Chronic Radiation Enteritis

DVR2010 said:

Radiation Enteritis

I absolutely understand how you feel, I read the posts here and I see me.  I had surgery Sept 2010 for Stage IV (4) Adenocarcinoma Endometrial cancer.  I had major surgery to remove the 4 inch tumor that had attached to the colon.  Part of my colon was also removed and I have a permanent descendng colostomy. I then did the chemotherapy and radiation treatments.  After all the treatments were done and I thought I was in the clear and was starting to rebuild my body from the core up, well in June of 2012 I was hospitalized with a small intestine blockage and since then this has been an ongoing problem.  I have had 4 stays in the hospital (including the June 2012) and I have had several bouts at home.  I have been told that this is Radiation Enteritis caused by the radiation treatments to my abdominal area.  These bouts of radiation enteritis are very painful, even childbirth did not hurt this bad.  The enteritis may be incurable but I am constantly searching for ways to avoid, battle, ease, well just basically find a way to deal with it.  

Today I had another episode, but I started noticing a belly ache type feeling under my ribs and above my belly button, then this morning the bad pains set in.  Tonight I am feeling a little better but I will be on liquids, yogurt, jello, broth, etc until it completely calms down.  

I also have a parastomal hernia and this month I get that fixed in hopes that this will help ease things.  Then I have agreed to try a medication called Trental (Pentoxifylline) that has been said to help soften the scar tissue in the intestines.  I am very against medications but I have to try because living with these episodes is bad enough, not trying would be worse.  I am also goiing to start some of the diet suggestions I have read on here, there are so many good tips.  

I am not a doctor, but I have read tons and I am very interested in hearing what others here have to say.  And if my treatments help then I will update and hope that something can be found to ease this side effect. 

So to Tonora, and others, you are not alone. 

As someone who suffered a very painful small intestinal blockage in late January, I am glad to see you on this board sharing your similar experience.  You are right--a blockage is very painful!  I spent a little time in the hospital with mine and, like you, have had a few less serious episodes since.  Mine, it is thought by my doctors, was caused by the radiation treatment I received for anal cancer in 2008.  However, they did not rule out some type of intestinal bug or infection.  Like you, I have had to tweak my diet drastically since this happened to calm down my bowel.  However, I haven't had an episode for over a week now and am getting a little more brave with my food.  I realize that this can be a recurring theme and after I eat something that's not on the special diet, I sit and wait for the pain. 

I'm sure you know all about following a liquid/soft diet with very little fiber.  I bought a Nutri-Bullet, as recommended by some of the posters on this site, and have been using it to make some very nutritious smoothies.  I also became a fan of homemade creamed soups, as I refuse to eat canned soup!  I just had to keep in mind that altering the texture of any high-fiber food does not change the fiber content, such as blending.  The fiber is still there.

I still eat lots of yogurt, pudding, ice cream, eggs, mashed potatoes, etc.  I do fine with meat, but am not a beef eater, and I eat fish and eggs.  Cheese seems to be okay.  I avoid at all costs anything containing seeds, such as some berries and kiwi, and nuts.  This has definitely been a learning experience for me--someone who has always been able to eat whatever they wished. 

Thanks again for posting here and if you can add any tips on things to help avoid future episodes, I would be most appreciative.  I wish you all the best with the medication.  I hope you'll find it effective and without any bad side effects.  Please let me know how that goes.  My best to you!

cbernt said:

Chronic Radiation Enteritis

I have the same problem as well, however, I just finished radiation for cervical cancer at the beginning of May.  They keep telling me I don't fit the usual symptoms of radiation enteritis because it happened so soon and I don't have chronic diarrea, but that is all it could be.  I am however, having partial obstructions.  Was in the hospital the first time for 4 days then put me right back in 2 days after they released me.  I have dealt with almost weekly flares at home, although the pain is almost more than I can bare.  I had another CT scan last Friday so the doctors could verify it is radiation injury causing the obstructions but no one ever informed me of the results, just called me back to the hospital for another CT because they found blood clots in my lungs.  Wanted to keep me over night but I convinced them to let me go.  So tired of hospitals!  I am so bloated most of the time that when the pain subsides the discomfort is almost as bad.  I am a small person and I look like I am carrying around a beach ball under my shirt.  The reason that I felt I needed to post on this site is not to tell my story, but to let everyone know that my doctors said that the only known treatment for radiation enteritis is hyperbaric oxygen therapy.  I had a consultation with the only hospital in my state that offers it.  It is basically 100% oxygen in a tube that you lay in for a couple hours each day.  I was told it would be 5 days a week for 8 weeks.  I am willing to try anything!  My insurance denied my claim as experimental, but the hospital assured me that the appeal would go through and I will be able to get the treatment.  The only down side is that if it isn't radiation enteritis causing my problems then the treatment won't help.  I guess the oxygen repairs the damaged organs.  I feel for what everyone here has gone through.  Cancer isn't enough but we have to deal with this too?  I have many times felt like the cancer didn't make me sick, but the treatment has, and now I may be this way forever,  Cat

