Gastroenteritis after radiation.

Options

I know this is a generic term, but did anyone else here experience long-term gastroenteritis after radiation?  I had a serious problem during the treatment and have had issues on and off for the whole year and a half since.  At first it was loose bowels but afterwards it became strictures and inflammation for months at a time. I have been seeing a specialist who keeps giving me all sorts of pills, but none of them have done the trick.  It is extremely painful at times, and it usually keeps me awake.  Anyone out here have any  experience with this?  I'm at the end of my rope and thinking of quitting my job I am so uncomfortable

Comments

  • derMaus
    derMaus Member Posts: 558 Member
    Options
    Long Term Effects

    I'm so sorry to hear about this. I'm halfway through radiation myself so can't speak to the long-term effects, but I do think taking massive amounts of probiotics has helped me thus far. Is that something that you've already tried? I assume so but thought I would ask....

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,386 Member
    Options
    I'm sorry to hear this,

    I'm sorry to hear this, henhill.  A year and a half - I bet you are tired of it.  You might want to tell the specialist the pill after pill - throw anything at it - approach isn't working for you anymore.  

    derMaus - while I have been taking proiotics before this all started and continue to this day - can you share with everyone what you mean by "taking massive amounts" means?  

  • derMaus
    derMaus Member Posts: 558 Member
    Options
    I take a 25 billion capsule

    I take a 25 billion capsule twice daily. I try for those w/8 different cultures but sometimes only get 4, depending on my latest order. And I certainly agree about the 'pill after pill' approach NOT being very scientific, or even humane! 

  • Soup52
    Soup52 Member Posts: 908 Member
    Options
    While I don't have what is

    While I don't have what is termed gastroenteritis, I do appear to have long term bowel problems which occurred during and since treatment. Mine pretty much is constipation. I have had colonoscopy which showed no polops, but I had an incomplete regular test followed by a virtual colonoscopy a couple weeks later. I have consulted with a gastroenterologist and for me what seems to help is probiotics, fiber supplements and miralax. Mine isn't perfect results all the time, but is somewhat better. Also I drink a lot of water and try to get a decent amount of activity. Yes, my husband has some of the same problems as he has had radiation also.im so sorry you are having this. Has your oncologist given you the supplements or have you seen a gastroenterologist?

  • henhill
    henhill Member Posts: 123
    Options
    Thanks for the replies

    I have been seeing a gastroenterologist, one who specializes in cancer related issues.  She has been very responsive, but nothing has worked.  I have been taking probiotics  and drinking Kefir, but still experiencing debilitating pain when food  passes through the area where there is damage.  I have gotten some control but it really goes out the window when it starts to hurt!

     

  • Rebecca75
    Rebecca75 Member Posts: 5
    Options
    I had it too -- bad -- for a

    I had it too -- bad -- for a while, but it eventually went away.  Are they thinking things will settle down?  Have you modified your diet?  Do you take Prilosec?  I feel your pain.  The radiation is very difficult.

  • Gardena
    Gardena Member Posts: 102
    Options
    Henhill

    I'm sorry to hear you're going thru this. I had 4 months of cdiff after radiation and ended up in icu w shut down kidneys. Bowels are no joke! I was advised to drink lactose free kefhir, as lactose can cause bowel inflammation even if you're not lactose intolerant. I also took probiotics. Ended up changing the type I took many times until I found relief. One of the probiotics is called Floristor. Its called a probiotic but is actually a yeast that good bacteria love and gobble up, and thus multiply, helping your digestive tract normalize and eliminate inflammation. If I hadn't found the combo of the lactose free kefhir and two probiotics the next step was a fecal transplant. My onco was talking to my insurance company to get approval but turned out my gut/bowels healed wo it. Have you talked to yout gastro about a fecal transplant? It might help get your bowels in working order. Btw, I still drink the kefhir and take the probiotics daily a year later. Cant imagine stopping and enduring anymore potential bowel issues! Best of luck.

  • henhill
    henhill Member Posts: 123
    edited July 2017 #9
    Options
    Gardena

    That is exactly what I take, and I know that under normal circumstances I would be fine with the Florastor and kefir.  It seems like the strong antibiotics I took in Feb and June were just too much.  I am now taking another drug that slows digestion and it is working.... ever.....so.......slowly......grrrrrrrrrrrrr!  I have had strictures since radiation, so that is probably a fine mix of troubles.

