New to the forum but not new to pain

Lawchick618

Hello 

I am 3 days post treatment for anal cancer.  I am 38 yrs old and already a cancer survivor from lymphoma 17 years ago.  My mom discovered your forum and we have tried numerous suggestions.  Will the pain ever end?  bowel movements are agonizing and urination is very painful.  This cancer is brutal.  

Can anyone offer any insight on recovery time?

Thank you and God Bless

 

 

 

 

caholz33

Lawchick

Congratulations on completing treatment!!!  I finished my treatment in July, had never had any type of cancer before so nothing to compare it to.  I finished on a Monday, and my worst days were that Wed - Sat.  It was the only time uriniating hurt - I wanted to not drink any water but it was actually better to drink plenty to keep the urine diluted.  I would pour a big cup of cool water over myself whenever I went to the bathroom, it helped reduce and dull the pain, though it was time consuming to air dry.  I took baths and put some vinegar in the bath, maybe 2 cups, which I had read helps the burns.  It sounds like it would hurt more but I think that helped. 

That was the only time frame that I took max painkillers, max dose every 4 hours (they didn't feel like they were doing anything, but I figured I didn't want to find out how much they WERE helping).  As for BMs I kept myself in a state of mild diarrhea throughout treatment, which worked best for me, though it was tough to keep clean.  I don't remember using a whole lot of products during that post treatment period, it seemed kind of beyond relief, plus applying anything was so difficult.  I think I would use some Desitin  around the anal area and dabbed the silver cream on other parts.  I had an aloe plant that I had been squeezing gel from and applying on a strip of paper towel in my butt crack, but those days I could not stand to have the paper towel touching me, so occasionally would try to dab some on skin.  Nor did I wear underwear or pants, just dresses.  It was a miserable few days, and I sympathize so much.  It didn't seem possible that this was how they expected my skin to be, and that they would let you go home and deal with it alone? Seriously?  I would think, holy cow, maybe I should be in a hospital or something.  Ugh.

On that Sunday things took an turn for the better, and as the pain diminished I actually felt kind of elated. Maybe my system had filled up with endorphins - I feel like I was high for a few days just from having the pain going away!  If your pattern is similar to mine there are only a couple more super-crappy days - hang in there!!!!  By Wed of the following week some friends took me to lunch, I got dressed, made-up, had a glass of wine, felt totally human again.  Hang in there!

mp327

Lawchick618

I'm sorry your diagnosis has brought you here, but very glad to hear that you have your treatment completed.  It can be brutal and, as you are now finding out, the painful side effects do not immediately subside.  You are very early in the recovery period, so please do not be discouraged.  I promise you, it WILL get better!  I had both very painful BM's and urination--so painful that it made me want to scream.  However, about 10 days after treatment, I began to see improvement.  I know it doesn't seem like the right thing to do, but drinking lots of water will help dilute your urine and decrease the acid.  Also, if you are not already using a squirt bottle filled with water to spray on your genital area as you urinate to help keep the urine from touching your skin, please get one.  Many people say this really helps.  If it doesn't, others have said that urinating in the bathtub in water can be less painful. 

I finished my treatment in September 2008 so I am way past the point where I am dealing with the same issues that you are.  However, I want you to know that once you are healed up and the side effects subside, life will be good again!  Hang in there and know that once you turn the corner, you will be feeling much better!

Marynb

Lawchick
Hi. You made it through treatment! I am sorry that you are in so much pain. The healing of the skinmwasmvery quick for me. About a week from now, you should feel so much better! I used a water bottle filled with fresh water kept near the toilet to dilute urine while you pee. Now that you are done, aquaphor should help. I used the handheld shower with warm water to rinse and soothe after using the toilet. Also, sitz baths with warm water and salt. It wipl heal much quicker than you think possible. Try to rest, eat extra protein to promote healing! Hang in there, lawchick. This will soon be in your past!

judyv3

Lawchick618

I am so right there with you.  I have two more treatments and wonder every minute how I will get through it.  But I count on my supporters here to help.  I'm just a little "behind" you and look forward to being DONE.  It's difficult for me to give you advice since you are ahead of me, but I know that I have to take baby steps.  

I'm sending positive thoughts to you and praying you get relief soon.

jcruz

The week after treatment

The week after treatment ended was the very worst for me.  I needed 3 neupogen shots and a blood transfusion and I was in so much pain as I think everyone else here was too at that point.  But by the beginning of the following week I saw a difference.  I could tell I'd hit the very lowest point and was beginning to come back up.  BMs still caused pain for a long long time after (even now after 15 months it sometimes hurts) and peeing was agony, not just because of external burns but because I'd had radiation to my vulva my urinary tract was burned too.  I had to take pyridium for several weeks and dabbed on lidocaine gel in order to go.  And I stayed on oxycontin for several months in order to cope with the constant pain in my butt.

Hang in there.  I think for most of us the recovery began within those first weeks post-treatment.  I wish you well.

