Radiation Proctitis

Mollymaude

Sunshinelove

Thanks for letting us know what worked for you. Radiation truly is the gift that keeps on giving!

GinnyBeach

Radiation Proctitis

I have found this post quite helpful.  Thank you.   I am 6 months post treatment (25 external radiation trestments with weekly Chemo and then 5 internal radiation treatments) for cervical cancer and am cancer free. 

Let me also say, that in the early 1950s my grandmother in her early 50's (my age as well) had radiation treatments for cervical cancer and lived into her late 80's,  cancer free.  But she lived with the side effects of the radiation treatment for over 30 years.  She had a colostomy and lost a kidney but she lived a happy and loved life.

Now back to my story.  I began having unexplained abdominal pain in late January, (3 months post treatment).  My OB oncologist did an exam and said there was nothing he could do and recommended I seek pain management to deal with the pain. 

It has been 2.5 months with no quality of life and I've lost 60 lbs in 2.5 months.  I don't recommend getting sick with severe constant pain as a way to lose weight.  I've had two minor surgeries and spent a week in the hospital and still have no specific answers.

I did seek a second opinion and have a new OB Oncologist who has been working to get things figured out.  However, about 10 days ago, I diagnosed myself with Radiation Proctitis.  I called my oncologist last week and this Monday I have an appointment with a GI specialist.  I am hoping to get some answers and relief. 

I have been looking online which lead me here and I've been trying to modify my diet to help with the constant need and urgency of using the bathroom.  I hope I don't have a lifetime struggle due to having had radiation treatments but I'll do what I can to help myself have the best qualify of life possible.  Positive attitude and positive spirit is the only way.  Its nice to have a place to come and find out about other similar stories.  Thank you.

dln1014

gmalinda41

Congrats on your 13 years, that's awesome! I'm on 7 myself but I too have issues with diarrhea which has become severe. I'm recently seeing a new gastro doc because the last one just basically told me it was from NSAIDS, which I have not taken since Oct. 2017 and hardly even took any at all. Colonoscopy showed start of lymphocitic colitis but new gastro doc seems to think its because of radiation. I do eat very well. Meaning chicken, rice, potatoes, yogurt, bananas, etc. which seems to help but when I have a flare up there is nothing stopping it. I'm right now in the stages of testing to see what is really going on but it's very frustrating because it has affected my quality of life for sure. New gastro doc has put me on Elavil 10mg nightly which has helped with the diarrhea. Will keep you posted. Good Luck!

mp327

dln1014 said:

gmalinda41

Congrats on your 13 years, that's awesome! I'm on 7 myself but I too have issues with diarrhea which has become severe. I'm recently seeing a new gastro doc because the last one just basically told me it was from NSAIDS, which I have not taken since Oct. 2017 and hardly even took any at all. Colonoscopy showed start of lymphocitic colitis but new gastro doc seems to think its because of radiation. I do eat very well. Meaning chicken, rice, potatoes, yogurt, bananas, etc. which seems to help but when I have a flare up there is nothing stopping it. I'm right now in the stages of testing to see what is really going on but it's very frustrating because it has affected my quality of life for sure. New gastro doc has put me on Elavil 10mg nightly which has helped with the diarrhea. Will keep you posted. Good Luck!

din1014

I'm glad you found the anal cancer group.  I was treated in August/September 2018 and still have bouts of diarrhea in between bouts of constipation.  I guess that is my new normal.  My bowels do act up sometimes, depending on what I eat.  I think your first gastro doc telling you that NSAIDS cause this is pretty bogus.  Your new doctor is most likely correct.  Radiation has long-term side effects, unfortunately.  Of course, there's always the chance that there is something else contributing to your issues, so I hope your new doctor can figure it all out and help you. 

Garden Love

Radiation Proctitis

Hello All,

I have just discovered this group, so this is my first time posting.  Perhaps I can add my feelings of sympathy and understanding to the rest of the AC Survivors.  That is my wish.

