small bowel damage from radiation (radiation enteritis)

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RE: small bowel damage from radiation (radiation enteritis)

by AnnieGamm on Fri Mar 09, 2012 09:28 PM

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On Mar 09, 2012 7:41 PM TwoTwo wrote:

Thanks, Annie.  Yes, I keep my knees bent a lot and it does help.  I have been eating bananas, toast, applesauce, etc.  I though potatoes would be ok.  Are they not?  I haven't had any bouts with diarrhea in several days, knock on wood...

How long have your cramps been bothering you?  Will they ever go away?

Potatoes are supposed to be okay, especially if they're mashed potatoes.  I have just noticed that they give me severe gas--maybe because I like them and eat too much at a time.

I have been having abdominal spasms since my chemotherapy ended in 2008.  They kept getting worse, and my gastroenterologist thought they were caused by a bad gall bladder.  However, all the tests showed the gall bladder was normal.  In December 2008, I had very severe spasms for about 4 hours non-stop, and then again every few weeks.  I went to the emergency room twice and told them my doctor thought it was my gall bladder (a big mistake!), so they didn't perform any tests--just gave me morphine for the pain and told me to stay on a clear-liquid diet for a few days.  Finally, in January 2009, after yet another gall bladder test and more severe spasms, my husband took me to the doctor's office, without an appointment.  At that point, I was no longer having diarrhea, but was not eating anything and only drinking broth and water.  After I vomitted in the doctor's office, he admitted me to the hospital next door, and they did a CT scan.   The scan showed my bowels were inflamed and blocked, which is a life-threatening situation.  I had emergency surgery to remove the blockage, which was a foot of dead small bowel, so no food was getting through.  It took 9 days after the surgery for me to have a tiny BM before they would release me.  They didn't give me a special diet, so I ate normally for a few days, but then I started to have diarrhea, and it kept getting worse.  My doctor gave me pills that didn't work, so I asked my oncologist to refer me to the M.D. Anderson cancer center in Houston.  They did lots of tests on me to make sure the two places where my intestines had been cut (one in the colon and rectum and one in the small bowel) were not leaking.  Then they looked at every inch of the small bowel and told me it was completely damaged by radiation, with chronic inflammation and lesions throughout.  They told me this was because I had surgery first and radiation second.  After the surgery, the small bowel shifted and became wedged between my pelvic bones, where the radiation was targeted.  Instead of radiating my rectal and lower colon area where the cancerous tumor had been, they radiated my previously healthy small bowel.  They told me the damage would never heal and gave me a diet to follow.  My gastroenterologist at M.D. Anderson told me I could try taking tincture of opium to stop the diarrhea, and I used it with success for a few months.  However, I then started to feel like I was getting another blockage.  I got a new doctor, a colorectal surgeon, who said that was a dangerous drug, so he switched me to lomotil.  That worked for a while, but eventually I felt like I was having some blockage, with intermittent diarrhea.  So now, I just try to get by with Immodium and liquid diarrhea medicine, but I only take it after I have bad diarrhea, because I'm afraid of getting another blockage.  Of course, by the time the diarrhea is bad, my bottom is raw and my hemorrhoids bleeding, which brings up another set of problems and pain.  I use Desitin for diaper rash, and it helps, but I have to keep putting it on after each bout of diarrhea.

So, after that long story, the answer is yes, I still have abdominal pain.  If I didn't eat, I wouldn't have pain, but then I would be very hungry all the time.  My appetite has not diminished, so I eat.  If I eat too much, too often or the wrong thing, I pay for it.  I lose a few pounds each year, because I'm starting to avoid more and more foods after each bad bout with diarrhea.  I hope eventually I will be able to have more will power to eat less and less.  The longer I stay without putting food into my body, the longer I delay the inevitable pain and diarrhea.  

By the way, the only pain medicine that helps control the pain is oxycodone, but because it is a narcotic, it causes constipation.  Sometimes it actually helps control the diarrhea, but I still use it very sparingly, maybe one pill per week, when the pain is at its worst.  

On the plus side, if I can control my eating, I can have a good day or two in a row.

I wish you the best and hope you can get some relief soon.

Annie

 

RE: small bowel damage from radiation (radiation enteritis)

by TwoTwo on Sun Mar 11, 2012 01:29 AM

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Bless your heart!  That's what I'm worried about - that this pain is coming from yet another problem I'll have to deal with.

RE: small bowel damage from radiation (radiation enteritis)

by TwoTwo on Sun Mar 25, 2012 04:21 AM

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Went to the Oncologist last Wednesday and told him I was not just in discomfort and that I wanted answers.  Sent me to drink barium stuff and they xray'd.  I have adhesions and scar tissue, some of the scar tissue is from previous C-Section and hysterectomy.  Hey, but I didn't have any cramps from them before I had radiation...

