Questions about caring for a patient with radiation enteritis

pjl_caregiver · October 2016

Hey everyone!

I'm curious to see if someone out there had any advice for me as a caregiver to my mother who is almost 1 year cancer-free (thank you God) after having stage 3C Endometrial Adenocarcinoma. She had chemo followed by pelvic radiation (28 external, 3 internal, 1 external from side/behind) which wrapped up on New Year's Eve 2015. Since, she has had a terrible time fighting radiation induced enderitis. She has been hospitalized several times for severe pain, some which started before she finished radiation treatment. The doctor said her colon was swollen solid like a pipe. She came back from that pretty well, but then I brought home the stomach flu in may (I'm a teacher who lives with my mother) and she went downhill again after catching it, back to square one. She began to come back from that, when, about two months ago, her GI ordered a colonoscopy. She was recovering well until she took the MoviPrep for it, which resulted in a partial blockage and a stay in the hospital. This experience has left her with extreme anxiety and depression, and has made it impossible for her to eat or drink. She is constantly dehydrated and can't manage food. After a routine appointment with her Gynecologist Oncologist, the doctor was concerned because she had lost almost 20 lbs in a month. The Gyn/Onc referred her to a nutritionist as she is extremely weak and appears to be getting worse. As per her nutritionist's instructions, she drank a protein shake (first time) last night, and an hour later, she began howling in pain because her stomach hurt, and she has been vomiting off and on over the last 24 hours since. Suffice it to say, she's terrified and is starting to have little faith in her doctors. I want to help her in any way I can by alleviating her anxiety, but the doctors have little to say on certain subjects. That's why I have come here, hoping somone here may be able to help.

I guess my questions are:

1.) Has anyone had problems with Radiation induced enteritis being agravated by a bowel prep? Her GI (not a cancer doctor) said it was impossible.

2.) My mother is somewhat lactose intolerant, but her nutritionist urged her to try drinking whey protein shakes. I made it with Lactaid milk, but I never thought about the whey containing lactose. Do you think this could have caused the gas and cramping that is hurting her so?

3.) I know everyone is different, but is there anything that helped anyone cope with their enteritis? My mother tries to lessen the pain by not eating as she equates food with another blockage and pain, in spite of the protestations of her doctor and our family.

I'm hoping perhaps someone with first-hand experience would have some advice to give on how I can best help my mother. Anything you can tell me about how to help her manage this side-effect would be welcome. The doctors say all she can do is bowel rest and wait it out, but I fear that if she doesn't turn a corner soon, she won't make it.

Thank you, and I wish everyone the best in their fights with this awful awful disease,

-P.

Kaleena · October 2016

PJL

Dear PJL:

I was diagnosed with Stage 3a Grade 2 Endometrial Adenocarcinoma back in 2005. I was treated with chemo and 3 brachytherapy. They decided not to do pelvic radiation as I was so scarred up from the endometriosis. I had a recurrence in 2010 - just had surgery - no treatment. Then in 20014 I began having the severe stomach pains as you describe. At first, I thought I had a stomach flu or food poisoning - it would hurt and the intensity got worse until I vomited and then it would finally ease up. Then it happened several more times that year. Same thing but each time I would have a small diarehea, abdominal pain however the vomiting got less or not at all. I lost about 20-30 pounds at that time over a course of 3 months. I had scans after an episode, but nothing ever showed. I called my gyne/onc PA and she didn't think it was anything. However, when I had my appointment I spoke with the doctor and he said if I had that again to go to ER and get a scan.

Then I had a blocked ureter (from the radiation) and had to get a ureter stent in. During this time, I had no episodes like before. But in October of 2015, I ended in the hospital with pancreatitis. I was in for 4 days and they couldn't determine what caused it. Then in December 2015 I had surgery to reimplant my ureter.

September 11 2016 of this year I had the severe stomach pains again. Same thing. October 12th - real bad. I should have gone to the hospital but my husband just had a Whipple surgery and was in hospital recovering and I didn't want both of us to be in different hospitals. Last weekend I had it again.

