Anyone have radiation enteritis, inflammation of your small intestine?

Posted by skmm @skmm, Jun 21, 2023

Has anyone else ended up with chronic radiation enteritis from pancreatic tumor radiation. I'm starving to death. Weight is plummeting, blood pressure is low. I can eat and have a g-tube but I can't absorb enough nutrients to stay hydrated. Not enough is getting through the small intestine. If I put too much in my stomach, I just throw everything up.

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@krishag @ozgreengirl

I cannot tell you how GRATEFUL I am to stumble on Mayoclinic and see others who are in the same boat as me! @krishag, I am 100% feeling everything you are minus the slight paralysis. Here is what I've done, but still struggling:
-Food Intolerance Test to take out foods that cause inflammation (I used 5 Strands. They're the cheapest and cover the most number of foods)
-Vitamin and Mineral Deficiency Test (Also 5 Strands) + Supplements that I am deficient in.
-Increase water intake
-Increase movement (I have a stationary bike I get on each morning, plus walking at work)
-Daily Digestive Enzymes before food
-Pre Biotics and Pro Biotics daily
-MiraLax to help soften stool
-Natural Juicing to help with fiber and/or detoxing

PLEASE let me know if any of this helps- I am still struggling with everything, but doing all I can to heal the gut.
It definitely is a process. Thank you for your support and input! I need as much as I can get!

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Omg finally someone other myself knows how frustrating it is & severely painful. I feel for you as I have same condition. Regular obstructions with hospital stays to unblock. Not much quality of life is it? At present after my last stay, had to have a nasal gastric tube inserted to relieve obstruction as meds didn't budge it. It worked! & I cried for 2 days from relief. But I don't understand why ?? I follow eating instructions by the book, although since last bout I been just about living a liquid as I'm terrified how close I came to being opened up to remove obstruction. Ask your specialist for endoscopy to look at where it's blocking. I am getting this done in near future & then maybe can take this section out( not that I want major surgery). But if it works, hopefully I will get relief???So ask the question. Regards Donna Australia

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@dor64

Omg finally someone other myself knows how frustrating it is & severely painful. I feel for you as I have same condition. Regular obstructions with hospital stays to unblock. Not much quality of life is it? At present after my last stay, had to have a nasal gastric tube inserted to relieve obstruction as meds didn't budge it. It worked! & I cried for 2 days from relief. But I don't understand why ?? I follow eating instructions by the book, although since last bout I been just about living a liquid as I'm terrified how close I came to being opened up to remove obstruction. Ask your specialist for endoscopy to look at where it's blocking. I am getting this done in near future & then maybe can take this section out( not that I want major surgery). But if it works, hopefully I will get relief???So ask the question. Regards Donna Australia

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Yes! @dor64, it is extremely painful! I am so sorry you're going through this as well, but the relief must be heaven!
My pain (usually up all night with nausea and vomiting) will last until I go to the ER and get nausea and pain meds.
I have attempted many times to do an NG Tube, but to no avail as my nostrils are too tiny.
Monitored rest and IV fluids are literally my only option.
Surgery is an absolute NO GO because I've had too many abdominal surgeries and my team at UCSF are completely against opening me up again (even laparoscopically).
A friend of mine (this weekend actually) told me her son has the same issues (Radiation Enteritis) and told me to see the Digestive Disease Center. The Specialists there have a better scope for what is happening and can identify other issues surrounding Radiation Enteritis.
I haven't reached out yet- need a Referral.

Donna- have you tried any of the above suggestions I put in previous post? All have been a big help for me!

Knowing that this blockage doesn't allow other food (or nutrients) to pass, I find myself completely mal-nourished. The supplements, at least, have helped.

Let me know and good luck!
Lori

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@shortylori83

Yes! @dor64, it is extremely painful! I am so sorry you're going through this as well, but the relief must be heaven!
My pain (usually up all night with nausea and vomiting) will last until I go to the ER and get nausea and pain meds.
I have attempted many times to do an NG Tube, but to no avail as my nostrils are too tiny.
Monitored rest and IV fluids are literally my only option.
Surgery is an absolute NO GO because I've had too many abdominal surgeries and my team at UCSF are completely against opening me up again (even laparoscopically).
A friend of mine (this weekend actually) told me her son has the same issues (Radiation Enteritis) and told me to see the Digestive Disease Center. The Specialists there have a better scope for what is happening and can identify other issues surrounding Radiation Enteritis.
I haven't reached out yet- need a Referral.

Donna- have you tried any of the above suggestions I put in previous post? All have been a big help for me!

