The Colon Club

Hi all.

I've been through 6 months of folfox - what neuropathy in hands or feet i had gradually disappeared. I've had approximately 1.5 years of folfiri. Yes, had the diarrhea, but easily controlled - maybe maxxing out at 3 lomotil in one day. At some point, i had butt burn so started using calmoseptine. Unfortunately, i dont recall when it started or worsened. Just started (1.5 treatments) folfox again.

I'm thinking the butt burn is worse or maybe my tolerance has decreased. It feels like passing acid stools, and my anus and rectum hurt for about an hour after every bm. Not a problem sometimes, but somedays, a real problem.

Instead of just accepting the pain i decided to give a call into the pain doctor to get his opinion and see if there is something better than calmoseptine.

The reply came back that this could be neuropathic and he thinks a low dose (100mg gabapentin nightly) could help. I have seen so much on this board about hand and foot neuropathy butt never heard of butt neuropathy!!!!

I thought this was all just because of change in ph of stool. I understand we can't fix that, and the oxy and ms contin don't have an effect on this, so is it maybe worth a try? I am going to run it by my oncologist tomorrow, but thought I'd throw it out here too.

Thanks for any insight or opinions.

You may be having some pudendal neuropathy and Gapapentin might just get rid of the "butt burn"! I hope so!

It is worth a shot I think. Maybe it will help, if not then you haven't really lost anything and can rule out hiney neuropathy.

Best of luck to you, keeping you in my thoughts and prayers.

I was gonna mention B vitamins in the post about cracks on your mouth. I think a b deficancy can cause that too

On this post I was just gonna tell you, gabapintin was the only thing that stopped pain when hubby had a tumor there. Pain pills didn't work. It was obviously hitting a nerve or something.

But with the potty talk ( I think that was you )
Hips hurting. Now mouth & nerve pain down there. It might be worth checking b vitamins. I had a friend, I think she was just having a problem using her legs. It's been more than 5 years ago tho. One day she just fell while taking a kid to school. & couldn't get back up. They said it was B deficancy and it affects nerves quite a bit. Gabapintin was good for hubby tho. I hope you get something figured out.

Hope you get this figured out Beans and find some relief. Prayers and hugs to you...

Jjust a quick update for anyone who might be having the same situatuon.
The first day, the gabapentin didnt seem to do much, butt it has helped somewhat this past week or so.
Worth a try for those trying to find relief.

midlifemom wrote:Jjust a quick update for anyone who might be having the same situatuon.
The first day, the gabapentin didnt seem to do much, butt it has helped somewhat this past week or so.
Worth a try for those trying to find relief.

Glad it seems to be helping you at least get some relief. Hopefully it continues.

Keeping you in my prayers.

Hi
I was on pregabalin (similar formulation) for a couple of weeks for bad neuropathic pelvic pain after my hipec operation. It was incredibly effective. The thing to watch out for is coming off. I'd strongly recommend a gradual dose reduction. I didn't do that (went cold turkey) and had night sweats, crawly skin, bad dreams etc for a while after.
Tim

I have the same pain. It is currently my biggest complaint about chemo. Every BM is so painful. When it is at all convenient, I often go straight to a sitz bath for relief. I use calmoseptine, tucks, prep H, etc. It doesn't seem like nueropathy, because I am swollen (like hemorrhoids) and raw with occasional bleeding. I just started on lomotil to see it reducing bowel movements will help. Today I even tried acupuncture for the first time specifically for this issue. I start chem #4 of folfox (this time around) on Tuesday. I was hoping to have some relief before starting all over again. I'm following to see if you get relief from Gabapentin.

arizona mom wrote:I have the same pain. It is currently my biggest complaint about chemo. Every BM is so painful. When it is at all convenient, I often go straight to a sitz bath for relief. I use calmoseptine, tucks, prep H, etc. It doesn't seem like nueropathy, because I am swollen (like hemorrhoids) and raw with occasional bleeding. I just started on lomotil to see it reducing bowel movements will help. Today I even tried acupuncture for the first time specifically for this issue. I start chem #4 of folfox (this time around) on Tuesday. I was hoping to have some relief before starting all over again. I'm following to see if you get relief from Gabapentin.

Talk to your doc, it might help. I started super low dose, 100mg/day.

arizona mom wrote:I have the same pain. It is currently my biggest complaint about chemo. Every BM is so painful. When it is at all convenient, I often go straight to a sitz bath for relief. I use calmoseptine, tucks, prep H, etc. It doesn't seem like nueropathy, because I am swollen (like hemorrhoids) and raw with occasional bleeding. I just started on lomotil to see it reducing bowel movements will help. Today I even tried acupuncture for the first time specifically for this issue. I start chem #4 of folfox (this time around) on Tuesday. I was hoping to have some relief before starting all over again. I'm following to see if you get relief from Gabapentin.

For those following, yes the gabapentin helps. I've been experiencing two types of pain during bms. One is the burn, like the stool is too acidic. The second, and worse, is the knives in pelvic area with intense low back pain and tailbone pain.

I started gabapentin - 100mg - at night, cause it can cause fatigue. The pain was reduced, but evenings were still hard. The pain doc now has me taking 100mg in morning and night. The nighttime pain is gone!!!:) this is big relief since thats when i cluster. The burning pain is slightly reduced, wish that was better. But the knives, muscle and tailbone pain is GONE!!

I hope everyone can find some pain relief today, in whatever form it may be.

Glad to hear that Gabapentin helps!!

I completely sympathize with you as I am dealing with similar pain from anal nerves I believe. So sorry for your pain. I am trying Lyrica but not been helpful so far. I tried gabapentin and did nothing for me. I’m glad it helped you!

Just wanted to chime in here that I developed what I can only describe as genital-area numbness while on Folfox that I assumed was because of continuing weight loss. It started well before the neuropathy in my feet, and didn't have the tingling weirdness of neuropathy. I only noticed it when I was cleaning up. It started improving before the neuropathy in my extremities started improving, too. So I don't think it's quite the same thing and obviously it's not the same as what you're experiencing. But just wanted to add that I had odd nerve stuff happening in those areas as well. (And it didn't seem a big deal because the pleasure plumbing was somehow unaffected.)