Some days the cramps aren't so bad.  Some days they are hell.  And I really can't say that any certain foods cause a problem.  They just happen.  When it is bad, I just keep lortab in my system.  The Onc did give me a pain patch but I only wore it one day.  It didn't seem strong enough or something.  I was too chicken to use lortab with it so I removed the patch and just went back to lortab.

He said the adhesions and scar tissue would "have to be addressed during the surgery and the surgery may even have to be moved up".  He was forwarding all the info to the surgeon but I haven't heard anything from him.  So, as it stands right now, my surgery will still be around the beginning of May.

RE: small bowel damage from radiation (radiation enteritis)

by Marshajp on Thu Jun 21, 2012 10:22 PM

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hi, I found this site because when I can't deal with the diaherra and pain I look for a cure on line. Don"t know why I haven"t been here before because these symptoms and problems are exactly what I have been living with since 2005.

Uterine/cervical stage 3  

radical hysterectomy had him take out anything that could go bad!! 

6 wks later

6 wks radiation w/ 1 day chemo also 

They told me by the end of treatment I would be in bad shape but no one said anything about permenant damage.

I had my first colonoscopy year later and the gastro. gave me a demerol drip and I remember screaming 3 times. Right away I ended up at urgent care with trapped gas,but after that I had 8 partial blockages in 10 months. I had a family md who never touched my abdomanand would diagnose flu(beccause her daughter and mother had it)anxiety and then order an IV for dehydration.I'd be at work and all the sudden I'd start vomiting and for a day or two I'd continue with extreme cramps.One urgent care md suggested pepto !!

the same criminal gastro guy told me to take fiber after I emailed history etc  to him.

 I was a manager in a dental practice and we had some pretty good mds as patients and they discussed my problems. Two of them mentioned blockages and I emailed the gastro guy and said I wanted tests. Horrible drinks and xrays cat scans etc no findings. When I finally got into see head of gastro( Kaiser) he seems annoyed and told me my intestines and colon were shot and the next time I better get to a hospital I mentioned my dismal history with that and he basically dismissed me. Everyone was more then willing to give me vicodan which I took for 5 years  1/2 am 1/2pm never did anything luckily I don't like downers or I'd have more problems thanks to them. At some point I realized these episodes followed a cramp if I moved or bended and pain in stomach area so I told gastro I thought it was mechanical and he said he agreed. So now I'm scared to death to exercise or move wrong.The last time 4 mo I bent in the car to get somethiing and felt the muscle spasm and that night I had a 2 day  blockage. I tryed the white diet for 3 months with no change in diahhea or anything. I'm glad to know I'm not alone but very sad that we can't fix it, as I said I was looking for the new cure and I tryed a lot before.  Has anybody found anything that stops diarhhea and is imodian bad long term? I also felt that because I had radiiation and chemo right after operation the scar tissue couldn't be good. All mds I spoke with said exploratory operation to clean up(my idea!) would only cause more problems and I asked a lot. I eat terribly and I was in a yoga book at 18 totally organic ,made bread every week etc.I haven"t eaten any meat in 41 years. Now I,m eating white no fiber garbage and even thats not staying in to well. I know lifes still pretty good but some days it is a little trying . If anyone has any good ideas please pass them along. Take care

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

margo.wilkinson margo.wilkinson
(Inactive)

RE: small bowel damage from radiation (radiation enteritis)

by margo.wilkinson on Fri Jun 22, 2012 08:53 AM

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I am a post surviver of cervical cancer and experience the most depilitating gastric problems as a result of radiation treatment, which, by the way, I had no idea would eventuate. I have had enough!!!!! I am a teacher and the immediate  gastric flushing that I experience leaves me devoid of energy and dignity. Someone out there must have an answer because i DON,T.  I have no warning when I need to use my bowel. Probably 10 - 20 sec max to get to a toilet. Why Why Why do doctors consult with the attitude that this is a minimal or insignificant problem. I dread to think what my future is to be. Shall I be an old women famous for uncontrolable bowel movements. fORGIVE ME for that comment but dear God help me. I constantly think of storing up mediatation for my demise becasue I won,t be that old woman. I am currently searching the net for a solution and living on Crackers and water.Despit e the above and contrary to my words I have always been a glass half full person but I, like so many others have no answers.

Apologies for the above if I sound defeatist but I am at the end.

RE: small bowel damage from radiation (radiation enteritis)

by merrythoughts on Fri Jun 22, 2012 11:16 AM

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On Jun 22, 2012 8:53 AM margo.wilkin son wrote:

I am a post surviver of cervical cancer and experience the most depilitating gastric problems as a result of radiation treatment, which, by the way, I had no idea would eventuate. I have had enough!!!!! I am a teacher and the immediate  gastric flushing that I experience leaves me devoid of energy and dignity. Someone out there must have an answer because i DON,T.  I have no warning when I need to use my bowel. Probably 10 - 20 sec max to get to a toilet. Why Why Why do doctors consult with the attitude that this is a minimal or insignificant problem. I dread to think what my future is to be. Shall I be an old women famous for uncontrolable bowel movements. fORGIVE ME for that comment but dear God help me. I constantly think of storing up mediatation for my demise becasue I won,t be that old woman. I am currently searching the net for a solution and living on Crackers and water.Despit "" target="_blank" rel="nofollow">http://water.Despit " target="_blank" rel="nofollow">water.Despit e the above and contrary to my words I have always been a glass half full person but I, like so many others have no answers.

