Tired of rectal pain, considering ostomy; Any thoughts?

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sid1968
Posts: 10
Joined: Tue Dec 01, 2009 9:07 pm

Tired of rectal pain, considering ostomy; Any thoughts?

Postby sid1968 » Fri Oct 25, 2019 3:23 pm

I've been on this journey for almost 20 years: LAR at 43, "cured" at 49, local recurrence at 52: surgery (part of sacrum/coccyx removed) , chemo, radiation. It was after the radiation got going that the big pain started, and I lost my ability to sit. Pain was poorly managed by a pain doc now undergoing adjudication for questionable relationship to pharma manufacturer. Was on massive doses of fentanyl/oxycodone. Lost my ability to defecate: doctors blamed this on my narcotics habit, but I think the surgeries and radiation also played a role. Now I help defecation along with a gloved hand. PT to learn how to sit again. Lung met at 55: wedge resection. With pelvic floor PT, I have managed to cut back substantially on the narcotics, still on 24-hour dosing, still having lots of pain. Two kinds of pain: what feels like a pronounced urge to defecate even though there's (probably) nothing there AND (usually upon defecation) agonizing rectal burning sensation. I want to get off the narcotics, but there's too much pain. I am unable to participate in life as fully as I would like and I am just tired of the rectal pain!!!!

Is there anything else I could do besides an ostomy? Was hoping to reverse the ostomy after I stopped taking opiates: does this sound plausible? I have gotten some relief from the burning with Canasa (mesalamine) suppositories. I used CBD oil suppositories successfully to address rectal spasm.

Thank you for reading!
resection for Stage 1 rectal ca Jan 2001, age 43
met to coccyx, part of sacrum Oct 08, surgery Nov 08
Folfox, 12 rounds, Feb 09-Sep 09
radiation Mar 09-Jun 09
funky lung CT Feb 2011; biopsy failed
met to lung resected Aug 2012

ams5796
Posts: 2297
Joined: Fri Feb 06, 2009 10:07 am

Re: Tired of rectal pain, considering ostomy; Any thoughts?

Postby ams5796 » Sat Oct 26, 2019 9:13 am

Maybe enemas would be difficult with rectal pain. I do think many of us (rectal cancer survivors) do have rectal pain and we find that daily enemas help with that immensely. Maybe you can try gentle enemas while you wean yourself off the painkillers. I would be hesitant to get an ostomy again until I knew I had exhausted all my options. You may find that a lot of your pain problem is associated with the constipation from opiates.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Tired of rectal pain, considering ostomy; Any thoughts?

Postby teachpdx » Mon Oct 28, 2019 11:25 am

I don't have any suggestions for you but you have my sympathy. Sorry that you're in such pain. Peace, Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!


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