radiation proctitis

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radiation proctitis

by jankenb on Mon Nov 08, 2010 03:54 PM

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Hello

I had radiation, brachy and external beam, for endometrial cancer, in 2009, and now have radiation proctitis. I have undergone 60 hyperbaric treatments, and am still bleeding all the time. The treatments helped the radiation enteritis symptoms.

Anyone else out there with this, and any suggestions for treatments that worked? Also what sort of diet decreased bleeding

Thanks

RE: radiation proctitis

by travelhopefully on Thu Nov 11, 2010 07:08 PM

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Hi, radiation proctitis is no fun at all. I developed it about 8 years after radiation for high rectal cancer.  If you look at the best summaries for present treatment (the restricted by subscription site called "UpToDate" -get a friend who has access to good hospital library site to access it for you) you will see that the number of well researched and evaluated treatment options is not great Hyperbaric is one of them, various formaldehyde installations another. . I think this is the best oveall source but my personal experience follows.  I was very taken with the randomized trial of Vitamin A which seemed to show benefit (not by a flakey practitioner - this is a researcher with a Univesity of Chicago affiliation) but it did not seem to do a lot for me- but this might be because it works best in patients who are somewhat Vitamin A depleted (can happen if you had to get small bowel removed too).  However one encouraging and interesting thing is that a good proportion of the people in the control group did show resolution of bleeding over a six month period anyway (true in several trials of radiation proctitis) so I think you should not get too down about this- however depressing it can get.  Checking that you have as varied a diet as possible (remember that bleeding can be exacerbated by some vitamin deficiencies which may occur with intestinal radiation like Vit K) is sensible to do - personally I am not very gung ho on multivitamin supplements and prefer getting my vitamins in a varied diet.  Next step is to try and deal with issues like stool hardness (a hard stool is very painful with proctitis) so check you can calibrate stool softtness with a dosable laxative or fiber (I use citracell tabs which supposedly have lower tendency to produce additional "air" but the evidence is not very strong). Bananas are a good soluble fiber source with some nutritional value too.  I also use vaseline or generic petroleum gelly around my bottom hole both when wiping and after wiping to try and keep the area from getting too dry . I don't recommend using steroid or antiseptic creams as I think there is a danger of sensitizing the skin . When things got very bad ( cos I have a certain amount of episodic stool incontinence too) I did try adding layers of paper in my underwear - I guess rather like a menstrual pad but cotton works best.   When the soreness is really bad I do two things -one have a not too hot bath tub and read in it (seems to calm things down) - I did try Sitz baths but a regular one is more enjoyable and secondly take some (ie one)  acetaminophone with codeine 30 mg (tylenol #3 type dosage) which for me really helps the stinging pain calm down. As acetaminophen with codeine is a recognized approach to decreasing intestinal hurry as well as controlling pain it has two benefits - you need a prescription for it but any decent doctor will have no problem prescribing this for someone with this background - you are not at all likely to get addicted or anything (I probably need to take 2-3 per week).  I then go to bed. Interestingly there is some suggestion that codeine can be made a bit more effective if you take a loperamide with it (loperamide is the generic anti-diarrhoea agent) and as I need to take that for my short gut anyway this can help (NB Costco sells loperamide incredibly cheap!).  If I was more organized I would try to have smaller more frequent meals but I have not been so organized to get this done (but a smaller earlier evening meal may mean you get less pressure to go to the toilet at night and so a better nights sleep. 

In terms of getting a provider I have a gastro-enterologist at the university who is an angel in human form but she spends a lot of time listening and encouraging and does not do things just because one thing or other is in vogue - she really discusses the options, evidence and possible drawbacks.  There are not a lot of providers I know with experience in the management of radiation proctitis and strangely enough I was correctly diagnosed for the first time  when out of the USA but the person who diagnosed me recommended combined steroid with lidocaine  preperation H type gel things which I think are largely a waste of time and not supported by trials. 

Look I hope this is some help and I hope you have someone you can talk with (I have the most marvellous wife anyone could have as well as my gastroenterologist).  Take care and all the best.

RE: radiation proctitis

by jankenb on Mon Dec 06, 2010 07:22 PM

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Hi there Travelhopefully

Not sure where you  are, would love to find out about your gastroenterologist.

I have tried a new treatment, being a physician myself I have subscription to uptodate

I have read about sucralfate enemas and contacted my gastroenterologist to prescribe them.

I have been on then for almost 3 weeks and the bleeding is extremely minimal now, and it seems to be working..

It is 20 mls of a 10percent solution of sucralfate, and it has to be specially formulated at a compounding pharmacy. The enemas are twice a day and studies have shown that most people take about 8 weeks of treatment to heal the bleeding areas.(I am at week 3).

It is only the bleeding it helps, and I "work with" the enteritis part, with the low dose narcotics 3-4 times a week for the colic pain.

perhaps you can ask your gastro for these enemas.

jankenb

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