I seem to get it more whenever I eat protein. I was eating protein bars, etc. and it really didn't sit well with me. I also think it might be Gluten. Although my pancreatitis came back earlier this year (i just called to have my blood test which indicated I was having an episode). They check your Lipase levels for pancreatic problems.

I'm still looking for a GI - I went to several but didn't like them. They didn't look at my records clearly. and another wasn't with my insurance.

Whever I feel something coming on, you basically can't eat much - just a soft diet. Jello, broth, pudding,

The bad thing is trying to find a physician. Your PCP doesn't understand; the gyne/onc says it doesn't involve them, etc etc. Some of the GI doctors you get only look at the readings and not you as a person and because the tests come back normal they just send you on your way etc.

I hope your mother finds the relief she needs. I know how frustrating this can be. Sorry I couldn't be of more help.

My best to you and your mom,

Kathy

PS Does your mom get a lot of indigestion? (burping, etc.)

Lou Ann M · October 2016

PJL

I have not had enteritis but have had gastritis and one complete bowel blockage and a partial bowel blockage. So,just a few ideas. I certainly understand your mother's reluctance to eat or drink. Eating when you know it is going to hurt is difficult at best and it is hard to let go of that fear I would think that whey could cause problems since it is dairy. I have a dairy allergy that causes congestion so awhile back I looked for a nutritional supplement and I believe that I found one by Ensure. There is also a protein powder that can be mixed with water or juice that contains no milk at all. Called Vega. I bought it at Costco and mixed it with fruit and juice to make a smoothie. Soup was something else that I could manage if it was mild. I also found that watermelon and cantaloupe help with hydration. My first bowel blockage was caused by a tumor, the second, partrial, was caused by scar tissue. The advise that I was given was to stay active. I was very week at the time, so that was almost impossible to do.

sending hugs and prayers for you and your mom.

Lou Ann

Kvdyson · October 2016

PJL, I am so sorry to hear

PJL, I am so sorry to hear about what your mother is going through. Were the doctors concerned about her becoming even more dehydrated? Have they suggested any type of IV treatment until the pain subsides and she can at least drink again?

I've had external radiation but haven't experienced any side effects (knock on wood). It breaks my heart to hear what she is experiencing.

Best wishes to your mother for a quick and full recovery, Kim

Nellasing · October 2016

PJL my heart goes out to you and your mama

SO sorry to hear that!! Sounds so unfair to be clear and still having such terrible pain and problems and no one to really help. I do not have any experience with that but it's early for me and I am not doing radiation. I do see a naturopath and acupuncturist and they helped me with a gallbladder that is 1/3 full of sludge and immature stones which would get out and block the pancreatic duct- HORRIBLE PAIN!!! Just wondering if you had ever thought of going and seeing what the more natural side of medicine had to say? Perhaps they can help. They tend to spend a good deal of time listening and really caring about what is going on. I know I am very fortunate to have found the collaborative approach in my particular clinic.

Wishing you and your mama some answers and peace. Keep coming back for support- we're here for you- she is so blessed to have you helping her! (((HUGS)))

Lou Ann M · October 2016

Kaleena said:
PJL
Dear PJL:

I was diagnosed with Stage 3a Grade 2 Endometrial Adenocarcinoma back in 2005. I was treated with chemo and 3 brachytherapy. They decided not to do pelvic radiation as I was so scarred up from the endometriosis. I had a recurrence in 2010 - just had surgery - no treatment. Then in 20014 I began having the severe stomach pains as you describe. At first, I thought I had a stomach flu or food poisoning - it would hurt and the intensity got worse until I vomited and then it would finally ease up. Then it happened several more times that year. Same thing but each time I would have a small diarehea, abdominal pain however the vomiting got less or not at all. I lost about 20-30 pounds at that time over a course of 3 months. I had scans after an episode, but nothing ever showed. I called my gyne/onc PA and she didn't think it was anything. However, when I had my appointment I spoke with the doctor and he said if I had that again to go to ER and get a scan.

