Likely Radiation Proctitis

7243

Hello Friends ... I wanted to share my experience with you. I'm dealing with lots of mucus discharge (clear to rust colored with occasional specks of blood and can be pretty foul smelling) and some focal anal pain. My colo rectal surgeon, oncologist and GI MD all believe this to be radiation proctitis.

The mucus started 6 - 7 months after radiation treatment ended which is pretty much in line with when chronic radiation proctitis flairs up or begins to show symptoms. Of course I automatically think its recurrence or residual and am freaked out and terrorized as one of the other strings described this fear that pops up!

Nonetheless, I'm on an oral bowel anti-inflammatory and a suppository. They will do this for a month and if I still have the pain, will do a scope and possibly try Botox injection if the pain is limiting activities. Pain is not too bad, but the mucous is pretty bad.

Just wanted to share in case you have symptoms and are not sure of what's going on ... of course you'll want to discuss all symptoms with your oncologists.

RoseC

Hi - I had a lot of mucous
Hi - I had a lot of mucous from about six months out till about 2 1/2 years out (I'm now almost 3 years out). And some blood once in a while, usually after a difficult bm. No one ever mentioned 'radiation proctitis', but that's probably what it is. Either that or a leftover sensitive area from biopsies that I had at six months out.

But I'm feeling a bit anxious right now too. The past two days I've had some blood - not a lot, and yes, it was accompanied by a difficult bm. No different from any other time, but the one difference is that I'm going for my three year check-up in a couple of weeks. It's so weird how these check-ups make us so nervous! I'm getting scared that this time the blood means something's 'back', even though it's happened many times before.

Give me a little pep talk?

Thanks

z

RoseC said:

Hi - I had a lot of mucous
Hi - I had a lot of mucous from about six months out till about 2 1/2 years out (I'm now almost 3 years out). And some blood once in a while, usually after a difficult bm. No one ever mentioned 'radiation proctitis', but that's probably what it is. Either that or a leftover sensitive area from biopsies that I had at six months out.

But I'm feeling a bit anxious right now too. The past two days I've had some blood - not a lot, and yes, it was accompanied by a difficult bm. No different from any other time, but the one difference is that I'm going for my three year check-up in a couple of weeks. It's so weird how these check-ups make us so nervous! I'm getting scared that this time the blood means something's 'back', even though it's happened many times before.

Give me a little pep talk?

Thanks

Pep Talk
Hello, I think we all get so anxious before scan or exam time. I will have my exam on 10-20, and I'll bet I will finding things to worry about too. I think that we are just so sensitive to our bodies now that we will know when something is really wrong. I know when I went to find out about the hemroid, which turned out to be cancer, it had been months that I had problems. I think you will be absolutley fine and you might want to use a stool softner. I use fish oil pills and that helps. I wish you well. Lori

mp327

RoseC said:

Hi - I had a lot of mucous
Hi - I had a lot of mucous from about six months out till about 2 1/2 years out (I'm now almost 3 years out). And some blood once in a while, usually after a difficult bm. No one ever mentioned 'radiation proctitis', but that's probably what it is. Either that or a leftover sensitive area from biopsies that I had at six months out.

But I'm feeling a bit anxious right now too. The past two days I've had some blood - not a lot, and yes, it was accompanied by a difficult bm. No different from any other time, but the one difference is that I'm going for my three year check-up in a couple of weeks. It's so weird how these check-ups make us so nervous! I'm getting scared that this time the blood means something's 'back', even though it's happened many times before.

Give me a little pep talk?

Thanks

Hi Rose!
We all get nervous prior to scans and exams. Sometimes I think that contributes to bowel problems. It would seem to me that tensing up could cause constipation issues, which in turn can lead to bleeding with difficult BM's. Been there, done that! My radiation oncologist gave me a good explanation as to why we bleed sometimes. The treatment has left the blood vessels in the anal/rectal area closer to the surface, so when stool passes by, they can easily bleed. This is more likely when hard stools are passed, such as following a bout of constipation. It's really important to keep stools soft, so I take 3 stool softener tablets at bedtime every night, which really help. I would recommend starting off with one and then increasing the dosage if necessary. The generic kind I buy give the max dosage as 3 tablets.

I certainly understand your anxiety, but try to relax, as I think you are having some normal symptoms that do not indicate a recurrence. Please let us know how your upcoming appt. goes.

RoseC

mp327 said:

Hi Rose!
We all get nervous prior to scans and exams. Sometimes I think that contributes to bowel problems. It would seem to me that tensing up could cause constipation issues, which in turn can lead to bleeding with difficult BM's. Been there, done that! My radiation oncologist gave me a good explanation as to why we bleed sometimes. The treatment has left the blood vessels in the anal/rectal area closer to the surface, so when stool passes by, they can easily bleed. This is more likely when hard stools are passed, such as following a bout of constipation. It's really important to keep stools soft, so I take 3 stool softener tablets at bedtime every night, which really help. I would recommend starting off with one and then increasing the dosage if necessary. The generic kind I buy give the max dosage as 3 tablets.

