New to the forum but not new to pain

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!

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.

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

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.

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 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...

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.