I am so sorry that you have experienced obstructions too.  They are so very painful!  I have an episode every couple of weeks or so.  I have asked my doctors what is causing this and they don't really know, but are guessing the radiation treatment and resulting adhesions.  However, in my case, I have found that when I have an episode, it usually follows a vigorous abdominal workout or lots of bending and twisting.  I have stopped doing some of my normal exercises and it has helped.  The other thing that bothers me is certain foods can trigger an episode.  I ate some brussels sprouts the other night and the next day I had that oh so familiar pain.  I have found that when the pain comes on, if I lie on the floor on my back and put my arms up over my head, doing a full body stretch, it helps ease the pain.  A friend of mine who is a doctor also told me that lying on my right side during an episode will help, so I almost always sleep on my right side now to avoid problems.  My colorectal doctor and a surgeon who I had a consult with both told me that neither food choices or exercise would bring on these attacks.  However, I have to disagree, since they always come on after exercise or eating a high-fiber food.  I was also able to find information on the internet substantiating my theory about the exercise and abdominal compression being a trigger.  I can usually tell when an obstruction is coming on by looking at my abdomen in the mirrow to check for distention.  Like you say, a "beach ball."  The pain is excruciating and a different type of pain than none other, so I know immediately what's going on.  I have only been hospitalized the one time.  It's dangerous to ride these things out, but I don't want to be going to the ER every other week either.  I have read that HBO is an effective treatment.  I hope you can get set up for it and that it will help you.  Please keep me posted.  I wish you all the best.

mp327 said:

cbernt

I am so sorry that you have experienced obstructions too.  They are so very painful!  I have an episode every couple of weeks or so.  I have asked my doctors what is causing this and they don't really know, but are guessing the radiation treatment and resulting adhesions.  However, in my case, I have found that when I have an episode, it usually follows a vigorous abdominal workout or lots of bending and twisting.  I have stopped doing some of my normal exercises and it has helped.  The other thing that bothers me is certain foods can trigger an episode.  I ate some brussels sprouts the other night and the next day I had that oh so familiar pain.  I have found that when the pain comes on, if I lie on the floor on my back and put my arms up over my head, doing a full body stretch, it helps ease the pain.  A friend of mine who is a doctor also told me that lying on my right side during an episode will help, so I almost always sleep on my right side now to avoid problems.  My colorectal doctor and a surgeon who I had a consult with both told me that neither food choices or exercise would bring on these attacks.  However, I have to disagree, since they always come on after exercise or eating a high-fiber food.  I was also able to find information on the internet substantiating my theory about the exercise and abdominal compression being a trigger.  I can usually tell when an obstruction is coming on by looking at my abdomen in the mirrow to check for distention.  Like you say, a "beach ball."  The pain is excruciating and a different type of pain than none other, so I know immediately what's going on.  I have only been hospitalized the one time.  It's dangerous to ride these things out, but I don't want to be going to the ER every other week either.  I have read that HBO is an effective treatment.  I hope you can get set up for it and that it will help you.  Please keep me posted.  I wish you all the best.

After treatment, the dietician at MSKCC advised me to add back foods one at a time, the last foods being legumes and then, finally anything from the cabbage/broccoli family. She cautioned me that the cabbage/broccoli family was probably never going to be in the cards for me again.

I used to love brussel sprouts, cole slaw was a must with fish and broccoli was a mainstay, but I put them in as instructed and as she thad cautioned me, discovered they are no longer digestible for me. She told me to grate carrots and I could probably tolerate them and I bought a carrot "sharpener" that looks like a pencil sharpener and shaves off carrots into pretty little curls. But otherwise, I no longer eat chunks of carrots unless they are cooked.

