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Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 74
   Posted 3/10/2018 9:37 AM (GMT -6)   
Since my sigmoid two weeks ago that showed all clear other then 1.5cn of a small edema adjacent to rectum I have been having really aggravating tenesmus.
Perhaps one more BM then usual and no blood unless I really strain.
I have been taking cortifoam once a days and saloflak enema. Maybe it is all mental?
Any other suggestions? Is this a flare? Anyone who is doing well with remicade have this set back?
Thanks,
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade

quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 3/10/2018 9:57 AM (GMT -6)   
Not mental. You could ask your doc for an antispasmodic. I use dicyclomine 20mg.

How long have you been on the enemas consistently?
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5736
   Posted 3/10/2018 10:04 AM (GMT -6)   
All of my UC symptoms have been physical but it took time to figure out what caused what. Something in your rectal area is signaling to cause the tenesmus. Do you think you may be constipated and inflammation is stopping BM?

I eat some spinach or well cooked carrots and later things move better.Some people have good success with fiber pills, not me but luckily veggies work.

It's always about inflammation in my experience.
Diet=gluten-free modified Paleo+potatoes+low dairy, low grain, no seafood (IBS),low fiber diet
In remission April 2010 after 10 years of UC after no remission ever
gluten-free =bleeding stopped, dairy-free (less IBS) started remission path+food diary
daily: Balsalazide 750mg and 2 Ginkgold tablet
rarely: VSL#3, mesalamine enema, Canasa supp, Citrucel

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 74
   Posted 3/10/2018 11:14 AM (GMT -6)   
Thanks for the reply.
1. I have been on enemas for a week. I prefer them then the supp.
2. I am not constipated
3. Blood maybe once a week
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12551
   Posted 3/10/2018 6:10 PM (GMT -6)   
Tenesmus = rectal inflammation.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

UC experience: wakeup with noisy bowels so no lingering in bed, soon after poop with discomfort/pain/mild-nausea, eat something, poop, get dressed, poop, leave in car and worry whole drive about more...

quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 3/10/2018 11:32 PM (GMT -6)   
Stay on the enemas......till it eases. It can take weeks. Eventually, you can taper the steroid one.....replace it with a suppository, eventually taper the mesalamine enema with the suppositories and taper the enema to twice weekly.

The area of inflammation you have is difficult to treat, be patient but consistent in treatment.

I also suggest you add probiotics to your regimen.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

tiredofallthispoop
Regular Member


Date Joined Jan 2017
Total Posts : 95
   Posted 3/11/2018 9:11 AM (GMT -6)   
I used to have pretty severe tenesmus. I take one psyllium capsule a day and that seems to make a big difference (fwiw - the dose per the bottle is 4-5 capsules 3 times daily - hah!!)
F, 54, UC
Symptoms started January 2016, diagnosis July 2016 after colonoscopy
Balsalazide July 2016 - January 2017, Lialda 1 dose March 2017, no more mesalamines for me!
Predisone Sept-Nov 2016, Dec-Jan 2017, March 2017 - present, currently at 10mg
2nd colonoscopy August 2017, confirms left sided UC, cannot tolerate azathioprine,
next up Remicade?

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 74
   Posted 3/11/2018 12:32 PM (GMT -6)   
Thanks everyone. Quincy, do you think because the inflammation is so low down I should use supp over the enema. Is it common to have tenesmus without any blood?
Thanks,
Hugo
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade

quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 3/11/2018 10:01 PM (GMT -6)   
Use the options available, supps (steroid and mesalamine) in combo wih the enemas (steroid and mesalamine).
The supps can be used at the same time or separately.

I have tenesmus in a flare, and it's one of the obvious symptoms for me. Consider you already have inflammation and tenesmus.....so, bleeding isn't an indicator for it.....it can happen with the mildest of inflammation (and I know for a fact when my doc did a visual, and he said that the inflammation was so mild he could talk himself towards a flare or away from one). Since I had the tenesmus during that visual, he leaned to the flare (to which I rolled my eyes at the obvious)

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Post Edited (quincy) : 3/11/2018 10:10:48 PM (GMT-6)


Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2133
   Posted 3/13/2018 3:08 PM (GMT -6)   
tenesmus...is the worst thing ever!!!

Just reading that word brought back memories of the horror of it.

