HI everyone , I have to say what a supportive and helpful forum this is . I have suffered IBS (D) all my adult life, and it affects every aspect. I suffer from faecal incontinence too if I can't get to a toilet quickly. On a good day I would go about 3 times in the morning , on a bad day could be up to 8 times. We have special anniversary coming up and have booked a short three day trip to Europe. I did it when I was having a good day !!! This morning was horrendous and now I am having second thoughts about the holiday. Hate how this is taking over my life. I am normally a very calm and sensible person, but when this happens I am reduced to tears and feeling worthless.
Basically can you recommend any tips for travelling ?? I think I will be ok once I get to the destination, as can control what I eat and suss out the toilets , its the travelling to and from the airport plus the actual flight that concerns me the most .
Sincere thanks .
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Evelyn65
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If I have somewhere to go or something to do, I don't eat breakfast because this always sets me off, especially anything fatty. I also take a prophylactic Loperamide if I am travelling. It is easy to over think things and get yourself in a panic. Stations, Airports, trains, planes and ferries all have toilets. If you go prepared with a spare set of undies, wipes, plastic bags etc. you will feel a bit more prepared. Have a good time.
Thank You. Will definitely not have anything to eat before the flight and will dose myself with Imodium. Don’t cate about constipation. Can sort that out at a later date !
My advice is just to be prepared, take a spare pair of clothes, wipes and loperamide. Try not to worry too much as that can make the whole situation worse.
Have you had proper investigations? Please look at these sites as you may recognise your symptoms. I keep posting about Bile Acid Diarrhoea (BAD) as it is thought one third of patients diagnosed with IBS actually have BAD. I totally get your anxiety regarding travelling. This has ruined 40 years of my life, but since my diagnosis of BAD last July and taking medication every day, I have not had one episode.
Thank you so much. I will mention this to my GP. I have heard of it but never read much into it. Will do so now. Ps yes have seen a specialist colorectal surgeon and had colonoscopy last month. All ok apparently apart from diverticulitis and some microscopic colitis!
Hi, I noticed from your post from 8 months ago, that you have microscopic colitis. I wondered what the treatment was for that and if it has worked for you?
Oh, seems odd and as you say not really helpful. I was just wondering, as I was tested for Bile Acid Malabsoption just over a year ago and it came back negative, but they said they could do a colonscopy and check for microscopic colitis but they didn't seem to think that they would find anything, so I didn't bother.
The consultant prescribed a course of steroids called Budesonide for 8 weeks. This blocks inflammation and allows the gut to heal. It had to be specially ordered because it is not standard issue. I don't think my GP would have prescribed this, it may be one of those consultant only drugs. Anyway, I saw good improvement quite quickly and this has largely been maintained since last August. It is normal for me to 'go' 3 or sometimes 4 times a day now, rather than 9 or 10 previously. Now and again I get a bit of a flare up, but I can usually pin it down to something I have eaten. The first GP I saw about my gut issues dismissed my concerns in a very patronising fashion, but a couple of years later I was fortunate to see a locum who admitted he knew nothing about gut issues, (!?) I had been suffering for about 5 years by this point. I was referred to a gastroenterologist who was great. I worried about the procedure, but it was fine (I had fentanyl as a sedative ) and gave me a reason for my gut issues and definitely not all in my head. NHS waiting times are quite long, but I was offered the option of a private hospital which was much quicker.
Thank you for your reply, it was interesting. Have you not been tested for BAD (BAM) bearing in mind, as you say above, that your brother has it. I was tested for it. I think my doctor referred me because I said my cousin had been diagnosed with it (and I think she also felt a bit sorry for me because of how long I have been struggling with it). The doctor at the hospital said that it didn't run in families and so there was no reason why I should have it because my cousin has but agreed to test me for it anyway. It came back negative.
My brother also has Chrohn's as well as BAM. Having looked into it, I think there may be a genetic component and will raise it with the GP when I next visit. Haven't raised it as a possible issue yet. We definitely seem to have auto immune conditions as a family.
Yes I would definitely speak to your doctor about it, he/she may just let you try the bile sequestrant to see how you get on, some doctors do that, I believe. If it works, it should prove the point. You have nothing to loose and if they do want you to be tested for it, it is pretty straightforward, as I am sure you are aware.
Yes I did. After not being able to get any sequestrant as it was out of stock, he then found himself with two lots, so he sent me some sachets. On the first day I tried one whole sachet and everything stopped for about three days. Now I am taking half a sachet every couple of days and bms could pass for normal. No cramping, no urgency. A bit of gurgling occasionally. When I take Loperamide, I often get a sort of rebound cramping a couple of days later, with the sequestrant, that doesn't happen. I am due to see the GP again in a couple of weeks. That could be an interesting conversation...
