Radiation Proctitis - Medication HELP Needed!

This is my first post. And, being that I'm female, I will start by saying that my radiation proctitis is from radiation therapy I had for treating rectal cancer. However, since they did not have a forum for colorectal cancer, and since the prostate is in the same area and holds the same side effects, I headed to this forum to try and get some help.

Here is a little background info before asking my question.

I had a very easy time with my radiation therapy ... in fact, the clinic where I was treated said that I had the easiest time of any patient they've treated for a rectal tumor. Oddly, it was at the end of my treatment period, when they lowered my radiation dose and further honed in the radiation field (so that less healthy tissue was being hit), that I started getting side effect symptoms. It started with my bladder ... urgency, bleeding, bladder spasms, general pelvic pain. They took me off of radiation treatment and in approximately three weeks, my bladder was healed and happy again My mom's birthday/Mother's Day was just a few days away and since I was feeling better (and still had the week off of treatment) I decided to go home to surprise my mom. Well, two days after my mom's birthday, on May 15th, my proctitis symptoms started ... very minor at first. Over the next week, the symptoms worsened and progressed to a definite case of radiation induced proctitis: extreme pain with bowel movements, blood streaked mucus and periods of minor bleeding, passing mucus, bowel urgency.

My doctor first wanted to start me on Proctofoam, but I chose not to start with that medication. I don't want to use cortisone-based meds, since they can weaken the (already damaged) tissue and cortisone meds also have a strong propensity toward producing a rebound effect (where symptoms get worse when the med is stopped). Instead, I was started on Canasa suppositories, which definitely helped with the inflammation and very *temporarily* provides some symptom relief. After two weeks, with limited improvement, the doctor added Carafate/Sucralfate enemas, a 2 gram solution twice per day. Since using Carafate/Sucralfate for radiation proctitis is considered "off use", there isn't information regarding "how to" use the enema - my doctor prescribed it based on the research efficacy, which provides dosing information, but not information on administering the enema. Sometimes I can hold the enema for a decent amount of time, but other times, the enema initiates some rectal inflammation and holding the fluid is difficult. My doctor could not find any information on how long the enema *needs* to be held to actually have time to work.

Soooo, my question is to those using a Carafate/Sucralfate enema for radiation proctitis, what is the *minimum* amount of time you were told you need to hold the enema for it to work? Also, anything that you found that made the enema work better? Lastly, with using both Canasa suppositories (I use 500mg suppositories 3 to 4 times daily) and Carafate together, is there anything that you've found that makes the two medications work better (i.e. timing).

One other question I have ... in addition to the damage caused by radiation to the rectal area, I had internal hemorrhoids before receiving radiation and can feel the hemorrhoidal tissue inside my rectum when I put the suppository in place. Is there something that works better for the hemorrhoid pain ... or do the Canasa and Carafate help with that too?

Thank you ALL for your support on this forum and thank you, in advance, for any advice you can offer!

{{{Hugs}}}
Bnatural

It is also very important to keep you stools soft. With my radiation proctitis, I was on rectal Carafate and rectal corticosteroids. However, every morning, I would have a hard BM and bleeding and irritation would begin. Miralax, Citrucel or Metamucil has reduced my bleeding and irritation significantly.

I would try to hold the Carafate, but it made me miserable. I was lucky to hold it 15 minutes. It helped some but not as much as changing my bowel habits.

Good luck
paul

I had a lot of colo-rectal damage due to surgery a few years before my PCa. The radiation inflammed that.

I used proctofoam in the past, but now use analphram as needed.

My colo-rectal guy put me on docusate calcium for life. It gives me loose BMs in the morning, but getting constipated is horrific, so I'll make do. 

Doc says hyperbaric oxygen is possible, but has limited value for me.

Thank you Bill! Can you tell me how long you were instructed to hold the sucralfate suspension? I too am using a 20ml suspension. My doctor followed the research guide and has me dissolve 2 of the oral tablets in 20ml of saline. It's not sticky and is quite easy to administer.

That said, neither my doctor or I can find any information (or anyone with personal experience) to share what the minimum holding time is for the enema - there are times when I can't even tell I've used it and I can hold it for hours, but there are also times when 5 or 10 minutes after I administer the enema, it stimulates a BM and (of course) the Sucralfate solution is lost during elimination. I want to give the treatment the best possible chance of working (and helping to heal the damaged tissue so I can find some pain relief). So if anyone can share how long they were instructed to hold the carafate/sucralfate enema, I would be VERY grateful!
Thank you for continuing to reply - I so greatly appreciate all of your encouraging and helpful words!!!!!
With gratitude and smiles,
Tamara

Tamara,
I am a pharmacist and the time to retain is poorly defined. The above comment from Bill's pharmacist is correct. Unfortunately, after 15 minutes or so, it often does stimulate a bowel movement. Surprisingly, rectal Carafate can cause constipation since its aluminum content is high. It is important that you do not get constipated and strain to have bowel movements.