I certainly understand your anxiety, but try to relax, as I think you are having some normal symptoms that do not indicate a recurrence. Please let us know how your upcoming appt. goes.

Thank you!
Thanks so much. Sometimes a little help is just what we need. Yes, Lori you're right, we probably would know if something's really wrong with our bodies. And mine feels fine (I'll keep remembering that), except for this recent bout. And Martha, you're so right too - I've often thought that getting nervous could cause tensing and in turn constipation. It seems I always have bathroom issues just prior to these exams. I do take one colace a day now - maybe I'll increase it to two. I ate M&M's the other day too - I wonder if the outside shells maybe don't digest fully and cause scraping on 'exit'.

The blood vessels are bleeding, that's all it is - I'll sure keep that in mind!

Thanks so much! I LOVE this board!!! I would have kept this to myself because I don't like to worry my husband. You all are great.

7243

RoseC said:

Thank you!
Thanks so much. Sometimes a little help is just what we need. Yes, Lori you're right, we probably would know if something's really wrong with our bodies. And mine feels fine (I'll keep remembering that), except for this recent bout. And Martha, you're so right too - I've often thought that getting nervous could cause tensing and in turn constipation. It seems I always have bathroom issues just prior to these exams. I do take one colace a day now - maybe I'll increase it to two. I ate M&M's the other day too - I wonder if the outside shells maybe don't digest fully and cause scraping on 'exit'.

The blood vessels are bleeding, that's all it is - I'll sure keep that in mind!

Thanks so much! I LOVE this board!!! I would have kept this to myself because I don't like to worry my husband. You all are great.

PEP Talk
Hello Rose ... How normal it is to be nervous! I don't think that will ever go away for any of us. I'm only (close) to 8 months out and go maybe a couple weeks without blood but as soon as I have a touch of constipation ... a bit of blood! This happens in those who don't even have our history!! But ... we've been through so much and it is so very scary ... the thought of a recurrence is enough to send us into a tailspin ... so frightening.

However, the good news is you're three years out. My oncologist says she breaths a sigh of relief for all patients who are clear at the two year point ... recurrence after that is pretty low. So you hang in there ... and I agree with what Martha said ... we get tense and a bit constipated and there you have it...some blood! And if that was your symptom at diagnosis ... it's built into our brains to freak out a bit.

I have to tell you one of the best things to keep me "regular" ... I eat at least 4 prunes and a few apricots a day with LOTS of water and I make sure I eat a nice bowl of white quinoa, a bunch of cut up yellow or orange bell peppers, halved grape tomatoes, cilantro, a bit of red onion and a quarter of an avocado with a couple shakes of blonde balsamic vinegar or your favorite salad dressing and that is packed with nutrients and LOTs of fiber!!

Rose ... you hang in there! Sending love and support your way!! Now I'll be asking for a pep talk before my next check up on Nov 21!! Lots of love .... xoxoxo

lizdeli

7243 said:

PEP Talk
Hello Rose ... How normal it is to be nervous! I don't think that will ever go away for any of us. I'm only (close) to 8 months out and go maybe a couple weeks without blood but as soon as I have a touch of constipation ... a bit of blood! This happens in those who don't even have our history!! But ... we've been through so much and it is so very scary ... the thought of a recurrence is enough to send us into a tailspin ... so frightening.

However, the good news is you're three years out. My oncologist says she breaths a sigh of relief for all patients who are clear at the two year point ... recurrence after that is pretty low. So you hang in there ... and I agree with what Martha said ... we get tense and a bit constipated and there you have it...some blood! And if that was your symptom at diagnosis ... it's built into our brains to freak out a bit.

I have to tell you one of the best things to keep me "regular" ... I eat at least 4 prunes and a few apricots a day with LOTS of water and I make sure I eat a nice bowl of white quinoa, a bunch of cut up yellow or orange bell peppers, halved grape tomatoes, cilantro, a bit of red onion and a quarter of an avocado with a couple shakes of blonde balsamic vinegar or your favorite salad dressing and that is packed with nutrients and LOTs of fiber!!

Rose ... you hang in there! Sending love and support your way!! Now I'll be asking for a pep talk before my next check up on Nov 21!! Lots of love .... xoxoxo

Ditto
Rose
Just want to say that I agree with what everyone else has said. "Scanxiety" is normal and we totally understand how you are feeling. So is a little blood now and then for all the reasons mentioned in everyone's posts.

You are going to get good news and I'm looking forward to the virtual celebration!
Liz

RoseC

lizdeli said:

Ditto
Rose
Just want to say that I agree with what everyone else has said. "Scanxiety" is normal and we totally understand how you are feeling. So is a little blood now and then for all the reasons mentioned in everyone's posts.

You are going to get good news and I'm looking forward to the virtual celebration!
Liz

Thank you
Thank you Liz and 7243 - your comments help so much. No more bleeding today.

Thanks to all of you - You got me through the jimmies! Calmness reigns once again!