Then I had a blocked ureter (from the radiation) and had to get a ureter stent in. During this time, I had no episodes like before. But in October of 2015, I ended in the hospital with pancreatitis. I was in for 4 days and they couldn't determine what caused it. Then in December 2015 I had surgery to reimplant my ureter.

September 11 2016 of this year I had the severe stomach pains again. Same thing. October 12th - real bad. I should have gone to the hospital but my husband just had a Whipple surgery and was in hospital recovering and I didn't want both of us to be in different hospitals. Last weekend I had it again.

I seem to get it more whenever I eat protein. I was eating protein bars, etc. and it really didn't sit well with me. I also think it might be Gluten. Although my pancreatitis came back earlier this year (i just called to have my blood test which indicated I was having an episode). They check your Lipase levels for pancreatic problems.

I'm still looking for a GI - I went to several but didn't like them. They didn't look at my records clearly. and another wasn't with my insurance.

Whever I feel something coming on, you basically can't eat much - just a soft diet. Jello, broth, pudding,

The bad thing is trying to find a physician. Your PCP doesn't understand; the gyne/onc says it doesn't involve them, etc etc. Some of the GI doctors you get only look at the readings and not you as a person and because the tests come back normal they just send you on your way etc.

I hope your mother finds the relief she needs. I know how frustrating this can be. Sorry I couldn't be of more help.

My best to you and your mom,

Kathy

PS Does your mom get a lot of indigestion? (burping, etc.)

Kathy.

Good to see you back. How are both of you doing?

I also have had episodes of extreme abdominal pain several times. After I would vomit and I would vomit huge amounts, ithe pain would decrease. Then it didn't,go away and trips to the ER, Ct scan showed one complete bowel blockage caused by a tumor. 9 months later the same pain this time a partial,blockage that cleared on its own.

different topic.... Carnation Instant Breakfast does not have gluten and 15 grams of protein. Doesn't taste to bad . I does contain milk. I drink it and put up with the congestion it causes. My youngest daughter is gluten intolerant and has had many episodes of pain and vomiting because of that. It can sure do a Number on your digestive,system

Hugs and prayers, Lou Ann

Soup52 · October 2016

My problems haven't been as

My problems haven't been as sever as your moms after radiation. I'm so sorry for this! I can't say I feel 100% either. At different times I have constipation and stomach pains, too.

pjl_caregiver · October 2016

Kaleena said:
PJL
Dear PJL:

I was diagnosed with Stage 3a Grade 2 Endometrial Adenocarcinoma back in 2005. I was treated with chemo and 3 brachytherapy. They decided not to do pelvic radiation as I was so scarred up from the endometriosis. I had a recurrence in 2010 - just had surgery - no treatment. Then in 20014 I began having the severe stomach pains as you describe. At first, I thought I had a stomach flu or food poisoning - it would hurt and the intensity got worse until I vomited and then it would finally ease up. Then it happened several more times that year. Same thing but each time I would have a small diarehea, abdominal pain however the vomiting got less or not at all. I lost about 20-30 pounds at that time over a course of 3 months. I had scans after an episode, but nothing ever showed. I called my gyne/onc PA and she didn't think it was anything. However, when I had my appointment I spoke with the doctor and he said if I had that again to go to ER and get a scan.

Then I had a blocked ureter (from the radiation) and had to get a ureter stent in. During this time, I had no episodes like before. But in October of 2015, I ended in the hospital with pancreatitis. I was in for 4 days and they couldn't determine what caused it. Then in December 2015 I had surgery to reimplant my ureter.

September 11 2016 of this year I had the severe stomach pains again. Same thing. October 12th - real bad. I should have gone to the hospital but my husband just had a Whipple surgery and was in hospital recovering and I didn't want both of us to be in different hospitals. Last weekend I had it again.

I seem to get it more whenever I eat protein. I was eating protein bars, etc. and it really didn't sit well with me. I also think it might be Gluten. Although my pancreatitis came back earlier this year (i just called to have my blood test which indicated I was having an episode). They check your Lipase levels for pancreatic problems.

