Flaming Butt!

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JudyM
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Location: NH

Flaming Butt!

Postby JudyM » Sat Nov 02, 2013 9:21 pm

Hi folks, well we tried the calmoseptine - he says it helps a little. but he's so uncomfortable that he can barely sit in any position! We've got a thick foam pillow (not what I expected when I ordered a gel foam pillow), and a softer round pillow that is firmish on the outside and much softer in the center. He says soemtimes they're ok. Mostly he lies in bed because on his side is the only thing that seems to help. but he can't do anything, even if he has the energy to!

It doesn't hurt all the time, there are stray 1/2 hours that don't. but most of the time....

We've got a sitz bath, the nurse showed him how to use it. He said it was ok while he sat, but still hurt afterwards.

Dr gave him tyleonl 3 (tylenol w/codeine) so he can sleep at night cause the pain was keeping him awake. I told him to take some during the day if he needs to.. but he can't take a lot of tylenol cause his liver is so bad. His pcp gave him a script for gabopentine, but that didn't make much sense to me, and he wasn't sure it would do anything. Anyone ever heard of gab being useful for this??? I'll fill it if it will help, but it's a nerve drug...

Someone said there were some stuff to use with the sitz bath that helps more than plain water?? something about chamomile? what, and where do I find it (yes, I know chamomile is an herb. are we talking oil, bulk herb, tea???). anything else?

Nurse was wondering about lidocaine cream. Frankly, so have I.

Good news is that his CEA has finally dropped! for the last 2 months it's been off the charts coming back as 'over 10,000'. This week it dropped to 9000+! so we're back on the chart. That's something I guess.

this flaming butt is such a problem for him. There's got to be something else we can try. the drs are all clueless. I mentioned proctozone, but they didn't know anything about it. Maybe it's just Canadian?
DH, 56yrs,
Dx 9/1/11,Stage 4 RCa with liver mets, 1N.
9/14 folfox-Avastin
4/12 erbitux & irinotecan
11/12 radiation + xeloda
7/13 small lesions in both lungs, some nodes, liver gone beserk
8/13 folfiri+zaltrap
11/21 chemo fail.
121-20 flown away

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Flaming Butt!

Postby chrissyrice » Sat Nov 02, 2013 9:40 pm

A & D cream for baby butt worked the best for me.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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JudyM
Posts: 199
Joined: Sun Sep 11, 2011 2:29 pm
Facebook Username: Judy Cole Mitchell
Location: NH

Re: Flaming Butt!

Postby JudyM » Sat Nov 02, 2013 10:14 pm

I can see it as a moisture barrier - but does it numb the pain? He has pain well after being in the bathroom. (Yet I could smack him sometimes, when the dr's ask if he has any pain and he answers 'no' simply because he doesn't at that specific moment!)
DH, 56yrs,
Dx 9/1/11,Stage 4 RCa with liver mets, 1N.
9/14 folfox-Avastin
4/12 erbitux & irinotecan
11/12 radiation + xeloda
7/13 small lesions in both lungs, some nodes, liver gone beserk
8/13 folfiri+zaltrap
11/21 chemo fail.
121-20 flown away

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Flaming Butt!

Postby chrissyrice » Sat Nov 02, 2013 10:45 pm

Yes I did get pain relief too
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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CRguy
Posts: 10096
Joined: Sun Feb 10, 2008 6:00 pm

Re: Flaming Butt!

Postby CRguy » Sat Nov 02, 2013 11:14 pm

JudyM wrote: His pcp gave him a script for gabopentine, but that didn't make much sense to me, and he wasn't sure it would do anything. Anyone ever heard of gab being useful for this??? I'll fill it if it will help, but it's a nerve drug...

I'll probably get into shit here : not the first OR last time ..... BUTT I suspect the pcp cannot prescribe the full range of meds including potent pain meds ????? ... which hubby NEEDS ! ....BEE-Cause neuromodulator meds will NOT do shit for the kind of pain you are talking about .. unless they're use is seconday to a potent PRIMARY analgesic i.e. IMO NSAIDS or opioids ... forget the Tylenol stuff... for this kind of pain = useless ...BTDT.

