I suppose this is commonplace, but I get so frustrated! I went for nearly a month without a flareup (other than the Friday I got my car stuck, but even then, it was urgency, but not pain).
However, last night, I had some German noodles, Vegan 'chicken', and cole slaw (which I have had several times in the past month, and had had no problems) but last night, as soon as I finished my supper (almost to the instant!), I suddenly had the tell-tale crampy pain and had to rush to the loo. I went 7 times within 2 hours and felt wonky all night!
Why the hell do I get the dreaded crampy diarrhoea seemingly out of nowhere, and other times, I can eat the exact same thing and have NO problems whatsoever?!?!? Agh it's so frustrating! It also stresses me out no end when I want to go out with friends cos I fear I cannot eat lest my PRD kick off. Gah.
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RoseTyler
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Omg I am the exact same it’s soo awful. I have found coleslaw to be a big no no but as you say uve been eating it and been ok. I have just had over 2 weeks of rampant diverticulitis got a antibiotic a week later have a urine infection so another antibiotic grrrr👺 what next 🤷♀️ Don’t know it’s getting harder to keep smiling 🥰
Oh Rose, I completely understand how you feel. I am in exactly the same position so I just want to send a huge hug to you along with a few management techniques. I take imodeum every day morning and night. This keeps things okay so long as my diet is what I'd call missionary position food. No spice, not too herby, meat and 2 veg meals. I think that PRD sufferer's also have IBS because we're always stressing when we're out as to what to eat and where are the loos! Deep breathing helps if you start to get grippy tum before you locate a loo. I did a FOD map diet at the beginning of 2018 and that showed an intolerance of wheat and wheat based products. So I avoid bread and pastry based food and look out for GF stuff now. I also think cream, mayo and eggs upset my tum. However if I'm going out I always take extra imodeum, I wear Tenna pants with an ordinary pair over the top, I have a 'just in case' bag with spare Tpants, wipes etc in it and a rolled up pair of trousers/leggings at the bottom of my handbag. Thank goodness big bags are fashionable! All these things give me confidence to live my life and not be controlled by my PRD. I don't know how old you are Rose but HRT really helps if you are menopausal as this can sometimes make things worse. Just remember we are all unique bodies so everyone might have different triggers. My husband cooked a delicious Icelandic cod dish on Saturday with cream sauce and as I was at home and hadn't flared up I gambled. From12:45am until 3am I was up and down to the loo. Completely washed out on Sunday! Sooo frustrating as it was a lovely meal. I hope this helps and that others will post helpful stuff too. Stay positive and go out. Xx
Thanks. I went down the Pub tonight and forgot to take a Loperamide. That was dumb! Gut kicked off half way through dinner and had to use the icky Pub loo :o. At least I got home before it got really bad, but I had to go 3 more times at home. Damn PRD. 😩 btw, I'm 42 but in premature menopause due to my cancer treatment. 🙄 I was 30 when I got cancer. PRD has gotten really bad in the last 3-4 years.
So sorry your evening was mared by this horrible side effect of treatment. At least there was a loo. I've been caught on a tour bus before now and that was mortifying. Hence never leaving home without a bag of just in case stuff. I have a packets of imodeum everywhere so I'm never without the possibility of taking some. I get it on prescription so hopefully do you. I hope you're feeling better now. Onwards and upwards. Xx
I'm lucky that most of the time my bowels are OK but then out of the blue I get a flare up. It's the unpredictable nature of flare ups that makes things so difficult. I mostly manage by restricting what I eat and drink when, on the odd occasion, I might dare to try and have an enjoyable time away from home. I get along by pacing myself and eating slowly.
That's usually how it's worked for me, but the flare-ups are more frequent in the last 2-3 years. The other night when my bowels kicked off at the Pub, I was trying to do just as you said; go slow and steady, but it wasn't enough. I needed the Loo 4 times after I got home (and had to leave in a hurry). It was embarrassing and annoying. 😳 I also feel odd when I take Loperamide too much; like I have a stopper in my bowels and they're just going to kick off even worse as soon as the drug wears off, so I spend too much time being paranoid that the Loperamide is going to suddenly stop working! It's a flipping nighmare this PRD really. 😮
Hi Rose, I avoid, or try to avoid, all dairy food that is not lactose free - I have not eaten coleslaw in years, even though I love it. Also, coleslaw is high in FODMAP with the onions causing all manner of problems. An idea would be to maybe make your own, without onions and with vegan mayo, or adapt a recipe to suit you? I also avoid wheat food and gluten foods. So I would have had white rice noodles (only a few), homemade non-dairy coleslaw and a protein that I find to be gut-friendly. Much good luck x
Re. cole slaw. I do make my own and it's Vegan. No onions in it either. I eat it all the time, and that's the frustration. My gut kicks off for no apparent reason :(.