Before I added fiber (Citrucel/Miralax), I was needing to use the rest room 3-4 times/day. When I added fiber and increased my water intake, my bowel movements decreased to 2 times daily and were softer. I received this advice from a gastroenterologist I saw to get his opinion on my bleeding. This decreased the friction of the stool from breaking open the forming blood vessels resulting from the radiation damage. I would entertain the notice of Allen's suggestion of gamma-tocotrienol. The literature is interesting. I wax and wane on suggesting supplements!!:)
Also, the gastroenterologist suggested that if my bleeding got worse, he felt Argon plasma was the better option than formalin. In his experience, he was not very impressed with either corticosteroid products or Carafate.
I am still bleeding 1-2 times per week. However, the pain is gone and I feel as if I have turned a corner.
Good luck

Paul

Thank you SO much for the information, Paul! How long did it take for you to feel pain-free? I'm just at a month from the onset of symptoms. It wasn't so bad when it started, but then it escalated for about a week. It was sooooooo painful! The Canasa suppositories brought the pain down ever so slightly and helped a lot with the frequency and tenesmus. The pain can still be pretty severe with BMs. This keeps me housebound because there is no way to know when I'll need to go and no way to know how bad the pain will be. I draw a hot bath before I even start - then I hobble, weak kneed, to the tub. Hot water helps to interrupt the nerve signals and brings the pain to a tolerable level.

I've not been constipated at all. However I have been avoiding fiber foods (wanting less waste ;-) ). I didn't think about the gentle fiber powders. I have some acacia fiber and will start using it!

Thank you all for taking time to share your wisdom, trials and successes with me! I appreciate you all very much!

Hugs and smiles
Tamara

I forgot to mention a "thank you" to Bill ... thank you for taking the time to check with your pharmacist! My pharmacist, like yours, stated that it should only take 10 minutes or so for the medication to be absorbed from the colon. Then I explained that the purpose is not absorption into the bloodstream, but to adhere to any wounds and act as a protective barrier. Like yours, my pharmacist then stated "well, I guess it would be best to hold it as long as possible" Hmmmm ... thinking that *guess* didn't come from his PDR? It's tough when meds are used "off label", as there often isn't sufficient data on usage that we can lean on. I was surprised that "timing" hasn't been mentioned in any of the studies (outside of the fact that the enema is used twice daily). I would think this would be a strong variable in determining efficacy ... if one individual holds the solution overnight their outcome may be better than someone who can only hold the solution for 10 to 15 minutes. It would be nice to know whether it makes a difference, as there are times when I suffer through the discomfort to hold the enema as long as possible. If it's needed, fine ... if it's not, then I'd rather get to release the solution when the urge strikes me.

I would really enjoy hearing from anyone that would like to share how long it took for their symptoms to start subsiding ... and the pain to diminish. If I can get to a better place with the pain, it would greatly improve my quality of life. Right now, I usually have a good amount of pain after going to the bathroom and how long it takes to get out of pain can vary from minutes to hours. To be "out and about" and have the debilitating pain occur is no fun. I know each of us is different, the amount of damage we've each suffered is different, but it's encouraging to hear of other's successes ... it lets those of us still suffering know that there is a light at the end of the tunnel ... with our names on it

Enjoy the beauty of today and know you all are wonderful to take time to share on this list!

Hugs and smiles,
Tamara

Thanks, Allen! With using UC forums, the trouble is that radiation proctitis is normally self-limiting, while for UC sufferers the issue is more auto-immune related. I've learned a lot from the UC community, but in terms of treatment expectations, there is too strong a difference between UC proctitis and radiation induced proctitis ... my hope is for tissue repair, to the point of improving quality of life. For UC sufferers, their hope is for remission of symptoms. But that comes primarily from stopping the body from attacking itself.

For the past three days, the pain subsides much faster than it was after BMs, but today (with a soft stool) I had more bleeding than I've been having. While pain and inflammation are NO FUN, they are not life-threatening ... bleeding can open up a whole new can of worms, so I'm praying that it doesn't get worse. One day at a time

And this is such a wonderful community ... even though troubles are discussed, it's very uplifting. I really appreciate that! Some forums are so "doom and gloom" and rather than feeling like "this too will pass", they can leave a person feeling sad and hopeless. I think mostly it's nice to find people that we feel comfortable sharing with ... just being able to get our thoughts out of our heads helps a lot! And it's also nice to get to share thoughts outside of family.

Again, THANK YOU all so much for all you contribute here and for making my life better, just by sharing your wonderful words!

With smiles, hugs and a grateful heart!
Tamara

Paul,

I appreciate your response more than these meager words can express!!!! THANK YOU! It's exactly what I needed to hear

My doctors are not used to dealing with proctitis, because I had an (FDA approved) alternative treatment that combines low dose, focused radiation with localized hyperthermia. Because they use low dose, focused radiation, those receiving radiation anywhere in the pelvic area rarely have *any* side effects ... maybe a short bout here and there with gastro trouble, but nothing severe. So they are quite dismayed that I'm experiencing all of this. Their primary focus is prostate, breast and head/neck cancers and they have a lot of statistical data (working in conjunction with Duke University) and they have excellent results, which even allow them to legally use the word "cure" rather than NED. Normally treatment lasts for 3 to 4 months ... however, my tumor was stubborn and I was there for 7 1/2 months. Everyone that started at the same time I did (or close to) left right on time ... disease free; with the majority being stage IV cancers. Two of the people I started with had prostate cancer with bone mets ... and they were in and out of there without missing a beat So, had I only needed the 4 months of treatment, I doubt I'd be dealing with this ... but Life had different plans for my journey ... and I admit that I have learned so much throughout all of this! Cancer has ultimately blessed my life ... especially through all of the people I've met, such as all of you, that care and bring peace and joy to so many others.