I have been 10 years cancer-free.  I remind myself that this is good news.  "My" tumor was also about the size of a lime, stage 3 by size definition, but stage 2 because there was no lymph node involvement.  I had similar tx:  surgery and simultaneous chemo/radiation.  As well, I also developed 3rd degree burns all over my nether-regions.  And now, nary a hair grows down there.  (Some women pay a lot of money for this!)

I was told by my oncologist that I would have to resign my university teaching position at the ripe old age of 50.  This still hurts my heart today as I cannot work in my chosen profession -- or, away from home at all.

I have had chronic radiation proctitis seemingly since day one.  (Perhaps my sensitivity to the radiation was greater because I am celiac since birth (gluten intolerant)).  I could not leave my house for about three years because of diarrhea.  I was so weak I couldn't walk up a few stairs.  I lost close to 35 pounds and I was slim to begin with.  And, I've been a vegetarian since age 13 -- oh, the irony! 

Slowly, slowly, slowly I got stronger.  However, 10 yrs. out, I still experience chronic diarrhea, often with mucous and sometimes with some bleeding.  (I do believe that I should invest in an underwear company as I go through panties like crazy.) 

I never know when a bout might hit.  This has kept me close to home and curtailed my former travel wanderlust.  I do know that diet and stress level (for me) are triggers.  My former love of fruit and veggies is but a dream long forgotten.  Salads, raw veggies, crisp ripe fruit?  Forget about it.  Anything with roughage or spice (and I adore spicy food!) will end badly (pun intended).  And, the diarrhea lasts for many days at a time.  And then comes the fatigue.

I wish I had something positive to say about CRP (chronic radiation proctitis), but I don't.  It is just the new normal for me, as my fellow survivors say.  And, as one witty woman wrote, radiation is just the gift that keeps giving.

For me, slowly, slowly building a large veggie garden and small fruit orchard literally made me strong again.  I cannot eat much/most of what I grow, but I give the produce away to friends and family.  Overcoming fatigue is always a challenge and some days I just can't work outside.  However, knowing the trees and plants need me to survive also pushes me forward.   (Yes, I live in California) ;-)

I am sorry for the long post.  I'm having a "down" day, as I'm sure many of us can relate to experiencing.  I wish you all the best.  Keep pushing and as the saying went, "Keep on Truckin'!"

Thanks for reading.

Onward and Upward,

Cara 

mp327

Garden Love

Hi Cara.  I am glad you have found this site.  Like you, I am a 10-year survivor too and, unfortunately, I also deal with side effects that just do not go away.  I'm not sure I have experienced quite the same things you have.  My bowels go back and forth between constipation and diarrhea or frequency.  What I eat has a lot to do with that.  I do enjoy salads now and then in small amounts.  Some fruits are tolerable.  I do pretty good with cooked veggies.  I do not eat much beef anymore, as it tends to constipate me.  My worst experience was an intestinal blockage back 2013 after eating some stir-fried veggies.  I think the broccoli is what caused the blockage.  I was hospitalized for a short stay and was released after I begged my doctor to discharge me.  It was pretty miserable until it cleared.

I have been able to stay active and walk and lift weights on a regular basis.  I used to run (ran a full marathon in 2012 almost 4 years after my treatment in 2008).  I can no longer run, due to knee issues and hip pain (which I attribute to the radiation).  I feel very fortunate that I have not suffered some of the long-term effects that others have.  One thing I have learned is that each person's journey is different, but with many similarities.

I'm sorry that you are dealing with the things you have mentioned and how this has had such an impact on your life.  I just want to scream when someone just assumes that because I'm a long-term survivor that my life (and body) is just like it was prior to treatment.  It certainly isn't, but I've adjusted.  I wish you all the best as you go into the next decade and beyond.  Take care.

