Joining for the 1st Time

cujuja4evr

Hi, I was recently diagnosed with anal cancer in April of this year. I completed 30 radiation treatments and two rounds of chemo. I have been looking for someone to talk to for a very long time. I have had some real challenges during my treatment, but now that I'm in recovery, I thought things would get easier, but unfortuntately things are not what I thought they would be. I'm having some major problems with constipation and PAINFUL bowel movements. I would like to talk to someone...ANYONE...who may have had radiation in the pelvic area to share what works for you and what doesn't. Maybe I can get some suggestions and I definitely need a lot of encouragement and support! Looking forward to talking to someone. Once my treatments were over, it almost seemed as if I was given a pat on the back and sent on my way to figure everything out on my own as if I had done this before!

lisa09

Hello
You will find many supportive people here that have all been through the same ordeal. It has been very helpful for me to have an outlet like this to talk to others. Although I often dealt with the opposite problem (diarrhea), are you eating plenty of fiber and drinking lots of water? That really is key. Also, exercise is very important to help keep things moving.

Lisa

mp327

Welcome!
As Lisa has already told you, eating enough fiber and drinking plenty of water are key in preventing constipation problems. However, like her, my problem was diarrhea, which went on for months after my treatment ended. I hear your frustration with your doctors and not getting any good advice from them. I asked my colorectal doctor what I should be eating and her response was "anything you want to!" Well, she would not have said that if it had been her bowels we were discussing. There are lots of foods that I can not eat, or can only eat in very small amounts. Good sources of fiber are fresh fruits and veggies, beans, oatmeal (preferably steel cut), whole grains, flaxseed and brown rice, just to list a few. Just be sure to add fiber to your diet gradually. Also, you might try adding a fiber supplement such as Metamucil. If your BM's are hard, a stool softener might give you some relief. I believe from my own experiences that diarrhea is a preferable problem over constipation, as constipation can cause bleeding.

Are you scheduled to see any of your doctors soon for follow-ups? That would be your prime opportunity to discuss this with them, but I would not wait until then to bring it to their attention. Also, getting a consult with a nutritionist might be helpful to you. I am not much on using laxatives, except on an occasional basis, and believe that correct nutrition and adequate hydration are the best way to get our systems working properly whenever possible.

I hope you'll keep us posted on how you are doing. I wish you the very best.

pjjenkins

post treatment bowel irregularities
Hi,
I had cycles of constipation followed by diarrhea and fair warning if you get to going out, it can be quite incontinent early on. I have now been out of treatment since March 2008 - more than 2 years! I kept a rough diary and the cycle was about every three weeks. My mind pictured it as the body testing new regrowth of healthy tissue following radiation. It was much much better by a year out of treatment.

I like walking and taking grandchildren places and learned the hard way early on to be prepared with a change of clothing. This was not always diarrhea.

My medicine chest must include just about every time-honored laxative known to the Western world but I have settled on using Citrucel daily and I no longer have frequent constipation. (Citrucel because it was the only sugar-free one I could find at first and now I like it with cranberry-raspberry all juice juice.)

Though I still occasionally have some constipation, it is so infrequent that I no longer remember to make entries in the diary.

The suggestion of seeing a nutritionist is very good. Our cancer center had one whom we could consult - no extra charge. He/she can help you look at your customary eating habits and help identify the best way for you to address this problem.

I do hope that you will quickly heal and find the things that work best for you.

Priscilla

cujuja4evr

lisa09 said:

Hello
You will find many supportive people here that have all been through the same ordeal. It has been very helpful for me to have an outlet like this to talk to others. Although I often dealt with the opposite problem (diarrhea), are you eating plenty of fiber and drinking lots of water? That really is key. Also, exercise is very important to help keep things moving.

