hi. I’m wondering if anyone else has this type of diarrhoea.
I might start off with a semi formed BM because I’ve taken something to slow transit time and add some bulk. Then before I can even leave the bathroom I’ll get the urge to go again but it’s runnier. Then same thing again but runnier. Maybe I’ll leave the room but I’m back in a minute and eventually it’s just like water. Once I’m emptied out I’m good for a while. I’m curious what’s going on and what condition this points to. ie. Colitis or maybe bile acid malabsorption.
I’ve joined a lot of groups and never read a full description other than saying they go x number of times a day. Is it all at once. I’ve joined groups for all sorts of bowel diseases but my initial cause is pelvic radiation.
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Hello TheBencher, you have just described my situation. I can have a perfectly normal poo, get up wash my hands and then get the sensation I need to go again and this time it's very loose. Okay good I think, I'm done but oh no, my bowels have a mind of there own and minutes later I'm having a very watery evacuation. And this can then happen several times resulting is being very sore afterwards. And no idea if it's what I've eaten or drank. I've done a FOD map diet which highlighted some foods that I cant tolerate but I don't think being gluten free is my answer. I take one loperamide every day and more if I eat out and I'm now trying to follow a low fibre diet. It had actually been very good for a few weeks but in the last week I've had diarrhea almost every other day. I think there is an element of irritable bowel as there's no doubt I get stressed about things and that has its affects. It's all very frustrating but at the end of the day we have damaged bowels and certain things will upset them. If only we knew what those things were. As I can eat something one day and not have a reaction but then eat the same thing another time and all hell breaks loose! I'm taking a Irritable bowel med 2x a day along with multivitamins and B12 . I was taking iron every other day but leaving that at the moment as my levels are OK. I wear tena pants with period pants over the top when I'm out and about as have had a few accidents, to say the least. I don't know what the future holds for those of us with radiation damage to our bowels and bladders. It needs much more light on the subject. Especially with more pelvic cancers on the rise in younger people. I hope you find help and guidance from your health professionals and that others share their experiences and how they manage. It all helps. In the UK we have late effects clinics which are helping to highlight our issues and find us meds and people that can help. I hope you find answers and wish you well as you work out what works for you. Xx
Thanks for the reply. So much the same, even the Tena pants! One of my theories is that once I go once, there is an irritation or switch turned on that is rushing the next sets of digested food through the system. I’ve tried several things but I understand some of them take a while to work so I don’t have a lot of conclusions about what’s helping. However I have noticed that I’m doing as well since I cut psyllium fiber and banana flakes out. They may have been causing extra gas and gurgling. And I’ve also cut back on Imodium, just taking as precaution when I go out. The one thing that I’ve tried and seems positive is Smecta. Plus I’m eating a lot of leftover potatoes for the resistant starch. Still have the general same pattern but just not as frequent. Good wishes to you as well!
There is a test where you swallow a radioactive tablet and a week later its checked for residue. Si was told should be about 80% still remaining. Mine was 0.2% ~ had over 6 years being told symptoms were just because I was worrying/eating too much etc. symptoms gone now on medication. Changed my life.
It is just scanned an hour after taking. Then return a week later for another scan. Very low radioactivity just to be picked up by scanner. Tablet digested but there is a spot in lower bowel that should reabsorb bile acide. I am on 2 medications one is Creon for digestive enzymes other is colesevelam en.m.wikipedia.org/wiki/Col... for sequestering the acid.
I have the sane symptoms. Imodium has saved me in that at least I can get out and about. Currently going through an episode so have changed 3 times and showered. Waiting on Imodium to work and Sudocrem on sore anus. We do have damaged bowels and just have to find best solution for ourselves. I haven’t tried Semta so will acquire some and see how it goes. Unfortunately the Late Effects clinic in Glasgow can’t take any new patients at the moment as awaiting more funding but you should try and find one in your area. Should I be taking IBS meds?
My initial radiation was about a year ago. Then things got back to normal. My scans were good but the plan was to have 6 rounds of chemo cocktail plus keytruda to keep it at bay and then continue the keytruda for 2 years. I had a 3 month break before that treatment started. It was only a few months ago that the diarrhea returned. The chemo doctor thinks it’s a post radiation effect. I will be taking to radiation doctor in a few weeks so am hoping she’ll have more ideas on what to target. I wanted to get ideas and maybe things I can push for and things I can try. As far as I know we don’t have that type of clinic in Canada.
