Pain in the butt

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bhall12
Posts: 3
Joined: Thu Feb 18, 2016 10:22 am

Pain in the butt

Postby bhall12 » Thu Jul 28, 2016 9:06 am

Ok, I've been here awhile. Lurking, reading, laughing, crying along with all of you. Every step along my journey there has been a topic that has helped me cope physically/mentally with various aspects of this disease. However, recently I have added irinotecan to my cocktail of choice along with the avastin/5FU. My problem that I have been having is my butt is on fire, I swear I am going to look down there and see flames. It's not like I use that exit any longer with the ileostomy that I have in place. I have been using some prep H and that seems to tame the monster for awhile but it eventually comes back. I see the doc on Monday but wanted to see if any others could chime in on workarounds they use/heard of. thx. Brad.
36 yrs old
1/20/15-- colonoscopy Mass found, 7 mets in liver 1 in lung. CEA 125
2/15-- started Avastin, Oxy, 5FU (neuropathy got me)
8/16-- after multiple rounds lots of shrinkage surgery to remove primary in colon/liver resection/ablation/ileostomy
11/15-- Two mets in liver pop back up, lung tumor still present. Start avastin/5FU again
3/16-- everything holding stable
6/16-- some changes in the liver and 2 mets in lungs now
7/5/16-- Added irinotecan/avastin/5FU

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Pain in the butt

Postby midlifemom » Thu Jul 28, 2016 9:24 am

Sorry to hear.
Try Calmoseptine. Helps me.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Pain in the butt

Postby MissMolly » Thu Jul 28, 2016 9:56 am

With a diverting loop ileostomy in place, the source of your anal distress is likely of one of two different sources.

Possibility number one:
With a loop ileostomy, you actually have two stomas/openings from where the intestine was brought to the surface of the abdomen and sliced length-wise and then folded-back upon itself.

You have a working stoma, the upper stoma, that is the exit of the upper digestive system/small intestine from which active foodstuff is exiting into the pouch.

You have a mucus stoma, the lower stoma, that is communicating to the lower digestive system that is resting and in temporary retirement. Although no active foodstuff is passing through the lower digestive enzyme, from time to time foodstuff/fecal output will migrate from the working stoma and into the mucus stoma . . . down the hatch, so to speak, traveling down the resting lower digestive tract and out the anus. Because ileostomy output is very high in corrosive digestive enzymes (due to lack of the diverted large intestine to uptake water and digestive enzymes) fecal output that passes through the mucus stoma and out via the anus will seriously irritate and burn the anal tissues.

Use of a barrier cream with zinc can be quite helpful. The suggestion give by midlifemom for Calmoseptine is equally good, if not better.

Possibility two:
Feces/Poop contains short-chain fatty acids that serve an essential role in nourishing the tissues of the rectum and anus. Yes, feces/poop has a designed purpose and importance. Feces/poop is not a meaningless byproduct of digestion.

In an resting lower digestive system that has been diverted with an ostomy, lack of regular passage of feces/poop leads to tissue irritation. The tissue irritation can be quite severe and is often accompanied by an altered bacterial flora.

The term used by physicians is "disuse proctitis." Meaning: Inflammation, often severe, of the rectum due to lack of use in the presence of a diverting ostomy. Lack of use also implies lack of the presence of short-chain fatty acids normally present in feces/output.

Treatment for disuse proctitis is often a short-term prescription of Flagyl or Cipro (antibiotic) and/or a topical corticosteroid cream or foam or suppository.

There are pads designed to contain anal discharge. Mucus anal discharge can be particularly annoying and a messy nuisance.

Look at Amazon.com or Walgreens for a pad called the "Butterfly Pad." There are versions for men and women. It is a butterfly shaped pad that is designed to fit between the cheeks of the buttocks. I have a 1/2" rectal stump that still produces mucus . . . heck, it still "thinks" that it is a rectum. The Butterfly pads have been nothing short of a God send. I highly, highly recommend the Butterfly Pad for anyone with annoying anal discharge.
- karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.


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