Radiation Enteritis

Trust me, you're not alone!

Had rad/chemo when I was 16.  Thought I escaped any post treatment side effects, but it caught up with me about 16 years ago (I'm now 51).

 In the early years I had extreme, roll on floor, cramping.  Admitted to hospital several times for not being able to retain food or liquids.  Dropped from around 155 lbs to 135 lbs (5'11'' male).

Diarrhea, frequent nausea, vomiting, gas, pain, and low energy.  It definitely effects social life.  Need to be careful where I go, only in areas with bathroom handy.  Have lost desire to eat, too many potential complications.

Have had probably every medical test under the stars.  Seen experts on both coasts.

If I take heavy doses of Lomotil (20 tabs/day) I can keep the diarrhea somewhat in check, but at the risk of nausea and blockage.  So I only do that when I'm going to a social function or event that requires no bathroom visitation.  And I can risk pain the following day.

Despite all that, life goes on.  The past year I've avoided any hospitalization, and both nausea and vomiting have decreased.  Although diarrhea and low weight continue.

My wife is very understanding, although she thinks I should do more to fix things.  To be honest,  I don't think there's much more I can do. 

Hang in there!

I can empathize with you.  I had cancer 39 years ago, and the radiation I underwent has had effects on me ever since.  From about 5 years after my treatment until now, I have suffered with chronic diarrhea.  I have sought treatment a couple of times over the years, with no real help resulting.  Each time I tried to get help I was put through a battery of very unpleasant tests; upper GI, lower GI.  The prep for the test put me in bad shape, and so the actual test was hard to withstand.  I am worried that if I had to go through these tests again my intestines/bowel might be damaged because it is in such bad shape.  I try to watch what I eat, but usually end up having to use loperamide to help control the problem.   I'm sure there are many other people out there with a similar experience and problem.  

Now after all that whining, let me just say...I'm so thankful to be alive.  God has blessed me with almost 40 years of cancer free life.  I was only 5 years old when I was diagnosed, and I surely did not expect to live this long.