I'm still looking for a GI - I went to several but didn't like them. They didn't look at my records clearly. and another wasn't with my insurance.

Whever I feel something coming on, you basically can't eat much - just a soft diet. Jello, broth, pudding,

The bad thing is trying to find a physician. Your PCP doesn't understand; the gyne/onc says it doesn't involve them, etc etc. Some of the GI doctors you get only look at the readings and not you as a person and because the tests come back normal they just send you on your way etc.

I hope your mother finds the relief she needs. I know how frustrating this can be. Sorry I couldn't be of more help.

My best to you and your mom,

Kathy

PS Does your mom get a lot of indigestion? (burping, etc.)

Kathy,

Kathy,

Your stage/grade is very similar to what my mother had, and I am sorry you are going through many of the same things she is! Your reply totally helps - I can see some similarities between your story and what my mom goes though - it fills in some of the gaps and helps to form a bigger picture. And yes, my mother gets TONS of indigestion with burping. I cannot believe there has not been more done in the field of cancer research to find help and relief for survivors. As nasty as all of this is, I am grateful to hear another voice out there, and hear that we're not alone. And thank you for the kind thoughts!

Soup52 · October 2016

I hope you can find some help

I hope you can find some help:(

pjl_caregiver · October 2016

Lou Ann M said:
PJL
I have not had enteritis but have had gastritis and one complete bowel blockage and a partial bowel blockage. So,just a few ideas. I certainly understand your mother's reluctance to eat or drink. Eating when you know it is going to hurt is difficult at best and it is hard to let go of that fear I would think that whey could cause problems since it is dairy. I have a dairy allergy that causes congestion so awhile back I looked for a nutritional supplement and I believe that I found one by Ensure. There is also a protein powder that can be mixed with water or juice that contains no milk at all. Called Vega. I bought it at Costco and mixed it with fruit and juice to make a smoothie. Soup was something else that I could manage if it was mild. I also found that watermelon and cantaloupe help with hydration. My first bowel blockage was caused by a tumor, the second, partrial, was caused by scar tissue. The advise that I was given was to stay active. I was very week at the time, so that was almost impossible to do.

sending hugs and prayers for you and your mom.

Lou Ann

Lou Ann,

Lou Ann,

Thanks so much for this advice! All of what you have told me makes very good sense, and I will totally look into these things! The watermelon may just do the trick! I can't tell you how much better I feel hearing that my mom is not alone in all this - there is so little out there on the topic! I wish you all the best and thank you for your help and well wishes/prayers - I will return them!

pjl_caregiver · October 2016

Kvdyson said:
PJL, I am so sorry to hear
PJL, I am so sorry to hear about what your mother is going through. Were the doctors concerned about her becoming even more dehydrated? Have they suggested any type of IV treatment until the pain subsides and she can at least drink again?

I've had external radiation but haven't experienced any side effects (knock on wood). It breaks my heart to hear what she is experiencing.

Best wishes to your mother for a quick and full recovery, Kim

Kim,

Kim,

Yes - they were concerned that she wasn't taking enough water as well as nourishment. However, they never mentioned the IV treatment - my mom did receive IV hydration when she was admitted to the hospital. I will definitely look into this further. Perhaps it could work! I am so glad you are not going through this - no one should! Thanks for your help - and I too wish you the best as well!

MAbound · October 2016

So Glad

PJL I'm so glad you got some responses and support here. I saw your thread shortly after you posted it and was at a loss as to what I could offer. I'm feeling like such a coward for not responding then, but I've just started external radiation 4 days ago and what you and your mom are going through is something I'm still having a lot of anxiety about having happen to me. Somehow, just giving sympathy without experience of what you are going through seemed kind of unhelpful and I didn't want to say anything that would add to your anxiety. I'm usually not at such a loss for words, but I guess what you and your mom are going through touched on fears too close to home for me right now. I truely hope that this is just a rough patch she is having to deal with right now and that as time passes there will be healing that lets her live her life more comfortably. I'll be keeping you both in my thoughts and prayers.

