Hi Everyone……I just joined and would like to introduce myself. My name is Kate, 67 yr old female. In 2005 I was diagnosed with Stage III Uterine Cancer. I had high doses of radiation and chemo. Initially, all my problems were urine incontinence, UTI’s, urine retention, and multiple trips to ER. My bladder was damaged so badly it was removed in 2021. I now have an Indiana pouch which I Catherize. I thought the long journey of suffering was over. While I no longer have urinary tract problems, I now have bowl problems since this past Feb. I have muscle and nerve damage and am unable to fully evacuate. I have fecal incontinence which is horrifying to me. I’m in the process of seeing many professionals and in my search I stumbled over this site. Would just enjoy some support from you as I feel all alone. It scares me to think about my future and if there’s hope to manage this. Any input about your experiences would help me. Thanks, Kate
new member: Hi Everyone……I just joined... - Pelvic Radiation ...
new member
Hi
Sorry you’ve gone and going through with this condition that Radiation Treatment
Has given us
You are not alone 🤗
Thank you so much for your support. I’m so happy to find a group of people who understand how devastating this can be. Do you have any tips you can suggest? Thank you
Hi again
For my digestive system, I avoid Green vegetables and High Fibre foods
Basically any that’s good for most people,
It’s no good for me
Hopefully your gastroenterologist will give you good advice
We have a zoom meeting once a month
Next one is in July
Lovely Sarah or Helen will send you info
Also there is a News Letter
You will find on PRD site
I’m sending you Wendy’s hugs 🤗🤗🤗🤗
Thank you so much. Yes, I think it might be a learning curve for me when it comes to food. I’m not really sure what effects what right now. I’ll definitely attend the next zoom as long as I can.
Hello and welcome to the group,
Sorry to hear of your recent difficulties particularly after reading that you’ve already gone through so much with the urological side on things already.
Have you be able to get any support from your local hospital with a gastroenterologist? I’m hoping you have been referred and are awaiting on seeing someone but point them in the direction of the best practice pathway as there are many different tests to look at the reasons behind your incontinence. Personally I had daily incontinence years ago and found a cure by accident myself as I had tonsillitis and was given antibiotics which cured my diarrhoea within two days! Turned out I had small intestinal bacterial overgrowth. I now suffer with the opposite problem but I guess what I am trying to say is there are sometimes simple solutions so try hard to to think worst case but that is much easier said than done when you have already had such major surgery for your bladder. Water irrigation is great for incontinence as you can flush out the lower bowel manually and means at least you can have a couple of hours knowing you’re safe. I really hope you are under a gastro team who can explore your symptoms and provide you with some treatments to try. There are many of us here that are struggling with the symptoms you describe so don’t be mortified as we know exactly how it feels and what a mental drain as well as physical drain this disease can be. Hear to talk and listen.
Thank you so much for welcoming me and making me feel comfortable. I find this more devastating than my urine continence. I live in a suburb outside of NYC and have gone to a GI specialist at Columbia. She recommended Metamucil once per day to evacuate better since my muscles are very weak. That just gave me massive diarrhea where I can’t even leave my house. It’s just not doable. I’m thinking I need a Dr that has more experience with radiation disease?? Do you think I should look for a GI with oncology experience? We do have Sloan Kettering in the city. Do Dr’s know how to treat long term radiation effects? Or is this a field that hasn’t been explored enough? As far as the irrigation goes where would I get that or how would I do it? I hope I’m not inundating you with too many questions. I’m just new with the GI problems and really struggling.
