Gastro visit

[Mariecapp]

I went to see a gastro Dr but I ended up seeing a nurse practioner. I explained my problem to him and it's like he didn't even hear me. He ordered a test called a anorectal manometry of which I have never heard of. I don't have a problem with the aftereffects of radiation to my anus, I have terrible problems digesting foods. I live on immodium also. I was not satisfied at all with my visit so I requested another evaluation appointment with a doctor this time. So I'm still left with my digestion issues. I even lost 10 lbs. Does anyone have any suggestions?? Thanks

[AT73]

I know how you feel. It took me a long time to find the right sort of help. It was only when I saw a specialist dietician from the Intestinal Failure Unit that I received the help I needed.

I had lost a lot of weight and had very bad digestive problems, not knowing what I should try and eat or what was upsetting me. There are so many foods to be avoided if you have this type of problem.

I have posted on here before about ‘resistant starches’ which I knew nothing about. My dietician explained that these are found in reheated or cold rice, pasta and potatoes. These should always be eaten freshly cooked if you have digestive problems. This helped me a lot and is worth looking into.

Certainly, once you have had any necessary scans, etc. a good dietician can be a big help.

[Mariecapp in reply to AT73]

Thank you for your reply. I will definitely be seeing a dietitian.

[Vailgirl]

i understand how frustrated you feel. It took me 8 years of horrid problems to learn ( on my own) that i cant eat more than 2 or 3 grams of fiber. A littke too much and i have bloating, gas, and bowel seepage all day. If its way too much 5 grams i have blockages. I believe the radiation affects us all differently - often tiny people have more issues. I’d try a low fiber diet and also keep a food journal to track what is causing problems. I’m also gluten free now and mostly dairy free although many cheeses are ok. Good luck. You are your beat resource for figuring iut what you can and cant eat

[Dasch123]

I have no suggestions, but I am on this journey with you 🫣 I had an appointment with a gastroenterologist and he referred me for a SeHCAt scan to test for Bile Acid Malabsorption and also another test to test for EPI....i got a letter yesterday to say they were both clear. I have another appointment in a couple of weeks so I am going to keep a food diary so I can take that with me. I am like you... living off of Imodium daily. The gastroenterologist said I could take up to 8 a day safely😳but I really don't want to be doing that for the rest of my life ! I currently take one with every meal 🤦🏻‍♀️that is holding off watery diarrhoea but I still get discomfort, bloating,gas, urgency and very mucousy bowel movements x

[Mariecapp in reply to Dasch123]

Thank you for your response. This is very frustrating to say the least. Let's see what the gastroenterologist that is an MD says, but my appointment isn't until August 30. That was the soonest that the Dr could see me. So unfortunately I have no answers until then. Hope that you find some help.

[Bluebell86]

hi there, sorry to hear you are living off Imodium. Like you I used too, I used to go toilet 12-15 times a day & get rectal bleeding & mucus without even going toilet! I had a colonoscopy and endoscopy which identified telangiectasia to the rectum which caused the bleeding. Basically the radiation damages the blood vessels and you end up with lots of tiny dilated capillaries which bleed with any friction. I’d ask if you have that. I haven’t had rectal bleeding for 8 years now. I avoid fibre & take antibiotics for small intestinal bacterial overgrowth every few months which was the cause of my constant diarrhoea. I now go 5 times a day and have more heathy bowel motions. If you have very watery loose bowels and going toilet frequently this needs to be addressed then hopeful the rectal bleeding will settle. Definitely eating little and often and minimising pips/nuts/seeds and anything leafy or hard to digest, celery,onion. My advice would be to keep requesting follow up appointments and tell them how much it is impacting on your quality of life.

[Mariecapp in reply to Bluebell86]

Thank you for replying. Good advice. I'm a little depressed today because I have also had a DVT and a PE. I have been on blood thinners for about 5 yrs. My clot in my leg has scar tissue but I was reading that even though I'm on blood thinners I can get another one. Pelvic radiation affects a lot of areas of our bodies.

