Tenesmus + Flat stools for 15 years... I'm Desperate!

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eternity67
Posts: 4
Joined: Sat Feb 22, 2020 4:54 am

Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby eternity67 » Sat Feb 22, 2020 5:05 am

Hello Everyone,
I'm 44, about 15 years ago, I had a terrible food poisoning, I actually "slept on the toilet" for 3 days...(such a big mistake).
After it went away, the feeling of "having to go" (ie tenesmus) didn't went away..
I have done bloodworks, sigmoidoscopy and colonoscopy which were ok, nothing abnormal. the doc just said "its IBS learn to live with it"... and it's hard. so i went to psych, that gave me SSRI and xanax, after 1 month of treatment, the tenesmus went down at about 90% but was still present at night. but i lived with it for 10 years.
5 years ago, it came back, bigtime, this time i didn't agree to "let it go" and since then i have been to dozens of treatments, chekcups, tests...
Tried everything from western medicine, to alternative.
done defacography, colonoscopy, hypnosis, over 40 ssri's anti psychotics, anti anxiety, psychological treatment, direct injection of lidocainee and steroids to the area, physical therapy (3 different therappists), 6 gastro's, execrcise, marijuana (different strains), CT, MRI, xray, there is not a test i havent done. spent 10's of thousands of $'s on docs tests etc (everything done private or with the insurance), and i have noticed, the more it bothers me, the flatter the stools. I'm at a loss now, doesn't know what to do... tenesmus & ribbon shaped stools, no blood, no pain, going once a day so no constipation or diarrhea. nothing helps, my life are just one big nightmare... help????

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby Lee » Sat Feb 22, 2020 1:41 pm

I am so sorry for what you are going through.

I do have a recommendation, butt it is drastic, a permanent colostomy. I do have one, butt this is why I'm suggesting it.

I am a rectal cancer survivor, radiation destroyed most of my rectal muscles, I had no control. Getting the bag gave me my life back,. Butt 6 months prior to my surgery, one of my brother's best friend ended up getting a permanent colostomy for a non cancer issue. Can't remember if it was Crohn's Disease, IBS or whatever, butt he was tired of living with the pain in his colon after so many years. His doctor recommend taking his colon out and getting a permanent colostomy. He did and problem solved. Like me, getting that bag gave him his life back. He was sorry he did not do it sooner.

In your situation, I don't believe you would need to get your colon removed, butt if I under correctly, your rectum is the problem. Nothing has helped so far. Has anyone recommended this to you in the past? If not, maybe something to look into. Your rectum would be totally removed, and you would be sewn up back there.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

eternity67
Posts: 4
Joined: Sat Feb 22, 2020 4:54 am

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby eternity67 » Sat Feb 22, 2020 2:56 pm

Hi Lee...
That's the problem, that there is no problem, done manometry and other pressure tests for the anus area, all came back well .. no problem there..
The only thing a CT scan found is some oily residue and thicker walls at the terminal ileinum (hope i'm saying that alright) getting my CTE tomorrow to see if there is something wrong there. CRP & bloodwork will not show anything out of the ordinary. i don't think taking out my entire colon will be a solution since we don't know where the problem is. if all will fail i will ask to do it, but it changes when my anxiety levels change, but being on so many psych drugs and no change ... just a question, maybe you know the answer.. does the small intestine goes all the way to the lower belly and groin area? that low? my "pressure spot" is about 10-15 cm above the anus.
thank you for taking the time to write..

Zod
Posts: 30
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby Zod » Sat Feb 22, 2020 4:21 pm

Did you try enemas? Some people with LARS do daily enemas (takes 1/2 to 1 hour) and are done for the day with pooping.

eternity67
Posts: 4
Joined: Sat Feb 22, 2020 4:54 am

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby eternity67 » Sat Feb 22, 2020 4:29 pm

Yeah.. Tried enemas.. Even when I'm totally empty this damn feeling just won't go away

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby Lee » Sat Feb 22, 2020 4:47 pm

Zod wrote:Did you try enemas? Some people with LARS do daily enemas (takes 1/2 to 1 hour) and are done for the day with pooping.



He does not have LARS, butt rather tenesmus. My understand this is a cronic condition where he constantly feels like he need to evacuate his bowels. Even after he evacuate his bowels, that feeling that he has got to go does not go away. Thus my recommendation, sounds like he has tried everything else.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby Lee » Sat Feb 22, 2020 11:53 pm

eternity67 wrote:Hi Lee...
That's the problem, that there is no problem, done manometry and other pressure tests for the anus area, all came back well .. no problem there..
The only thing a CT scan found is some oily residue and thicker walls at the terminal ileinum (hope i'm saying that alright) getting my CTE tomorrow to see if there is something wrong there. CRP & bloodwork will not show anything out of the ordinary. i don't think taking out my entire colon will be a solution since we don't know where the problem is. if all will fail i will ask to do it, but it changes when my anxiety levels change, but being on so many psych drugs and no change ... just a question, maybe you know the answer.. does the small intestine goes all the way to the lower belly and groin area? that low? my "pressure spot" is about 10-15 cm above the anus.
thank you for taking the time to write..