Bowel incontinence is so hard to manage and hide at particularly distressing when it happens in your sleep! I was on maternity leave when mine was at its worst so I was changing my baby’s nappy and felt like I should be wearing my own! If you don’t laugh about it you often cry instead! I’m in the uk so unsure of how it works in America but a gastroenterologist would be a good start, the meds that Winniebagelaggy mentions are for bile acid malabsorption I believe, I was prescribed these to try but that wasn’t the cause of my diarrhoea hence they didn’t work but you do have to give new meds at least a couple of weeks before you know if they will help which of course is very difficult. I get awful daily pain but found relief with amitriptyline now. I’m ten years post treatment and only just found out about water irrigation through a a bowel biofeedback physiotherapist! My prescription of pumps is home delivered to me via this contact at the hospital. You may even be able to buy this online but you could enquire at the hospital. You literally flush the rectum and last section of large bowel with water to prevent accidents or overflow diarrhoea. It’s certainly worth a try if it’s something you can get your hands on. I take a prokinetic medication that increases peristalsis called prucalopride but I have slow gut mobility due to scarring and narrowing of the bowel from the radio so it would be inappropriate to make recommendations on medication as everyone is very unique. I do have diarrhoea but also experience bowel obstructions. So I either can’t go or go when I don’t mean too! My advice would be to get a gastroenterologist consultation and take a methodical approach to the tests and dietary advice and persevere with meds. I did one month lactose free, 1 month gluten free and 1 month low fibre and low fibre made a slight improvement. That’s was all before any medication or supplements or colonoscopy tests. The medication you have been prescribed is that a high fibre supplement? I ask because the majority of people with PRD are usually advised a low residue/fibre diet. You need a understanding gastro ideally someone who has at least heard of PRD. Wishing you luck in your journey to more contented bowel habits.
Thank you for all that knowledge. I’m so sorry you suffer so much as such a young woman. I hope you get some relief. It sounds like you’re really working at it. What are the name of the pumps? Maybe I could buy them off Amazon. I’ll have to start to try special diets like you did to see if I can get results. The medication is actually a statin that reduces bile acid. My problem with that is that I’m already on a statin. Also, how does the Dr know I have this if there’s no test that has been done. I don’t want to be resistant but I’m older and already on several meds. Thank you for taking the time to respond to me. I hope you’re doing well
The brand name is Qufora
IrriSedo MiniGo but reckon there must be loads of brands, guess maybe search rectal water irrigation and see what you find. Yes I’ve found I have had many tests just given meds to see if they help, I think if bile acid malabsorption was your issue the meds would be effective but as you say the more meds you are on the more they clash with each other sometimes. There is a scan to test for it but I haven’t been offered it, whether it’s not available where I live I don’t know but the meds didn’t work for me so guessing that was never the cause of my diarrhoea. I’ll attach a pic of the name of it if I can, Certainly make enquiries though. I’ve had 3 months of no obstructions which is the longest I’ve gone but they think it’s because I took bowel prep for the colonoscopy so having a completely empty bowel has given my intestines chance to rest and re-set?!?! Either way I am able to eat solid foods at present which is better than the liquid diets. I’m awaiting a referral to a specialist in London as they are talking about surgery to potentially give me a colostomy bag but it is a very big decision with lots of risks. In the decade I’ve had this I’ve learnt to not be shy in asking for specific things and be honest with drs about how much the condition impacts your daily life, they often make you feel like you shouldn’t moan because your cured of cancer but quality of life after tmt matters too. My cancer got detected whilst I was in labour and then I found out they missed my cancer on my cervical smear test 3 years before so I do find myself struggling to accept the consequences of the treatment when it was all avoidable in the first place. I hope you can find some answers for your tummy and restbite from the diarrhoea.
My heart goes out to you. It is a big decision to have a colostomy. When I lost my bladder due to radiation it was something I had to really think about before it was done. I have an Indiana pouch now and I Catherize through the right side of my abdomen. I had part of my large intestines removed to make the pouch. In the end, it’s actually the best decision. I was suffering too much with my bladder. Thank you so much for the information about the test to determine the level of bile acids. I really appreciate that. Yes, the Dr’s can be quite harsh about treating people with compassion. Quality of life is important! I admire your determination. I was in the hospital in February for a partial obstruction. Do you have them often? Do you just stay on a liquid diet until it passes? You have been very helpful. Thank you for responding.
