small bowel damage from radiation (radiation enteritis)

I can't find too much help !

My wife had rectal cancer in2000, 2004 she started having reacurring alment.  First she would get bloated an than pains in her lower back, followed by very bad nausea , then the kicker diarrhea. we think it is a result of the radiation .Does this sound familiar to anybody out there.  Doctors say she has a hard time with carbs.  This one two punch happens every four to five week apart. If you have any advise to help us please e-mail us at  thank you

My reconnect was in July.  I have episodes every 3-4 days where I am in the bathroom every 15 - 20 minutes.  Some times it will last half a day, some times all day and some times 2 days.  And there is never a rhyme or reason for it.  I mean, I can't pinpoint any certain foods or anything.  It is very, very aggravating, depressing, embarrassing - you name it.

Hello,

We met with a new Dr that recommends injections of Octreatide monthy.  It slows down the digestive process so that nutrients & liquids absorb in the small bowel better.  It is very expensive.  There is another drug that just got FDA approval called Gattex, designed for short bowel syndrome.  It's not on the market yet but should be soon.  Not sure of the cost.  I also saw online that Coedine can be used to slow down diarrhea.  My husband uses tincture of opium and it sometimes works and sometimes not so much.

If you google short bowel syndrome you can find do's and don'ts for foods. 

Good luck!

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.

In 1969 I was diagnosed with CaCervix and had radium needles inserted into cervix for three days and followed by Cobalt 60 radiation for several months.A long stay in hospital with all the side effects. I was 26 years old. Someone casually mentioned to me that I "may" have trouble with my bowel later on. Understatement. I had sudden bleeding from the bowel which resulted in  cataurisation of the blood vessels which, of cause were damaged by the rdiation. I too have very little or no warning when I need to go, and this has had some embarrassing moments. It restricts what I can do. Just going for a walk up the roads often results in a sudden turn around. Travelling and staying away from home is not enjoyable.  I can use the loo 4 to 6 times in the morning. I take Imodium tablets which are safe and good. They got me through the day when I was working. Having now retired, life is a bit easier. But it certainly is a case of the dog wagging the tale. I agree about doctors and their attitude. This is not a minimal problem but a disability. I can fully understand your feelings. Being a teacher it must be especially hard to deal with. I am now an older woman and on the whole keep very good health. I certainly would prefer not to have this side affect, of course, but I have and so I will continue to take Imodium, wear "Good Nights" san pads during the day. Thay are especially long and afford some protection when there is an accident. You are not defeatist. Stay strong, keep that glass half full and know that you have not got this thing on your own. Take care.

I know just how you feel like you I am dreading old age will be able to get out of my chair quick enough, will I be able to climb the stairs to the loo, and above all will I end up in a care home because of this, and why should I pay for this with my hard earned cash that I worked for all my life when this is a NHS problem.  When I was in hospital at least 3 medical staff suggested that something had gone wrong but no clear answers.  The senior staff suggested that my bowels moved!!! If that is possible then why is this not checked during the therapy?  Has anyone asked questions as to why or how this has happening to so many and given any clear answers.  No one seems to realise what psychological effect this has on someone you worry everytime something is arranged in advance on going out even for simple shopping trips you feel dirty and inadequate and lose faith in oneself.  Only one person (nurse at my medical centre)has asked me how I am coping and how I feel and understood when I felt bitter. Friends think I am coping with it and perhaps seem happy to them but when you wake up in the middle of the night and feel let down it is totally different. I know this does not help others but you are not alone out there and sadly nothing will be done to help us so we help each other by just telling and listening to others sufferers as the hospitals will not.

HAS anyone taken this further and had some answers???

Please see my previous posting discussing some various drugs we have found.  We are seeing an oncology surgeon and he suggested the Octreatide injections.  We just have to find a way to afford it.  You can also look at Gattex but it is very expensive.  I would check into these.  I would also try to find a medical hospital that is a teaching hospital, as they seem to have more to offer and are on top of what's out there.

I am becoming MORE debilitated by this after 7 years. Yay to no cancer but it seems the effects of having an inflamed intestinal system for that time is wearing on the system. I am in such pain for the morning bouts that I can't go anywhere and now when I do venture out I have HAD TO find facilities. I have barely made it up the stairs on a number of occasions after already having gone 4/5 times that day I have tried probiotics,food restriction,if I take immodium it seems to cause worse problems in days to   come? Vitamins are hard on the system also and I feel as if I am just tired from not getting proper nuitrients in years. I can't even do much exercise because if I bend a certain way I have gotten 7/8 partial blockages because of scar tissue?(at least that was one MDs guess)  This has compromised my life incredibly and I am wondering if anyone has had this condition longer and does it stay same or get worse.

