small bowel damage from radiation (radiation enteritis)

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RE: small bowel damage from radiation (radiation enteritis)

by beejaypea on Wed Aug 08, 2012 02:33 AM

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My husband has had pretty much the same story for 6 years.  He had radiation during colon cancer treatment and now suffers from radiation enteritis.  He has malabsorption and has lost so much weight.  He's been on the tincture of opium for several years now. He has developed a rectal fistula from the bouts of diarrhea.  We live in the Pacific Northwest and are trying to find a doctor that specializes in this disease or at least malabsorption.  We are having a hard time finding help.  The best option seems to be the Mayo Clinic.  Have you looked into finding a doctor that can help?  It is very frustrating to try to find help.  None of our regular doctors seem to know what to do.  I've been online looking and looking.  Any suggestions would be appriciated!

RE: small bowel damage from radiation (radiation enteritis)

by AnnieGamm on Wed Aug 08, 2012 10:25 PM

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I have seen 5 colorectal surgeons, including one at the Mayo Clinic in Phoenix and one at MD Anderson in Houston.  I saw one in Maryland who suggested that having a colostomy might give me a better quality of life, because I would at least not have to go through the pain of diarrhea with its frequent trips to the toilet and bleeding anus.  When I mentioned that to the Mayo and MD Anderson surgeons, they said having a colostomy was a last resort. Dr. Chang at MDA put me in touch with a nurse whogave me a special diet that required me to use fiber (Benefiber or Citrucel) in increasing amounts in my diet.  However, even though she guaranteed it would fix things, it didn't, so I am ready to try the colostomy.  My gastroenterologist at MDA, Dr. Marta Davila, understands that I am ready for a change now, and she said she would support my decision to have a colostomy.  After more than 3 and a half years, I am ready to schedule the surgery if my insurance company will pay for it.  I know it won't fix all the problems and may create new once, but I am tired of always being in pain and not knowing when I will have 2 seconds to get to a toilet before having an explosion.  I have been working through all of this and am very tired at work most of the time because I get so little sleep.  Your husband might want to investigate having a colostomy.  I know several people who have one, and they say it's not so bad and an improvement over the frequent diarrhea they had before the surgery.

Good luck,

Annie

  

RE: small bowel damage from radiation (radiation enteritis)

by beejaypea on Wed Aug 08, 2012 10:48 PM

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Thank you for sharing your story!  Your symptoms and life challenges are very simiilar to my husband's.  He gets very little sleep and wears "Depends" all the time, as he cannot control his bowels.  He goes from extreme diarrhea and then 180 degrees to blockage symptoms.  We have investigated a colostomy with our surgeon and discussed the pros and cons.  Our surgeon operated on my husband almost 3 years ago to remove about 2' of small bowel so he has seen the damage first hand.  He is very reluctant to do surgery on him again.  My husband is 6'2" and weighs 120#.  He is severely deficient in MG, Vit D, B12, etc. and just generally in fragile shape.  He's 63.  Our surgeon says that the only way to do this would be to remove everything from the descending colon down, and of course it would be irreversible.  The surgery would be major and a long recovery time.  So, we are hesitant to go that way right now.  I'm hoping to find a gastro doc that specializes in malabsorption that can help.  Maybe the diet route will help out like you tried.  I do have a friend with Crohns that had a colostomy 19 years ago and he says it saved his life in every way.  Did you find the May Clinic helpful at all? We are closer to that facility than MDA.

Thank you again and best of luck to you, too!

BJ

RE: small bowel damage from radiation (radiation enteritis)

by AnnieGamm on Thu Aug 09, 2012 02:06 PM

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BJ,

Based on what one of the doctors told me, I think maybe your husband's blockages could be caused by the tincture of opium.  I was only on it for about 6 months, because it worked too well, so I kept getting blockages.  He put me on Lomotil, which worked for a while, but I had to use it sparingly.  I still would get blockages but less often.  Now I only use Immodium (the liquid flavored kind for children works best, and you can take the adult dose).  I only use it when the diarrhea gets bad, which is every few days, but at least I don't get blockages.  What I get mostly is fecal impactions, which cause abdominal pain and bloating.  I have learned through experience that going to the emergency room for that provides no relief, because no one here knows what to do about it.  The MDA dietician nurse told me at least they should have given me something to clear out the fecal impaction, but that has never happened.  You can drink a sodium nitrate solution available at any pharmacy, but it gives you bad diarrhea, like being cleansed for a colonoscopy (with all our digestive problems, who needs that?).  Anyway, I have learned from experience that the blockages are worse than the diarrhea, but neither is a good option.  I have been told not to eat anything raw, nothing with peelings or seeds, no nuts, nothing that causes gas, very little meat, nothing fried, nothing with a lot of sugar, no pickles or olives, no dairy products and nothing that is tough to digest like steak.  That doesn't leave much, and I don't have much will power, which is why I haven't lost as much weight as your husband.  Every time I eat something I shouldn't, I pay for it big time.  Eventually, I decide it's no longer worth the agony, so I take another food off the list of what I will allow myself to eat.  So far, I haven't removed chocolate, which is very bad for me.  If I only eat a few small bites at a time, I can usually tolerate it.  Maybe your husband could add Ensure to his diet to help him get his weight up.  They always give me that when I'm in the hospital.  I take 2 prescription pills of potassium every day to help replenish what I lose through frequent bowel movements.