I read on here that if this happens its best to get off the toilet and lie down on your bed and stay still and apparently it goes away. That's not to say that you don't need treatment, you do, but this is something to try when you're desperate.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 74
   Posted 3/13/2018 5:31 PM (GMT -6)   
Yup, it may be the worst symptom that i have ever had. I will try the lie down method. What i find so strange is that i have no other visible symptom. I find when i keep myself busy I don’t seem to notice it. I would say that the tenesmus really corresponds with a loud stomach.
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 74
   Posted 4/1/2018 4:50 PM (GMT -6)   
Firstly, I know how lucky I am compared to a year ago when my remicade was evidently effective for my pancolitis and I left hospital.
However, my 1.5cm rectal inflammation is getting no better with daily salofalk enemas and cortifoam. Gladly it isn’t getting worse. Tenesmus worse in the am. Virtually gone after I exercise and mild urgency. I see blood maybe once every two weeks. I understand it is mild in the spectrum.
However it does really bother me and yes I ruminate about it constantly. When I was very ill last year neither prednisone nor meslamine were effective. Perhaps, I am simply resistant to it?
I go for my next remicade next week but my fecal calprotien results and my CRP are both pristine so not sure if it is a remicade level issue.
Any other suggestions or just more of the same?
Thanks,
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade

marcell
Regular Member


Date Joined Mar 2018
Total Posts : 128
   Posted 4/1/2018 5:01 PM (GMT -6)   
What's tenesmus? What do you feel?

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 4/1/2018 5:13 PM (GMT -6)   
It feels like you need to go, often when there's nothing there, or after you just went. It feels like pressure. Some people think they are constipated, because they feel the need to go & nothing comes out, but it's actually due to inflammation.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

marcell
Regular Member


Date Joined Mar 2018
Total Posts : 128
   Posted 4/1/2018 5:36 PM (GMT -6)   
notsosicklygirl said...
It feels like you need to go, often when there's nothing there, or after you just went. It feels like pressure. Some people think they are constipated, because they feel the need to go & nothing comes out, but it's actually due to inflammation.


I see. Sometimes I feel that, but I was always constipated. When diarrheas started I felt ok, because it was always hard for me to have my bowel working regularly. And when it happens you feel bad, anxious and feeling like something blocking the way. Feeling heavy is not nice either.

Post Edited (marcell) : 4/1/2018 5:58:48 PM (GMT-6)


marcell
Regular Member


Date Joined Mar 2018
Total Posts : 128
   Posted 4/1/2018 6:08 PM (GMT -6)   
One doctor told me that this is also a strong sympton of IBS, which I had.

adamas
Regular Member


Date Joined May 2017
Total Posts : 86
   Posted 4/2/2018 2:00 PM (GMT -6)   
Is it tenesmus if you often feel to pass and then you pass just gas, but being able to control the movement?

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12551
   Posted 4/2/2018 2:35 PM (GMT -6)   
Yes
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

You might have UC if walking the dog results in you pooping side-by-side in the bushes.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 4/2/2018 9:04 PM (GMT -6)   
adamas said...
Is it tenesmus if you often feel to pass and then you pass just gas, but being able to control the movement?


Not in my butt....

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Chiron
Regular Member


Date Joined Jun 2015
Total Posts : 228
   Posted 4/5/2018 12:00 PM (GMT -6)   
I was just going to post a thread about this. I am having tenesmus from hell right now. Seriously I am ready to shoot myself! If there is even the tiniest bit of formed stool in my rectum, even a grain, my entire rectum grips and contracts SO HARD to push it out. My rectum practically prolapses. I've had tenesmus before but this is unlike anything I've ever experienced!!

My abdominal muscles and pelvic floor feel totally ruined by this. I can't even pee properly now because of all the involuntary pushing and straining. I'll sit on the toilet with the intention of just squirting out the usual bit of mucous and blood, and then it quickly snowballs into bowel gripping so hard that my rectum is popping out. Total hell!!! Lying down doesn't really help it. Once it's done, it's done. My abs and bowel feel injured. The only thing I can do is eat liquids and avoid all fiber like the plague because it seems like solids trigger it. The only way to recover is to stop doing it!

My doctor prescribed buscopan to me today for this bowel cramping. I'm on the second dose and so far it does not appear to be making a huge difference. From reading HW just now I am learning about dicyclomine which maybe I should ask for instead.

I will do anything to stop this tenesmus and hell cramping!!! It has me screaming all night, every hour on the hour, no sleep, no rest! I'm also afraid to eat!

This disease is incredible. How did anyone survive with it 50-100 years ago? I guess they just died!

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 4/6/2018 2:59 PM (GMT -6)   
My doctor recently gave me an anti spasmodic. I haven't taken it yet. Could that be a possibility for you Chiron?
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. 40 mg of Pred, still waiting for a change!

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 74
   Posted 4/6/2018 8:38 PM (GMT -6)   
I recommend listening to Quincy and Ipoop and stick with the rectal enemas. I used cortifoam and meslamine enema for 4 weeks solid daily and my tenesmus has almost entirely subsided. SOmetimes it just needs a significant amount of time.
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade
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