What is considered remission??

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kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 8/6/2008 4:56 PM (GMT -6)   
I guess I am confused.  What do all of you consider UC remission?  All symptoms gone? No cramping, no pain, no bleeding, etc. etc.  As you see in my signature I have been using Colazal and Protofoam for a couple months (along with suppositories for few weeks before).  Some symptoms are less - no diarrhea, less urgency, less cramping but not much less blood.  Bleeding is what scares me most and will that stop eventually? I have that every morning is all but enough to worry me.  Also, when I go out I take 1/2 Imodium or 1 sometimes - on worst day I had last week - I had 6 BM's - all with some blood.  Most morning after I take Imodium all is pretty normal except the blood.  Any more advice to heal my ulcers inside so the bleeding will stop or be only once in a while. 
What generally does a gastro doctor consider remission.
Thanks.  Elaine
68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Proctofoam once a day - added Colazal 3X2
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D
Finally seeing improvement 7/23/2008
 
 
 
 
 


Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 8/6/2008 7:39 PM (GMT -6)   
Remission = lack of symptoms. We all have our own degree of remission. Most would say it is like pre Uc days but others have a new "normal". But bleeding and D never means remission. For me, I know I am in remission when I stop bleeding and having D but I will never hard stool again. The best I can hope for is soft serve or what I call "poopie chips" :0)

I just wish there was some way for you to use the liquid retention enemas. I know you can't do them yourself because of your weight and arthritis but really these are the things that you need to get this under control. Because with the suppositories and foam you are only treating the rectal area so of course you are still going to have symptoms if your inflammation is above that. Is there anyway you can have someone do them for you or no?


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/6/2008 8:10 PM (GMT -6)   

Red - You know I have been married to a wonderful man for 47 years this month.  He has done a lot for me but to ask him to help me every day with an enema I believe is asking too much - maybe occasionally!  He is battling lung cancer and also arthritis in his hands, etc.  I just may have to ask and maybe we can work something out if my gastro doc thinks that would help more. 

I thought that the Colazal would heal the part above the rectal area - meeting from both ends - I think, however, you are right - that is a section there not getting help!  I see the NP on Tuesday.

Thanks!  I feel about 3/4 way to remission (at least what I could live with if you know what I mean)

Elaine


68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Proctofoam once a day - added Colazal 3X2
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D
Finally seeing improvement 7/23/2008
 
 
 
 
 


GangGreen
Regular Member


Date Joined Apr 2008
Total Posts : 44
   Posted 8/6/2008 9:04 PM (GMT -6)   
I agree with Red on remission.  I consider myself in remission (as does my doctor) but it is definitely different than pre-UC.  I still use the bathroom 2-4 times depending on the day, but it is usually a formed stool.  I also sleep the night without any urgency.  But if urgency, waking up, or more importantly, any blood, mucus or consistent diarrhea show up, I know there's a problem.  But I may have a bad day because something I ate didn't agree with me, but my day-to-day life is 100% better than when there's a flare.  I just had to learn to accept that I would never be "like before".  There's just a new "like before".

dx UC Dec. 2001
currently in remission
 
Meds: asacol 6(400mg)/day
         entocort 3(3mg)/day
         canasa 1(1000mg)/day
         Culturelle 1/day
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/6/2008 10:22 PM (GMT -6)   
U/C related bleeding is unfortunately a sign of not being in remission...going through that myself right now, but the rowasa are helping as the bleeding is getting less and less each day thank God.

colitis-owns
Regular Member


Date Joined Jun 2008
Total Posts : 41
   Posted 8/7/2008 2:00 AM (GMT -6)   

i class remission as having a major reduction in symptoms. I havent bled for nearly a year although i can still get cramps and D depending on what i eat.

I think even when in remission you have good and bad days.