Last time we had a bit of a falling out because I asked to be prescribed some sequestrant to try. She happily prescribed some Creon, which is pancreatic enzymes for people with pancreatic insufficiency and insisted it was the same thing! As far as I know, I do not suffer from pancreatic insufficiency and bile is made in the liver and shipped to the gall bladder. It does not originate from the kidneys, where the pancreas makes pancreatic enzymes. I have not been tested for pancreatic insufficiency, so should not have been prescribed this without testing. The GP in question is about to retire. I might just see one of the others and try to avoid a conflict, as suggested by the practice nurse. I also checked Creon with a pharmacist. She was baffled too.
I am due an appointment at the end of July, but have 'aquired' some Questran and it is working. To avoid confrontation, I am planning to see a different GP, the one concerned is due to retire this month anyway.
Hi Evelyn 65 I so know what you are going through, please don't let the anxiety win and cancel your trip, I did this for a long time I became so low that Ibs wasn't part of my life, it was my life, because after a few accidents every time I knew I was in a situation where I had to go out I would get attacks of the dreaded D in the end even if someone visited me I would immediately be running for the loo in my own home, is'nt that a stupid state to get in, I knew I had to take back control, now I have my coping mechanisms I don't eat before I have to travel I have put together a rescue pack that consists of a spare pair of pants a scented babies nappy bag or two some wet wipes and a small inexpensive bottle of scent, I carry imodium instant in my bag, and wear soft pretty non noise making pull up disposable pants, I know it sounds like a lot of trouble but it really isn't, and it gives peace of mind, as the advert says no room for nagging doubt, so no anxiety trigger, in the end because you have it covered the problem becomes less, I hope this may help you, and I hope you go on your trip and enjoy your special anniversary. Love Calli
Thank you Calli you are describing my life ! Will take on board all the suggestions. I know that anxiety plays a big part and it’s a definite catch 22 situation .
If you are worried about having one of the faecal episodes perhaps wearing a pair of, what my mum used to call her incontinence pants, frilly knickers. There are many types but she loved the ones I got from superdrug. Their own brand, and I have to admit they worked a treat for her. Or, if you are having a good day or two, take some with you, just in case. They are small enough to fit into a decent handbag, and no-one knows you have them on. Plus take a few disposal bags. You can get them in lots of colours and they are easily disposed of. Just drop them into the first bin you come across. I don't know how much time there is before the event, but I would start taking a cup of hot water every morning. Just water from the kettle, no tea or coffee, just plain water. Also carry some Buscopan for cramps. They are great at handling the pain that goes with bowel troubles. I wish you all the luck, and enjoy your wee break. xx
Thank you Liz, I am grateful for all your help and the tips !! Def disposable pants are on my shopping list. The last " accident " I had, I had to stop off at a charity shop and buy a new pair of trousers as well. Luckily I had spare pants in my bag and wipes ! I am sure the shop thought I was a weird person, as I just grabbed a pair of jeans in my size and declined trying them on !!!! ( for obvious reasons )
Hi Evelyn - have you been tested for celiac disease? Are you in the UK? I had a test for histamine food intolerances, through a chain of chemists Alphega, linked to NHS. Test takes blood prick and feeds blood through a smart device. To my surprise I found I had
multi grain egg and dairy and banana intolerances. I also have difficulties with too much red meat and processed food such as bacon. smoked foods, and red meat such as steak.
Since changing my diet to omit all potential food intolerances, have been much better.
Like you had all those symptoms. Celiac Disease and Multiple Food Intolerances is an article written by Jennifer Madden md.
It mentions multi grain, and others including gluten. The NHS may only test for gluten - but most grains contain gluten including wheat, rye and barley. I was not intolerant to gluten, but wheat, rye barley maize, and rice. I also had intolerances to-egg and dairy.
I drink lactase free milk, as it cuts out milk sugar, which seems to part of an allergy to cows milk. I find if I get pain, I take a co-dodomol or 2, and this tends to take away pain and blocks you up. Other medication I have found useful is merbeverine, which
helps the symptoms of IBS, helping the internal muscle of the colon without sleepy side effects. I also have found fibre gel is helpful in flavoured sachets as a drink, on prescription. This absorbs the excess water in the colon, so it stops the runs.
May be you can try this medication as I had no improvement with Buscopan.
Hope you go back to the doctor for a change prescription before you go on holiday.
Guess it will help your confidence if you can try it before you go away. I know stress is a factor in IBS and the worry of a change of surroundings can upset people.
Thank you hawi60, it's something I am going to do. I know I have a definite intolerance to ice cream, cream and sauces so think I may be lactose intolerant . Going to give the milk a try too. I am in the UK too and there are quite a few places do the testing . I do take buscopan cramps and imodium as necessary. MY Gp mentioned Fibrogel and think I will get some of that too. Haven't heard of merbeverine so worth mentioning that to her as well. Many thanks for your quick reply and all the helpful tips .
Hope you enjoy your holiday - found the medication helped except when I ate cream cakes
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