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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: 3210
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!

nicotianna
Posts: 134
Joined: Oct 2013

Hi - I think going to a colorectal doc would be a good idea.  Gastroenterologists focus on the g-i tract at a higher level (stomach & intestines). A gastroenterologist diagnosed my anal cancer as a hemorrhoid after doing a colonoscopy on me.  He recommended my increasing fiber in my diet.  He had not taken a hx on me (I was already a vegetarian)!  I was diagnosed 11 mos. later w/stage 3b AC:(.

I am so happy you survived so long & w/a gastroenterologist following you to boot!

Nic

lifeaftercolorectal
Posts: 1
Joined: Feb 2015

Hi ,  Thanks to gmalinda41 for this excellent summary.  I am a man and now about 13 years out (and aged 65) from high rectal cancer treated with surgery, radiation and chemo.  It is great to not have cancer but there have certainly been some subsequent problems which it would be lovely not to have! .  I had multiple obstructions and had to have a block resection of small bowel after abiout 8 years.  I then developed radiation proctitis as well as having "short bowel" syndrome due to the resection.   I was tried on Canasa and steroid suppositories but these were not helpful (and the medical literature suggests that the benefit is only modest - not that they are not worth trying!).   However as I was in the UK for a time I was seen at the Royal Marsden Hospital London  (pretty much one of the top cancer hospitals in the UK) where there is a consultant Dr Jervoise Andreyev who specializes in post gi cancer symptoms.   He has published very extensively in the standard (ie not alternative) medical literature so very well worth looking at his publications . One thing that he did was to recognize that my horrific diarrhea was related to short gut and bile acid malabsorption.  Interestingly the best test for this is the SEHCAT test (look it up on Wikipedia to find details) which very strangely is not available in the USA (it uses radiotracers which I guess are less available in the USA, might be worth asking a US gi just to do a trial of colesevelam aka Welcol ).   Following this he put me on Colesevelam (Welcol)  which is a more specific form of colestyramine - a resin which binds bile salts.  I had been tried on cholestyramine itself  before but it was of little value - again there is good published work that colesevelam works better -albeit it is very expensive in the USA (about $700 per four month supply ) but may be going off patent soon which should help (it is covered by the NHS in the UK  in many cases ).   He also put me on Normacol which is a soluble vegetable fiber - I had tried psillium which was not very helpful and a non soluble fiber which was very unhelpful (again not available in USA but is available in Canada and can be ordered over US Amazon - not sure why not available in USA as very well established boring fiber product!) .      A specialist dietician also recommended no fresh fruit or veg as noted above, avoid seed fruits and keep dietary fat below about 45 g per day (this for the short gut issue)  - I have followed this although I appear to tolerate raw banana and endive (Belgium lettuce)  but rest of stuff better cooked or canned.  The combination of these two approaches usefully reduced the diarrea which certainly helped reduce some of the symptoms. In fact generally if I have followed these approaches  I do not have to use loperamide at all whereas previously I was at 2mg before each meal.  Getting this under control has somewhat helped my proctitis (somewhat less sense of wanting to go all the time ie tenesmus ) but this is still a major nuisance.  The main approaches to proctitis that have been helpful for me have been (1) using wet wipes not toilet tissue [ I find the costco brand bulk ones by far the best and best value - in my experience avoid any alcohol containing ones ] (2) using a sitz bath (ie pooping into warm water) - get a robust portable one from Amazon or similar  { I did also install an over toilet bidet at home which washes your bottom down with a warm spray - about $450 , exotic although Japanese toilets are all like this , quite helpful and less fuss than sitz bath but not portable} (3) using a good quality diaper cream around your bottom hole area (I find benanthem cream much better than all the others but more expensive) to prevent discomfort from low level leakage/incontinence  (4)  having long warm tub baths before going to bed (5)  maybe doing some sorts of rectal "kegel" type exercises to strengthen your anal muscles - the UK NHS gives out pamphlets on how to do this and I am trying to incorporate this into my daily exercises - there are specialist physical therapists who apparently can help with this (I went to a lecture at Swedish Medical Center in Seattle and they have an enthusiastic group) but I have not yet used them (6) having lots of dark underpants and carry around a bag with spare underpants, spare meds.  Finally if the proctitis gets very sore I do have a prescription for 12 mg codeine- this helps control the pain and also slows the gut diarrhea - at present I only have take about 4 a week. Unlike loperamide it controls pain as well. I don't like taking codeine or any narcotics but it helps me be more functional and nicer to be around (not pain associated grumpiness). I don't understand why some doctors are so strange about these low dose prescriptions (I am in fact a doctor myself MD and PhD) and I don't need the 30mg of codeine which is in a lot of the tylenol 3 type products.