If any of these Einsteins ever had THEIR OWN Grade TEN pain from the anorectal area, they would not even waste the time to write a script for gaba.
YES, JMO ... BUTT I have been doing this for over 30 years as a vet and the last 7 as a patient. => viewtopic.php?f=1&t=13273&start=45#p103240

Talk to somebody in the docs office who knows what they are dealing with and knows what they are doing.

END RANT !

Now to the meds which WILL work :

the Proctosone / Proctosedyl types ( many other names I am sure ) have the following 4 things which are ALL needed......
AND are available as suppositories, creams or ointments for internal or external use.

1. LOCAL anusthetic :shock: like lidocaine, cinchocaine, dibucaine
2. ANTI infective like framycetin
3. surface protectant like esculin
4. anti-inflammatory like hydrocortisone

You need it ALL, and may have to supplement with proper oral analgesics until things get better..... BTDT.

Tell the pcp to go back to school or PM me if he has an issue with proper patient care.

Just really pisses me off when a bitchy old vet knows a better standard of care than a supposedly licenced medical person... when someone is in pain.

Oh yeah... end rant...again !

Get the right meds and get the pain under control and talk to the right people !

Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Cj51
Posts: 892
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: Flaming Butt!

Postby Cj51 » Sat Nov 02, 2013 11:31 pm

I had horrible pain while I was getting radiation. Finally, the Dr. gave me some hydrocortisone suppositories. I'll be honest, the first time I used one I nearly passed out, it hurt so badly, but after awhile it took the inflammation down and it was bearable. You might try asking your Dr. about them. At the same time, he also needs to be using Calmoseptine or the barrier cream of his choice, and very mild or no soap at all, just warm water. I used epsom salts in my hot sitz baths and that helped better than plain water--a half a cup or a cup per gallon, I don't remember, just threw it in and melted it in the hot water. I was desperate for relief, and I'd read about it here. I know it sounds odd, but after initial stinging, it did sooth and helped while I was there and for some time after. I also took Ibuprofen to help with the inflammation. But it was the suppositories that helped the most. Hope this gives you something to go on, perhaps if you ask they can look into it. I'm sorry this is such a trial for him. It's awful how being in constant pain really just takes your energy and dampens your spirit. I hope he can find some relief soon.

Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
10/15 NED

michelle c
Posts: 1890
Joined: Wed Dec 02, 2009 3:58 am

Re: Flaming Butt!

Postby michelle c » Sun Nov 03, 2013 12:32 am

Your poor husband....he shouldn't have to suffer like that. He may need a combination of different meds - oral and topical. Is there someone who he can see who is a pain management expert. His doctor sounds useless, sorry. He needs to have this pain managed properly. All the best and I hope that he can have some relief soon.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

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Rob in PA
Posts: 2001
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Flaming Butt!

Postby Rob in PA » Sun Nov 03, 2013 12:45 am

...yes, what cr said :o. He knows his shit....literally!

Best to you and hubby.
rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Flaming Butt!

Postby skypup » Sun Nov 03, 2013 1:41 am

Rob in PA wrote:...yes, what cr said :o. He knows his shit....literally!

Best to you and hubby.
rob

Yes, yes, yes!

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teacher49
Posts: 182
Joined: Sun Aug 14, 2011 10:34 am

Re: Flaming Butt!

Postby teacher49 » Sun Nov 03, 2013 11:16 am

I remember well the feeling of hot lava bowel movements at the end of my radiation tx. The pain would be intense and linger for hours. I tried everything......sitz baths, creams, pastes for open external skin burns. I did find relief using Tucks pads which are just witch hazel and not alcohol. But I also tried a green tea compress (super maxi pad) ...I can do that since I'm female :) it did feel as good as any sitz bath prep. It was the internal burn that was so painful that I could hardly stand it. The only relief I had for that intensity was hydrocodone and I had no qualms about taking that drug......it took the pain away within 15 min. Haven't used pain pills since that time.
F, 62,CRC, Adenoca, mod diff
cT3N0M0 Stage IIA May 2011
chemorad
APR on 9/27/11 Margins & Nodes Neg
comp.after surg/2 pelvic abscesses/Sepsis/Hosp 40 days
10th FOLFOX 6/6/2012 feet went numb
5FU to finish
NED 4/6/18

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JudyM
Posts: 199
Joined: Sun Sep 11, 2011 2:29 pm
Facebook Username: Judy Cole Mitchell
Location: NH

Re: Flaming Butt!

