Question on Neuropathy

BonnieR

I don't think this subject has really been discussed, but I am wondering if anyone else suffers from nueropathy of the colon. I was diagnosed with this back in 06, or I think that is when I had another colonoscopy and he said that and recommended a colostomy.

My oncologist said "if you decide to that lets get a second opinion first" but we just lived with it at that time, it was doable. Well now it is worse and I am not always making it to the bathroom(I know TMI) ~ just wondering if anyone else has dealt with this and what do you do. I do also have cancer on my colon wall.

I know this next visit I well have to talk to the oncologist about how bad it has gotten and am a bit worried it is too late or I am not well enough for the surgery now. I guess we start out in diapers and maybe end up in diapers... bladder incontinence is bad enough but bowel incontinence is way way worse.

Hope I didn't gross anyone out, just haven't wanted to share this with family or put it on a prayer request :-/ you know what I mean and thought maybe someone else has dealt with this.


Thanks Much and God Bless

mopar

BONNIE
Sorry to hear you're dealing with this. I've never heard of neuropathy in this area. But I can surely understand what you are going through. After my husband's back surgery, his best friend was a pack of Depends. It was really humiliating and difficult for him, as he was someone who was always health conscious and in great shape. Fast forward 7 1/2 years, and now he can't even have proper elimination without the assistance of all kinds of aids. And when he uses them, he's right back into the Depends mode.

Anyway, just wanted to say I truly feel for you. I hope you can find out if it's workable some other way, and can find some relief from that constant 'anticipation' and concern whenever you walk out the door.

Luv you bunches. Super special HUGS today!

Monika

saundra

Maybe
I did have that problem during and after the hospitalization in May with the diverticulitis from the antibiotics I was taking. This was accompanied by large burst of gas so I often did not make it to the potty. If you have had antibiotics lately you may have an abscence of the good bacteria.

My bowel gyn/onc (not the regular one, but a woman) recommended ordering a probiotic called Saccharomyces Boulardii for the diarrhea and The-biotic Complete, a multispecies probiotic, from Klaire Labs. Can see on their web page. She said they are the only ones that ship enough live bacteria.

I took it two weeks and completely cleared up. Dr. Matthews is a special gyn/onc as she is well up on the bowel bacteria and restoration there. She gave me the name on one of two labs in the US that ship enough live bacteria to order from. I take another one each time I have to take those antibiotics and it cures me up quickly. My one tumor is on the sigmoid colon. So far, no one said anything about neuropathy on the colon but I have not had as much chemo as you, yet. My surgeon that treated the diverticulitis gave me some probiotics in the hospital but they didn't work like the ones I ordered from Klaire Labs and he was not sympatetic after I left the hospital about the diarrhea that lasted 6 weeks. I will keep these probiotics on hand as long as I kill off the good bacteria with antibiotics ever so often.

This was just a thought as antibiotics do kill the good bacteria and doctors don't usually address this.
Just in case....you want to talk to your doctor about it. Saundra

BonnieR

mopar said:

BONNIE
Sorry to hear you're dealing with this. I've never heard of neuropathy in this area. But I can surely understand what you are going through. After my husband's back surgery, his best friend was a pack of Depends. It was really humiliating and difficult for him, as he was someone who was always health conscious and in great shape. Fast forward 7 1/2 years, and now he can't even have proper elimination without the assistance of all kinds of aids. And when he uses them, he's right back into the Depends mode.

Anyway, just wanted to say I truly feel for you. I hope you can find out if it's workable some other way, and can find some relief from that constant 'anticipation' and concern whenever you walk out the door.

Luv you bunches. Super special HUGS today!

Monika

thank you
Hi Mopar, thanks for sharing..somtimes misery likes company and to know others suffer with this and just deal with it the best they can. Sorry to hear your hubby is in a similar boat but from different causes. I am hoping we can find a solution without another surgery too as I am not sure I could survive another surgery. Hugs ♥ Prayers and many thanks Bonnie

BonnieR

saundra said:

Maybe
I did have that problem during and after the hospitalization in May with the diverticulitis from the antibiotics I was taking. This was accompanied by large burst of gas so I often did not make it to the potty. If you have had antibiotics lately you may have an abscence of the good bacteria.