 


Pan-indeterminate colitis
 
Pentasa 2g bd
Pentasa suppository 1 nightly
Azathioprine 150mg


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/7/2008 5:03 AM (GMT -6)   
Colazal is great for treating people with left sided but it can sometimes not be beneficial for people with sigmoiditis because it may not reach that far down. I say sometimes because I believe it depends on the motility of the bowel, ph levels and the distribution rate. Many meds don't treat the rectum which is why we have rectal meds. :)

I'm thinking that if only you can get yourself in remission by using a liquid enema (steroid or 5ASA), you may be able to maintain it with just the suppositories and Colazal. I'm so sorry to hear that your hubby has lung cancer. That is never an easy thing to handle when the one you love is sick with a deadly disease. But if he is up to it, maybe try to have him administer a liquid enema just for a few weeks, preferably longer.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 8/7/2008 5:39 AM (GMT -6)   
i think remission is absence of any UC symptoms. if you have symptoms you are flaring. end of story. the flare might be super mild all the way to severe, but symptoms are symptoms.

i was in remission for 6 months from dec 6 to may 29th. and that whole time, not one single symptom. nothing. its like i never had UC at all.
loved every freakin second of it too!

found out my grandma had cancer and stressed a bit and bam! -started with some D and mucous and then the blood came. thats a flare.
now the flare is bad. and it gets better some days and worse other days, but i consider myself still flaring if there are symptoms of any kind.

i bleed all the time at the moment. hence the iron infusions. i never worry about the blood as i am used to it in my case.
some people arent used to it and freak out, which is fair enough. i have lots of pain as well, but thats me again. everyone is different with different scales of symptoms. but id say if you have any symptom at all, then your in a flare. if you werent in a flare, then you would have no symptoms. simple as that.
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/7/2008 8:49 AM (GMT -6)   

Thanks everyone!  So happy to have found this group - others who understand and care.  I am a senior but doctor thinks my diagnosis over the years of IBS was probably mild case of UC.  First sigmoid when I was about 50 showed nothing serious - so still diagnosed with IBS.  So, now I deal with both as I understand - like someone said depending some days on what I eat, etc. 

I have appointment next Tuesday and will ask about enemas (I know doc wanted me to try them) but it is difficult to administer alone.  I have not ask my hubby yet but no doubt he would at least try to help for a week or so.  Maybe we can figure out some way for me to do it without sitting on the toilet.  I have to do that for the suppositories and foam.  I have extremely bad knees and shoulder problems!  Will to try what I can. I have some of the Rowasa from last year but could never get to try them as my husband was sick with chemo, etc.  The look like a LOT to retain!

Thanks again.  ElaineNY


68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Proctofoam once a day - added Colazal 3X2
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D
Finally seeing improvement 7/23/2008
 
 
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/7/2008 10:45 AM (GMT -6)   
Elaine, if you do start the enemas please let us know if they help ok? Yes it can seem like a lot to retain and you may have the urge to expel it especially if you are inflammed. But try to white knuckle it as long as possible. That feeling normally doesn't last too long. Also if you have your hubby try to administer them, have him warm it a bit beforehand by running it under warm water. This will help keep the cramping down to a minimum.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 8/7/2008 10:54 AM (GMT -6)   
Elaine, why not try to administer the enema while sitting on the toilet and then quickly going and laying down on your left side in bed. If that's the only way for you to adminster it, it's certainly worth a shot. Sometimes after I administer mine (in bed, laying on my left side) I need to get up quickly to do something, and if I lay back down, I don't have a problem. You would really benefit from the enemas. Good Luck.............
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/7/2008 11:59 AM (GMT -6)   
I thought that I had read on this forum and in other websites that taking Imodium too often can lead to toxic megacolon. Someone with more knowledge on the subject would have to comment on that, but I know I've heard that you shouldn't take it too often. If no one replies about that, you may want to ask your doctor to be sure.