Don't know where you live, butt sometimes getting to a major well know hospital might be the solution. Maybe finding a well know GI doc might be helpful. Or I'm going to suggest, a major cancer hospital like MD Anderson.

If you are in the pain that I think you might be in, "living with it" is NOT the solution. Let us know how tomorrow goes.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby Lee » Sun Feb 23, 2020 12:38 am

eternity67 wrote:Hi Lee...
... just a question, maybe you know the answer.. does the small intestine goes all the way to the lower belly and groin area? that low? my "pressure spot" is about 10-15 cm above the anus.
thank you for taking the time to write..


Missed this the first time, NO, the small intestine does not go all the way to the lower belly and groin area. There is the smaller intestine and the larger intestine. The larger intestine is your colon. This is the area (colon) that a colonoscopy looks at. To see the smaller intestine, I believe you need to swallow one of those camera pills.

If they, your doctors, know your pressure point, that to me is a step in the right direction. Maybe work from there.

good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

3Lions66
Posts: 5
Joined: Fri Feb 21, 2020 6:43 pm

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby 3Lions66 » Mon Feb 24, 2020 6:24 pm

To the original poster: I felt like I needed to poo constantly prior to my sigmoidectomy 2 weeks ago. I'm still in a lot of pain, but in addition to avoiding cancer, this surgery binned that constant feeling of needing to evacuate one's bowels. Good luck mate.

boxhill
Posts: 527
Joined: Fri Apr 06, 2018 11:40 am

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby boxhill » Mon Feb 24, 2020 8:42 pm

I don't know if it is of any possible use, but there was a poster here, TinaFish, who was plagued by tenesmus, and she found relief from a drug called buscopan, and to some degree from another called Bentyl.

TinaFish, if you're out there, I think of you often and hope things are going well for you. (I wish there was some way to send an email to former posters who suddenly disappear. :( )
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

3Lions66
Posts: 5
Joined: Fri Feb 21, 2020 6:43 pm

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby 3Lions66 » Mon Feb 24, 2020 9:37 pm

Bentyl is for cramping pain I think.

eternity67
Posts: 4
Joined: Sat Feb 22, 2020 4:54 am

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby eternity67 » Tue Feb 25, 2020 12:00 am

Hey.. Thank you for your answers..
@3Lions66 .. so they took out the sigmoid area? do you use a stoma? or they reattached it directly to the large intestine?
@boxhill .. i will try to get my hands on some buscopan.. it's not available here (israel) but i'll get it somehow.. i'll look for tinafish, ADMINS? is it possible you can locate a member and reach out?
thank you for your time and help...

Rock_Robster
Posts: 497
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby Rock_Robster » Tue Feb 25, 2020 7:06 am

eternity67 wrote:@boxhill .. i will try to get my hands on some buscopan.. it's not available here (israel) but i'll get it somehow.

It’s available over the counter in many countries (including here in Australia); from memory I think TinaFish bought it on Amazon. I just started taking it again today to see if it helps with tenesmus after my ULAR & reversal (after this thread reminded me it existed!).

Good luck
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

3Lions66
Posts: 5
Joined: Fri Feb 21, 2020 6:43 pm

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby 3Lions66 » Tue Feb 25, 2020 1:38 pm

Rock_Robster wrote:
eternity67 wrote:@boxhill .. i will try to get my hands on some buscopan.. it's not available here (israel) but i'll get it somehow.

It’s available over the counter in many countries (including here in Australia); from memory I think TinaFish bought it on Amazon. I just started taking it again today to see if it helps with tenesmus after my ULAR & reversal (after this thread reminded me it existed!).

Good luck
Rob


Yes mate, I had a resection--NO BAG! Thank G-d I had no bag. I doubt I could live the life I want with a bag.

Siti
Posts: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Postby Siti » Tue Mar 03, 2020 12:53 am

Sorry a little late with a reply. My husband had severe cramps and also in constant urge to evacuate — with the advice of some amazing folks here, this worked for him. Psyllium husk every morning (sometimes evening too if symptoms continues), proactively takes loperamide (Imodium) every morning up to 3 times a day on the days he’s on oral chemo, and Buscopan if he feels cramps are about to start. He finds being proactive works so he does it as part of his routine now.

There are some foods he can’t tolerate anymore, for example sashimi or large quantities of cheese or milk.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!


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