Knowing that this blockage doesn't allow other food (or nutrients) to pass, I find myself completely mal-nourished. The supplements, at least, have helped.

Let me know and good luck!
Lori

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Hi thanks for your thoughts. Not sure what will happen once they do arthroscopic exploring as if they can then do an op to remove this part of the bowel, it will make more adhesions. But maybe it will give me a few years of a life? Here's hoping

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I had radiation treatments to remove a second tumor that came back after Whipple procedure for pancreatic cancer. The radiation caused severe enteritis. I have a g-tube for feeding although I can still eat by mouth. I can only manage liquids or very soft foods like baby food or I just through it all up. My Oncologist and GI doctor sent me home to basically die as I cannot get hydrated enough to function let alone go through any type of medical procedures. It's been 6 weeks since my final radiation treatment, 3 of those in the hospital. I'm slowly dying from malnutrition right now although I know my chances of surviving pancreatic cancer are minimal at best. Just gasping for any possible remedies to get strong enough to try and battle the cancer?

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I have chronic digestive issues since radiation last year for endometrial cancer. Bowel obstructions, enteritis, severe abdominal pain and diarrhea. It is life altering. I am currently getting hyperbaric oxygen treatments and I think it is helping.

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Yes I have also suffer same fate. But I had radiation 30yrs ago & have suffered everyday since. My bowel constantly has blockages from strictures. Also chronic diarrhea. I have been put on a very strict diet...a lot of liquids including Sustagen. I have trouble eating a lot of solids & minced beef & minced chicken on occasion is my only meats. Can't digest normal meat cuts & vegetables. I weigh 40.5kgs & my weight fluctuates to 42kgs. Once I get a blockage , I vomit undigested foods & weight drops again. No win unfortunately. I don't want a tube again so I just try to live as I can but no quality. Guessing it's my only alternative. Ask for a Dietician to suggest same diet as myself...which is minimal. Have Vitamen supplements & drink more fluids. You can live without the tube but you must be strict with your eating solids. The Dietician will help you on this path. All the very best to you. Donna from Queensland Australia

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@dor64

Yes I have also suffer same fate. But I had radiation 30yrs ago & have suffered everyday since. My bowel constantly has blockages from strictures. Also chronic diarrhea. I have been put on a very strict diet...a lot of liquids including Sustagen. I have trouble eating a lot of solids & minced beef & minced chicken on occasion is my only meats. Can't digest normal meat cuts & vegetables. I weigh 40.5kgs & my weight fluctuates to 42kgs. Once I get a blockage , I vomit undigested foods & weight drops again. No win unfortunately. I don't want a tube again so I just try to live as I can but no quality. Guessing it's my only alternative. Ask for a Dietician to suggest same diet as myself...which is minimal. Have Vitamen supplements & drink more fluids. You can live without the tube but you must be strict with your eating solids. The Dietician will help you on this path. All the very best to you. Donna from Queensland Australia

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Thanks for your reply. I am only able to take a prescribed formula and liquids right now. I have tried soft foods, doesn't seem to matter. I take in more than my body can absorb and when it gets to much it just comes out. My stomach is in constant turmoil. I am down to 80lbs. Thank you again Sue in Southern California.

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<p>My husband has been diagnosed with this condition most likely due to the 5 treatment radiation he received. He has received two CT scans that show the inflammation but no bowel obstruction thankfully<br />Has anyone else experienced this after prostate cancer treatment?<br />If so, was there any suggestions, OTC or prescription medications that were surprised that helped?<br />He can sometimes be in severe pain and the meds he was prescribed - anti-cramping and antacid<br />If anyone else has gone thru this and has any suggestions that would be appreciated</p>

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@mimilo

<p>My husband has been diagnosed with this condition most likely due to the 5 treatment radiation he received. He has received two CT scans that show the inflammation but no bowel obstruction thankfully<br />Has anyone else experienced this after prostate cancer treatment?<br />If so, was there any suggestions, OTC or prescription medications that were surprised that helped?<br />He can sometimes be in severe pain and the meds he was prescribed - anti-cramping and antacid<br />If anyone else has gone thru this and has any suggestions that would be appreciated</p>

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Hi @mimilo, it so hard to deal with side effects of treatment that are necessary for fighting cancer. Radiation enteritis is inflammation of the intestines that occurs after radiation therapy. Here''s more information from Mayo Clinic about radiation enteritis:
- Radiation enteritis https://www.mayoclinic.org/diseases-conditions/radiation-enteritis/symptoms-causes/syc-20355409

I'm glad to hear that your husband has no blockage. Have the severe symptoms started to subside?

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