[Bluebell86 in reply to Mariecapp]

was your DVT attributed to the PRD? I suppose being on blood thinners doesn’t help with the rectal bleeding either. With regards to your bowel issues have you been recommended to see a biofeedback physio? I was referred 12 months ago and haven’t heard anything. They said it’s about retraining the bowel. I was also involved in a pilot study for late effects of radio but wasn’t any help to me as they have tried all they can for me. Wondered if there was something similar where you are & depends how many things you have tried and how much time a gastroenterologist has spent managing your care. I’ve experienced a lot of urology issues as a result too.

[Mariecapp in reply to Bluebell86]

My Dvt and PE were a result of chemotherapy and radiation. The Dr said "oh no" it's not from that but chemotherapy alters your DNA and they won't admit that. I've seen a urogynocologist and he was no help. I have an appointment on 8/30 with the gastroenterologist who is an MD because the nurse practioner was no help. I live in the USA and sometimes I feel like they have no knowledge of PRD. So until my 8/30 appointment il keep on taking immodium. My son did get me 2 OTC medications, Digestzymes and prebiotic synergy. I will see if they help. Best to you. God bless

[Bluebell86 in reply to Mariecapp]

Urology wise there isn’t much they can do for the damage, I was told it’s about keeping your urine at the right PH, I’d not acidic or alcoholic drinks. You can have bladder flush outs but don’t see the point in the agony as it’s only a topical application that will have no long term effect. I was told to have cystoscopy every 2 years due to the increased risk in developing bladder cancer but feel I can’t live my life thinking about routine cancer monitoring. I’m glad you have support, your son sounds like a gem trying to help you. Wishing you all the best for your appointment at the end of next month. I reckon you are armed with enough knowledge to get the most from that appointment. Sending you all the best.

[Mariecapp in reply to Bluebell86]

Thanks again for your response. Wow! 10-12 times a day must have been unbearable for you. You seem to have a handle on what works for you now. I don't eat ant dairy, nuts, seeds ,green veggies or chocolate. I'm still learning though. Trial and error. Best to you

[Eee123]

This is my first posting on this blog. I am Ugandan, live in Uganda and I found it while looking for a solution to the same problem. I had the standard treatment for cancer of the uterus in 2019. Neither the oncologist who was in charge of my treatment nor the gastroenterologist knew how to help me. To my reports of bloody stools, over a dozen times a day in 2021 (the problem started from the beginning of radiation and worsened with the passing of time) both said, "At least you are alive!" So I went to Dr "Google" for help and after hours of reading, I found out about HIGH and LOWFODMAP first developed by researchers at Monash University, in Melbourne, Australia (monashfodmap.com/). I followed their low fodmap diet and it improved my symptoms significantly for some time (frequency, especially). However, if you want a fast read, I would like to refer you to this link with summarized information (my.clevelandclinic.org/heal....

Unfortunately, the symptoms returned and worsened again and I was blessed to contact a medical doctor concentrating on "Functional Medicine." I told him what had gone on since the beginning of treatment two years before. By the time I found him, I was so sure I was dying that when he said, "We can put this under control" I did not believe him (I was very ill at that point). However, I was desperate enough to follow his guidance. After asking me how I responded to taking certain foods, vegetables and fruits, he told me that sticking to a low fodmap diet was good but not enough and advised me about additional food groups (nightshades and high histamine) that I needed to avoid. He also placed me on several supplements. Within a week, my symptoms were gone. Of course that's brief, I cannot explain everything here. I have since helped 3 other patients who thought they were dying and they are okay! The positive response comes very fast when all foods that inflame the gut are removed from the menu. It leaves a limited list - but isn't it great to leave Imodium and all the symptoms that require it behind?

Suggestion: Since you are in the USA, contact any functional medicine specialist available there. I have just googled and picked this one (he is highly rated): Dr. Houston Anderson, DC, MS - Functional Medicine & Applied Kinesiology (drhoustonanderson.com/). Please search for any other highly rated functional medicine specialist living near you - and see her/him. I think 30th August is too far for the symptoms you have. Before I saw a functional medicine doctor I was afraid of dying of dehydration or of anemia due to loss of water or blood, respectively.

[Mariecapp in reply to Eee123]

Welcome to the group. You supplied me with a lot of information and I will look into seeing a functional medicine Dr, of which I have never heard of. Hope that you stay well

[Eee123 in reply to Mariecapp]

Thank you. Please share your body's response to the functional medicine specialist's guidance.

[Mariecapp in reply to Eee123]

Yes, I will do that