So this is in the hope that it might be helpful for people.  For me proctitis is a management problem alas and not something that is presently curable.  Prevention would be nice.  There are some relatively unorthodox approaches (look up honey and oesophagitis and radiation) that might be helpful but not much evidence.

Best wishes to everyone and hope this might be helpful.

All these things are really to help manage rather than cure

eihtak
Posts: 929
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: 574
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: 381
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

progolf
Posts: 1
Joined: Sep 2014

I have been dealing with this since completing 38 radiation treatments for prostate cancer. I finally went to a coloractal doctor who prescribed this suppository Canasa. It works really well. He also mentioned another treatment if needed later on. This other treatment is a coating that is applied to the inside of the colon that is " spray paint your colon " in his words. The suppository seems to work ok so I will hold off on the other treatment for now.

mp327's picture
mp327
Posts: 3210
Joined: Jan 2010

Thanks for sharing that info!  I'm glad it's helping you!

Lorikat's picture
Lorikat
Posts: 574
Joined: Jul 2011

My doctor at MDA just prescribed this suppository for me as well.  Two days and I well so much better!  YeA!  I will keep this on hand for future flare ups.  Awesome.

 

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: 3210
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!

Ouch_Ouch_Ouch
Posts: 336
Joined: Aug 2014

Hello, gmalinda41:

13 YEARS - I'm so ->jealous<-. Good work.

I am at 2-1/2 months post treatment, a baby along that road. I don't know whether or not I have proctitis yet, but it sure feels like something is itis-ing. The looser the stools, the more painful they are to my tender tissues. I also have irritable bowel syndrome for decades before, so I think the dietary needs are similar.

I saw the Registered Dietician who works in the office of the radiation oncologist. She recommended avoiding raw fruits, veggies, and foods high in water-insoluable fiber. Instead, eat foods high in water-soluable fiber. They bind water and help gel things up. Examples include psyllium added to beverages, cooked carrots, cooked applesauce, and many others. This article from LiveStrong! is only one of many about this kind of fiber: http://www.livestrong.com/article/345459-what-are-the-benefits-of-soluble-fiber/

PS: I was estatic when the Dietician put croissants on the recommended foods list as a calorie booster!

Cookie911
Posts: 7
Joined: Oct 2014

Good afternoon.  This is my first time on the network.  I was reading all the different statements about Radiation Proctitis.  I was diagnosed with Anal cancer in August 2011 and had chemo and radiation at the same time.  I had a Squamous cell carcinomas that was 4.9 cm or about the size of a lime.  After my radiation treatments they decided to give me another full week at a significant increase in radiation.  In the middle of my treatment I had third degree burns so bad I had to stop radiation for 2 1/2 weeks. My medical oncologist said she had never seen anyone with burns like I had.  Well I managed to survive the severe pain during that period and by Christmas I was in okay shape considering everything.  A lot of weight lose and very weak. Things were going fine until about March 2012 when I started with diaherra and bleeding.  My rectal oncologist said it was radiation proctitis and was a side effect of the radiation.  Part of my lower intensines had some damage that would not recover.  Most of the days I would have 5-10 BM's many times not able to make it to the bathroom. I have had to wear panty liners everyday since then because I never know when it will happen. I too was told that increased fiber would help and to take Citrucel.  Well it was a balancing act between that and anti-diaherra medicine.  I did some research and read wher argon gas beam procedure has been know to help with the radiation proctitis so from January 2013 to July 2013 I had four treatments and each time I was put to sleep.  It helped a little at first but it seemed as time past the diaherra starting getting some better.  I believe it took the treatments that long to work.  Well the bottom line I will go through a period that I am able to control my BM's and then others that I eat a meal and within 15 minutes I have diaherra.  I had a PET Scan in Novermber of 2013 that showed a small hot spot which of course upset me.  My doctor said to wait and have an MRI in 6 months and if nothing showed up it was still the radiation.  Thank the Lord in May 2014 the MRI was clear and my bowels were not to bad.  Well in the last two months they have been anything but good. Had lunch with my daughter today one slice of pizza and drove to the department store to buy a gift and barely made it to the bathroom.  I am thankful that finally they were able to tell me they saw no more cancer but it was a long time from 2011 to 2014.  I consider lucky there is no sign of cancer now but will anal cancer patients deal with the BM problem forever.  I also stay away from salads or any dishes that have a heavy sauce.  One other fact that I wonder if anyone else has dealt with is that I am at risk for Rectovaginal fistula.  This is the very small area between the end of the vagina and rectum and if it breaks my BM's would come through my vagina.  In addition my vagina is much smaller after the radiation. This results in no sexual relations with my husband because of both the smaller vagina and the risk of the fistula breaking.  Has anyone dealth with this.  This is the only place I feel like I can put this kind of detail out because many of you have experienced so much of this.  Thanks for listening and any feedback would be greatly appreciated.

