Still dealing with Radiation Proctitis

Cookie911

 

 

 

 

I have not posted on the forum since October.  I am glad to read that many are doing so well.  The reason I am writing is to me my radiation proctitis seems a little different.  I found out I had anal cancer August 2011 that was a squamous cell that was the size if a lime, but it was stage 2.  Long story short I had the same therapy with radiation and same chemo treatments as many of you have described.   I had very severe third degree burns in the middle of my radiation and had to take. 3 week break.  I thought that once I was through with all the  treatments that I would see my medial oncologist on a regular basis for blood work. About five months out I started with the radiation proctitis with severe diaherra, bleeding and severe pain in my lower stomach.  Since I finished my treatment I have battled hemoglobin and low iron.  I have had four iron infusions the last 11/14/14 and when I went back my count had dropped instead of going up and the same thing with iron.  Because I was still having diaherra and bleeding so bad my colon rectal oncologist gave me four treatments of the argon gas from January 2014 to July 2014.  I saw a little improvement but not enough to go through being put to sleep again.  After the fourth treatment I did begin to see less diaherra and bleeding and my hemoglobin got to 12.8. The first time it past the minimum of the range. It was in the ten range but mainly low 11's along with my iron being low. I am almost 3 1/2 years post treatment and still dealing with diaherra and bleeding. I saw my colon/rectal oncologist yesterday and he is puzzled why I still have diaherra so I go back in the hospital next Friday to start another round of the argon gas treatment. He has told me the radiation has damaged part of my small intestines which in turn creates an absortion rate problem.   Some days I don't have diaherra but it is not uncommon to go out to dinner ten minutes from my house and barely make it home to the bathroom in time.  Has anyone had this argon gas procedure or dealt with diaherra this long?  Also I have a third oncologist (Gyn) because my tumer was at the edge of my vagina.  I have the narrowing of the vagina and the GYN said no sex and besides that I am at high risk for a fistula to happen which would mean by bowels would come through my vagina. I never expected to be dealing with these side effects this far out.  I am thankful that a PET scan last November showed no cancer, so I am very thankful for that.  I must say only those of us you have been through this really understand. So for the long post but I am thankful this forum is here. Has anyone experienced side effects that have lasted this long?  Cookie911

mp327

Cookie

I am sorry to read of all the issues you are currently dealing with.  Radiation proctitis is a condition that can occur shortly after treatment ends to not until months, even years after treatment.  I am almost 6 1/2 years post-treatment and I still have bouts of diarrhea.  I'm glad you mentioned a possible issue with absorption.  Malabsorption syndrome is a condition that can occur post-radiation to the intestinal tract where the intestines are unable to absorb nutrients and fats from food.  In recent months, I have wondered several times if I suffer from this, as it seems that after I eat greasy or fatty foods, I have a flare-up.  I also notice that when this happens my stools are lighter in cooler, have a different odor and are the consistency and greasiness similar to peanut butter.  Sorry to be so graphic, but that's the best way to describe this.  I do not, however, experience bleeding with these episodes.  I must ask if you've had a colonoscopy post-treatment to rule out any bleeding higher up. 

Argon gas treatment can be effective for some people for radiation proctitis, but not for some. 

I'm glad your last PET scan showed no recurrence and I hope your doctors can find a way to give you some relief from your current bowel issues.  Please keep us posted.

Martha

Cookie911

mp327 said:

Cookie

I am sorry to read of all the issues you are currently dealing with.  Radiation proctitis is a condition that can occur shortly after treatment ends to not until months, even years after treatment.  I am almost 6 1/2 years post-treatment and I still have bouts of diarrhea.  I'm glad you mentioned a possible issue with absorption.  Malabsorption syndrome is a condition that can occur post-radiation to the intestinal tract where the intestines are unable to absorb nutrients and fats from food.  In recent months, I have wondered several times if I suffer from this, as it seems that after I eat greasy or fatty foods, I have a flare-up.  I also notice that when this happens my stools are lighter in cooler, have a different odor and are the consistency and greasiness similar to peanut butter.  Sorry to be so graphic, but that's the best way to describe this.  I do not, however, experience bleeding with these episodes.  I must ask if you've had a colonoscopy post-treatment to rule out any bleeding higher up. 

