Radiation proctitis

Cibbig--

Welcome here, however, I'm sorry that you have a reason to be here and are facing some serious issues post-treatment.  Have you or your doctors considered HBOT (hyperbaric oxygen therapy)?  Some people do find it helpful in relieving the misery of radiation proctitis.  I would be willing to give it a try before consenting to APR with colostomy.  Please look at the websites I've pasted in below.  There are several other websites that can explain this type of therapy.  

http://www.oakleafmedical.com/hv/2012_sp/sp2012_hbot.php

http://www.integrativeoncology-essentials.com/2013/10/hyperbaric-oxygen-reduces-chronic-radiation-side-effects-proctitis-cystitis-necrosis/

I do not know all of the symptoms you are having, but I was treated in 2008 and had major diarrhea for several months post-treatment.  Eventually, with trial and error in my diet and meds such as Imodium, I was able to get it under control.  You are only 4 months out of treatment, so perhaps giving yourself just a little more time to see if anything can ease your symptoms would help you avoid surgery and permanent colostomy.

I wish you all the best and hope you'll keep us posted.

Martha

Cibbig said:

Thanks Martha ..I've read

Thanks Martha ..I've read through the articles and will ask my Dr about it. What I have is severe pain which is even worse  when passing stools and I'm either constipated or have diarehh...there's sores everywhere , bleeding, it's just awful. I'm feeling a bit confused by the Drs...ex radiation oncologist is saying this happened because of all the surgeries...dr said he's never seen this...I don't feel they are working togeather or I don't know looking out for my best well being. Everyone was great during this ordeal but now I feel kinda abandoned. I wanted to see if there where others like me and like I've read online since everyone here seems to be throwing their hands up.

ill keep ya updated. Thx again.

If one of the doctors you have on your team is not a gastroenterologist, perhaps it might be a good idea to see a GI doctor to get another opinion.  It sounds to me like you may have radiation enteritis, which is definitely a serious condition.  I was treated with chemo and radiation in 2008 for my anal cancer and in January 2013, had a small intestinal obstruction that put me in the hospital.  It was so very painful.  I have had several other episodes of obstruction, all of which have cleared on their own, fortunately.  Last August when I saw my medical oncologist, he had heard enough and sent me to a gastroenterologist, who told me that radiation enteritis is a very serious condition.  However, he did not diagnose me with that.  It is thought that I have adhesions, probably caused by the radiation treatment, that causes my obstructions.  I have had to carefully watch my diet and no longer eat raw fruits or veggies because of the high fiber, and beef, which does not digest quickly and stays in the guts longer than most foods.  I don't know if you've ever had an obstruction, but if your intestines have been damaged like mine, it's possible.  

http://www.healthline.com/health/radiation-enteritis#Overview1

Please look at all of the topics in the anal cancer group on this site.  I posted a good article not long ago about radiation proctitis, which I think you will find interesting.  The title of the thread is:

Pelvic Radiation Disease Article from Oncology Nurse Advisor

I always get quite upset when I read someone post that their doctors are not working together to resolve their ongoing issues.  It upsets me even more to read that ANY doctor would dismiss the thought that radiation causes such damage to our intestinal tracts.  I believe adhesions are common after radiation treatment to the guts, but if they remain small and cause no blockage, may never be discovered.  Even when I presented to the emergency room in great pain before I was admitted to the hospital for obstruction, my CT scan did not clearly show exactly where the obstruction was.   You got a double whammy if you had surgery, which can also cause adhesions to form.

A gastroenterologist may be able to help you, maybe not, but I think it's worth a try.  Diet, I have found, has a huge impact on how our intestines behave.  I am not only dealing with the risk of future blockages, but have recently been diagnosed with Stage 2 Chronic Kidney Disease.  It is quite complicated for me now, as some of the foods that are good for one condition are bad for the other.  It seems the only thing safe for me to do anymore is drink lots of water! 

Take care and please keep us posted.

Martha

Cibbig said:

Wow...very interesting...I

Wow...very interesting...I have several types of Drs because I also have several other health issues. Too many to name actually. But the wavelike cramping in the enteritis article caught my eye and I have all the other things. But it's like I took laxatives but I didn't most days. since 2am I have been screaming crying either on the toilet or passed out. And i have a feeling it's because ....I ate a hamburger and coleslaw yesterday...wanted variety besides chicken fish potatoes. It's like there is no balance. Ughhhhh. I'm definAtely going to be on the phone with all these Drs tom am. I read almost all the posts on here last night while stuck on the potty. Thanks so much for your care and response and I'll let you know what they say....

I'm glad you are gathering some helpful information.  I think most doctors are genuinely interested in relieving the suffering of their patients and perhaps this is why your doctor(s) are recommending a colostomy.  However, I think some doctors do not give as much consideration as they should to quality of life issues before recommending life-changing surgeries or procedures and possible alternatives to try beforehand.  I have a good friend who is a physician AND a cancer survivor.  He had cancer when he was a teenager.  Several years later, when he was a newlywed and he and his wife were expecting their first child, he became very ill with appendicitis.  His doctors recommended a colostomy, but he refused and said that he was willing to take his chances without the surgery.  That was back in the 70's and he is still here, practicing medicine and helping others who may be in similar situations.  He and I have discussed all of the potential issues with such rushes to "cure" the patient or rid them of their pain, especially after I have had numerous intestinal blockages, and agree that as hard as it is to be in pain, it is best to consider any and all options before consenting to surgery that is not required because of an emergency situation.

Martha

hi,  l was treated for stage four anal cancer in 2003.  It was about one year agao when I started bleeding and incontince.   I was refered to a GI doctor who said I had proctitis ( not the same as radiation proctitis).    I was also having problems walking ( foot drop) I saw 6 neoroligist all who said it was impossable that the radiation i received 13 years ago had anything to do with my  symptoms.  Finally,  after seeing another specialist I was correctly diagnosed with radiation pelvic disase.  After doing some reading i discovering  besised foot drop and incontinance one of the sypmptoms is radiation proctitics whitch should not be treated the same as proctitis.   I mentioned this to my oncoligyst and he agreeed with the diagnosis of PRD and sent me to the Hynerbaric chamber treatment center.   I have done 30 trearments and I no longer have any bleeding and the incontinece is much much better.