radiation enteritis

[Guest guest]

Cliff and ,

I believe that the radiation oncologists have to say that their

treatments didn't create the side effects because they are

all afraid of lawsuits. I have a very good relationship with my

doctors but in the beginning they didn't know if my questions

and their answers could end up in a courtroom or not. Now

they know me well enough (Dx was in 2001) to know that

I simply have a need to understand what my body is doing

and if I can remedy any of the issues of the day.

I went to look up radiation enteritis and it sounds like one of

the things that happened to me too. The explanation in

www.webmd.com , wrote that it would resolve within two to

three weeks after treatment ended. But Cliff, you are still

having trouble with it? Well, I guess WebMD doesn't have

all the answers either.

I'll ask about the Welchol when I see the colorectal surgeon.

Anything I can do to give my liver a break has got to be

a good thing.

Take care,

Louise

Yes, I resemble that remark!

I would have diarrhea no matter what I ate if I didn't take

medication for it.

I'm a stage 1 survivor that had 28 days radiation/xeloda. I did get

radiation enteritis which caused a small bowel obstruction. I had

to have surgery again to cut out the damaged loop of small bowel.

I have not noticed any particular food that causes my problems to be

worse (now anyway). Previously I had problems with tomato sauces,

picante, etc... This is probably because they're really acidy. I

still have issues if I drink more than a beer or two. ;-) (I don't

do that anyway so no big deal.)

I take Welchol twice a day. Without it I would be tied to the

bathroom. The medicine absorbs fatty acids and is primarily for

cholesterol reduction. It has the effect of slowing down the

digestive system. I had to have an upper GI with small bowel follow

through to check for any obstructions before they would prescribe

the drug.

The most frustrating thing with this was that every doctor would

look at me and say, I don't know. Good grief! I wanted to scream.

Even when the doctor prescribed welchol, he still shrugged and

didn't diagnose anything.

Anyway, I'm sad to hear that you know of the problem. I feel

relieved that I'm not the only one though. This problem has been

the biggest pain of all since it won't go away.

Good luck and miracles happen,

Cliff H.

>

> Hi everyone -

>

> I'm back after a long hiatus to ask a question to those folks who

> have completed their surgeries and therapies. First a little

> background info, my husband was diagnosed with stage 3 colorectal

> cancer. He had the tumor removed, a temperary ileostomy, 7 chemo

> rounds (5fu and leukavorin sp), concurrent radiation therapy (28

> days), an ileostomy take down, and a C.diff. infection. He's had

> great (clear) blood work and scans for the past year and a half.

>

> Anyway, he still needs to take imodium (or tincture of opium) with

> every meal or else he would be living on the toilet. He also has

to

> watch what he eats or he'll pay for it. Also, he can't gain his

> weight back. We have a friend who went through a similar

treatment

> course 12 years ago and he has similar ongoing side effects. I

think

> it is radiation enteritis as the symptoms and the culprit foods

> coincide with their side effects, but the drs (both my husband's

and

> our friend's) say that nothing that they did would cause this long

> term side effect.

>

> Does anyone have experience with this long term side effect? How

do

> you deal with it? Has it been diagnosed?

>

> Any information would be greatly appreciated.

>

> Thanks

>

[Guest guest]

Cliff and ,

I believe that the radiation oncologists have to say that their

treatments didn't create the side effects because they are

all afraid of lawsuits. I have a very good relationship with my

doctors but in the beginning they didn't know if my questions

and their answers could end up in a courtroom or not. Now

they know me well enough (Dx was in 2001) to know that

I simply have a need to understand what my body is doing

and if I can remedy any of the issues of the day.

I went to look up radiation enteritis and it sounds like one of

the things that happened to me too. The explanation in

www.webmd.com , wrote that it would resolve within two to

three weeks after treatment ended. But Cliff, you are still

having trouble with it? Well, I guess WebMD doesn't have

all the answers either.

I'll ask about the Welchol when I see the colorectal surgeon.

Anything I can do to give my liver a break has got to be

a good thing.

Take care,

Louise

Yes, I resemble that remark!

I would have diarrhea no matter what I ate if I didn't take

medication for it.

I'm a stage 1 survivor that had 28 days radiation/xeloda. I did get

radiation enteritis which caused a small bowel obstruction. I had

to have surgery again to cut out the damaged loop of small bowel.

I have not noticed any particular food that causes my problems to be

worse (now anyway). Previously I had problems with tomato sauces,

picante, etc... This is probably because they're really acidy. I

still have issues if I drink more than a beer or two. ;-) (I don't

do that anyway so no big deal.)

I take Welchol twice a day. Without it I would be tied to the

bathroom. The medicine absorbs fatty acids and is primarily for

cholesterol reduction. It has the effect of slowing down the

digestive system. I had to have an upper GI with small bowel follow

through to check for any obstructions before they would prescribe

the drug.

The most frustrating thing with this was that every doctor would

look at me and say, I don't know. Good grief! I wanted to scream.

Even when the doctor prescribed welchol, he still shrugged and

didn't diagnose anything.

Anyway, I'm sad to hear that you know of the problem. I feel

relieved that I'm not the only one though. This problem has been

the biggest pain of all since it won't go away.

Good luck and miracles happen,

Cliff H.