Psyllium Husks are the answer for any fiber we need. I learned a new trick. I make home made old fashioned oat meal in a rice cooker with dried blueberries in almond milk. Then I put the Green Vibrance, the Psyllium Husks and the Calcium with boron and vitamin K2 right in there and stir it up. It is such an amazing breakfast. I decided the smoothies I was making with the frozen fruit were just too cold for in the morning now that the weather has turned. I find eating a good breakfast to be really important to my day and how it is going to go for me. The Psyllium Husks are really important. I hope everyone here read the MD and Pharmacist couple's recommendation about them. They have made my bowel issues manageable.

This doesn't mean I won't ever have an obstruction. It could still happen but I am glad the dietician gave me these tips.

Sincerely,

Sandy

DVR2010 said:

Radiation Enteritis

I absolutely understand how you feel, I read the posts here and I see me.  I had surgery Sept 2010 for Stage IV (4) Adenocarcinoma Endometrial cancer.  I had major surgery to remove the 4 inch tumor that had attached to the colon.  Part of my colon was also removed and I have a permanent descendng colostomy. I then did the chemotherapy and radiation treatments.  After all the treatments were done and I thought I was in the clear and was starting to rebuild my body from the core up, well in June of 2012 I was hospitalized with a small intestine blockage and since then this has been an ongoing problem.  I have had 4 stays in the hospital (including the June 2012) and I have had several bouts at home.  I have been told that this is Radiation Enteritis caused by the radiation treatments to my abdominal area.  These bouts of radiation enteritis are very painful, even childbirth did not hurt this bad.  The enteritis may be incurable but I am constantly searching for ways to avoid, battle, ease, well just basically find a way to deal with it.  

Today I had another episode, but I started noticing a belly ache type feeling under my ribs and above my belly button, then this morning the bad pains set in.  Tonight I am feeling a little better but I will be on liquids, yogurt, jello, broth, etc until it completely calms down.  

I also have a parastomal hernia and this month I get that fixed in hopes that this will help ease things.  Then I have agreed to try a medication called Trental (Pentoxifylline) that has been said to help soften the scar tissue in the intestines.  I am very against medications but I have to try because living with these episodes is bad enough, not trying would be worse.  I am also goiing to start some of the diet suggestions I have read on here, there are so many good tips.  

I am not a doctor, but I have read tons and I am very interested in hearing what others here have to say.  And if my treatments help then I will update and hope that something can be found to ease this side effect. 

So to Tonora, and others, you are not alone. 

I had radiation and chemo for anal cancer ending in Jan., 2013.  I found your second paragraph (location of the pain) interesting, as I've tried to figure out what on earth is going on in this area of my bowels.  I frequently am starting to feel "stuffed" like I ate a very big meal.  I sit here with the pressure that's on my right upper side, near the bottom of my ribs, out from my belly button.  My husband and I are trying to continue on with life, but he's complaining that I have a strange diet --- I am starting to avoid meat, beans, anything that might cause this stuffed up constipated feeling.  I think I'll try out some of the Greek yogurt and cream soups, etc., suggested on here.  I'll see the doctor in January.  This has been happening for about a year, but yesterday was so BAD, my husband finally went out and got Mallox for me, the result was GAS release.  I can't remember gas like this since about the time I started the rad and chemo.

I came on here looking specifically for what this might be, and it's actually comforting to find many comments about this same experience after treatment.  Thanks.

jbug2 said:

radiation enteritus

I had radiation and chemo for anal cancer ending in Jan., 2013.  I found your second paragraph (location of the pain) interesting, as I've tried to figure out what on earth is going on in this area of my bowels.  I frequently am starting to feel "stuffed" like I ate a very big meal.  I sit here with the pressure that's on my right upper side, near the bottom of my ribs, out from my belly button.  My husband and I are trying to continue on with life, but he's complaining that I have a strange diet --- I am starting to avoid meat, beans, anything that might cause this stuffed up constipated feeling.  I think I'll try out some of the Greek yogurt and cream soups, etc., suggested on here.  I'll see the doctor in January.  This has been happening for about a year, but yesterday was so BAD, my husband finally went out and got Mallox for me, the result was GAS release.  I can't remember gas like this since about the time I started the rad and chemo.

I came on here looking specifically for what this might be, and it's actually comforting to find many comments about this same experience after treatment.  Thanks.

