Since July, I find my IBS symptoms flare up when I have to travel out. Sometimes I can manage on short journeys but for longer journeys, I always feel ill. In July, I had a really bad experience where I felt really hot and had diarrhea and weakness and was stuck in the public toilet for an hour. Having to catch the train back, it was such a struggle, I wasn't sure if I could make it. I did manage to catch the train but I felt really ill.
I want to visit my family next year, but it is a 7 hour journey - 3 trains in total. I am finding it hard to control my anxiety and I am really worried I will have a bad experience travelling there and back. Any helpful advice? Thank you
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Icecreamforever
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I understand. I am under an obligation to make a 500 mile or so round trip for some family stuff and duties at some point...fairly soon-ish? Possibly early Spring, but maybe before that.
So far, I failed at one attempt in the Autumn. I got a flare up a day before I was due to travel caused by (I think) the stress of planning, packing, hating the idea from the word go) and was forced to get a refund on my booked ticket.
At some future date not to far away I am going to have to gather my courage again. The problem is my IBS comes and goes randomly. When it goes I am quite normal and can take on challenges! When it comes back all I need is peace and quiet , den up and stay at home. There's no predicting that.
I am not going to even go into the misunderstanding we can get when we tell these "normal" people why we aren't travelling yet, or why we had to cancel the travel plan. Even the kinder ones who accept what we say, don't really understand
What to do to make it easier? One option is eat only extremely "safe foods" for a few days before the planned travel.....try methods which can help with anxiety.....use Imodium on a day when we have no other option but to travel. Not too much, but enough to calm things down?
Whichever way, it's not going to be totally comfortable. Being left alone in our safe space to manage our situation gently is better of course. But for unavoidable disruptions like travel we just can't avoid, I suppose we have to find a way to soldier on.
For me, the planning is not the problem, but I have developed a lot of anxiety about travelling. In my country, we cannot get refunds on train journey unless there is good reason, and the tickets aren't very cheap either. Like you, I can't predict when I will have a flare up, I am really worried it will happen when I have to travel long distance.
I have talked to my family about it and they understand. I am unsure about when I will travel back next but thank you for your advice. I will take it into consideration when I do eventually make my next trip.
Yes, I can see it puts more pressure on you when you have a definite ticket booked, and cannot change or refund it. That feeling creates a kind of anxiety anyway.
The same or similar thing happened to me in the Autumn. I had a ticket booked and sent to me. The day before travel, I felt very tense as I am not used to travelling for many years but got prepared. However my gut was affected I think by the anxiety. I phoned and asked for a refund.
It didn't sound like I would get one, until I was asked the reason for requesting a refund. When I told the lady I had IBS, and had started with a flare up of symptoms, she was kind and put me through to get my ticket fully refunded. I was lucky,
You are fortunate that your family do understand about your problem. That's nice of them.
It's great that the lady on the phone understood your symptoms and gave you a refund.
Before this year, I never had a problem with planning and travelling by train. Like you say, I do feel a lot of anxiety around this.
I am glad my family understand but I feel a little sad I can't do the things I used to before. My mother also has health issues which mean that she cannot travel to see me also.
Hi there! Your dilemma sounds just like mine. I can be ok for days if left alone, no concerns about travelling or having to even leave the house to worry about. However, my IBS has got so much worse over the last year I'm getting stressed out thinking about having to go anywhere now. If I know I'm going away from home I take Loperamides, (I buy in lots of 30 online) a lot cheaper than Imodium). My IBS is anxiety related, the old "brain gut" connection. My GP wanted to put me on Amitriptyline for the problem, but I said no to this. I have been bad over Christmas as family were supposed to be coming to stay, that stresses me out. Although Loperamides stop the problem for a couple of days, I have found that when I do go to the loo after this, it can be normal once, then I find I'm back to the loo two or three times after this with diarrhoea. This stresses me out and I'm back to having to take another two Loperamides. I get stressed out about going out in the car and getting caught out. Life's not good.
Hi Icecreamforever, I'm sorry to hear of your struggle to try and go on journeys. I'm sorry my answer is maybe not helpful, but I want you to know that I have the same trouble, my anxiety just takes over, giving me chest and stomach pain. Hope you manage to visit your family.
TThank you for replying to me. To be honest with you, I don't go anywhere unless it's necessary and don't have a choice and if I do go anywhere it's a taxi there and back. The fear I get also stops me from going anywhere, thinking about if I have a flare up and I'm no where near a public toilet. I also get very embarrassed about my illness. So I'm afraid I'll be staying at home.
At the moment, I live in a very small village which means I need to take the bus to the next town if I need to do anything like grocery shopping, bank, general errands, etc.
I took the bus for the first time since my last flare up. The weather was awful today but thankfully, the bus arrived on time. The travel was a little better but I am finding it hard to remain calm and lower my anxiety about being out. I completely understand how you feel.
I am the same,and it has meant that I have missed out on travelling,with a few exceptions for all of my adult life.I went on a cruise to Norway last year,but only left the ship once,for 30 mins,so missed out.Since then I have started taking Imodium whenever I leave the house,unless it it a short trip to the local shopping center,which has plenty of toilets.This gives me a little peace of mind,and I make sure I eat plenty of fibre and fruit the following day to counteract the effects of Imodium.
It is a shame. I really wanted to travel more when I was younger but due to family and work pressures, I wasn't able to. Now that I am starting to feel worse, I feel maybe I have missed my chance. Sometimes, I take Imodium (or equivalent) when I have diarrhoea but I have never considered taking it as a preventative measure as a few people have mentioned. Thank you for your reply, I will try your advice!
It's a great pity you missed a lot of Norway on your tour, because of dratted IBS! Norway is a beautiful country.
so if you get too much effect from Imodium, just upping fibre the next day balances things out? That sounds fair. I have been a little bit wary of taking it because I didn't want to get constipated, but I think I could handle that, plus a lot of fibre rich foods are my favourites too! Most often strictly rationed!
Totally understand. I have had issues with travelling for years. I have cancelled several times - missing out on family events such as weddings. We currently live at least 5 hours from family, but actually moving next year to reduce the travelling (only 2-3 hours), which I can cope with a lot better. For most of 2023 I was coping with long journeys, so was hoping that finally I had it under control - but then had a massive flare in November. That pushed me to try Low Fodmap again - properly, with support, this time. I am going through the Reintroduction Phase now. My symptoms generally have reduced, but we are travelling next week, so I will have a proper test then. I am also doing hypnosis and also the Curable app (I have Fibromyalgia and CFS too). I still take Immodium, Buscopan, Mebeverine and ginger biscuits with me when we travel - so I know I can stop diarrhoea and reduce pain. If we are staying somewhere for more than a couple of nights, then we have an Airbnb with 2 bathrooms. I would definitely suggest the Curable app and also hypnosis (lots of good ones on YouTube). I want recovery for 2024, not just surviving.
Hi I am the same, had a bad tum a month or so before I was going get on a coach to York. Every time I was going to go out I would rush to the toilet. Then I was terrified at the thought of getting on the coach. I couldn't get off the toilet on the morning of our trip. It took 11 hours to travel to our hotel but I started to shake and panic on the coach. Then you are fearful the whole time being away as it was only 3 days. When the time came to get on the coach home ( we was with our friends) I cryed on the coach as I was so scared of wanting to go to the toilet, but I did manage to get home.
Yes, this sounds like the last journey I have. For me, I feel really disappointed in myself. I really want to go to new places and have fun, like a normal person, but I can't. I can totally understand how you are feeling.
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