2b092b

radiation proctitis years after treatment

I feel better about my situation after reading many of these posts.  Thank you.  I wasn't completely sure my symptoms were delayed radiation after affects, as my colorectal doctor said.   I'm not sure now either, really.   I am glad to be alive 10 yrs after IIIB anal cancer.  Looks like there are some treatments that might help me better for the pain of it.  I swear I feel like I'm sitting on a lit cigarette or a fish hook is in there.  (I hope we're laughing now!)  These symptoms have come on slowly over the last few years for me.  I'll be coming back here to hear more encouragement.  And sometime maybe I can give some encouragement too.

mp327

2b092b

I see you have just joined this group and I welcome you!  I also want to congratulate you on reaching the 10 year survival mark!  That's great!  Like you, I am glad to still be here over 10 years after treatment, but it comes at a price.  Luckily, things seem to be manageable, at least so far.  I do believe there are after effects of treatment that come on years later.  I seem to be in a constipation/diarrhea cycle more often these days.  And like you, that causes lots of irritation--yes, I get the lit cigarette or fish hook description, but never thought of it that way.  LOL!  All in all, however, I feel very fortunate to be living a normal life.  It just requires some pre-planning sometimes, such as when on vacations, etc.  Diet plays a huge role in how my bowels react.  If I go overboard on fried foods, I can almost count on some diarrhea or loose stools.  If I don't get enough fiber, constipation comes on.  It's a constant guessing game, but most of the time I do well, once I figured out what triggers both.  

I'm glad you have found this site and I hope you will get support and information that will be helpful to you.  My best advice is just to keep moving forward.  99.9% of the time life is good!  Take care and best wishes!

progolf

radiation proctitis

Hello all !! Reading these posts gives me some solace knowing I'm not alone with this aggravating issue. I had a radical prostatectomy back in June of 2011, which I elected rather than the more common radiation treatments. It was discoved post surgery that the cancer cells had spread outside the prostate gland, which would require radiation anyway. I was put on hormone treatments for 6 months to keep the cancer cells from spreading until it was safe to do the radiation. I then went through 38 radiation treatments which had to stop short around the 30th one because I could not urinate and needed a cath.  Finally resumed those and finished that process. The upside is the cancer is gone so far. The downside is the side effects have been miserable ever since. Anyway I have been dealing with the proctitis since and have to carry a backpack around with my supplies when I go out anywhere. I am fortunate that as a veteran I get my supplies from the VA at minimal out of pocket cost. (pads and underwear) would be costing me a fortune monthly even from walmart. Calmoseptine helps with the irritation along with suppositories. hanks to all for letting me vent a little.  Bob

Geri56

CRP

Hello! I am going to share my total story in hopes I can help someone. Do diet changes soon after treatment so possibly you can avoid severe proctitis. I was diagnosed and treated with 35 Pelvic Rad treatments and 2wks continuous inpatient chemo in 2003~@ 47 yrs old. I am also an RN. My initial during treatment side effects was burned/charred pelvic external and internal skin which resolved 1 month after treatment. But very sadly, sexual intimacy ended due to tissue changes/pain. I tried resolving with prescribed estrogen cream and even dilators~~I tried my best but too much pain and bleeding~so very sadly no luck. I thank God for my loving, understanding husband. That was a sad effect which the radiation oncologist denied was due to radiation. Very frustrating~he wouldn't acknowledge in order to educate other patients. 3 mos after treatment I then had abd. bloating with anything I ate-put on Xifaxin~gut probiotic which helped but pricey~was worth it to me. Now, since the last 9 yrs I have had the progression of radiation proctitis. It started with urgency and 1-2 days a mos of stool incontinence with mucous, bleeding and gas all the time. Now-17 yrs out I have 2-3 days a mos only that I don't have incontinence, bleeding, and urgency~so, pretty much daily. My new normal. Have gone to various MD's~~all w suggested Metamucil~~that only caused bloating for me. One prescribed Canada~1000mg suppository~with insurance $8.00 each so I use sparingly but it does help. I found I've been hopping in the bathtub for pain relief frequently the past two months so I just ordered a sitz bath to add to my travel items. I have what I call my "diaper bag" with me at all times or at least in my car and a pad in my coat pocket or purse in summer. I wear a pad always~sometimes Depends~have ruined many underpants.Though humiliating~I refuse to let this control my life~and make me a prisoner in my own home. For those close to me, I've let them know what I'm dealing with which was embarrassing but now their support helps me tremendously. I have been eliminating foods for yrs. as others have posted. My culprits are roughage(raw fruits, vege), anything fried, caffeine, Spivey foods, legumes and any alcohol. So out the window for Friday fish fries or pizza with a beer?. Salads are also a hard loss in my life~I do eat just a small amount here and there. I only use Dove soap with a soft rag to wash my bottom~I could not find any diaper wipe that didn't inflame. I use a hydrocortisone cream to help with external irritation ar times~keep in mind that is a steroid that thins already damaged skin~so do not use every day. Sometimes it helps, sometimes it doesn't. A low fat, low residue diet with small amounts of food at a time seems to be the answer.  Keeping clean and dry is key~my "diaper bag" has two wash cloths, hand towel, dove, pads, depends and cream. I'll have a second bag with the sitz bath now for when I go to someone's house who knows of what I'm dealing with~planning on NYEve at my sisters~will take with cuz' I want to celebrate~not hibernate and it will allow me to do that. I am alive, I have been around to see 3 grandkids born who are now in college and HS, I saw our 2nd daughter get married. I choose to Live, as corny as my life has become. If I go for the next level of medical treatment~I will write about that journey. Blessings to each of you going through this.❤️