Ouch_Ouch_Ouch
Posts: 336
Joined: Aug 2014

Cookie911: I am sorry that you went through so much with radiation and that it still effects you. I know what you mean about controling things with Immodium, psyllium husks, and the occasional Senna. I also know about the sprinting to the bathroom, so my heart goes out to you.

Since I posted the message above, a friend who is 6 years post-anal cancer suggested that I try the low residue diet for a while to help control bowel movement pain and to rest my GI tract and painful anus. It's very low in fiber and fats. I now pass less stoolage and it's more formed. Since it can be hard to keep the diet balanced, check with a Registered Dietician. If you try it and it doesn't help you, stop.

Ordinarily, when there's vaginal stenosis from radiation, the radiation oncologist will give you a set of vaginal dilators to use in order to get back to sexual function and to help you tolerate vaginal exams. I'm no expert, but with your complication of a possible pending fistula, it sounds to me like you should see a gynecologist who specializes in cancer and pelvic radiation to help you with restoring function. Ask your oncologist for a recommendation or see if there's someone you can see at the nearest cancer center (forum members can recommend one for the region where you live - what region do you live in?). 

You might want to start a separate thread on this topic so it doesn't get lost in the thread you've tacked on to.

ADDENDUM: See my October 19th post in this thread for links to information on low residue diets: http://csn.cancer.org/node/288773

Cookie911
Posts: 7
Joined: Oct 2014

Thank you for your feedback.  I will try the diet and hopefully it will help.  I have a oncologolist gynecologist and has not said anything about the dilators and the risk of sex.  but I sent him an email last week through their medical port and asked him these two specific questions.  As you know to have no cancer is a blessing, but I am trying to see if there is a way to return to the "normal" activities. 

Thank you again.  I am so glad I found this group because unless you have been through this type of cancer it is even hard for other cancer survivors to understand. My best friend had breats cancer 20 years ago and she has said many times if she had to have the cancer she would take breast over anal. 

Thank you so much for your advice 

Lorikat's picture
Lorikat
Posts: 574
Joined: Jul 2011

Cookie, your story sounds like mine.  Substitute July 2011 for your Aug 2011 and there we are.  Ended up in hospital with burns and infection.  Two blood transfusions and 9 days in isolation for nuetapenia.  Now chronic proctitis and no sex.  Vaginal tissue is thin and tears as well as vaginal shrinkage.  BUT I am alive and even with the accidents and pain and happy to be alive!

Cookie911
Posts: 7
Joined: Oct 2014

Thank you for responding.  I also had to have two blood transfusions plus two rounds of iron infusion. Because the radiation damaged my lower intestines my absorption rate is not good so it impacts my be blood count, iron. etc. As I said in the previous post I have emailed my doctor about vaginal dialators and the risk of bursting the fistula if I had sex which would result in a colostomy.  I am alive and that what is important.

 

Thank you

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