Kathy....did they check your gallbladder when you had the pancreatitis? My husband has a pseudocyst from his bout with pancreatitis years ago and it turned out to be from gallstones blocking a duct. His GI doctor was the one who diagnosed it.

henhill · October 2016

Radiation gastroenteritis

I have had nothhing but trouble with this from the second day of treatment until now. This began a year ago in November when I started radiation therapy, and I have struggled with it all along. I was sick as a dog during treatment, not being able to eat much of anything. Next, after finishing, I got a case of esophagitis, and aspiration from stomach acid- I am quite sure I will spend the rest of my life on Prilosec. Next came intense pain in my left stomach which radiates to my hip and leg and sometimes up to my neck, this is still in the process of being dealt with, although, like many folks here, doctors are not familiar with it, and oncology says it doesn't concern them or they "don't see anything that could cause problems". If there is anything I wish I had turned down, internal radiation would be it. These are several studies done, with the first showing external vs brachy therapy as having statistical difference in aftereffects and quality of life. I know I saw somewhere that there was some question as to whether radiation was statistically relevant to survival, but I couldn't find that study. I would also suggest searching for a GI who specializes in cancer treatment in your area. I am sorry for your mother's struggle, this should be better addressed.

http://ascopubs.org/doi/full/10.1200/jco.2008.20.2424

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3871275/ http://www.tsim.org.tw/journal/jour17-1/07.PDF

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547560/

Kaleena · October 2016

Lou Ann M said:
Kathy.
Good to see you back. How are both of you doing?

I also have had episodes of extreme abdominal pain several times. After I would vomit and I would vomit huge amounts, ithe pain would decrease. Then it didn't,go away and trips to the ER, Ct scan showed one complete bowel blockage caused by a tumor. 9 months later the same pain this time a partial,blockage that cleared on its own.

different topic.... Carnation Instant Breakfast does not have gluten and 15 grams of protein. Doesn't taste to bad . I does contain milk. I drink it and put up with the congestion it causes. My youngest daughter is gluten intolerant and has had many episodes of pain and vomiting because of that. It can sure do a Number on your digestive,system

Hugs and prayers, Lou Ann

Lou Ann (((Hugs)))

HI LouAnn:

Sorry I haven't been on much. Thanks for the tips about the gluten. I have complained about this for the past couple of years. I know it builds up. I keep telling them I am gaining weight for no reason. (I feel it is just the back up). Then for no reason (or after I have a big episode) I lose the weight again. This last time I decided to forgo all gluten. My digestive track took about a week to heal itself and only today does it seem to be working almost up to par. I know that I will have to eat gluten if I am going to be tested for gluten. As soon as I find a GI doctor we will get to the bottom of this.

My husband came through his Whipple surgery very well. Although he is still in pain at one of the incision sites, and he thinks he should be totally ok by now, I think (and his doctors think) he is doing good. He had his checkup Friday and we got the results. They did find one microscopic lymph node out of 25. Either way whether they found some or not he was going to have to do another round of chemo. He must be feeling better because now he is complaining - lol.

Anyway, I will try to get on a bit more. It was nice speaking with you.

((((Hugs)))

Kathy

Kaleena · October 2016

pjl_caregiver said:
Kathy,
Kathy,

Your stage/grade is very similar to what my mother had, and I am sorry you are going through many of the same things she is! Your reply totally helps - I can see some similarities between your story and what my mom goes though - it fills in some of the gaps and helps to form a bigger picture. And yes, my mother gets TONS of indigestion with burping. I cannot believe there has not been more done in the field of cancer research to find help and relief for survivors. As nasty as all of this is, I am grateful to hear another voice out there, and hear that we're not alone. And thank you for the kind thoughts!

advice

PJL:

If I ever get to the bottom of this, I will let you know. As soon as I find a GI doctor (which should be soon) I will let you know what the plan is and if there is anyway I can help your mom too.

Kathy

Questions about caring for a patient with radiation enteritis

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