Geri56

CRP

Hello! I am going to share my total story in hopes I can help someone. Do diet changes soon after treatment so possibly you can avoid severe proctitis. I was diagnosed and treated with 35 Pelvic Rad treatments and 2wks continuous inpatient chemo in 2003~@ 47 yrs old. I am also an RN. My initial during treatment side effects was burned/charred pelvic external and internal skin which resolved 1 month after treatment. But very sadly, sexual intimacy ended due to tissue changes/pain. I tried resolving with prescribed estrogen cream and even dilators~~I tried my best but too much pain and bleeding~so very sadly no luck. I thank God for my loving, understanding husband. That was a sad effect which the radiation oncologist denied was due to radiation. Very frustrating~he wouldn't acknowledge in order to educate other patients. 3 mos after treatment I then had abd. bloating with anything I ate-put on Xifaxin~gut probiotic which helped but pricey~was worth it to me. Now, since the last 9 yrs I have had the progression of radiation proctitis. It started with urgency and 1-2 days a mos of stool incontinence with mucous, bleeding and gas all the time. Now-17 yrs out I have 2-3 days a mos only that I don't have incontinence, bleeding, and urgency~so, pretty much daily. My new normal. Have gone to various MD's~~all w suggested Metamucil~~that only caused bloating for me. One prescribed Canasa 1000mg suppository~with insurance $8.00 each so I use sparingly but it does help. I found I've been hopping in the bathtub for pain relief frequently the past two months so I just ordered a sitz bath to add to my travel items. I have what I call my "diaper bag" with me at all times or at least in my car and a pad in my coat pocket or purse in summer. I wear a pad always~sometimes Depends~have ruined many underpants.Though humiliating~I refuse to let this control my life~and make me a prisoner in my own home. For those close to me, I've let them know what I'm dealing with which was embarrassing but now their support helps me tremendously. I have been eliminating foods for yrs. as others have posted. My culprits are roughage(raw fruits, vege), anything fried, caffeine, Spivey foods, legumes and any alcohol. So out the window for Friday fish fries or pizza with a beer?. Salads are also a hard loss in my life~I do eat just a small amount here and there. I only use Dove soap with a soft rag to wash my bottom~I could not find any diaper wipe that didn't inflame. I use a hydrocortisone cream to help with external irritation ar times~keep in mind that is a steroid that thins already damaged skin~so do not use every day. Sometimes it helps, sometimes it doesn't. A low fat, low residue diet with small amounts of food at a time seems to be the answer.  Keeping clean and dry is key~my "diaper bag" has two wash cloths, hand towel, dove, pads, depends and cream. I'll have a second bag with the sitz bath now for when I go to someone's house who knows of what I'm dealing with~planning on NYEve at my sisters~will take with cuz' I want to celebrate~not hibernate and it will allow me to do that. I am alive, I have been around to see 3 grandkids born who are now in college and HS, I saw our 2nd daughter get married. I choose to Live, as corny as my life has become. If I go for the next level of medical treatment~I will write about that journey. Blessings to each of you going through this.❤️

