What is a Flare-up or Remission

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 11/29/2008 11:35 AM (GMT -6)   
How would you describe a true flare-up or remission?

I am currently floating between both of them in a sort of limbo...

I have 10 BM a day with no blood but lots of urgency - would that be described as a flare or mild remission?

My doctor has been banging-on about surgery, but I swear I don't feel that bad?

G

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 11/29/2008 11:40 AM (GMT -6)   
10 a day is considered a flare. Ideally, remission is 1-3 bm's a day with no urgency, blood, D - basically not having any Uc symptoms. The main problem if you are having D and going that many times a day is that you run the risk of dehydration even if you're feeling good. Are your bm's solid or D?
 @--->--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-worked great!, OA
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 11/29/2008 11:58 AM (GMT -6)   
Definitely loose diarrhea with moderate cramping.

Could these be the symptoms that warrant going into surgery...

I have tried mostly all medications from 5-ASA's, immunosuppressants to biologics like Remicade and the Adacolumn.

G

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 11/29/2008 12:03 PM (GMT -6)   

I guess my next question is - do you take probiotics or fiber.  That certainly should help, I woudl think.  If you honestly have tried EVERYTHING - surgery can be a cure and maybe what you should consider.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Close to remission -spoke too soon!
 
 
 
 
 
 
 


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 11/29/2008 12:19 PM (GMT -6)   
I have tried Probiotics of all kind - everything from VSL#3, Culturelle, Acidophilus and Ecoli Nissle with no real effect.

As for fibre, I know for sure that Psyllium Husk gives me a laxative effect and dietary fibre just increases my output further...

G

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 11/29/2008 12:27 PM (GMT -6)   

Steroids?  I sure hope I never need them but they certainly have helped a lot here on the forum.  BUT - I never had more than say 5 BM's a day but I do have bleeding in rectum now.  How extensive does your colonoscopy show your UC is?  Maybe you also have IBS or digestive problem?

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Close to remission -spoke too soon!
 
 
 
 
 
 
 


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 11/29/2008 12:48 PM (GMT -6)   
Colonoscopy results show Pancolitis with severe inflammation all the way round.

As for steroids, I have used them extensively over the past 8 years and have noticed that they don't seem to work as well as they used to.

G

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 11/29/2008 1:21 PM (GMT -6)   
I would personally describe your symptoms as a flare and would go in for surgery. I'm currently having no blood but a lot of mucous and approx. 5 BM's per day, and I'm not considering that remission.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30384
   Posted 11/29/2008 1:57 PM (GMT -6)   
Gargamel....if you have exhausted all the testing to prove that you don't have anything else going on in your colon (invaders), meds aren't working and your quality of life is declining, I'd suggest surgery.

I personally don't think it's good for one to live with a diseased organ that's distressing the body having it in constant defensive mode.

I, if I were in your position, would have it as the next option.

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec 2 or 3  +   1 or 2 Primadophilus Reuteri Pearls @ bedtime
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 11/29/2008 3:52 PM (GMT -6)   
Thankfully Azathioprine keeps me in remission.But if I were in your position,having exhausted all those med options,and having that many BM's,especially with urgency,I'd be going in for a J-Pouch.I've been on the verge of it several times anyway,but as I say,in your position,it would be a definite.Of course,you may feel entirely differently,but that's my two pennies.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5957
   Posted 11/29/2008 5:00 PM (GMT -6)   
     The doctor who is pushing surgery...is he a colorectal surgeon or GI doctor?
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.


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 11/29/2008 5:26 PM (GMT -6)   
I've actually had two GI Doctors say surgery is my next option and I've seen a Surgeon who has also said that I am a good candidate for a Laproscopic Colectomy and J-Pouch.

I also have an appointment to see the same Surgeon this Tuesday to answer some of my questions regarding a possible surgery.

One of my main questions is going to be how long a J-Pouch will last and if it doesn't what other option will I have?
A permenant stoma is the last thing I need...

G

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/29/2008 6:14 PM (GMT -6)   

Since the jpouch is made with your own living tissue, small intestine, it will last your lifetime.  However, since the surgery is relatively new there are no long term statistics on this.  I do know people with jpouches that are 25+ years old and they are doing fine.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 11/29/2008 6:19 PM (GMT -6)   
Have you explored the Aloe meds? I just started reading about it in regards to UC. Some folks who have UC said it works. I just don't know too much about it.
___________________________________________________
 
Colazal - 9 pills
Rowassa Enema - 1 nightly
VSL#3 DS - 4 packet daily (perscription)
Multi Vitiam - 1 daily
Vitiam C - 500mg daily
Nexium - 1 pill daily
Asacol - 9 pills
Lialda - 4 pills daily
Culturelle- 1 daily


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 11/29/2008 6:50 PM (GMT -6)   
Have you attempted trying Humira? Have the Doctors suggested this drug to you? My doctor has told me that this is the last option for me that is. I'm on it and have been on it for a year and a half. I'm doing wonderful with it.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/29/2008 10:23 PM (GMT -6)   
Or even Remicade? And 10/day with lots of urgency is most definitely a flare, blood is not the only indicator of a flare, other symptoms can be present without blood in order to be flaring and most docs would describe your colon as looking like hamburger and wanting to remove it when it's to that degree, but if Humira or Remicade have not been tried and your docs are pushing for surgery and your colon doesn't resemble hamburger then they might be jumping the gun...ultimately though the choice is yours.

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


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 11/30/2008 9:52 AM (GMT -6)   
I have tried Remicade last year. I had 8 infusions with no effect.

As for Humira, I don't think its available to Ulcerative Colitis patients in the UK and as far as I've read, people who don't respond to Remicade usually don't respond to Humira either.

I was also offer a drug called Cyclosporine recently, but I flatly turn that down because of its safety profile.

G

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 11/30/2008 10:51 AM (GMT -6)   
I was on Remicade before Humira. Had horrible problems with the Remicade practically went into anaphalactic shock. Switched to Humira I went into remission. Sad to hear there are limited drugs in UK. Hopefully this gives u some hope or ideas.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 11/30/2008 11:25 AM (GMT -6)   
If I may ask, what part of cyclosporine's safety profile made you deny it? I thought Remicade and cyclosporine had dangers/side effects of a similar level.

Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 11/30/2008 11:30 AM (GMT -6)   
As far as I can remember my IBD nurse did mention that Cyclosporine can cause kidney failure.

Has anyone ever tried Cyclosporine and could it be used as long term drug?

I thought Cyclosporine was only used to delay surgery until a severely ill patient was strong enough to go for a Colectomy.

G

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 11/30/2008 12:38 PM (GMT -6)   
that's how it was explained to me too- that it gets you healthy enough to undergo surgery! But there is a poster on here who has had it twice, & not gone in for surgery. It is not for long-term use, but I think some people continue to take it orally after they are discharged from the hospital, where it's administered intravenously. It is dangerous- hence the need for hospitalization while getting the drug. The providers need to be able to check labs constantly, & have you right there in case anything should go awry. I don't think it's any more dangerous than Remicade, though- while they both have some pretty scary potential side effects, these are rare occurences. If you speak with a colo-rectal surgeon, they may want to stabilize you before they do any surgery on you.

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

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, April 22, 2018 6:47 AM (GMT -6)
There are a total of 2,954,169 posts in 324,088 threads.
View Active Threads


Who's Online
This forum has 162144 registered members. Please welcome our newest member, Kathy617.
328 Guest(s), 1 Registered Member(s) are currently online.  Details
OriolCarol