Tenesmus Pain

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wife2jeff
Posts: 61
Joined: Thu Sep 12, 2019 11:21 pm

Tenesmus Pain

Postby wife2jeff » Mon Sep 30, 2019 12:27 pm

Is this normal to have this bad of tenesmus pain that you can't even sit down? Since we are still trying to get his bowels on track if he goes the other way and has diarrhea it starts the tenesmus pain bad. It takes hours before it will calm down. Has anyone else experienced this? It's not just when he has to go it's just a constant spasm contraction that is painful.

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Tenesmus Pain

Postby NHMike » Tue Oct 01, 2019 11:06 am

My pain levels after the reversal could be quite sharp but I could sit and drive with the pain. I'd say that the pain from radiation was a lot worse for me.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

wife2jeff
Posts: 61
Joined: Thu Sep 12, 2019 11:21 pm

Re: Tenesmus Pain

Postby wife2jeff » Tue Oct 01, 2019 11:14 am

His is a cramping and it's like a spasm where his bowels want to open like he has to use the bathroom, but the cramping pain is extreme and once it starts with an episode it's constant for hours.

Tupelo honey
Posts: 42
Joined: Tue Jul 19, 2016 7:57 pm

Re: Tenesmus Pain

Postby Tupelo honey » Wed Oct 02, 2019 1:06 pm

I had this, along with rectal bleeding from the need to push. It was very compelling and uncomfortable. Sometimes in the bathroom doing little or nothing except pushing 25 times in an hour or two. As I mentioned before, with no help or diagnosis from the doctors, I took a combination of Imodium and / or Tylenol to tamp it down. At the height of it, I was up to six Imodium at a time and a couple of Tylenol 3s. The doctors were ok with this but I don’t think they ever really understood what I was going through. Also had to start taking fiber and miralax to keep things moving. It’s a truly miserable situation.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED
11/2019 NED

User avatar
Rob in PA
Posts: 1998
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Tenesmus Pain

Postby Rob in PA » Wed Oct 02, 2019 1:15 pm

Unfortunately, this is a very real situation and I don't think that doctors, especially family doctors, understand the level of pain Tenesmus can cause during flare-ups.

I truly believe that those of us battling and winning our cancer fights become "programmed" to tolerate more pain than most people because our number 1 priority is living and number 2 is "everything else"!

I hope the day comes when there is a treatment for this that is 100% guaranteed to make the pain stop. :cry:

CRguy had some great info on some treatment procedures in another thread on this site.

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

Tupelo honey
Posts: 42
Joined: Tue Jul 19, 2016 7:57 pm

Re: Tenesmus Pain

Postby Tupelo honey » Wed Oct 02, 2019 1:18 pm

I’m not sure what treatment your husband has had or is currently going through but here’s a thread I posted when I was at the height of my issues. I don’t think too many people experience this and so I really did not get a lot of answers.
viewtopic.php?f=1&t=55888&p=442112#p442112
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED
11/2019 NED


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