Apologies for the above if I sound defeatist but I am at the end.

I am with you all the way. I have to stick to a ridged low fibre diet not even a lettuce leaf no vegetables grown above ground nothing spicey this makes eating out very difficult.  Travelling (I usualy take Loperamide (prescibed before hand but do not take them to often)I need to know where the next toilet is and in the towns I know I can rely on MacDonalds and Weatherspoons.  I spent a whole month in hospital to allow my bowls to rest by being fed by a drip in my neck after going to A & E 2 months after my last treatment as I could not cope with the pain any longer and although I telephoned the hospital on occassions they said I should not be like this but no one admitted that there was a problem they certainly never thought of seeing me any earlier.  No one told me that there would be any long term problems.  During radio although they knew I was in a lot of pain there was no suggestion that it should be stopped and investigated and was told to eat little and often which was completely wrong as now if I suffer any pain I stop eating to allow everything to flow natualy for 24 to 48 hours.  I felt so alone until I found this web site but sadly there are quite a few like us.  A few years ago the Daily Mail ran a campaign as to why we are not told the truth but as usual lips were seeled. It does not seem to matter how ones life style has changed or any psycological side effects.  I also dread getting older if I will not be able to get to the toilet quick enough

RE: small bowel damage from radiation (radiation enteritis)

by Marshajp on Fri Jun 22, 2012 03:21 PM

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Good morning, I hope we all have a good stomach day although I,ve been in the loo 3x already. I have tried many probiotics and such has anyone found any pill,powder,drink that helps?

Also is anyone on disability? I am 59 1/2 and was a Dental office manager, and dentists are really crazy so I had major stress. My boss convinced me to keep working through treatment so I'd go get radation at lunch. I had to take off the last 2 weeks as I was very weak,he called with work questions a few times a day!. And when I had undiagnosed blockages he'd be very angry if I wasn't at work,I'd be in the ladies room vomiting bile and he didn't want me to leave. I'm trying to do some businesses on my own but am under a lot of stress ,does stress affect any one else?At this stage I can't see how I could manage a job with the diarreha and pain. I also have a foreboding of how is it going to end or when will I end it.I read that one person was HOPING for a colosopy bag,wow that sure sucks ,can no one help us. And as you all know talking about bowel issues is pretty gross so we all suffer in silence. I'm feeling angry since now I see there are a lot of us out here not being helped, and I have not been in touch with anyone that knows what my life is like for all this time so excuse the negativity. Like they say after cancer this is the new normal. Thanks for letting me vent, keep smiling.

RE: small bowel damage from radiation (radiation enteritis)

by missyanne70 on Wed Jul 04, 2012 07:02 AM

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Thank God!! I've found my peeps!!! I have searched for help, for answers, for anyone else!! My onc doc told me "it's just you" when I complained about the slow mental recovery and the diarrhea/vomitting/both issues.  I was diagnosed when I was 39yo, with Uterine stage 3 and ovarian stage 1. After 2 surgeries, 6 chemos (3 weeks apart), 25 extended field rads, and 3 focused rads ... I've been trying to recover for the last 2 years. Granted, I no longer have vomitting and diarrhea every day. I recognize that to be a good thing. But 3-4 days a week of it leaves me feeling horrible! And no one seems to understand why I'm unable to hold down my full-time job because some days I feel great and am active. Of course they don't see me while I'm sick. I am so sick and tired of being sick!! When I'm sick I get depressed. When I feel normal, I feel like I can conquer the world!! Where's the exit ramp for the emotional roller-coaster? Anyone??? lol

Ms Marsha (marshajp), Are you in USA? I only ask because the 2 friends I have that use the word 'loo' are from England. Anyway, if you are, I am on SSDI. Luckily, my best friend threw my butt in the car the next day after my gyn said the word 'cancer'. I say luckily because we (she, mom and I) were able to get the (loooooonnnggg) process started. Feel free to message me.

RE: small bowel damage from radiation (radiation enteritis)

by Marshajp on Wed Jul 04, 2012 05:50 PM

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Anne,you made me laugh with the peeps!! I am actually in San Diego but loo sounds better then some other names. I know exactly what you mean about feeling great then a bad few days or weeks can hit you hard. I never thought about that until you wrote. So many aspects to this cancer thing. What state are you in and did you get ssdi for intestinal issues or cancer? I'm glad to have some back up on this. Please get back to me thanks.

RE: small bowel damage from radiation (radiation enteritis)

by missyanne70 on Wed Jul 04, 2012 08:26 PM

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I'm going to send you a friend request and message with ya.

:-)

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