Lisa

Hello Right Back Atcha
Lisa09 Thanks for responding back so quickly. I just happened to find this board out of frustration because it was really hard getting answers out of the radiologist and nurse. I have been trying to get into seeing my radiologist when I had a very painful bowel movment on a Thursday and I was told that they could "squeeze" me in the following Tuesday. HELLO!! So, what do I do until then?! I ended up showing up at their office anyway, and the nurse did not look pleased and I never felt so uncomfortable in my life. I felt like I was being a bother to them even though I was the one that needed the help. I did eat a bowl of Frosted Mini wheats about a week or so ago and it was disasterous! Maybe I ate too much too soon? Well, the mini wheats pushed everything through, but I felt like I had a baby through my butt which was unbelievably painful!

cujuja4evr

mp327 said:

Welcome!
As Lisa has already told you, eating enough fiber and drinking plenty of water are key in preventing constipation problems. However, like her, my problem was diarrhea, which went on for months after my treatment ended. I hear your frustration with your doctors and not getting any good advice from them. I asked my colorectal doctor what I should be eating and her response was "anything you want to!" Well, she would not have said that if it had been her bowels we were discussing. There are lots of foods that I can not eat, or can only eat in very small amounts. Good sources of fiber are fresh fruits and veggies, beans, oatmeal (preferably steel cut), whole grains, flaxseed and brown rice, just to list a few. Just be sure to add fiber to your diet gradually. Also, you might try adding a fiber supplement such as Metamucil. If your BM's are hard, a stool softener might give you some relief. I believe from my own experiences that diarrhea is a preferable problem over constipation, as constipation can cause bleeding.

Are you scheduled to see any of your doctors soon for follow-ups? That would be your prime opportunity to discuss this with them, but I would not wait until then to bring it to their attention. Also, getting a consult with a nutritionist might be helpful to you. I am not much on using laxatives, except on an occasional basis, and believe that correct nutrition and adequate hydration are the best way to get our systems working properly whenever possible.

I hope you'll keep us posted on how you are doing. I wish you the very best.

Jagged Rocks and Razor Blades
Thanks for responding to my post! I finally feel like I belong somewhere. Cancer can be so lonely and it seems that no one understands what I'm going through. I guess they never will unless they've been through it and maybe that's my problem - assuming that the other person should know what I'm talking about. My radiologist has never undergone radiation so she could never know what I'm feeling, but she ssems to have all the answers...none of which work. When I first met her, she told me that she didn't like "whiny" patients. What a first impression! I'm still healing right at the opening of the anas so that anything passing through hurts really bad. Sometimes it feels as if I'm passing jagged rocks and razor blades - even when the stools are soft. When the stools are very soft, almost watery like diarrehea, it feels like battery acids coming out and it burns like someone set me on fire. Did you go through that experience. My last radiation treatment was on June 7th and I've been experiencing that kind of pain and I was wondering when would the pain stop...if ever. I know that I have to heal inside, but when does the pain stop?

cujuja4evr

pjjenkins said:

post treatment bowel irregularities
Hi,
I had cycles of constipation followed by diarrhea and fair warning if you get to going out, it can be quite incontinent early on. I have now been out of treatment since March 2008 - more than 2 years! I kept a rough diary and the cycle was about every three weeks. My mind pictured it as the body testing new regrowth of healthy tissue following radiation. It was much much better by a year out of treatment.

I like walking and taking grandchildren places and learned the hard way early on to be prepared with a change of clothing. This was not always diarrhea.

My medicine chest must include just about every time-honored laxative known to the Western world but I have settled on using Citrucel daily and I no longer have frequent constipation. (Citrucel because it was the only sugar-free one I could find at first and now I like it with cranberry-raspberry all juice juice.)

Though I still occasionally have some constipation, it is so infrequent that I no longer remember to make entries in the diary.

The suggestion of seeing a nutritionist is very good. Our cancer center had one whom we could consult - no extra charge. He/she can help you look at your customary eating habits and help identify the best way for you to address this problem.

I do hope that you will quickly heal and find the things that work best for you.