Cautionary tale: Many antacids have magnesium in their formula, like Maalox and Mylanta. (As in the laxative, Milk of Magnesia.) Especially with people like us, prone to enteritis, it has the potential to cause some strong diarrhea, even if taken according to the package directions. If this is a problem for you, ask your pharmacist to recommend a non-magnesium-containing alternative and remember to drink a lot of replacement fluids.

preciouschildvic said:

This is an old post but

This is an old post but wanted an update on your status. I've been living with radiation enteritis since 2008. In the last year it has gotten very difficul. Surgery is not an option at all. Good is very importan. Next week have to start TPN

Welcome here, although I'm sorry that you are having difficulties with radiation enteritis.  My heart goes out to you, as I deal with this as well.  I experience good times, then it will hit me all of a sudden.  I've had numerous partial small bowel blockages, one that was serious enough to send me to the ER and get admitted.  My bowels are constantly going back and forth between diarrhea and constipation.  Many foods can cause me issues.  Anymore, I have no idea what to eat.  I wish you all the best and hope you'll keep us posted on how you're doing.

Martha

Farmer60 said:

My daughter Kim

It looks like we maybe going back to the ER . Kim has been throwing up for two days non stop. This has been going on since Dec. We are in and out of the ER about every two to three weeks. Kim had anal & rectal cancer back in 2011. She had chem and radiation wich got rid of the tumor. She felt good for about two months after treatment then all hell broke loose. She can't eat anything with out it coming up and has lost so much weight. The doctor she is she is starving to death that her body mass is weigh to low. Last week she was in the hospital for 5 days with a blockage and they ran a tube down her nose to drain it. She was home for two days when the throwing up started again. My child is 42 years old and has no life anymore. My heart is broken because I don't know what to do for her and get no answers from the doctors. Kim said she felt better when she had the cancer how sad is that. Im on here looking for help. I went and bought some of the things that the others are eating and will give that a try.

 

                                                                                 Kim's mom

                                                                                       Linda

Has she been diagnosed with radiation enteritis? Is she having bowel movements? I threw up for 3 days and ended up at hospital. They admitted me and put me on fluids. Did cscan and found narrowing of the intestines, attempted surgery but found out due to Rad Enteritis they could not. As I was in there I was liquid diet only and as they redid X-rays the narrowing got better. I was doing well and then my bowels got very constipation and no matter what I took I could not turn it to diahre. It's like everything is stuck and I get so bloated it all comes up. So I do colonics twice a week whitch has saved my life more times than I can count. They are not available in some states but here in Houston, Tx they are. I know if I stick with her and eat soft or liquid foods in very all amounts I will get there. I'm 5 ft and I'm 90lbs, lowest in weight yet. I will not give up, I will learn from people on this site and then I must stick with it. I cannot go back and start cheating on my good cause the episodes are getting worse and are not worth it. It does sound like an obstructio. I felt like I almost had to be dying before surgery would be considere. If she does not have rad Enteritis then surgery is s good option and you do have to go to different doctors to find the dr that will do it. Don't ask me why, scare tissue, insurance, etc, I've heard it all. Now I know because of my REnt there cannot be due to that fact I mat not make it off the table. They won't risk it until there is no other choice. 

im writing down all the food options that other people are saying that is working. Doing colonics, staying on liquids until it gets better. Once my bowels start moving again then I'll concentrate on weight. Good luck and keep us posted.

mp327 said:

preciouschildvic

Welcome here, although I'm sorry that you are having difficulties with radiation enteritis.  My heart goes out to you, as I deal with this as well.  I experience good times, then it will hit me all of a sudden.  I've had numerous partial small bowel blockages, one that was serious enough to send me to the ER and get admitted.  My bowels are constantly going back and forth between diarrhea and constipation.  Many foods can cause me issues.  Anymore, I have no idea what to eat.  I wish you all the best and hope you'll keep us posted on how you're doing.

Martha

Martha, they put a feeding tube in weeks ago to help me get nutrition but I couldnt even keep that good in cause of the blockage and my body was rejecting it causing me even more pain. So that was removed in the hospital. the pain from all that is gone, thank God, but the other is still there. Reading this site tonight lifted me as well as makes me sad. I'm not alone and I've got help here, but there are so many of us hurting. They can kill the cancer but then they don't know what to do with us to help with the damage that is done after treatment. 

Thank you for the reply and I will try some of theses remedies and post as I go.

preciouschildvic said:

Martha, they put a feeding

Martha, they put a feeding tube in weeks ago to help me get nutrition but I couldnt even keep that good in cause of the blockage and my body was rejecting it causing me even more pain. So that was removed in the hospital. the pain from all that is gone, thank God, but the other is still there. Reading this site tonight lifted me as well as makes me sad. I'm not alone and I've got help here, but there are so many of us hurting. They can kill the cancer but then they don't know what to do with us to help with the damage that is done after treatment. 

Thank you for the reply and I will try some of theses remedies and post as I go.

