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Anyone have radiation enteritis, inflammation of your small intestine?
Cancer: Managing Symptoms | Last Active: Apr 26 11:54am | Replies (20)Comment receiving replies
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
Replies to "Omg finally someone other myself knows how frustrating it is & severely painful. I feel for..."
I have had a stricture in my terminal ileum for many years, so frequently had bowel obstructions, so requiring and ng tube, but have avoided surgery so far. Their is very good advice from clinic in the UK, but I haven't found a clinic or physician, gastroenterologist with that extensive experience in the US. Two years ago I put myself on a liquid diet, now live on smoothies and cream soups mostly. Much less obstruction but still have diarrhea if I eat to much fat or have lactose or gluten. Can you recommend a specialist? I live in North Carolina, but I am willing to travel for care
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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