As for remission, when I hear that word, I think "no symptoms, no meds." Just my opinion. I hope you get there soon. :-)
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG (as needed), Acidophilus 3X daily, Fish Oil and Multivitamin daily.
Diet/Exercise:  Sugar elimination.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/7/2008 12:23 PM (GMT -6)   

You are right about megacolon.  I ask my gastro doctor and we had a long discussion about using Imodium.  It is strictly used for symptoms on a once in a while basis.  I have NEVER been constipated that I can remember - have IBS with diarrhea only - plenty of water and colon movement.  I can take 1/2 Imodium and ok for all day - I take it after about 3 BM's to be sure my systom is working ok including no pain - just D.

I would like to be able to discontinue Imodium entirely or at least use only when traveling or when I KNOW there is no bathroom.  You have to be very careful.

ElaineNY


68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Proctofoam once a day - added Colazal 3X2
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D
Finally seeing improvement 7/23/2008
 
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 8/7/2008 12:30 PM (GMT -6)   
Elaine...you shoudl consider to use fibre supplements rather than the imodium...it will also help "exercise" your colon.

Are you able to do any exercise such as walking?

REgarding the foam enemas...you've only been using them for a few weeks, right?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/7/2008 12:46 PM (GMT -6)   
Well, I wrote a long reply and AOL ate it!! Hope AOL gets diarrhea!!
I can't take fiber until healed according to gastro doc. I have tried fiber supplements over the years but they always "tear" up my insides even when starting slow. I have IBS with diarrhea only - never constipation.
Anyway, doc said no fiber - just bland, low fiber until healed. So far I am following my doctor but so enjoy the advice here and know what questions to ask. Primal Defense now is really helping.
Thanks.
Elaine
68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Proctofoam once a day - added Colazal 3X2
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D
Finally seeing improvement 7/23/2008
 
 
 
 
 


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/7/2008 10:22 PM (GMT -6)   
The liquid enemas are certainly not easy to administer. When my husband needed them the only way for him to get them inserted without creating a mess and getting super frustrated was for me to do it for him. He would guide the insertion of the applicator. The first few times was a bit anxious for me as I wanted to be sure I wasn't causing any discomfort and was getting the medication into him at a slow enough steady pace. I can honestly say if I didn't step in and do this he would not have done them on his own. At that time he was so out of his mind with all that was going on he didn't have the patience to handle that on his own.

Even now with the cortifoam -I get it ready - he inserts it and I push the foam in and save a small amount on the exiting to use on the hemmorroid which the colorectal surgeon advised to be done.

As we speak, for the past 2 days he has felt exceptionally well. We are not getting too too excited but maybe this is the beginning of something good to last awhile for him we hope. (fingers crossed) He has not used the cortifoam for about 5 days as well.

That part has me a bit worried - I am not sure if that is wise or not. I will be watching very closely. I think I will call the Dr and just check and see what his opinion on the matter is. I would hate to see him take one step forward and two or more steps back.

Any help you can get from your spouse if he/she is willing to do so will help you deal with this as well. I'm sure it is not that easy for everyone to even ask for the help, feel embarrased or whatever. You might be surprised though if you ask and may find that he/she is more than willing to help. Sometimes that is all it takes is asking as the other might not want to pry or volunteer and make you feel awkward. Meanwhile nobody is asking anybody anything because of assumptions...lol.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/7/2008 10:32 PM (GMT -6)   
Check with your MD as most rectal meds work best as a daily or every other day 2 day etc treatment. I recently reduced my Rowasa because I was feeling so good and whamo an extra big wave of stresss and over eating too many carbs and I'm in a mini flair...the good news is its not a severe as my early flares w/o any meds, so the meds might not keep me in remmission more than every two months or so but at least the flairs are minor to moderate now thank the Lord.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 8/8/2008 12:37 AM (GMT -6)   
Rectal meds need to be tapered and one can find a maintenance dosage that best suits. It's basically an ongoing process rather than a goal. I have been as low as one every week for about 6 months.

Remember that rectal meds do come in various dosages and can be used daily if necessary for maintenance depending on how severe or stubborn rectal symptoms are. The goal, really, should be to be on the lowest dosage possible....that could be from liquid enemas to foams to suppositories..etc.

There are lots of options.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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