Postby JudyM » Sun Nov 03, 2013 12:05 pm

Thanks cr! (btw your song styling is hysterical) ok armed with drug names i will call the nurse or dr about getting some. unfortunately its sunday but ill try to get things started. the pcp is the only one trying to focus on pain mgmt, but he dorsnt know all the good stuff for RC. the onc doesn't focus on it much. in their defense, dh doesn't usually admit to much pain, and then lists it as 5! sorry, but pain that has him moaning and stuck in bed 80% of the time is not a 5. and just because he doesn't have any at the moment they ask does not mean he should simplybsay "no" . he's a hard headed engineer, what can I say.

thanks for the suggestions!
DH, 56yrs,
Dx 9/1/11,Stage 4 RCa with liver mets, 1N.
9/14 folfox-Avastin
4/12 erbitux & irinotecan
11/12 radiation + xeloda
7/13 small lesions in both lungs, some nodes, liver gone beserk
8/13 folfiri+zaltrap
11/21 chemo fail.
121-20 flown away

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CRguy
Posts: 10096
Joined: Sun Feb 10, 2008 6:00 pm

Re: Flaming Butt!

Postby CRguy » Sun Nov 03, 2013 5:24 pm

We have the same problem with my Dad, feisty, crusty, tough old Scotsman who in his youth would not show pain if it killed him ..... ( that is another story for a later topic, involving a knife wound which came within an inch of his heart ! Told NOBODY and drove himself to ER when he "noticed" the blood :shock: WTF ? ) does not like doctors or hospitals..... Bad attitude for a cancer patient ( mesothelioma ) I am thinking.

Finally he had too much to deal with, was drugged up on opioids, which he does not do well on, and relented to go back to the specialists to get a new pain management plan. He has a VERY good primary physician and an incredible Onco, so once HE admitted he needed a pain plan they were already working on it ( including palliative IMRT therapy ) He does have Gaba BUTT it was included on top of everything else once a proper Dx of referred pain was made by the specialists.

Somtimes pain is inevitable in what we deal with ... but SUFFERING from it ..... IS NOT !

here's to Patient = 1 and pain = 0

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

deb1223
Posts: 65
Joined: Thu Jul 07, 2011 10:36 am

Re: Flaming Butt!

Postby deb1223 » Sun Nov 03, 2013 6:16 pm

My doctor gave me a prescription for nitroglycerin cream that had to be mixed at a compound pharmacy. Have to use very sparingly, no more then pea size at each application. Stop the pain and burning instantly. Watch using to much will cause severe headache if you do.

Debbie
52 Yr. old Female, DX July 2010
Stage IV CC, 21 mets to liver, 1 to lungs
12 Rounds Folfox
To date no surgeries
Enlarged spleen
Been on Avastin only since Mar. 2011
I WILL SURVIVE WITH GOD'S HELP!

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JudyM
Posts: 199
Joined: Sun Sep 11, 2011 2:29 pm
Facebook Username: Judy Cole Mitchell
Location: NH

Re: Flaming Butt!

Postby JudyM » Mon Nov 04, 2013 10:02 am

update: after web surfing to find various names those products might be listed under, I called the pharmacist! he never heard of proctosedyl either so it likeky isn't available in the us. thankfully you gave me the ingredients and functions so I went over those with the pharm and except for the anti infective, he's got all the others vas separate otc's. so he's setting them aside and giving me a big bottle to mix them all in and I'll pick it up today.

dh had a hydrocortisone suppository but it made things worse so he discontinued it (anucort).
DH, 56yrs,
Dx 9/1/11,Stage 4 RCa with liver mets, 1N.
9/14 folfox-Avastin
4/12 erbitux & irinotecan
11/12 radiation + xeloda
7/13 small lesions in both lungs, some nodes, liver gone beserk
8/13 folfiri+zaltrap
11/21 chemo fail.
121-20 flown away


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