The doctor I saw at the Mayo clinic in Phoenix was Dr. David Etzioni, and the surgeon at MDA knew him.  He didn't think it was time for me to get a colostomy either and wanted me to see a gastroenterologist at Mayo that he knew.  However, I already have a good gastroenterologist I trust at MDA, so I decided not to try a new one.  Also, all the tests on my bowels were done at MDA, so they know my condition best.  I have lesions all over the small bowels and chronic radiation enteritis.  I also have radiation proctitis, which causes rectal spasms and makes me constantly have to go to the toilet or face the consequences, even though I (like your husband) wear a pad all the time.  I think there is something to be said for going where your tests were done, although I know MDA would send my records to my local doctors (if I trusted them, but I don't). 

The general surgeon who operated on me to remove a foot of my dead small intestines when I had an obstructed bowel told me that he would recommend removing my rectum and sphincter if I were to have a colostomy.  Otherwise, he said, I would probably have leakage and still have the spasms from proctitis.  Although I trust his ability as a surgeon, he said he believes I should only get a colorectal surgeon to do the colostomy, since they do more of them.

I don't know if any of this information is helpful or new, but it sounds like your husband is ready to see the best medical experts in digestive disorders.  From what I have heard and read, the Mayo Clinic in Minnesota is the best in that area, so I would encourage him to go.  He has nothing to lose.

If you want the name and phone number of the nurse at MDA who specializes in diet management for patients with radiation enteritis, let me know.  I will be happy to share it with you.

Annie

 

RE: small bowel damage from radiation (radiation enteritis)

by merrythoughts on Mon Aug 13, 2012 07:05 PM

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Sorry that I have taken so long to answer.  I control everything through my diet although my damage may not be so bad as others. I can only eat vegetables grown below ground anything above ground does not digest easily and causes blockages.  Salads are completetly forbidden.  Fruit with no skins or pips and sometimes better stewed.  Only eat white bread nothing with fibre in.  Can eat things that is not healthy crisps, butter, cream amd any meat.  Fish without bones.  Can be very boring and hard when you eat out. Sometimes I feel bloated and if I get any pain I then stop eating for 24 to 48 hours to enable the bowls to clear.  Although this works most of the time with me I still need the urgency for the toilet everyday and when out always prepared by knowing where the next loo is.  In Britain if I am shopping Wetherspoons and MacDonalds are always reliable.  When I go to the theatre I always sit next to the door.  Hope this helps.

RE: small bowel damage from radiation (radiation enteritis)

by Shannonc13 on Fri Aug 24, 2012 04:22 PM

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I started having all my gut problems about a month ago. My radiation was completed Feb. 2011. Have you found any help? I can't imagine living this way. I already have lymphodema, neuropathy, and plexopathy all from surgery, radiation, and chemo. I have been losing my ability to walk and live in constant pain and now this. In two a week period I was in the hospital three times and I can't eat anything. I'm malnourished and dehydrated. I hope and pray you have found releif. This is no way to live. It's not even surviving. I hope to hear from you Shannon

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RE: small bowel damage from radiation (radiation enteritis)

by Mandy1234 on Fri Oct 26, 2012 01:42 AM

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Hi J C : I had cancer with radiation treatments , I'm having a lot of problems.  Bowel was damaged and they don't think it will ever get better. I told Dr. it was affecting my Mental health , as it is so annoying , hard to work or go out for long ! I think they've got to find a way to help us , this is crazy . It's very frustrating . B.B.

RE: small bowel damage from radiation (radiation enteritis)

by Mandy1234 on Fri Oct 26, 2012 01:45 AM

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I feel the same way , shannon, but we must go on. Maybe we can try hard to get this situation fixed with the Dr. 's. mine was damaged by radiation , too. I also have other health problems and I'm discouraged, it's life changing for sure ! B.B.

RE: small bowel damage from radiation (radiation enteritis)

by beejaypea on Fri Oct 26, 2012 03:22 AM

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Hello All,

We are seeing a new dr in our local area that is our version of the Mayo Clinic, hoping for help with the small bowel radiation damage my husband has.  This Dr's bio says "patients with challenging diagnostics and therapeutic situations encouraged".  Hoping to find help managing the symptoms, as we know there is no cure.  I'll report back when we know more.

BJ

 

RE: small bowel damage from radiation (radiation enteritis)

by Mandy1234 on Fri Oct 26, 2012 07:49 PM

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Thank you , we need more done . lol

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