Priscilla

Thanks Priscilla
I appreciate you responding to my post. I think you all have confirmed what I have been dreading all along - that my healing and recovery won't happen overnight. I think I'm trying to rush things because I want to hurry up and feel better. I went back to work less than six weeks after finishing my radiation. My skin has not healed all the way, but I thought I could handle it. What I didn't think about is that most of my time out of work, I was laying down, I very rarely sat on my butt. Of course, I sit down most of the time at my job and never gave any thought to how my butt would handle the long sitting for 8 hours. I was so hard-core that I never went back for 1/2 days...I went for the gusto!!! I went back to full days. Guess what? I'm back out of work, on short-term disability so that I could heal some more. Go figure!!

462lt

cujuja4evr said:

Thanks Priscilla
I appreciate you responding to my post. I think you all have confirmed what I have been dreading all along - that my healing and recovery won't happen overnight. I think I'm trying to rush things because I want to hurry up and feel better. I went back to work less than six weeks after finishing my radiation. My skin has not healed all the way, but I thought I could handle it. What I didn't think about is that most of my time out of work, I was laying down, I very rarely sat on my butt. Of course, I sit down most of the time at my job and never gave any thought to how my butt would handle the long sitting for 8 hours. I was so hard-core that I never went back for 1/2 days...I went for the gusto!!! I went back to full days. Guess what? I'm back out of work, on short-term disability so that I could heal some more. Go figure!!

I felt just like you
My radiaglogist gave me davocet for the pain. THIS STUFf doesn't work. I went to my regular doctor and got a scprit for hydrocone and asap. after 2 days my pain went when I went to the bathroom from a 10 to a 4.I like you felt like a was passing glass it was awful. Get the right pain med and don't take no for an answer. It also helps the fact that it burns down there even whenI;m not going to the bathroom. Also have prescriction for protofoam also very helpful. I have worled all the way through my treament so was very important that I was able to function. I have my last 3 boost radiaiton treatments in the next 3 days yea!!!GEt that pain meds don't be a hero!!!!Laura

cujuja4evr

462lt said:

I felt just like you
My radiaglogist gave me davocet for the pain. THIS STUFf doesn't work. I went to my regular doctor and got a scprit for hydrocone and asap. after 2 days my pain went when I went to the bathroom from a 10 to a 4.I like you felt like a was passing glass it was awful. Get the right pain med and don't take no for an answer. It also helps the fact that it burns down there even whenI;m not going to the bathroom. Also have prescriction for protofoam also very helpful. I have worled all the way through my treament so was very important that I was able to function. I have my last 3 boost radiaiton treatments in the next 3 days yea!!!GEt that pain meds don't be a hero!!!!Laura

It's so relieving to hear
It's so relieving to hear that I'm not alone, but at the same time, I hate that we have to go through this kind of pain. One day, it will get better. Glad to have met you and hope that we will talk again. The only bad thing about the pain pills is that they make you constipated and then you have to counteract that with laxatives to keep things moving. You never know when you go if stools are going to be hard or soft. Oh, well, let's hang in there!

mp327

cujuja4evr said:

It's so relieving to hear
It's so relieving to hear that I'm not alone, but at the same time, I hate that we have to go through this kind of pain. One day, it will get better. Glad to have met you and hope that we will talk again. The only bad thing about the pain pills is that they make you constipated and then you have to counteract that with laxatives to keep things moving. You never know when you go if stools are going to be hard or soft. Oh, well, let's hang in there!

I might make a suggestion of
I might make a suggestion of getting a prescription for Lidocaine cream, which acts as a numbing agent. This is what I used on my port prior to having it accessed and I barely felt the stick. I know some people have used it on their anal area prior to having a BM and have reported that it numbs the pain.