hiya
I’m sorry you are being hit with heavy after effects , After receiving heavy course of chemo , radio therapy , and brachytherapy …
My side effects came rolling in , went into menopause full throttle, hit me for six. Develope urination problems having accidents , infections left right and centre , accidents have now stopped and controlling infections with antibiotics at first then found a cranberry supplement and have never looked back. My bowels well again incontinence , it was so hard couldn’t travel anywhere without having accidents , lost a lot of weight . Went to see my gynae and she mentioned pelvic radiation disease , and put me in touch with a bowel specialist , had the camera and found nothing of concern other than scaring . I was put on some tablets of which I take 4 a day and wow what a difference to my life .. no longer have to take spare underwear or clothes with me when I go out
Thank you for your response and support. What type of Dr would be a bowel specialist. Would that just be the GI Dr or something more specialized? As far as the medication you’re taking would you share the name of it with me? I’m glad you’re getting relief from all this. It sounds like you’ve made progress. It gives me hope. I’ve been so devastated over the bowel incontinence. I hope you continue to feel well
Just through GI dr , the tablets they gave me are called colesevelam hydrochloride honestly it was a game changer for me . It is very devastating when after going through all the treatment you have to continue to fight through more battles … here if you need to chat again I have Facebook if it’s easier to chat that way
Thank you. Could you give me your FB name so we can connect? Or is it this one?
I was advised to adopt the brace position to help get better bowel emptying which should in turn reduce faecal incontinence. Google on 'brace position for bowel movement' to see how to do this.
Something else that helps me is abdominal massage to help improve bowel movement especially with constipation. Sometimes diarrhoea occurs as a result of constipation - so called overflow diarrhoea. Googling on 'abdominal massage for constipation' should yield relevant information.
I believe there may be some contraindications for the above techniques. If in doubt seek medical advice.
Thank you for explaining those techniques. I’m going to look it up. I feel so humbled from this experience. It’s just so helpful to know there are others out there. I hope you’re doing as well as can be
Welcome to the group. You sure have a lot of issues after your cancer treatment. The group will give you a lot of great information that will maybe help you. I feel like my issues are nothing compared to everyone else. I can't digest food and I follow a FODMAP diet that helps me. I lost 13 lbs and I take immodium everyday, as per a suggestion from my gastroenterologist. All my labs came back ok. I'm having a endoscopy in August. My gastroenterologist thinks that I may have radiation colitis but I also have irritable bowel syndrome. I have become anemic, I have low b12, low iron, low wbc, and low rbc. I get b12 injections but I don't feel any different. My aftereffects also include a m protein spike that is monitored for progression that can become leukemia. I developed DVT and PE as aftereffects, so I will have to take blood thinners for ever. Sometimes this is all so frustrating and I feel for you. I'm praying that you get more help so you can feel better. God bless.
Thanks for your reply and support. Sorry you are suffering so much. It might sound stupid but….how do you know if you can’t digest food? Indigestion? Vomiting? I was low in B12 too. I started taking supplements and then it came up high. My RBC has been low on and off since my treatment. Could you tell me what a foodmap diet is? When you eat a certain way does it help with incontenance? I hope you feel better soon. I can relate to you in how hard of a struggle this is. Bless you
I know because my gut hurts after I eat and I then get cramps and go to the toilet ever 10 minutes. If I don't eat what I know that I can't I get terrible bloating and gas. My meals are very small. My supper consists of rice cakes and maybe fruit because by trail and error that's easy for my to digest. If I don't take immodium every day my digestive problems are even worse. Again, I'm praying that you get the help that you need. I am also noticing that my flow of urine is getting worse. We will see where that goes.
that’s a lot on you. I’m noticing sugar isn’t good at all. My stomach gets so upset and I go into diarrhea the bloating and gas is horrible too. I’m going for a test 7/1 which will tell the extent of the damage. Then she’s going to send me to PT. Thanks for your support
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