Argon gas treatment can be effective for some people for radiation proctitis, but not for some. 

I'm glad your last PET scan showed no recurrence and I hope your doctors can find a way to give you some relief from your current bowel issues.  Please keep us posted.

Martha

Radiation Proctitis

Thank you Martha for your reply.  I have not found anyone who has dealt with these side effects as long as I have.  The side effects are frequently enough, like weekly, that I am dealing with it all the time.  But with all that I thank God no signs of cancer. The absorption rate has been a big issue for me.  Because of the lower intestines has damage it impacts the natural producing of minerals and nutrients like b-12, iron, etc. it has also impacted all my mediations that the dosages have to be increased to an amount that my body absorbs the right dosage.

Thanks again and this is a grat support group.

 

Earleen

Phoebesnow

Cookie911 said:

Radiation Proctitis

Thank you Martha for your reply.  I have not found anyone who has dealt with these side effects as long as I have.  The side effects are frequently enough, like weekly, that I am dealing with it all the time.  But with all that I thank God no signs of cancer. The absorption rate has been a big issue for me.  Because of the lower intestines has damage it impacts the natural producing of minerals and nutrients like b-12, iron, etc. it has also impacted all my mediations that the dosages have to be increased to an amount that my body absorbs the right dosage.

Thanks again and this is a grat support group.

 

Earleen

Proctisis

I am four years out.  I had bleeding, malabsorption, and constipation for 3 years.  At four years out, I can finally say I'm 3/4 the person I used to be.  Most days I am feeling improvements, but there are still fatigue issues.every one is different, I envy the people who bounced back a few weeks or months after tx.  Hold on, you will get better albeit slowly.

Cookie911

Phoebesnow said:

Proctisis

I am four years out.  I had bleeding, malabsorption, and constipation for 3 years.  At four years out, I can finally say I'm 3/4 the person I used to be.  Most days I am feeling improvements, but there are still fatigue issues.every one is different, I envy the people who bounced back a few weeks or months after tx.  Hold on, you will get better albeit slowly.

Radiation proctitis

Thank you for the words of encouragement. I have say like you I thought after the treatments I would bounce back. I really have problem with fatigue also.  Well I'm blessed to be cancer free, but do get frustrated when I go out and wonder what if I can't make it to the bathroom in time.  Thanks again and I will try to be more patient because I do have a lot to be thankful for 

pializ

Cookie911 said:

Radiation proctitis

Thank you for the words of encouragement. I have say like you I thought after the treatments I would bounce back. I really have problem with fatigue also.  Well I'm blessed to be cancer free, but do get frustrated when I go out and wonder what if I can't make it to the bathroom in time.  Thanks again and I will try to be more patient because I do have a lot to be thankful for 

Radiation proctitis

have you explored hypobasic oxygen therapy (HBOT)? I understand it can be used with good effect although not much research to evidence it yet

 

Lorikat

I found out I had Anal cancer

I found out I had Anal cancer in July 2011 and finished tx in October of 2011.  returned home (800 miles away) to end up in hospital with burns on bottom front and back, needed two blood transfusions and was in isolation for about a week.  stage 2 invasive, with a timer just a little smaller than a tennis ball.  fast forward 3 plus years:

radiation proctitus.  A few times a month I cramp and bleed and sometimes don't make the bathroom.  Maybe it will go away, maybe not.  I posted this so you will know you are not alone, not to complain because all in all I feel very lucky.  Sure I wish it would go away.  I wish I could eat salads and drink milk again....  I also wish I was a size nine again, LOL!!  Doubt either will happen!  

The radiologist at MD Anderson gave me a prescription for a suppository that really helps...  Will post what it is when I remember!!

take care!

 

qv62

cookie911

I am not familiar with the argon gas procedure I am only 7 months out and still having about 6 bms a day, I can't leave home without my pads, wipes and extra underwear, as well as the vaginal stenosis which I've been dealing with from both surgery and radiation. I wish you all the best, please keep us posted. This is the place to find answers, I hope you get the ones you are looking for.