SueRelays

cujuja4evr said:

Jagged Rocks and Razor Blades
Thanks for responding to my post! I finally feel like I belong somewhere. Cancer can be so lonely and it seems that no one understands what I'm going through. I guess they never will unless they've been through it and maybe that's my problem - assuming that the other person should know what I'm talking about. My radiologist has never undergone radiation so she could never know what I'm feeling, but she ssems to have all the answers...none of which work. When I first met her, she told me that she didn't like "whiny" patients. What a first impression! I'm still healing right at the opening of the anas so that anything passing through hurts really bad. Sometimes it feels as if I'm passing jagged rocks and razor blades - even when the stools are soft. When the stools are very soft, almost watery like diarrehea, it feels like battery acids coming out and it burns like someone set me on fire. Did you go through that experience. My last radiation treatment was on June 7th and I've been experiencing that kind of pain and I was wondering when would the pain stop...if ever. I know that I have to heal inside, but when does the pain stop?

Oh my gosh....that IS
Oh my gosh....that IS EXACTLY how I felt. SOOOO Painful! I would literally just go curl up in a ball and wait for the pain to subside. I thought, WOW, I know other cancers have their challenges, but having such painful bowel movements has to be at the top of the list! And who wants to talk to your family and friends about that??? My boyfriend is really the only one that I shared it with, and mainly because he would see me crawling to bed to wait out the pain! And, I felt the same about the doctors too.....they didn't tell me how long to expect the pain to last.....and it felt like it took forever to subside. I'm two years out now, and I swear it just recently has felt normal, however, there are still occasional times when I get a wicked reminder! Amazing what the body can do, but it does take time to repair our tissue, and really get back to normal.
We're here for you!

z

mp327 said:

I might make a suggestion of
I might make a suggestion of getting a prescription for Lidocaine cream, which acts as a numbing agent. This is what I used on my port prior to having it accessed and I barely felt the stick. I know some people have used it on their anal area prior to having a BM and have reported that it numbs the pain.

I also experienced the
I also experienced the passing glass feeling, and I remember how painful that was. I never had constipation, I mainly suffered with diarreha. I would use a water bottle while using the bathroom. I went back to work 2 weeks after treatment ended. Just remember that we have been shrunk and burned and it takes a while for our tissue to heal. I hope you will get better soon. Lori

cujuja4evr

mp327 said:

I might make a suggestion of
I might make a suggestion of getting a prescription for Lidocaine cream, which acts as a numbing agent. This is what I used on my port prior to having it accessed and I barely felt the stick. I know some people have used it on their anal area prior to having a BM and have reported that it numbs the pain.

OMG! You may have saved the day!!!
You know what? I do have lidocaine cream and I have been scared to use it because I just HAD to read the side effects before using it and when I saw the words, "burning" I punked out! Let me explain why I decided against it. When I told my radiologist about the problem I was having with soreness and pain in the rectal area, she decided to have a pharmacist come up with a special compound "just for me" and she told me that it was okay to use on area which had not yet healed(the raw portion), that it would be okay because there was a numbing agent within the compound. I remember I had just gotten out of the shower and before I applied the aquaphor, I decided to try the "special compound". O...M...G the minute the cream (barely touched the area, mind you) it burned so bad that I jumped about a mile out the bed, yelled out a few cuss words and immediately ran to the bathroom to hurry up and wash off the area. Of course, until the baby washcloth had a chance to relieve me of the cream, it felt like someone had threw gasoline on that one spot and set it on fire. Because of that, I was scared to used the lidocaine. I would love to use it before a bowel movement, but the opening at the anus is still forming skin and I am so afraid that the lidocaine will burn. I'm so scared I won't even try. Maybe I'll give it a shot to see what happens. The gastro doc who prescribed the lidocaine said that he didn't believe that it would burn me, but I've been such a chicken. I might have to take a chance to see if this cream will work for me! Thank you so much. I'll let you know what happens okay? I feel a bowel movement coming on soon, so let's hope I get through it!

lemonade

cujuja4evr said:

