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Radiation Proctitis

gmalinda41
Posts: 2
Joined: Apr 2013

I am hoping that someone else here has some suggestions!!  I was diagnosed and treated for anal-rectal cancer back in January of 2000.  I have my screenings regularly and now have been cancer free for 13 years. I was succesfully treated using chemotherapy and radiation therapy. (35 treatments of radiation therapy)   My skin was severely burned and has lots of discoloration to it. In the past 6 years I have had 2 colonoscopies both showing proctitis.  And more recently having problems with itching, burning, rectal bleeding, diahrea, and the feeling that I always have to go.  Some mornings I wake up and cannot be more than 20ft from the bathroom.  I have been very good at avoiding foods that use to trigger the symptons.  Now it seems that everything I digest is causing problems. 

My last colonoscopy (last week) had a biopsy result with proctiitis.  ON previous colonoscopies the gaestroenterologist just said there were indications of proctitis.  The doctor seems to think a high fiber diet is the cure-all to everything, anyone else going through this have any suggestions that helped them?  This condition is starting to affect my quality of life, and I would do anything to get back to normal! Thank you in advance!

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

First of all, congratulations on being cancer free for 13 years!  That is awesome and so very encouraging for me to hear as I approach year 5!  I hope you will continue to be NED!

As for radiation proctitis, I have had bouts of symptoms which I attribute to this condition.  My bowels will go from diarrhea mode to constipation mode faster than zero to sixty sometimes.  I believe a lot of it has to do with diet.  Until I had an obstruction in my small bowel this past January, I ate whatever I wanted and just suffered the consequences.  However, since being admitted to the hospital for the obstruction and learning how serious this was and that if it happens again, I may need surgery, I have tried to be more careful with my diet.  I truly believe that after the radiation treatment that anyone receives for anal cancer, diet can have a huge impact on how our bowels cooperate or don't cooperate.  I eat very few veggies and fruits these days and never raw, only cooked in small amounts.  I can't remember the last time I ate a salad.

I'm sure you have done some research on the condition of radiation proctitis and know that there are actually two kinds--acute and chronic.  You are obviously experiencing the chronic form since it has been many years since your treatment.  I checked out a few websites and most discussed medical intervention for proctitis, including surgery in some cases.  I'm pretty sure that's not what you are looking for!  The Livestrong website discusses proctitis and how beneficial eating rice can be--you might want to check that out.  Brown rice is recommended, unless diarrhea is an issue, then white is advised.  A bland diet can be helpful, avoiding spicy foods and seasonings.  Since my obstruction, I do not eat anything high fiber.  I have switched from whole wheat products to white and eat a lot of potatoes and white rice.  If you are not eating yogurt, you probably should be eating it, perhaps as much as twice a day.  It puts lots of the good bacteria into your system and helps tremendously with proper bowel function.  I eat a lot of it these days.  Plain Greek yogurt is the most beneficial, so as to avoid all the extra sugar that is added to the fruit-style yogurts.

My recommendation would be to check out a low fiber-low residue diet and try it for a couple of weeks to see if it makes a difference.  As my colorectal doc explained to me, this type of diet allows the bowels to "rest."  Plenty of fluids are necessary, but caffeinated drinks should be avoided.  After my bowel obstruction, I ate a lot of creamed soups and made my own, partly because of the high sodium content in canned soups, and partly because I find canned soups just plain disgusting!  Who knows what they put in that stuff!  I would cook the soup, then whiz it in the blender.

I certainly sympathize with your situation.  I would tend to disagree with your doctor as to the benefit of a high-fiber diet, considering that you are having urgency and diarrhea issues.  However, another thing you might try is a physillium supplement, such as Metamucil, if you are not already taking it.  It may help to bulk up your stools and prevent diarrhea.