Hi Rose, it's as you say, no rhyme or reason - I was taken out for my birthday and ate what I considered to be a huge and diverse meal, that my friends said was almost nothing, and I had no repercussions from it. But when I tried to replicate it a week or so later, I got into terrible trouble and now I won't go near any of it. What I do also at home is to cook everything I eat, even salad goes into the oven for 10 mins, that breaks down the food so that it's better digested. Also, I use a 3 day exclusion rule with everything 'new' that I re-introduce. I eat just a bite of the 'new' food on Day 1 then wait three extra days until I have it again. If I have had no trouble from it, on Day 4 I have two bites and so on, until it's been completely reintroduced to my diet. If I do have any sort of trouble from it, then it's left for several months before I try again. I have recently been able to have egg white omelette every week or so, just three egg whites, sea salt and pepper, sometimes a bit of turmeric too. That was impossible to have a year ago, but now it's a great pleasure with no repercussions.
Hi Rose, similar story here. I have learned though that there is a layering effect for me that is. I may think i can eat something one day and not the next, but in reality, If i really trace and track my food, when i ate, how close together i ate the foods, what i drank with it, etc. I have discovered that there is a layering effect. So what i mean is if i have a number of inflammatory or problematic foods in a 24 hr period, i will likely have an episode of bloating, possibly obstruction and pain, or cramping and bile acid diarrhea. Whereas if i only had one offending food or one offending drink in a 24 hr period, i may get away with it.
Also, if i am going out to a restaurant, will not eat during that day to reduce the accident rate. I will also order only animal or fish protein in 4-6 oz portion so as to reduce the gut reaction. This is useful for me. Hope it helps. Namaste
Well I'm Vegan so won't be doing that! lol, but it's just so bloody complicated! I wondered if it wasn't necessarily what I eat/drink straight away that kicks it off, but I can't be arsed to trace every bloody thing I eat all the time. It's exhausting enough just living with it! 😩 And really, is there anyone here who has found a way to actually control symptoms 100% and prevent flare-ups? Everyone has different advice and nobody I know has been able to control it completely. That's why I get depressed and frustrated cos it just seems like we're stuck living with this shit. 🙄
Oh Rose, I do empathise with you and the others. Its not just food its mood with me. Planning to go out can trigger diarrhoea and I have avoided onions , dairy and various other triggers for ages. If I take loperamide it works well but then I have very constipated stools for a few days and a struggle to evacuate them. Am glad to be at home and just eating with my husband. Avoid restaurants and trips out . I am 77 and we enjoy our home and garden.
Friends visit occasionally but I am on a drug to inhibit antibody production to stop my thyroid eye disease - a wonderful excuse for not going out. My consultant wants me to have a blood test for Coeliac. I love bread and bread products so hope it will be negative! Still alive, 10 yeas post Radiotherapy but its a big price to pay. We used to have a very active social life and enjoy trip out but times have changed...
I'm a bit late with this reply and I can sympathise with you all. I am also so frustrated with the diarrhea, cramps and constant nausea and never really a rhythm or reason for which food appears to be the cause, if anything specific at all because like most sufferers on here I can be ok one day then next day same food 5 hours of pain and diarrhea. I was diagnosed with bowel strictures caused by radiotherapy damage 6 months ago following a colonoscopy and discharged with no support or referral to a gastroenterologist. I've done my own research and forums like this have been great to realise I am not the only person suffering with this debilitating disease for which there seems so relief. I made Leek and Potato soup last night (1 cup coconut milk, no milk as lactose intolerant) then hours of extreme nausea. Shall is risk another bowl tonight, who knows I may be fine but then I am mostly in pain after eating just about anything so what's the point in restricting my diet anyway. I ensure I don't have skin an anything, not much if any fibre, no nuts or dairy besides butter and no raw veg. My daughter have a holiday booked for next year and I am so worried about how I will cope but I am trying not to let this condition rule my life and stop me doing things
I adore leek and potato soup too but have found that the onion family including leeks are a big no no for me in recent years. Like you a colonoscopy revealed a twisted and contorted sigmoid colon and I was told to have milled linseed on my cereal and take Fibogel twice a day! I am now able to cope with milled linseed alone. Mood as well as food will cause diarrhoea especially if I have to go out for some reason.
Thanks for your reply Jude I think the onion family is probably a no no for me too now. I usually find a few peeled grapes are good for me for constipation. I wonder if there is something that will help with nausea and cramps. Best wishes
Hi Rose it's very disconcerting when this happens isn't it! I find variety helps -not too much of the same-as I put it down to the gut microbiome. If you don't already- try oats (muesli, porridge), probiotic yogurt that help protect and reset our sensitive gut. Look up foods with soluble fibre which help.Maybe keep a food diary to link more sensitive foods that cause this. I cant eat strong spicy foods or red meat. But mince pies are ok😅
Its an ever changing self learning process isn't it.
If I'm going out I don't eat for at least 2hrs before-early riser for some!
Take care. Do go out with your spare pads and pads in your bag.
Have you asked PRDA for your Out and About Toolkit?
Yes it's terribly frustrating and annoying. To be fair, I've done everything you suggested and that is why I am so very frustrated :o. I do 'everything right' and still the bloody PRD kicks off :/. I just got my 'Out and About Kit' today actually. Thanks :).
If you'd like to talk to others there's a PRDA chat together on Wed eves-1st Wed each month.It helped me hugely especially mentally-reduced my anxiety! Email Admin@PRDA.org.uk for info. Take care x
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