OMG! You may have saved the day!!!
You know what? I do have lidocaine cream and I have been scared to use it because I just HAD to read the side effects before using it and when I saw the words, "burning" I punked out! Let me explain why I decided against it. When I told my radiologist about the problem I was having with soreness and pain in the rectal area, she decided to have a pharmacist come up with a special compound "just for me" and she told me that it was okay to use on area which had not yet healed(the raw portion), that it would be okay because there was a numbing agent within the compound. I remember I had just gotten out of the shower and before I applied the aquaphor, I decided to try the "special compound". O...M...G the minute the cream (barely touched the area, mind you) it burned so bad that I jumped about a mile out the bed, yelled out a few cuss words and immediately ran to the bathroom to hurry up and wash off the area. Of course, until the baby washcloth had a chance to relieve me of the cream, it felt like someone had threw gasoline on that one spot and set it on fire. Because of that, I was scared to used the lidocaine. I would love to use it before a bowel movement, but the opening at the anus is still forming skin and I am so afraid that the lidocaine will burn. I'm so scared I won't even try. Maybe I'll give it a shot to see what happens. The gastro doc who prescribed the lidocaine said that he didn't believe that it would burn me, but I've been such a chicken. I might have to take a chance to see if this cream will work for me! Thank you so much. I'll let you know what happens okay? I feel a bowel movement coming on soon, so let's hope I get through it!

PITA - pain in the a**
I look back on this as funny now, but it wasn't funny then. I was trying to get some pain meds from my oncologist and ended up talking to his Physician's Asst. She asked me if I have tried Tylenol. I paused for a few seconds and said "I don't think you quite understand. Ann, it feels like I have a knife up my butt, so I don't think Tylenol will help. She was taken aback and said she would get a Rx ready for me to pick up.

Sometimes, you just have to tell them like it really is.

Barbara

P. S. I used Silver Sulfadiazine cream (Rx) down there. It is for burn victims and it helped a lot. It comes in a tube as well as a jar. After going through 3 tubes, I finally got a Rx for the jar size.

mp327

lemonade said:

PITA - pain in the a**
I look back on this as funny now, but it wasn't funny then. I was trying to get some pain meds from my oncologist and ended up talking to his Physician's Asst. She asked me if I have tried Tylenol. I paused for a few seconds and said "I don't think you quite understand. Ann, it feels like I have a knife up my butt, so I don't think Tylenol will help. She was taken aback and said she would get a Rx ready for me to pick up.

Sometimes, you just have to tell them like it really is.

Barbara

P. S. I used Silver Sulfadiazine cream (Rx) down there. It is for burn victims and it helped a lot. It comes in a tube as well as a jar. After going through 3 tubes, I finally got a Rx for the jar size.

I used the silver
I used the silver sulfadiazine cream for my burned skin as well. I think the greatest relief for those painful bowel movements will still be the lidocaine since it numbs. Please let us know how it goes!

cujuja4evr

lemonade said:

PITA - pain in the a**
I look back on this as funny now, but it wasn't funny then. I was trying to get some pain meds from my oncologist and ended up talking to his Physician's Asst. She asked me if I have tried Tylenol. I paused for a few seconds and said "I don't think you quite understand. Ann, it feels like I have a knife up my butt, so I don't think Tylenol will help. She was taken aback and said she would get a Rx ready for me to pick up.

Sometimes, you just have to tell them like it really is.

Barbara

P. S. I used Silver Sulfadiazine cream (Rx) down there. It is for burn victims and it helped a lot. It comes in a tube as well as a jar. After going through 3 tubes, I finally got a Rx for the jar size.

Thanks to all the Caregivers!!
WOW! It's so nice and relieving that we have a sense of humor! When you're going through all the bad stuff, it ain't funny, but now that the worst is almost over, we can look back and laugh. As far as the rawness from the burns, it looks as if the skin is healing nicely and I went through about two jars of aquaphor to help with the healing. I have to share one of my funny, but embarassing moments with you. I was standing at the table with my mom in the dining room. All that morning I had been passing gas. Well, I thought I was passing gas again when I said, "Uh oh." When I looked behind me and down, I saw a nice dropping of liquid feces on the carpet. My mom was so sweet and understanding. She said, "You run to the bathroom, I'll get this cleaned up." I just want to thank all of our caregivers for the stuff that you put up with! We appreciate you more than you think!!!

cujuja4evr

mp327 said:

I used the silver
I used the silver sulfadiazine cream for my burned skin as well. I think the greatest relief for those painful bowel movements will still be the lidocaine since it numbs. Please let us know how it goes!

