Fecal incontinence

[JuneyandGracie]

hi Everyone…..I had pelvic radiation, brachytherapy and chemo in 2005 for uterine cancer. I lost my bladder due to the radiation. I have an Indiana Pouch that I now Catherize. My current problem is now my GI tract. I’ve had diarrhea since my treatment but the damage is progressively gotten worse since I’ve aged. I’m now 67 and suffering from chronic diarrhea, incontinence, and nausea. It’s starting to put a damper on my quality of life. Does anyone have suggestions about this? I fear I might need a colostomy as it’s getting very bad the older I get. Are there other alternatives? Has anyone here gotten a colostomy from radiation damage? Any input from all of you would be greatly appreciated. I’m beginning to feel desperate. Thanks……Kate L

[SGH-Aspro]

I had cervical cancer in 1979 discovered just after I gave birth to my son. I had the usual treatment and all was fine for a good number of years. Unfortunately they gave me too much radiation and I was several years having organs removed due to injuries.

I did have a segmented resection resulting in a colostomy.

I know our situation is different but my colostomy was reversed after 6 months. Hope this gives you food for thought. X

[JuneyandGracie in reply to SGH-Aspro]

Thank you for sharing. I don’t know which route I have to take but I guess I’ll see how long I can function like this. I hope you’re feeling well

[DarceyD]

hi I was in a similar situation last year. Cervical cancer in 2001 radiology/chemo/brachyotherapy. In last 10 years the diarreaha has slowely increased to where going out was a hige challenge. After visiting the late effects clinic I was found to have Bile Acid malabsorption and issue with pancreatic digestive enzymes. Now on a simple treatment of on tablets each time I eat and it has transformed everything. Feel like I have my life back. Try and find a late effects clinic or ask your GP to send you for test.

[JuneyandGracie in reply to DarceyD]

Thank you….ill have to look into that. Glad you got your life back. Are you in the UK? It seems you are advanced in this area compared to the USA. Not sure if we have late effects clinic. I’m in New York

[DarceyD in reply to JuneyandGracie]

Yes sorry hadn’t realised yoi were in USA. If you ask about the SeHCAT scan for Bile Acid Malabsorption check. Exocrine Pancreatic enzyme deficiency is the other one to ask a professional about. Diet changes helped me for awhile too (FODMAP App from Monash university in Australia on your phone helps pinpoint food that worsens symptoms) and keeping a food and stool diary helps with diagnosis. Good luck and you aren’t alone. I know how isolating it can be.

[Gtuva in reply to DarceyD]

Unfortunately the SeHCAT scan is not approved in the US.

[JuneyandGracie in reply to DarceyD]

Thank you so much😘 I appreciate the help.

[Vailgirl]

What has finally helped me after about 15 years of dealing with this is eating Congee daily. I ate it 3 meals a day for 4 months, and now once a day seems to do the trick and also watch what else I eat. Clean diet with only a half serving of low-fiber veggies. I make the congee with bone broth and use olive oil. A year or two ago, I started getting occasionally impacted (opposite problem), which is scary. So, I've added in magnesium in the evening and that seems to help. I eat high-quality protein with each meal.

[JuneyandGracie in reply to Vailgirl]

Congee is what? I’m sorry to sound ignorant. I’ve heard of it

[Vailgirl in reply to JuneyandGracie]

It's an Asian rice porridge.. you can find a recipe online, and it's super simple to make. I eat it daily now, and it has helped tremendously. With the PRD, our intestines esp the sigmoid colon, are super dried out and narrowed (possibly) and irritated. Think of dry, hard desert earth! The rice porridge will sit there (unlike water) and allow the moisture to seep into the intestinal lining- thus allowing other foods to be more easily absorbed rather than passing right through you. (I use bone broth in my congee to get enough protein and add in some low-fiber veggies). You may also need to avoid coffee but sipping warm water (nothing too cold on that dry hard earth) will help also. No ice cubes ice cream etc. etc.

Hope that helps

[Sarah_PRDA Partner]

Hi   JuneyandGracie ,

I can understand your worry about having a colostomy when radiotherapy has already caused you to need an Indiana pouch. On a personal note I have both a Urostomy and Colostomy due to radiotherapy and have lived with these for over a decade.

I wanted to reassure you that there are several conditions that can be common for people with PRD, all of which can cause or contribute to diarrhoea. But more importantly, that they can be managed without the need for surgery:

▶️Bile acid malabsorption (BAM)

▶️Exocrine pancreatic insufficiency (API)

▶️Carbohydrate malabsorption - for example lactose

▶️Pelvic Floor Dysfunction

▶️Small intestinal bacterial overgrowth (SIBO)

I understand from your profile that you are in the USA so health advice and test availability is different to here in the UK. We currently refer to a comprehensive guide to managing GI symptoms of PRD (UK based advice...and spellings😉) that you may find informative:

prda.org.uk/wp-content/uplo...

You may find it helpful to discus your symptoms with a gastroenterologist.

Hope this helps

Sarah

(PRDA admin team)

[JuneyandGracie in reply to Sarah_PRDA]

Thank you for all that info. UK is far ahead of USA when it comes to PRD.

[Dunandjam]

Hi, I too had radiotherapy as well as chemo to treat my squamous cell anal cancer following surgery. 2 years since treatment finished and I have the same sort of problems. My surgeon said a stoma would not cure the problem! The consultant oncologist recommended that I take 1 x loperamide every morning before having anything to eat! A week later, and I seem to be a lot better with 2 formed bowel movements per day (which is normal for me). She told me that it about managing the PRDA and I am hoping that I will continue feeling the benefits of what she recommended me to do.