I actually use a basting syringe (without the needle of course ) to instill the carafate enema. This way, I only have to put the very short syringe tip at the anus opening and don't have to actually insert anything into my rectum. I greatly appreciate the advice regarding the timing on holding the Carafate. It's odd because on the days when I have more bleeding, I have less pain ... not the best tradeoff, but a break from the pain is still welcome

I am so grateful for everything you stated, Paul ... knowing that you had pain for a few months, but that even if the pain/symptoms last a few months, everything eventually does get better and more manageable brings such peace of mind. It's also such a relief to know that the bleeding, if not super heavy, really doesn't pose a health risk. I'm trying to get scheduled for blood work here in AZ. I have a Power Port and finding a lab that has the ability to access a port is almost impossible. I would just have my blood drawn from the vein, but my port needs to be flushed and I'm overdue for that ... I've been working for the last two weeks to find someplace, but it looks like my only option is going to the hospital. I will eventually have to find a doctor here to oversee my care, but at this point I know what I'm dealing with. I've found that any more, doctors won't take the diagnosis of a previous doctor ... they all insist on performing their own exam. It's understandable, but I've heard so many horror stories about doctors causing further damage to the fragile tissue during an exam ... much like Bill experienced with having his colonoscopy, which started his proctitis. Plus, if anything looks suspect, you have to talk them out of performing a biopsy due to the risk of causing a fissure or fistula to form, so all they can do is scare you. My last CEA (tumor marker for colorectal cancer) was taken in April and was 1.9 - below 3.0 is normal. I started at 28, so this was very good news

I work hard to stay positive and have *faith* that my body can heal and stay well. Getting to share and be supported by all of you has truly helped!

THANK YOU AGAIN AND AGAIN!

With warmest regards and enormous amounts of gratitude!!
Tamara

I have rectum bleeding issue from Radiation (SBRT) Proctitis. I am going to try sucralfate enema. So I googled it. I found one article which showed how long you should hold for sucralfate enema. Basically it suggests 20 minutes for daytime (4 positions, 5 min each), and as long as possible for night time. Please see the link below.

http://www.scotcri.co.uk/docs/sci%20sucenematech.pdf

Larry

Depending on how bad it is, you might consider talking to a GI. There are other procedures they can do to help.

I found post RT I was more susceptible to constipation and that can cause bleeding. I ended having to have a colonoscopy with laser treatment and have to take Mirlax daily to avoid constipation. Also I avoid very salty food or anything with sugar as both really dry you out (if I drink a soda, I'll be bleeding the next day, weird but repeatable for me).

Sometimes just a simple stiz bath and increasing fiber intake can do a lot. But in the case of radiation proctitis, I found that home remedies only went so far. It was the colonoscopy plus treatment that really gave me relief. They only had to do it once and other than the prep for it, it's not that bad a procedure.

Andrew

Thanks for the feedback from Blackjack, Intheshop and Garyi. I have seen a GI doctor and did the colonoscopy last October when I had left side abdomen discomfort and blood on stool. Based on the colonoscopy, GI doctor found I have multiple diverticula, but there was no evidence of diverticular bleeding. He also found multiple small patchy angioectasias with stigmata of recent bleeding in the rectum. He believed the angioectasias was from the SBRT radiation. But he did not suggest any treatment. He said the bleeding may stop itself and I may get better few months later. However, my blood on stool problem never stop for the past 9 months. So I decided to see another GI doctor this week. This GI doctor suggested another colonoscopy and 3 times of argon plasma treatment. But my insurance has very high out-of-pocket maximum. So I asked for another option. Then he prescribed me the sucralfate suspension enema 4 weeks treatment. I haven't started yet, because it took me some time to find a compounding pharmacy which can do the sucralfate enema for me. I will post my result again few weeks later. Hopefully it can stop the bleeding for me. I like to post here to let the other people know, you may get radiation proctitis from SBRT. I was not aware of this side effect when I chose SBRT for my prostate cancer treatment 2 years ago.

One thing to bear in mind if the condition is bad and nothing else works is Hyperbaric Oxygen Therapy. It's never the first thing a doctor will try since it is both inconvenient and relatively expensive but it will frequently help when other treatments fail.

As others have mentioned, the condition will often resolve itself with time and the first-line treatments (enemas suppositories) can take time to work, too, so a bit of patience is helpful.

Here's a recent writeup on Hyperbaric Oxygen Therapy to treat radiation proctitis:

Hyperbaric, Radiation Proctitis