Geri56

Anal Cancer~Chronic Rectal Proctitis

Hello! I am going to share my total story in hopes I can help someone. Do diet changes soon after treatment so possibly you can avoid severe proctitis. I was diagnosed and treated with 35 Pelvic Rad treatments and 2wks continuous inpatient chemo in 2003~@ 47 yrs old. I am also an RN. My initial during treatment side effects was burned/charred pelvic external and internal skin which resolved 1 month after treatment. But very sadly, sexual intimacy ended due to tissue changes/pain. I tried resolving with prescribed estrogen cream and even dilators~~I tried my best but too much pain and bleeding~so very sadly no luck. I thank God for my loving, understanding husband. That was a sad effect which the radiation oncologist denied was due to radiation. Very frustrating~he wouldn't acknowledge in order to educate other patients. 3 mos after treatment I then had abd. bloating with anything I ate-put on Xifaxin~gut probiotic which helped but pricey~was worth it to me. Now, since the last 9 yrs I have had the progression of radiation proctitis. It started with urgency and 1-2 days a mos of stool incontinence with mucous, bleeding and gas all the time. Now-17 yrs out I have 2-3 days a mos only that I don't have incontinence, bleeding, and urgency~so, pretty much daily. My new normal. Have gone to various MD's~~all w suggested Metamucil~~that only caused bloating for me. One prescribed Canasa~1000mg suppository~with insurance $8.00 each so I use sparingly but it does help. I found I've been hopping in the bathtub for pain relief frequently the past two months so I just ordered a sitz bath to add to my travel items. I have what I call my "diaper bag" with me at all times or at least in my car and a pad in my coat pocket or purse in summer. I wear a pad always~sometimes Depends~have ruined many underpants.Though humiliating~I refuse to let this control my life~and make me a prisoner in my own home. For those close to me, I've let them know what I'm dealing with which was embarrassing but now their support helps me tremendously. I have been eliminating foods for yrs. as others have posted. My culprits are roughage(raw fruits, vege), anything fried, caffeine, Spivey foods, legumes and any alcohol. So out the window for Friday fish fries or pizza with a beer?. Salads are also a hard loss in my life~I do eat just a small amount here and there. I only use Dove soap with a soft rag to wash my bottom~I could not find any diaper wipe that didn't inflame. I use a hydrocortisone cream to help with external irritation ar times~keep in mind that is a steroid that thins already damaged skin~so do not use every day. Sometimes it helps, sometimes it doesn't. A low fat, low residue diet with small amounts of food at a time seems to be the answer.  Keeping clean and dry is key~my "diaper bag" has two wash cloths, hand towel, dove, pads, depends and cream. I'll have a second bag with the sitz bath now for when I go to someone's house who knows of what I'm dealing with~planning on NYEve at my sisters~will take with cuz' I want to celebrate~not hibernate and it will allow me to do that. I am alive, I have been around to see 3 grandkids born who are now in college and HS, I saw our 2nd daughter get married. I choose to Live, as corny as my life has become. If I go for the next level of medical treatment~I will write about that journey. Blessings to each of you going through this.❤️

Geri56

Hello~ please read my other post from today

I accidentally duplicated my long story~~I also was told high fiber by multiple MD's. Low fiber, low residue and unsliced is what I found works. Alcohol and caffeine also irritate?

mxperry220

Proctitis

I was treated for anal cancer in 2008.  I have rectalproctitis as a result of the radiation treatments I had.  In March of 2020 I had to go to my colon rectal surgeon with issues regarding bowel movements.  I did not have diaherra but other BM issues.  The doctor advised I had rectal protitis which is an inflammation of the retum.  This is not curable but treatable.  The doctor prescribed Mesalamine DR oral and suppository.  This medication is not cheap but it helps.  I did not do well with suppository but am still staking oral medication(two pills daily).

lolow

Radiation Proctitis

Hi Everyone!