  • derMaus
    derMaus Member Posts: 558 Member
    Options
    FloraStor

    Thanks for posting about FloraStor. I'd not heard of it before and may add that to my regimen. ConsumerLab has a chart matching different strands of probiotis to individual symptoms but I hadn't noticed that one when I was researching earlier. Appreciate the info. 

  • cheerful
    cheerful Member Posts: 261 Member
    Options

    I want to respond to your post regarding gastroenteritis.  I wanted to mention that I have had acid reflux for the past 30 years. Presently, and for the past several years, I have been taking Omeprazole 40 milligrams in the morning and Zantac (150 milligrams) in the evening. This really helps me.  All the years before this, I took Zantac on an as needed basis.  I hope this helps you. Good luck with it.  It is not pleasant to have this and you really have to watch what you eat. 

    Cheerful

    a/k/a Jane

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited August 2017 #12
    Options
    B12

    I just want to throw out there that long-term ant-acid therapy interferes with B12 absorption (you need stomach acid to get B12 from food) big time. Do they check your levels periodically Cheerful? Are you taking a supplement or getting B12 shots? 

  • christine8822
    christine8822 Member Posts: 40 Member
    Options
    something to try

    Hi, I had almost the exact same symptoms you describe: after chemo/radiation treatment i also had issues for nearly a year afterward and crampy pain where radiation was. nothing i did fixed it. then one day i had a bad sinus infection and the doctor put me on Augmentin 825 twice a day for 10 days. After that, all intestinal issues disappeared. I don't know why; maybe a pocket of adhesion or scar tissue had some little infection, or the lining of the intestine wasn't healed right or whatever. but it worked. I do drink kefir a little bit every day and take basic multivitamin, 1 baby aspirin, and 1 2000-unit vitamin d daily, that's it. good luck. ps: i had a routine colonoscopy this year and everything was completely normal. 

    so don't give up! good luck and keep healing. 

     

  • henhill
    henhill Member Posts: 123
    edited August 2017 #14
    Options
    Thanks for these responses.

    I am still trying to figure things out by trying different treatments as I go along.  I have always had good luck with probiotics, but it is a bust right now... nothing.  I also went on a round of Rifimixan, an antibiotic strictly for the gut, with no luck, either.  I tried all kinds of gut- based pills from a gastro doc, and I gotta say, some of them felt like they were followed by a jackhammer, worse than awful!  Right now, I have chosen a gentle approach of metamucil, and for the pain, Aleve or Tylenol.  Sometimes I get a nice run out of the Aleve and feel great. Nothing that I would conventionally know about has helped at all,  But each suggestion you guys have made have been good and I am trying all of them one by one.

    My cancer is active again, and I will be starting Avastin + 4 Taxol.  I am hoping that this "change of environment" might help

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Options
    Lipase checked?

    Henhill:

    I started having real bad indigestion.  It would come and go.   One morning I started to feel it in my shoulder and being concerned because my father had heart disease I asked my husband to take me to the ER to get it checked out.   Good news, nothing was wrong with my heart.  However, my lipase was over 1500.   I had a pancreatitis attack.   I was hopsitalized for 4 days.   Then I started getting that feeling again.  So I called my PCP so I could get a blood test.   Once again (although only in the 400s) I had another attack.  I wasn't hospitalized but I just went on a very soft diet.   This happened several more times.   I ended up having my gallbladder out in March (even though it looked fine) and so far have been good.

    I just had my lipase checked because of this other abdominal/pelvic pain because I wanted to make sure it wasn't also pancreatitis.   Which this time it wasn't.   I didn't get the normal pains of pancreatitis - just the indigestion feeling.   I believe I had it many times before and just didn't know it.

    Wishing you well.

    Kathy

  • Pennielane
    Pennielane Member Posts: 8
    Options
    Magnesium

    i had several months of terrible bowel issues after my treatments, and was frustrated by the disinterest on the part of my doctors. i went to a gastroenterologist who prescribed a pill that cost over $2000 (covered by insurance) and gave me some generic diagnosis. Fortunately, the prep for the colonoscopy was what did the trick, and I now think I was reacting to the high amounts of vitamin B I was taking for my neuropathy. although my symptoms were v loose stools, I have suffered from IBS and constipation all my life, and have a lot of tricks for that. everything causes constipation for me -- chemo, and now Megace which I just started taking. I take 250-500 mg of magnesium daily when I have an issue. Depending on the severity of the symptoms, I may also use a natural drink called Alo, which is gentle and tastes good, although it's a little chunky so some don't like it. I prefer it to miralax etc. Using those I can usually stay ahead of constipation. Intestinal distress is awful, good luck..