I realize that as time goes on I keep thinking the pain, diahrrea and horribleness of this is new and I can find a FIX but its been 7 years and it started when I was getting radiation. It's getting a bit much and because I don't have any outward appearance people do not understand. My insides are fried. I read that 90% of our seritonin (happy enzyme) is made in the intestines, probably not for damaged ones though,so I have that to add to this fun. Can't find a cancer survivor support group in S.D.(no one shows up?) and I do not want to go to a cancer group and tell the poor people that are getting treated what the outcome might be.

Is anyone else in this situation? Any help and ideas are welcomed has anyone gotten disability?

Seems like there are more and more people with these issues. I sympathize with all of you.  I had my cancer and radiation in 1973.  In the early years there was no guidance at all.  I eventually took different food groups off my list in order to continue going to work without running to the restroom so often.  As time goes by it seems the diarrhea eposides do progress. In my case and maybe many of you reading this, have a fat malabsorption issue.  I can not eat any fats or if I do it would be 1 small spoonful.  I eat coconut oil because it is a medium chain fatty acid and digests differently and a small amount of real butter.  I basically eat rice; white and brown, baked or grilled chicken, cooked veggies, cooked buckwheat cereal, blueberries, bananas and am still experimenting after all these years.  I can not tolerate beans; fructose, caffeine, grain, a lot of healthy food with fiber and the list goes on.  I take saccromyeces boulardii for the probiotic -specific for diarrhea and other probiotics.  I am still working on how to manage the issues.  On really bad days I eat white rice.  I can not tolerate meds or even imodium without pain or feeling dopy.  If anyone has any other good ideas I am open to hearing them.  I could write a book on the things I have tried to get relief.  This summer I spent my savings to go to an alternative doctor.  I tried ozone colonics, ozone shots in the stomach, regular colonics, hyperbaric oxygen, magnetic therapy (1 time),  Vit C drips, many different supplements; - L-glutamine which made things worse for me, marine algae, aloe vera, we may be able to tolerate George's.  I tried a psychic healer 2 weeks ago.  I am open to trying many things as I said.  I pray at lot and will continue to look for healing or relief.  If I find it I will report back.  Good luck to all.

Joann

On Feb 18, 2013 6:59 PM Marshajp wrote:

I am becoming MORE debilitated by this after 7 years. Yay to no cancer but it seems the effects of having an inflamed intestinal system for that time is wearing on the system. I am in such pain for the morning bouts that I can't go anywhere and now when I do venture out I have HAD TO find facilities. I have barely made it up the stairs on a number of occasions after already having gone 4/5 times that day I have tried probiotics,food restriction,if I take immodium it seems to cause worse problems in days to   come? Vitamins are hard on the system also and I feel as if I am just tired from not getting proper nuitrients in years. I can't even do much exercise because if I bend a certain way I have gotten 7/8 partial blockages because of scar tissue?(at least that was one MDs guess)  This has compromised my life incredibly and I am wondering if anyone has had this condition longer and does it stay same or get worse.

I realize that as time goes on I keep thinking the pain, diahrrea and horribleness of this is new and I can find a FIX but its been 7 years and it started when I was getting radiation. It's getting a bit much and because I don't have any outward appearance people do not understand. My insides are fried. I read that 90% of our seritonin (happy enzyme) is made in the intestines, probably not for damaged ones though,so I have that to add to this fun. Can't find a cancer survivor support group in S.D.(no one shows up?) and I do not want to go to a cancer group and tell the poor people that are getting treated what the outcome might be.

Is anyone else in this situation? Any help and ideas are welcomed has anyone gotten disability?

Marsha, My name is Mary Lou, I have a B&B in Birchwood. I am Stanzie in Cancer Compass. I live in a town of 500 so there is no one with the disease here. I really could use a friend who understands. I do not know if this site will take a numbe r....1-715-354-3494  If that did not work you can find me underwww.cobblestonebb.com   Please do not use the 800 number use the other one. Or ask me for the real number once you call me on the 800 number it is free for the regular number. I will tell you all I know I have had the disease since 2005.Please RSVP me. Thanks, ML