I feel like I have to go then I can't

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mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/20/2009 11:25 PM (GMT -6)   
Does anyone else feel this way during a flare. I will sit on the toilet and go a little bit then I want to get up but I feel like I have more to do. I feel the urgency and discomfort but I can't go. I have been spending so much time in the bathroom lately and it just hurts so bad. I'm thinking it is spasms.
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


Anthony1977
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Date Joined Jan 2009
Total Posts : 413
   Posted 2/20/2009 11:38 PM (GMT -6)   
You know, I was just going to post this very same thing. I have been on the god darn toilet like 10 times since 8 tonight and go a little come out get comfortable then I am right back in the john doing the very same thing. The spasms are pretty wicked too. I had just come down from 10mg of Pred to 5mg and all hell broke loose. Hope you feel better!

coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/21/2009 12:18 AM (GMT -6)   
this really happens to me when using mesalmine in the mornings

Jody
Age 34-Male-South Carolina
Diagnosed 02/08 Severe UC
Colazal Predinsone Entocort Lialda-No Help
Mesalamine-Little help
Remicade-Second infussion-still no change


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/21/2009 10:03 AM (GMT -6)   
yes, it's the most uncomfortable feeling... it generally happens when you're rectum is pretty badly inflamed, the inflammation causes a sense of "fullnes", even though ther's nothing to expel. I hate it! If this happens to me, I know I'm in trouble. Usually it gets better when the inflammation lessens. Sometimes you can ride it out, that feeling, by telling yourself "There's nothing there" & deep breathing. Other times you just gotta go sit there & strain, & pass blood, mucous, etc. Sorry!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/21/2009 11:13 AM (GMT -6)   
Never ever strain to pass anything. If there is inflammation, straining can actually cause more inflammation as well as bring on hemmies or aggravate them. I used to get that feeling in the past when I was flaring badly. I now get that feeling that I am empty, get up from going and then all of a sudden get hit with the urge again and I end up getting rid of more.

Are you not able to do rectal meds? If you can do them, then I highly recommend you give them a go because they really can help with that horrible feeling you are experiencing.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 2/21/2009 11:26 AM (GMT -6)   

My NP told me that is a "normal" flaring feeling - inflammation and swelling feeling like stool or ?  Anyway, two days on prednisone and it was gone.  I would think if you can take a rectal medication to reduce the inflammation in that area it would be the best.  I have had no luck with any - they all made it worse!  The feeling is terrible but DO NOT STRAIN!!   (unless cramping requires it) and try to relax.  Easier said than done!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/21/2009 11:38 AM (GMT -6)   
Sometimes I have those spasms in the evening. I've learned that if I give it just a minute, it often passes. Otherwise, I'm heading to the bathroom every 30 minutes with little happening. And my water bill is already through the roof! Eventually I can tell when it's really time to go.

That's when I decide I need to use some enemas, that the lower area is probably inflamed.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Probiotics (Ultimate Flora, 50 billion). Doing much better, but still having some bad days. 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/21/2009 12:32 PM (GMT -6)   
I know exactly how you feel. Part of my problem was the constant feeling of having D. So, when I had times of going going going I had more time just sitting sitting sitting b/c the feeling never went away. I had constant bleeding so that was always present, but I had the feeling of needing to do more.

I'm sorry you're experiencing the same as I did. It really is so discouraging. Especially when you have a little one at home and you wish you were there holding and playing with your baby instead of spending so much time in the bathroom. I kept a huge Sudoku book in the bathroom. It's quite obvious when I was super sick b/c I date puzzles once they're completed and if the dates are close together I've been in there a lot. : )

I do not have any advice or suggestions regarding how to keep this feeling from happening, as I never found a cure or symptom reliever. It was just always part of my problem. I am so sorry you're going through this.
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 2/21/2009 1:23 PM (GMT -6)   
YES. I was dealing with that constantly when I experienced a bad flare a couple months ago. I would run to the bathroom 15x a day and only go maybe 5x a day. Sometimes I would pass blood and mucus, sometimes nothing. It was the worst when it would happen right after using a Canasa suppository. I would always manage to poop out the medication and nothing else.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/21/2009 2:06 PM (GMT -6)   
Rectal meds should help with this issue....for me, cortifoam works the best.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/21/2009 3:19 PM (GMT -6)   
     Feel like that all the time while flaring.  I agree with Sherry.  Try the rectal meds.  If you have problems retaining the Cort enemas or Rowasa try Canasa suppositories.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 2/21/2009 3:54 PM (GMT -6)   
In conjunction to the rectal med suggestions....request an antispasmodic...it will help to at least take some of the constant feeling when the rectum is inflamed.

As well...if you do push...and that's such a relieving feeling momentarily...it can cause inflammation to be increased tenfold...even to the point of causing a prolapsed rectum.

Keep us posted as to how you're doing.
quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 2/21/2009 8:55 PM (GMT -6)   
I had that feeling shortly before being diagnosed. The MD that I saw took and X-ray and said I had a lot of extra stool. She didn't know why. I also had mucus but no blood. I didn't want to see a specialist at the time and I was sure it was nothing. My GI doc said uc is only blood and D, not constipation and other stool problems. I still wonder what was happening when I had those problems. I saw many different doctors and had some other health issues at the time. It can be difficult to sort out.