My bowel gyn/onc (not the regular one, but a woman) recommended ordering a probiotic called Saccharomyces Boulardii for the diarrhea and The-biotic Complete, a multispecies probiotic, from Klaire Labs. Can see on their web page. She said they are the only ones that ship enough live bacteria.

I took it two weeks and completely cleared up. Dr. Matthews is a special gyn/onc as she is well up on the bowel bacteria and restoration there. She gave me the name on one of two labs in the US that ship enough live bacteria to order from. I take another one each time I have to take those antibiotics and it cures me up quickly. My one tumor is on the sigmoid colon. So far, no one said anything about neuropathy on the colon but I have not had as much chemo as you, yet. My surgeon that treated the diverticulitis gave me some probiotics in the hospital but they didn't work like the ones I ordered from Klaire Labs and he was not sympatetic after I left the hospital about the diarrhea that lasted 6 weeks. I will keep these probiotics on hand as long as I kill off the good bacteria with antibiotics ever so often.

This was just a thought as antibiotics do kill the good bacteria and doctors don't usually address this.
Just in case....you want to talk to your doctor about it. Saundra

not antibiotics
Hi Saundra, I do try to make sure my system has all the good probiotics, very important when we get zapped with so much chemo. I also have a tumor on sigmoid colon and thickening of the wall of my colon in general from inplants. Not sure if that is part of the problem or not but several years when I first started having incontinence issues we did another colonoscopy and was told neuropathy of the colon, but it wasn't this bad. I wonder how many do get some neuropathy and don't even realize it. My onc said he had never heard of it, but unless you were having lots of problems who would look or check it out. Anyway I'll try and look at the sites you mentioned but still eat my yogurt with live cultures and juice. Hugs Bonnie

PS My doc and I have discussed this, but just haven't talked about it for a couple months and know now we need to do more, so on the agenda for the visit on the 28th.

kayandok

BonnieR said:

not antibiotics
Hi Saundra, I do try to make sure my system has all the good probiotics, very important when we get zapped with so much chemo. I also have a tumor on sigmoid colon and thickening of the wall of my colon in general from inplants. Not sure if that is part of the problem or not but several years when I first started having incontinence issues we did another colonoscopy and was told neuropathy of the colon, but it wasn't this bad. I wonder how many do get some neuropathy and don't even realize it. My onc said he had never heard of it, but unless you were having lots of problems who would look or check it out. Anyway I'll try and look at the sites you mentioned but still eat my yogurt with live cultures and juice. Hugs Bonnie

PS My doc and I have discussed this, but just haven't talked about it for a couple months and know now we need to do more, so on the agenda for the visit on the 28th.

neuropathy
Hi Bonnie, I am sorry you are having to deal with this! As if you didn't already have enough on your plate!
When I had my horrible bowel issues with gem/cis, I suspected I had some of this, and read up on it some. I don't think I do, as it completely cleared up when i finished the chemo. But, I know my friend does. She has had bowel issues like you describe for almost 3 years, after having surgery and IP chemo. The reading I did indicated that chemo and especially the IP can cause the neuropathy in the colon and/or bladder. My goodness, you certainly have had your share of chemo!! I hope you can find a good solution with your doc team.
Take care,
Kathleen

BonnieR

kayandok said:

neuropathy
Hi Bonnie, I am sorry you are having to deal with this! As if you didn't already have enough on your plate!
When I had my horrible bowel issues with gem/cis, I suspected I had some of this, and read up on it some. I don't think I do, as it completely cleared up when i finished the chemo. But, I know my friend does. She has had bowel issues like you describe for almost 3 years, after having surgery and IP chemo. The reading I did indicated that chemo and especially the IP can cause the neuropathy in the colon and/or bladder. My goodness, you certainly have had your share of chemo!! I hope you can find a good solution with your doc team.
Take care,
Kathleen

Thanks Kathleen
Hi Kathleen, thanks for the information as I had never looked it up the net and when diagnosed with nueropathy of the colon my gyn/onc seemed surprised, like he has never heard of that. Now you mention the bladder also and I wonder if that isn't part of most of the women's problem after chemo who suffer from incontinence. Thanks so much for sharing.

Hugs ♥ Prayers Bonnie