That's about all I've got on this subject.  I wish you the best and hope you'll come back here to let us know how you are doing.  I'm sure it's quite frustrating for you, but the good news is you remain cancer-free!  I send you my best wishes.

gmalinda41
Posts: 2
Joined: Apr 2013

This are the first words of encouragement and kindness that I have received.  And what you have stated is making perfect sense to me. My gaestro doc suggested a high fiber diet and I have been miserable ever sinceEven though I have been miserable after many years of treatment due to the radiation proctitis, I am very lucky and completely blessed that I am a survivor.  I somehow had it in my brain that follow-up from my treatment was good enough to just see my gaestro-enterologist, but now I am leaning on finding a colorectal doctor.  I will start my new chapter in survivor life with the Live Strong site!  I am so thankful that this site is still going strong! I forgot how useful, and how much better it can make one feel.  I wish all of you the best. My former colon doctor (now relocated to another state) told me that if I can make it past the 5 year stat, I have  great chance of beating cancer!! And I hope the same for all of you!

eihtak
Posts: 818
Joined: Oct 2011

Hi, I just want to ditto all that Martha said.....good diet advice. Also great to hear from someone who has been cancer free for 13yrs, it gives us all encouragement. Congrats to you!!! I am 2yrs post treatment and although have many life long issues due to radiation, I have a colostomy so my diet and bowels opperate a little different than those without. I hope you are able to find help for your current situation and will keep you in my thoughts for continued health!

Lorikat's picture
Lorikat
Posts: 555
Joined: Jul 2011

Don't you get frustrated when "nutritionists" tell you you need more fruits, vegetables and fiber??!!  I try to explain and they look at me askance....   Oh, I've gained 3 UNNEEDED pounds.....first I don't want to eat now I WAKE UP IN THE MIDDLE OF THE NIGHT HUNGRY!  (I don't eat then, LOL!). Oh well.......

 

mxperry220
Posts: 357
Joined: Mar 2011

I am 4 years 3 months post anal treatment.  I have had not diarrhea issues but have had 4-5 BMs daily since treatment.  I have started taking a new over the counter product "TruBiotics" by One a Day which has really helped.  I also take two immodium daily.  Before treatment my normal BM habit was 1-2.  It seems my new norm is 2-3 Bms daily.  Below is a link to TruBiotics.  I get mine form target.

http://trubiotics.com/?WT.mc_id=TRUS121648&WT.srch=1

Hope this helps,

Mike

torrance
Posts: 118
Joined: Jan 2012

Wow, I sure have some experience with this.  I had struggled with this until my last visit to my Rad Onc.  I had been suffering with severe pain with BM's and bleeding and urgency.  I didn't and don't suffer from diaherria, urgency and 5 to 8 times a day was miserable.  Anyway, long story short, I am on day 20 of a what should be a 30 day cycle of a new med for me called Canasa.  It is a daily suppository.  I can not believe what a difference it has made for me.  The pain is drastically diminished, the bleeding has subsided, etc etc.  It is a sulfa based drug so if you have issues, it may not be an option for you.  It is avaiable as an enema as well, which is what the dr had me try work.  You are supposed to use it at bedtime and hold it all night!  LOL, that so didn't work!  As soon as I got up to get in bed it was gone.  Therefore, the supp. was the answer for me.  I will definitely be adding this to my arsenal for what I anticipate will be future flare-ups.  Hope this helps someone!

 

Joanne

lizgino's picture
lizgino
Posts: 7
Joined: May 2012

I have to agree with all of you regarding diet!  I'm 10 months in remission and have experienced bouts of proctitis, pretty much the same as you all, the more urgency and loose stools vs diarrhea.  I do have to tell you all that I started the 17 day diet by Mike Moreno.  I did it to loose a few pounds, but let me tell you.... It is really not a diet, but a new healthy way of eating where your diet changes up every 17 days.  It really helped me with managing my bowels and symptoms!  I do eat a lot of greek yogurt (plain, and I either add fresh fruit and truvia or a bit of sugar free jam), apples, veggies, chicken, fish, etc.  It does eventually allow you to put things like oatmeal, brown rice, etc back into your diet.  It is allowing me to find out what my body can and CANT tolerate well, oh and I've lost 23 lbs in 2.5 months! 

I would highly suggest this diet to help those who need to retrain their bodies to eat right (I was a carboholic before, and really didn't have much of cravings!) and it allowed me to really BALANCE how i ate.  Hope it works for you, it has really helped me!

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

I really think diet is the main factor in managing symptoms of proctitis.  Sometimes I stray quite a bit from my normal diet, such as when I'm away from home on a trip and don't have access to the things I normally eat.  I always know I will pay a price.  I eat a lot of Greek yogurt these days.  I am missing my steel-cut oatmeal in the mornings and may get brave enough to try it again one of these days.  I haven't eaten it since my bowel obstruction in late January.  I will check out the diet you refer to--thanks for sharing that information!  And a big congrats on your weight loss--that's awesome!

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