Marynb

Lawchick
I just want to add an extra word of encouragement. Some have very bad experiences and there are lots of worse case scenarios here. However, for the most part, healing is pretty quick from this treatment. Hang in there this week and you will turn a corner in a week or two. As far as the painful BM's, I would look to your diet and add more clean water.

qv62

Lawchick618 and Judyv3

Wishing you both a speedy recovery, hope you find some relief soon and start the healing process, thinking good things for both of you

Lawchick618

qv62 said:

Lawchick618 and Judyv3

Wishing you both a speedy recovery, hope you find some relief soon and start the healing process, thinking good things for both of you

Pain

Thank you my friends

I wish I could say I was turning that corner but the pain is just still so bad.  Do any of you have any suggestions for the burning that lasts awhile after bowel movements?  My doctor recommended using a little ambesol.  I take oxy for the pain but don't see where it helps with this.  Did any of you feel like this?

Trying to hang in there but losing hope

 

 

caholz33

Lawchick

It WILL get better!  And besides, you did it.  You finished.  You got through the part where losing hope could have been dangerous (as in, not finishing treatment).  Now it's just a matter of enduring - some moments you'll feel strong and the next moment you might sink to the floor in tears, but either way your body's going to endure and heal and you WILL get your life back.  Not sure if you mean the immediate post-BM burning (on the toilet) or the lingering burn/itch thing, but I do remember going full circle back from my collection of prescription ointments back to plain old Desitin.  If I applied some before going to the bathroom it really helped protect my skin.  Then sometimes I'd feel like I had to take a bath afterwards, though, since dabbing gingerly at Desitin isn't very effective.  Other times I felt like I got clean enough pouring a cup of water on everything while on the toilet.  Ugh.  And I took lots of softeners, in fact I am over 5 months out and still take at least one a day.  Hang in there, it's going to feel so freaking great when you realize that you're finally on the upswing ... it will be such a relief when you feel that turn around and you're almost there.

mp327

Lawchick618 said:

Pain

Thank you my friends

I wish I could say I was turning that corner but the pain is just still so bad.  Do any of you have any suggestions for the burning that lasts awhile after bowel movements?  My doctor recommended using a little ambesol.  I take oxy for the pain but don't see where it helps with this.  Did any of you feel like this?

Trying to hang in there but losing hope

 

 

Lawchick

I would suggest trying Lidocaine.  It is an ointment that numbs and it really works.  You may be able to buy it over-the-counter.  It's what I used to numb up my port area prior to being stuck and I never felt a thing.

Lorikat

Lawchick618 said:

Pain

Thank you my friends

I wish I could say I was turning that corner but the pain is just still so bad.  Do any of you have any suggestions for the burning that lasts awhile after bowel movements?  My doctor recommended using a little ambesol.  I take oxy for the pain but don't see where it helps with this.  Did any of you feel like this?

Trying to hang in there but losing hope

 

 

Please don't lose hope....  I

Please don't lose hope....  I hurt so bad after treatment was over I would bite on a washcloth so no one would hear me screaming when i had a bowell movement.  I used lidocaine after washing with distilled water...   And then biofine.... I wore long dresses and went commando.  Fan blowing air on my burned up everything helped the most.  Then the burns began to heal, and then it hurt less to potty...  And now I'm two years NED...  You may or may not have long lasting side effects, but you WILL be glad to be alive.  Hugs and blessings...

islandgirlculebra

I found during the worst of

I found during the worst of it that peeing right into warm water in a sitz bath basin was the easiest way to go. Didn't feel that burning pain that way while urinating. I even had a bowel movement a few times that way, sounds gross, but it really makes it easier.......Also soaking myself in plain warm water for 15 minutes or so in the sitz bath was a great relief on the burned skin; I never thought plain warm water could be so soothing until I tried it..... The nurses used "3M Cavilon Durable Barrier Cream" on my burned skin when I was in the hospital, and I was able to get a prescription for it, which I used at home, which eased the horrible burning sensation on my skin.  Also the ladocaine gel with the numbing effect was very relieving. My heart goes out to you - you are in the worst of it now and I know it's painful. But it does get better.

TraceyUSA

Lawchick618

Glad you are done with treatments.  Here are a few suggestions:

1.  Apply vasaline prior to BM

2.  Baby wipes (sensitive skin kind)

3.  Use a warm sitz bath after BM

4.  Aquafor ointment

5.  No undergarments or binding clothes

6.  Drink LOTS of water

I had painful urination for about 2 weeks.  This seems to be common from urinary tract irratation.

BM pain gets better after a while. 

Thoughts & Prayers to you.

 

mp327

Lorikat said:

Please don't lose hope....  I

Please don't lose hope....  I hurt so bad after treatment was over I would bite on a washcloth so no one would hear me screaming when i had a bowell movement.  I used lidocaine after washing with distilled water...   And then biofine.... I wore long dresses and went commando.  Fan blowing air on my burned up everything helped the most.  Then the burns began to heal, and then it hurt less to potty...  And now I'm two years NED...  You may or may not have long lasting side effects, but you WILL be glad to be alive.  Hugs and blessings...

Lorikat

Is that your T-bird?  Sweet!