>

> Hi everyone -

>

> I'm back after a long hiatus to ask a question to those folks who

> have completed their surgeries and therapies. First a little

> background info, my husband was diagnosed with stage 3 colorectal

> cancer. He had the tumor removed, a temperary ileostomy, 7 chemo

> rounds (5fu and leukavorin sp), concurrent radiation therapy (28

> days), an ileostomy take down, and a C.diff. infection. He's had

> great (clear) blood work and scans for the past year and a half.

>

> Anyway, he still needs to take imodium (or tincture of opium) with

> every meal or else he would be living on the toilet. He also has

to

> watch what he eats or he'll pay for it. Also, he can't gain his

> weight back. We have a friend who went through a similar

treatment

> course 12 years ago and he has similar ongoing side effects. I

think

> it is radiation enteritis as the symptoms and the culprit foods

> coincide with their side effects, but the drs (both my husband's

and

> our friend's) say that nothing that they did would cause this long

> term side effect.

>

> Does anyone have experience with this long term side effect? How

do

> you deal with it? Has it been diagnosed?

>

> Any information would be greatly appreciated.

>

> Thanks

>

[Guest guest]

I had radiation during the Sept. 2002. Surgery for the small bowel

obstruction, 3/03. Yes, I still have the overactive colon. It was

strange, but I didn't have any problems with diarrhea until after my

obstruction surgery. Prior to the obstruction which started having

symptoms around Christmas, 2002, I didn't have any problems

whatsoever. It was really wierd to go into surgery with normal

bowel habits (well, as normal as possible without a rectum anymore

;-) ) and come out with persistant diarrhea. I don't know if it

was a surgery thing or a radiation thing. The onset coincided with

the surgery.

The surgeon was at a loss. The gastroenterologist was

the " Ida know " guy. He obviously knew because he knew just what to

do about it. I dumped him since he wouldn't talk to me. My new GI

doc didn't have any answers either but at least he'd talk to me. I

suppose I should go see the radiation onc to ask him about it. I

still think that when they took out the 6 inches of small bowel that

something was messed up in the process. I don't think it was the

surgeons fault. I just think that " s... happens " , literally

(snicker).

I did have diarrhea during and shortly after radiation. I wish they

had told me to take immodium daily instead of waiting for the

attack. They just assume you know that you can do that. I didn't

know so I spent the whole 6 weeks having the roller coaster from

constipation to diarrhea and then dosing myself again back to

constipation.

I have found one silver lining to this cloud. When I have a

colonoscopy prep, I don't need a stool softener. I just don't take

my medication and out it comes... :-)

Anyway, I'm just ranting a bit. I'm just fine with the medicine and

it's a small price to pay for being free from the toilet. However,

I can't tolerate cheap toilet paper anymore. I have to go for the

good stuff. :-)

Miracles happen!

Cliff H.

> >

> > Hi everyone -

> >

> > I'm back after a long hiatus to ask a question to those folks

who

> > have completed their surgeries and therapies. First a little

> > background info, my husband was diagnosed with stage 3

colorectal

> > cancer. He had the tumor removed, a temperary ileostomy, 7

chemo

> > rounds (5fu and leukavorin sp), concurrent radiation therapy (28

> > days), an ileostomy take down, and a C.diff. infection. He's

had

> > great (clear) blood work and scans for the past year and a half.

> >

> > Anyway, he still needs to take imodium (or tincture of opium)

with

> > every meal or else he would be living on the toilet. He also

has

> to

> > watch what he eats or he'll pay for it. Also, he can't gain his

> > weight back. We have a friend who went through a similar

> treatment

> > course 12 years ago and he has similar ongoing side effects. I

> think

> > it is radiation enteritis as the symptoms and the culprit foods

> > coincide with their side effects, but the drs (both my husband's

> and

> > our friend's) say that nothing that they did would cause this

long

> > term side effect.

> >

> > Does anyone have experience with this long term side effect?

How

> do

> > you deal with it? Has it been diagnosed?

> >

> > Any information would be greatly appreciated.

> >

> > Thanks

> >

[Guest guest]

Wow - thanks for all of the great feedback and support! With all

that medical science can do, it's amazing how much there is left to

learn. I'll check into some of the meds you suggested to see if they

might work for my husband.

Radiation enteritis can be either a short term (weeks) or long term

(years to permanent)complication and is a documented side effect of

radiation therapy in the abdominal area. So, I don't think fear of

law suits is an issue. From what I understand, docs aren't allowed

to diagnose something that isn't scientically established. If you

are lucky, you'll find an experience doc who will effectively treat

the symptoms even if they cannot render a diagnosis. Plus many

different causes can result in the same symptoms when dealing with

the intestines.

Fortunately, my husband is able to treat the symptoms with 1-2

imodium tablets before every meal. (He used to take tincture of

opium, but he travels a lot for work and didn't want to end up in

some third world prison.) When he knows he's going to eat

something " bad " , he also takes a phazyme (OTC med for gas). His doc

said that he can take these drugs for the rest of his life without

ill effects. He's hoping that with time he'll be able to reduce the

amount he takes.

Cliff, your case is very interesting in that it developed after

surgery and not after radiation therapy. In my web searches, I read

that the small intestine is not a long uniform tube. Rather, it has

different zones for absorping different nutrients. If I remember

correctly, it stated that folks with the small intestine closest to

the ilieum (sp) removed tend to have the most issues because that is

where the fats are absorbed. I wonder if this is causing your

problem and perhaps it explains why Welchol is helping you. I'll let

you know if I find the original source.

Thanks again and hang in there!