Hope you feel better soon.
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/21/2009 9:35 PM (GMT -6)   
Thank you for sharing. I am definitely not alone on this forum I haven't updated my signature. I stopped the asocal oral because it was going straight through. I have been doing hydrocorisone meds and I tried my Rowasa but ouch that really really hurt for some reason. My doc put me back up to 40mg prednisone. I am also taking probiotics=VSL3.
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/21/2009 9:39 PM (GMT -6)   
Pred is like a bandaid, once you've tappered off symptoms will likely return (and quickly, usually the lower you taper, the quicker symptoms will re-appear, you're better off asking for cortifoam during this time that you're on the pred if you want any chance at all to get your proctitis under control.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/21/2009 9:49 PM (GMT -6)   

Right now enjoying the "bandaid".  I think my doctor is tapering me down to the lowest to stay in remission, adding 6MP (or the like) - I will find out soon - on 20 mg. now. For me -  I would only consider a suppository now as the enemas and foam just made everything worse.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/21/2009 10:00 PM (GMT -6)   
I was responding to mjw82704....but also in your case kops2da, by not treating your proctitis with rectal meds it's bound to make things much worse than they are now...I'm talking from 18 yrs experiance.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/21/2009 10:15 PM (GMT -6)   

Thanks, I agree!  I just don't know what I could try next.  Thinking maybe like Anusol suppositories or something with LOW steroids.  All others were very bad!!  I could not administer enemas right and bleeding was much worse.  NO mesalamines - please!  I will ask my doc/NP!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far.  Plan on adding 6MP (or?) at lowest possible prednisone dose.
Probiotic Align, Prilosec for GERD
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/22/2009 12:32 AM (GMT -6)   
Hey kops2da, have you ever tried cortifoam enema? They're a steroid based foam and if you have success with oral pred then technically you should do well with the cortifoam, best of all no side effects from the cortifoam because not enough gets into the bloodstream as it does with oral pred (steroids).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/22/2009 1:41 AM (GMT -6)   
hmm Cortifoam might sounds like it might stay better.The antispasmaic meds also sound like a good idea.


Thank you,
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/22/2009 1:47 AM (GMT -6)   
Yes, I think (from my experiances) that's why the cortifoam is the only thing that's ever done the trick...if you've never tried it I highly recommend you ask your doc for it (am actually concerned as to why your doc has never tried you on it).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/22/2009 1:52 AM (GMT -6)   
Pb4,
I have never had a flare this bad so he never really needed to, but during this current flare I feel a little abandoned by my doctor. His focus is Remicade. Which is good but what about now? I have a life now. That being said he is my 4th doctor since I was diagnosed in 2001. He is the best of the worst. That is why I find I have to do a lot of research on my own:( I wish that I had a doctor who would try different things for me and not just stick with the same old regimen. It is hard to find a good doctor cry But I have to say that when I come to him with ideas such as the Low Dose Naltrexone. He did perscribe it for me so........
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/22/2009 2:46 AM (GMT -6)   
I too have had 4 GI's (over my 18 yrs of having this DD), good help is hard to find...When I was first new to this disease, I hung off of every word that my first GI said (or as I now call it, his verbal diarhea) it wasn't long before I figured out he was an idiot, no matter how many other dr.'s told me he was so great, I figured those other docs were idiots too (and I was right)...what I'm trying to get at is, with those yrs under my belt and my own knowledge of what I've lived and learned on the internet, I now TELL my doc what I need...infact, I don't see my GI on a regular basis, you know why, because he's done all that he can do for me, so when I need a script of cortifoam or anything I see my GP, tell him what to give me, for how long and what dosage...and he does, why, because he knows that I know better than he does and that I've been doing this way longer than many GI's have even been practicing.

Tell your doc you want cortifoam, don't ask him...if he's any kind of a good doc, he'll have respect for you, rather than look at you like your pathetic and rely soley on him in order to feel better (which obvious hasn't been really working out that way).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/22/2009 10:21 AM (GMT -6)   

pb4- I used Proctofoam for weeks with little results (I know it is not as strong of steroids).  Worst part was the application.  I really hate to say I have to do it on the toilet and then can barely reach because of my obesity and arthritis and so risk problems with injury, etc.  I would, however, consider trying it again and maybe not every night.  I really had best luck USING suppositories and keeping them in all night that is why they interest me. I don't believe the foam gets up any further because of the position I have to apply it in - although I lay on my left side at least 1/2 hour.

As for my GI - I rarely see him.  He has a wonderful nurse practicioner who listens to me and is compassionate to my needs, etc. They have regular consultation on each patient with another partner. Since I am 69 and diagnosed so late in life I am about their only NEW senior patient.  What has worked for so many did not for me.  I had to be very firm about not taking mesalamine any more.  Doc just thought (at first) that I was not willing to put up with the side effects to heal the UC.  That was not true.  I got VERY sick - no anemia or anything that showed up - but flu symptoms that threatened to keep me housebound and in bed.  Every time I tried something new - Colozala, Canasa, LIalda, whatever,  started to work a little and then all downhill - more pain, more cramping, more bleeding and chills, nausea, cramping in legs, etc.  SO - NO MORE!  Prednisone is working - what will happen next I don't know.  I have to call tomorrow or Tuesday about how I am doing. 

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far.  Plan on adding 6MP (or?) at lowest possible prednisone dose.
Probiotic Align, Prilosec for GERD
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/22/2009 2:54 PM (GMT -6)   
kopsda, I never lay down when I'd put my cortifoam in, I administered it while on the toilet, from behind, similar to putting in a tampon but instead of infront when inserting a tampon, I go from behind, leaning forward and I've never had issues with inserting it that way...the foam does expand when you administer it so I've alsways been confident that it's reached as high up as it's intended to.


:)
My bum is broken....there's a big crack down the middle of it! LOL :)

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