I am so, so sorry that you are having to go through all of this.  I get angry sometimes thinking that the very treatment that got rid of my cancer and saved my life might be the same thing that ends up causing my demise someday.  I live in fear of a blockage that will rupture. 

I believe my very first episode with a blockage was around Christmas time perhaps in 2009 or 2010 (I finished treatment in September 2008).  I had eaten some Mexican food on a Saturday night and became very sick the next day, with horrible abdominal pain, accompanied initially with diarrhea, then followed by vomiting.  The pain was excruciating and I was sure I was experiencing a bad case of food poisoning.  A possible blockage never crossed my mind.  It all subsided and I felt well again.  Fast forward to January 2013, when I had an episode of the same type of pain while out running errands.  When I got home, I vomited until I could no more and laid on the floor in great pain.  It finally went away.  Two days later, I had another bout and it was the worst.  I could not stand the pain any longer and had my husband take me to the ER.  A CT scan showed a partial small bowel blockage and I was admitted for observation and IV fluids--no food or water by mouth.  After 2 days, I begged my colorectal surgeon to discharge me and she let me go home.  Now that I recognize that pain, which is different than any other type of pain I've ever had, I know that I am experiencing a blockage.  It's happened numerous times since the hospitalization and I continue to just ride them out.  I had one just a few weeks ago after eating some stir-fry that I made.

I consulted a surgeon after the episode in 2013 and he felt that neither my diet nor my exercise routine were the triggers.  I don't know about the exercise, but I disagree with him about the diet.  As you have stated, there are just some foods that are very problematic.  Unfortunately, it frustrates me to no end that these very foods are the ones that are the healthiest--fruits and veggies.  Since my most recent episode, I have decided that some things just need to be literally cooked to mush, such as broccoli, which seems to be a common denominator in most of my episodes.  I really hate fearing food and want to eat for optimum health.  But as you know, it has become very complicated, and it sounds like your case is much worse than mine.  I never know when an episode is going to hit me.  My only warning is pain under my ribcage on my right side. 

The other issue I believe I am now dealing with is malabsoption syndrome, where my intestines are unable to absorb nutrients and fats from foods.  I do not gain weight, no matter how much or what I eat, weighing in at 95 pounds on my heavy days.  Fatty foods are a real problem, as they go right through me and cause my BM's to be like the consistency of peanut butter--very greasy, and sometimes light in color.  I have gotten no confirmation of this from my doctors, but after reading up on it, the symptoms sound all too familiar.

I'm sorry the outcome of your surgery was not what you were hoping for.  The surgeon I consulted told me that surgery is usually not done unless there is a good chance of a blockage because the surgery itself can be the cause of more adhesions later down the road.  When he told me that, I thought this was a lose-lose situation and that I was quite doomed.  It's good that I now know what's causing that awful pain when it happens, but knowing there's not a good solution to avoid further episodes is very frustrating.  I am glad to know that the majority of people who have had pelvic radiation do not experience this, but how unfortunate that it is happening to you and me and some others.  I wish I had the answers.

Take care and keep me posted on how things are going for you.  We can at least commiserate together and compare notes.  Take care and I wish you all the best.

Martha

Tonora said:

Chronic Radiation Enteritis
There does not seem to be anything I can do to prevent an episode. I have had so many episodes now, that I know when one is coming. I have indigestion, pain in my belly and then I start vomiting and when the blockage eases, I start to pass large amounts of stool that was behind the obstruction.All of this takes about nine to ten hours to run its course. In the hospital last week, they put me on a clear liquid diet and then a full liquid diet until the obstruction cleared itself. This blockage was in my small intestine. The surgeon that is working with me wants me to try a low fiber diet for three months along with Miralax.
She will be ordering upper and lower G I series tests to try and determine where the narrow parts of my intestine are. If these tests are not definitive, she may have me undergo a enteroclysis test. Apparently, surgery is only performed as a last resort after having radiation to the pelvic area.

Dear Tonora...I've been having the same "horrible episodes" for 10 years.( have had Enteritis since 1975)....I can only tolerate a liquid diet and eggs...however, I still get the blockage, vomiting for hours and pain a lot!  Make sure you drink Pedialite to reboot your electrolites...Dehydration can be very dangerous...even life threatening...Just sip the Pedialite to keep it down...I get awful cramps in my legs and all over from lack of Potassium...Stay with a soft non spicy, lactose free diet as well. I still panick when I feel an episode coming on...Hang in there..You are not alone!..XO, Julie