You would be so proud!!
I had a BM earlier and I did try a little lidocaine on the area, but I think that I put so little on my butt that it didn't take the full effect. Want to hear something crazy? I put in on after the BM. I'm such a chicken! It's a good thing that the pieces this time were very small and soft. I think I now have my nerve up to use the lidocaine for the next BM (BEFORE the BM and not after!) Bear with me! I'm such a newbie at this stuff! Thanks for your great advice. You seem to know more than my radiologist! Lots of hugz!

lisa09

cujuja4evr said:

Thanks to all the Caregivers!!
WOW! It's so nice and relieving that we have a sense of humor! When you're going through all the bad stuff, it ain't funny, but now that the worst is almost over, we can look back and laugh. As far as the rawness from the burns, it looks as if the skin is healing nicely and I went through about two jars of aquaphor to help with the healing. I have to share one of my funny, but embarassing moments with you. I was standing at the table with my mom in the dining room. All that morning I had been passing gas. Well, I thought I was passing gas again when I said, "Uh oh." When I looked behind me and down, I saw a nice dropping of liquid feces on the carpet. My mom was so sweet and understanding. She said, "You run to the bathroom, I'll get this cleaned up." I just want to thank all of our caregivers for the stuff that you put up with! We appreciate you more than you think!!!

Aquaphor
I am a year post treatment. I still use Aquaphor regularly to prevent irritation from bouts of diarrhea (I seem to experience the same type of "cycle" that Priscilla describes).

Lisa

cujuja4evr

lisa09 said:

Aquaphor
I am a year post treatment. I still use Aquaphor regularly to prevent irritation from bouts of diarrhea (I seem to experience the same type of "cycle" that Priscilla describes).

Lisa

Does it ever get better?
I know I'm almost 2 months post treatment and with the BM problems, I was really wondering as to when things are going to get better. Right now, I'm at the point of being afraid to eat. I eat alot or ramen noodles. When I tried eating fruits and salads, things seemed to get worse. I hear most of you talking about new tissue growing. Is that happening now for me? Does the new growth of tissue start 6 months from now? Are my bowel movements going to get better once the inside has healed up. I heard about scar tissue from other posts and I'm a little nervous about that. I am a bundle of nerves at the moment. I was saying to my husband this morning that I was so ezcited to finally talk to others who have experienced what I have, but at the same time, I'm almost afraid to hear the stories because I have these expectations that everything will be back to normal in a few weeks and life can go on as normal. I hope I'll get back to feeling normal? Does it ever get better?

cujuja4evr

lisa09 said:

Hello
You will find many supportive people here that have all been through the same ordeal. It has been very helpful for me to have an outlet like this to talk to others. Although I often dealt with the opposite problem (diarrhea), are you eating plenty of fiber and drinking lots of water? That really is key. Also, exercise is very important to help keep things moving.

Lisa

Exercise
Hey Lisa, my husband did say that he read that exercise is great for the digestive system. He suggested that I walk on the treadmill 20-30 minutes a day. I have been an athlete for most of my life and very active and now since I have been through this treatment, I feel like I don't have any energy to do anything. Are you involved in some type of exercise regiment. If so, please share. Thanks

cujuja4evr

lisa09 said:

Hello
You will find many supportive people here that have all been through the same ordeal. It has been very helpful for me to have an outlet like this to talk to others. Although I often dealt with the opposite problem (diarrhea), are you eating plenty of fiber and drinking lots of water? That really is key. Also, exercise is very important to help keep things moving.

Lisa

Exercise
Hey Lisa, my husband did say that he read that exercise is great for the digestive system. He suggested that I walk on the treadmill 20-30 minutes a day. I have been an athlete for most of my life and very active and now since I have been through this treatment, I feel like I don't have any energy to do anything. Are you involved in some type of exercise regiment. If so, please share. Thanks