  I'm 6 years out. Wasn't able to read all entries on this topic but wanted to suggest trying a Low FODMAP diet. It doen't have to be forever! It can help you discover your triggers then avoid the worst ones. For me, oils can be a challenge. In simplistic terms, I try to stay under my threshhold. Small portions. Watch how much "healthy" stuff I eat at one time - for example, caffeine, whole grains, certain veggies and/or fruits can be tough on our fragile system. I can get away with a spoonful of this or that, but not heaping servings. What is "healthy" to a regular bowel is very "unhealthy" to mine! I love some of the FODMAP apps where I can substitute - for example, instead of iceberg lettuce I now eat spinach. 

Anyway, good luck to you all!

Linda

sumdav

Newbie, Trying to finger this out.

Hi everyone,

I thought I just had BAD hemoroids as being a truck driver that is a common issue, My Dr's had me try SEVERAL different creams to no avail, I was then diagnossed with an anal fissure, durring surgury for that (injection of botox to paralize the spinchter) the doctor saw something and took a biopsy and low and behold....

I was diagnosed with stage 3 anal cancer in June of 2019....I feel blessed that we found it before it spread but the tumor was about the size of a goose egg 5.7cmx3.5cm, I was also lucky that we have a pretty good cancer center here in Rapid City, S.D. and was able to get started on treatments with-in 1 month of diagonsis. I ended up having 30 radatation and 2 5day chemo treatments.

Like most of you I had 3rd degree burns inside and outside and the inside pain was attrocious. After the 1st week I went online and found a bidet I could attach to my toilet....THAT was a HUGE blessing and helped to alleviate the irritation from having to wipe...(I still use it everyday)...only have to pat dry.

Now the real trouble started after I was able to stop taking the pain meds back in Feb 2020...with-in 2-3 days I started having bouts of diahrea...thinking it was the med I take for another health condition (common side effect) I just figured it was going to go away....NOPE.....almost 1.5 years later I still have uncontrolable bouts with inconsistant BM's hard, liquid, semi-formed and they change throught the day.....I have tried different diets, removing certain foods and even tried eating the exact same thing every meal for 3 weeks....still no consistancy, in fact it seemed worse. I then tried pre and probiotics, vitamins, herbs, supplements and of course the regular Imodium, Citrucel/Metamucil and Colostyramine....ARGH....nothing has helped, things are so inconsistant it drives me insane...just when I think I have it figured out....BAM (as Emeril would say) the problems resurrface.

I have learned that raw veggies/fruits, spicy hot foods, anything with Canola oil seem to make it worse, I have yet to find what really helps. I can eat the same thing 3 days in a row and get 6 different results.

I try to not let it rule my life but it is hard when you try for 2 hours and 8 attempts to leave the house and can't get to the car before having to run back inside to sit on the can. I also have worn diapers but when it is liquid NOTHING holds it in and it just causes a bigger mess. I also noticed the more active I am the more active my bowels are....is that the norm with all of you as well?

Also...has anyone else found that their sphincter mucels are non-functioning? Mine are at about 30-40% If I feel the urge to go...I better be with-in 30 seconds to a minuite of a place to sit or bad things happen. I noticed that basically everything below the bellybutton has stopped working correctly, My bladder will hurt and I urinate 20-30x per day, my ding-a-ling will not salute (it will get semi erect) and my ejaculate is clear and watery...TMI?

I saw on a different post someone suggested slippery elm and another mentioned bentonite powder...thoughts? I do have to be concerned with drug interactions as my 1 med has TONS of things it interacts with.

ANY advice will be be taken into account.

Thank you for letting me vent and for any help.

 

Fengshoe

Proctitis

Congrats on surviving your treatment. I too had 30 radiation treatments and 2 rounds of mitomycin and 5FU for stage 3b anal cancer. It’s been 4 years since treatment ended and I finally feel like things are “normal”. Unfortunately, it’s going to take time for your body to repair itself. My colorectal surgeon said it can take up to 5 years. Until then, try to determine the biggest triggers like caffeine, fried foods, sugar, dairy, etc. You may also want to take Lomotil or Imodium. Don’t worry, these can be short term aids and may not be needed long term. I don’t suffer from radiation proctitis. Not sure the exact reason why, but I’ve been very proactive about therapy and exercise. You might ask your doctors about pelvic floor therapy to help with healing. Best of luck on your journey.