always be my hero, just because he can no longer communicate and I miss the him from before I will never ever give up on him.
Forgetting about it all sounds like an excellent thing to try. I am lucky enough to have a beautiful garden and yesterday the sun came out for a little while, so I sat there with my earphones in listening to music and having a brew. It was nice.
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