LaCh

qv62 said:

cookie911

I am not familiar with the argon gas procedure I am only 7 months out and still having about 6 bms a day, I can't leave home without my pads, wipes and extra underwear, as well as the vaginal stenosis which I've been dealing with from both surgery and radiation. I wish you all the best, please keep us posted. This is the place to find answers, I hope you get the ones you are looking for.

argon gas

I was treated for bleeding with argon gas about a year or so post tx. It helped a lot but I can't eat nuts, no matter how much I chew them.  Without fail, I'll end up bleeding for a week afterwards and in a good deal of pain.  Each time I swear I'll never eat nuts again, and I never do, not till the next time, when I do. Last time was particularly bloody and painful, so maybe I've learned my lesson this time; we'll see. But I digress. Argon gas did diminish the bleeding I had post tx by quite a lot, but be aware, it's a little different from an analscope; the argon gas makes you feel nauseaus and dizzy for a few hours after the proceedure. You can request that whoever performs it tries to remove as much gas as possible after the proceedure is completed.  Aside from that, it was no big deal.

Ouch_Ouch_Ouch

qv62 said:

cookie911

I am not familiar with the argon gas procedure I am only 7 months out and still having about 6 bms a day, I can't leave home without my pads, wipes and extra underwear, as well as the vaginal stenosis which I've been dealing with from both surgery and radiation. I wish you all the best, please keep us posted. This is the place to find answers, I hope you get the ones you are looking for.

Empathy abounds.

I am in qv62's boat after 7 months post treatment. I swear that much more comes out than goes in! My pocketbook also doubles as a diaper bag. I have at least 2+ distressing incontinences per week. However, to be fair to the treatment, I've had irritable bowel syndrome (IBS) since I was a kid, so I was already pre-disposed to loose stools, just not so darned much all the time. I have bleeding and pass an awful lot of mucous (inflammation, maybe). I tried a low-residue diet - that has helped reduce the quantity of stools and firm them up a little. I frequently get lower back pain and lower abdominal pain when a stool is building up. The oncologist thinks it's from the loss of elasticity of intestinal support tissues. I also have vaginal stenosis frm radiation.

So, I cannot directly address your questions, but I can offer you all my empathy and hope that you and your team find a way to diminsh the problems.

Ouch_Ouch_Ouch

mp327 said:

Cookie

I am sorry to read of all the issues you are currently dealing with.  Radiation proctitis is a condition that can occur shortly after treatment ends to not until months, even years after treatment.  I am almost 6 1/2 years post-treatment and I still have bouts of diarrhea.  I'm glad you mentioned a possible issue with absorption.  Malabsorption syndrome is a condition that can occur post-radiation to the intestinal tract where the intestines are unable to absorb nutrients and fats from food.  In recent months, I have wondered several times if I suffer from this, as it seems that after I eat greasy or fatty foods, I have a flare-up.  I also notice that when this happens my stools are lighter in cooler, have a different odor and are the consistency and greasiness similar to peanut butter.  Sorry to be so graphic, but that's the best way to describe this.  I do not, however, experience bleeding with these episodes.  I must ask if you've had a colonoscopy post-treatment to rule out any bleeding higher up. 

Argon gas treatment can be effective for some people for radiation proctitis, but not for some. 

I'm glad your last PET scan showed no recurrence and I hope your doctors can find a way to give you some relief from your current bowel issues.  Please keep us posted.

Martha

Oooooh!

Hello, dear mp327:

I don't know about malabsorbtion causing problems with fatty, oily foods (though I wouldn't be surprised), but I know from experience those kinds of foods can cause flare-ups of IBS-D (diarrhea-predominant irritable bowel syndrome). Gall bladder disease and post-cholecystectomy (gall bladder removal) can cause problems with digesting fatty, oily foods.

mp327

Ouch_Ouch_Ouch said:

Oooooh!

Hello, dear mp327:

I don't know about malabsorbtion causing problems with fatty, oily foods (though I wouldn't be surprised), but I know from experience those kinds of foods can cause flare-ups of IBS-D (diarrhea-predominant irritable bowel syndrome). Gall bladder disease and post-cholecystectomy (gall bladder removal) can cause problems with digesting fatty, oily foods.

Ouch

I agree, it could be a number of things.  Oddly enough, I have not had a bout of it recently, knock on wood!