Radiation Enteritis/Small Bowel Obstruction

Posted by Kris-Hag @krishag, Jul 6, 2011

I have frequent small bowel obstructions despite adhering to a Mayo Clinic recommended low fiber diet. I suffer from chronic radiation enteritis as a result of the radiation treatments I received 6 years ago for a desmoid tumor (fibromatosis or sarcoma) that was removed from near my lower spine. I was also left with weakness and slight paralysis of my right leg. The cancer is gone but I suffer from the side-effects of the treatments. I can live with the paralysis but the digestive system issues are a cause for a lot of frustration and discouragement. Is there anyone else that has these same issues? How do you deal with this?

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I believe I have this also! I had vaginal cancer in 1999 and ever since I have had nothing but trouble! The chronic radiation enteritis is a result of this. I wish I knew how to deal with this myself! I have read all I can find on the internet.

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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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