I have the same problems and had my radiotherapy 15 years ago. :/ I actually divide my time between Canada and the UK (live in Canada in Summers and UK in Winters) and had my cancer treatment in Canada. Sadly, Canada does not have PRD/Late effects of Radiotherapy clinics but you can ask your GP to refer you to a Gastroenterologist; however, be prepared to be disappointed if the Gastro. doesn't know anything about PRD. :/ I just had an appointment today (still in Canada til 8 Dec.!) and it felt like a waste of time. However, I did get a prescription for Colestyramine in case I have the Bile Acid Malsorption. Unfortunately, there is a shortage of that drug and it may be some time before I get to try it! So frustrating :/. Good luck!
I’m in Regina, SK. I hope I get a specialist who’s open minded to suggestions if it comes to that. Is that prescription expensive? One I heard about sounded like it was, maybe in the U.S. but that might be the enzymes I was reading about. Have a good trip back!
Had my twenty dose radio after the return of cancer to the bed of my surgical removal site of the prostate nine years ago, followed up with hormone implants.
Six month telephone follow up persuaded my oncologist to put me on Imodium, twelve month follow up which was yesterday finally allowed him to refer me to a gastroenterologist, frustrated really that a urological oncologist can’t refer you to gastro straight away.
All the symptoms are Irritable Bowel Syndrome so I believe some specialist advice re medication and diet will be helpful, also Tena usage which happens !! ….lol
LE clinics don’t happen in the North East so the only help offered so far has been acupuncture for my Hormone induced menopause flushes and insomnia.
Do M&S bra fitters accept seventy seven year old grumpy ginger blokes ?
So this is completely me! I might have several goes before I actually finish my BM for the day. It starts almost as soon as I wake up, The urgency to use the bathroom. If the BM is particularly large that will leave me quite sore and then I think I’m finished get myself all cleaned up and no sooner am I downstairs and I need to go again the BM’s get looser each time I have to go back with sometimes it just being air!! At this point I know some foods will trigger my diarrhoea but it can just happen. Like most people I take Imodium especially if I intend on leaving the house. I also have an emergency kit in my handbag for days out which people on here suggested I do and it has come in really handy.
I can go a week or so without and diarrhoea then can have a bad run for a few days. I’ve totally given up trying to get ahead of it as it seems my bowels now run the show! It can be terribly upsetting and it does get me down I struggle with severe anxiety which ironically adds to my diarrhoea issues it’s a vicious circle!!
For me now I try to cling to the good days and if I’m having a bad day then It’s just a bad day.
I hope the IBS tablets will give you some relief I’m on a waiting list for a pelvic assessment. This is a great site everyone is so very helpful and have given me great advice I hope you find the same.
I wish you well here a virtual Hug 🫂 in diarrhoea solidarity 😂😂😂
Yes that sounds like me, I also had pelvic radiation thirteen years ago, sometimes I feel pressure and also uncontrollable urge to ‘go’, can be very embarrassing. I recently had lots of tests but the results are negative , just have to try to live with it. Many combinations of drugs and diets and fillers some days worse than others, also mental stress can make things worse.
It’s disappointing that the results aren’t at least showing what to target. I’m having some luck with a limited diet and Smecta which is a medical clay powder. Not resolved of course but more manageable and not as burning. I’m still experimenting. The other day after a good MRI I went crazy buying baking and cheesecake. Yikes. 😬
Hi TheBencher. This is also me. I had radiotherapy for prostate cancer in Feb 23 and now have the issues with my bowels. I have had 4 FIT tests and a National Bowel screening FIT test and all negative which prompted me to get seen by the colorectal dept. I am waiting for an appointment. I cannot go to work and have to plan my days so I am near to a toilet etc. I can only assume that I have radiation proctitis or PRD. I am currently going through finishing on ill health at work. Imodium helps for a day or so but it returns. I have also wet farts, leakage and terrible wind particularly at night. I have lost no weight, or feel sick, or am sick, no stomach cramps or blood. My poo is a good colour but loose! I am just hoping nothing sinister is happening. Any advise would be helpful. What questions do I need to ask the colorectal team?
I’m early in this process so haven’t seen a specialist yet. After searching for various conditions I thought I’d ask in a group specifically for pelvic radiation and am finding this is not unusual. I don’t know where in the chain things are broken and it could be more than one!
Pain or nausea, etc. seem to be common in some of the other conditions like SIBO and types of colitis, etc. and I really don’t have that type of pain
My poop tends to be yellow though so I’m thinking something with bile plus some other damage that causes excess mucus although that’s not extreme
I’ve noticed things get worse when I eat rich foods.
Currently I’m taking Smecta which is a fine clay powder I saw it in another group but it doesn’t seem that common The dietician at the hospital was not familiar with it I’m also eating reheated potatoes as a staple food because it has resistant starch that helps the good bacteria in the gut This has been firming things up and reducing frequency It doesn’t change urgency much so I take the Imodium if I’m going out I’m also trying to figure out which foods contribute to gas because that’s not helping Definitely a lot of experimenting!
Good luck to you Hope you get an appointment soon!
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