Radiation proctitis

Cibbig

After 2 surgeries and 37 radiations which I finished on August 17th...after about a month I developed radiation proctitis. They have tried everything and are now scheduling me for a colostomy. The pain is absolutely unbearable. Just wondering if there is anyone out there like me. 

mp327

Cibbig--
Welcome here,

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

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.

mp327

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.

Cibbig

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

eihtak

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.

Cibbig......

Hi and welcome, yet as said.....I am sorry for your need to be here.  Please please do consider further opinions, checking, and time before resorting to ostomy surgery.  We (and our doctors) want us to recover so bad that I think sometimes we tend to rush our thinking that we should be better sooner than our bodies are ready to be. 

I was treated with chemo/radiation in 2011 for Stage 3b anal cancer. Due to the size, placement, pain I also had colostomy surgery prior to treatment.  It was supposed to be temporary as depending how it is done can be reversed, but due to the radiation damage that ensued it has remained permanently.  While I have adjusted and managed completely, and am active swimming, doing gentle yoga, school, and chasing around grandkids.....it is my belief that my lack of patience and knowledge at the time had a huge effect on my decision to consent to this surgery.  I was not part of this board, or barely even on line for that matter, and so anxious to be out of pain, that I did not do my research.  The outcome may very well have been the same had I......but I'll always wonder.

If in fact, that is the result for you, know that life is totally manageable with such and there are others here to offer support along those lines as well.

Your doctors do need to be on the same page with each other and you.....remember, no matter who is paying the bill, (insurance, state, private pay, or other) they work FOR you and you have every right to expect the best of your employees!

I do hope you get the answers you deserve and continue to move forward in health....you will be in my thoughts and prayers for positive changes soon.

katheryn

Cibbig

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....

Cibbig

eihtak said:

Cibbig......

Hi and welcome, yet as said.....I am sorry for your need to be here.  Please please do consider further opinions, checking, and time before resorting to ostomy surgery.  We (and our doctors) want us to recover so bad that I think sometimes we tend to rush our thinking that we should be better sooner than our bodies are ready to be. 

I was treated with chemo/radiation in 2011 for Stage 3b anal cancer. Due to the size, placement, pain I also had colostomy surgery prior to treatment.  It was supposed to be temporary as depending how it is done can be reversed, but due to the radiation damage that ensued it has remained permanently.  While I have adjusted and managed completely, and am active swimming, doing gentle yoga, school, and chasing around grandkids.....it is my belief that my lack of patience and knowledge at the time had a huge effect on my decision to consent to this surgery.  I was not part of this board, or barely even on line for that matter, and so anxious to be out of pain, that I did not do my research.  The outcome may very well have been the same had I......but I'll always wonder.

If in fact, that is the result for you, know that life is totally manageable with such and there are others here to offer support along those lines as well.

Your doctors do need to be on the same page with each other and you.....remember, no matter who is paying the bill, (insurance, state, private pay, or other) they work FOR you and you have every right to expect the best of your employees!

I do hope you get the answers you deserve and continue to move forward in health....you will be in my thoughts and prayers for positive changes soon.

katheryn

Thanks Katheryn....although

Thanks Katheryn....although the pain is unbearable...I can't help but wonder if it's too soon...I'm gonna get more opinions etc. look into that HBOT thing. Thanks for your response....and I'm sure you'll hear from me again.

mp327

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....

Cibbig

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

Lawchick618

Cibbig said:

Thanks Katheryn....although

Thanks Katheryn....although the pain is unbearable...I can't help but wonder if it's too soon...I'm gonna get more opinions etc. look into that HBOT thing. Thanks for your response....and I'm sure you'll hear from me again.

Cibbig

i am out of treatment 2 years and still have anal pain.  I did the HBOT and it did absolutely nothing to help.  Nonetheless, maybe it can help you.  best wishes 

jesschicklinsky

radiation proctitis

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.  

Kim Gaia

jesschicklinsky said:

radiation proctitis

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.  

Very intersting information

Very intersting information about radiation pelvic disease - and its delayed onset many years later. Thank you for sharing.

kim