What keeps yours under control?

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Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 7/9/2008 12:51 PM (GMT -6)   
I am curious to hear about what keeps people here in remission. I am sure were not all flaring. I would consider a good remission <5 controlled BMs per day without blood or mucus.
There have been recent posts about Spinach, Haldi, Probiotics, Digestive advantage, etc. and they work wonders for some poeple.
Please if you are in remission give us more info on how you think you accomplished it and what helps you maintain it. Like princesa said on another post that she owes her well being to change in lifestyle, therapies and maintenace meds. If you wouldn't mind elaborating a little that would be appreciated.
If one thing is helping most or a combonation of things please tell...
                                                                                         
28/M/TX single parent of gorgeous 2.5yo girl (revised 5/8/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  6th week flaring;improving; 2bm/day; very little blood
RX/day:  Currently 10mg of prednisone per day. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: food combos, enzymes, good posture, chewing more, etc.


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 7/9/2008 1:27 PM (GMT -6)   
Not sure what keeps me in remission without any meds, maybe the decrease in potatoes and increase in salads with garlic. I personally believe my colitis flares when I have a pathogen that triggers it and then my body fights it, then I go into remission.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


cycling_sasquatch
Regular Member


Date Joined May 2007
Total Posts : 169
   Posted 7/9/2008 1:43 PM (GMT -6)   
Drugs. Particularly the Imuran. At least I think so. I also take probiotics, which I think help. I don't dare mess with either one, though, to see what is and isn't working. Right now my gut is content and I don't want to screw it up if I can at all help it.
UC diagnosed Dec. 2006
Azathioprine 200mg/day
Prednisone 0 ! (After nearly 1 year)
Multivitamin, B complex vit., fish oil, fiber supplement, Nature's Way Primadophilus Optima, Digestive Advantage Crohn's & Colitis


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 7/9/2008 2:08 PM (GMT -6)   
I don't think I'd call 5 bms a day remission.....that's a personal opinion not based on fact.


I use 5ASA meds...Asacol and Salofalk retetion enemas and would be considered in a perpetual remission.
One or two bms a day depending on what I eat. I don't care about the consistency, because some foods will loosen the stool.

If bms are increased with urgency and rectal discomfort/agony within a day or two, that's a flare for me. I never wait to increase the enemas.

I've recently switched to the 2gram dosage, so am at every third night at this time.

I know I'm a med-lifer...the last c-scope says it's all good, so if that's what it takes, that's what I do.

I pretty much eat what I want, but it's a balanced diet having my cake and eating it too.

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 !!!


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 7/9/2008 2:16 PM (GMT -6)   
I'm never sure when to say I'm in remission. Basically if the scopes say there is no active disease, than I suppose that would be it. But even then I've had them tell me that once and I was still feeling terrible.
But I sometimes go two days with only a few BMs, no pain, whatever, but I wouldn't say I'm in remission, especially since after a few days of no BMs I'll be in the bathroom all day in agony. Sometimes I just get stopped up, probably too much Immodium, I dunno. Right now at this very moment, I don't feel crampy and I'm not having blood but there's lost of mucous and I feel achey, run down, and nauseous.

I haven't found a med combination that keeps me in remission yet. Smoking did it once, but I don't want to start again.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar region of the spine from long term prednisone use. 

Currently unmedicated and flaring :(
Waiting for my appointment with the new GI on July 18th. Insurance finally kicked in, hooray!

 
 
 


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 7/9/2008 2:52 PM (GMT -6)   
OK, Remission to everyone is different. I'm going to the bathroom 2-3 times a day with good control but I don't consider myself in remission b/c I'm on 30mg prednisone...
 
BUt there are lots of poeple in remission that can contribute to this thread. THanks Q for your response. I have always been curious about you. and by the way I had a tiny amount of blood and looser stool today and I blame it on the absolutely delicious apple cobbler I had yesterday.

PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/9/2008 2:56 PM (GMT -6)   
quincy,

Can I borrow your doc???? Mine told me a year ago remission was less than 10 BM a day . ..I tend to not agree with that myself but since I only go about 6-8 times in a day (starting with waking up about 3am) he says that's good enough and doesn't seem to want to help . . .maybe I should lie and tell him it's 12 lol.

Got2Believe,

Whether I'm in actual remission or not I have no idea I just avoid foods that I have found to bother me and I'm currently trying to improve myself by taking probiotics. I find when I am more active walking, hiking, gardening I am more tired but my gut is less active so I try to get good and tired every day (o:.
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36
"The List "
- UC 1997 currently unmedicated was on Colozal from 2001-2007
- Stage 3 CKD (Chronic Kidney Disease) 2007 taking 7.5mg lisinopril
- Anemic - Ferolicit IV bi-weekly
- Allergies - skin hives when exposed to water - Zyrtec 10mg
- haven't been tested officially but pine is also suspected


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 7/9/2008 3:29 PM (GMT -6)   
I also don't consider anyone on pred to be in remissiob. Acually, I've never used the word with my doctor and he hasn't either...interesting.
Controlling and treating is more my goal...I don't care if I'm on meds or not. My doc does want me on the lowest possible for long-term. I did try to be off the meds, but ended up back on...so maintenance is where I stay. I've been compliant from day one but have freedom to experiment ....ignorance is bliss but the pay-off has been huge.

I'd love for everyone to have my doc....but I have to consider that not all would possibly like him based on their situation and what can be done medically. I only know one person with UC who sees him, and it's possible that the big gun meds will have to come out for her.

10 bms a day is good enough?? yikes. But, there are some doctors who don't consider a patient good enough to "treat as a flare" until they bleed. I hadn't bled for over 14 years...I'd freak if my doc didn't deal with all degrees of inflammation, not just the most obvious. No wonder some patients suffer needlessly.

I'm fortunate that I can use 5ASA meds and am obviously NOT sensitive to salicylates of any kind so far. That could be part of the success I have because I do take aspirin as well with the reluctant OK of my doc...I've promised not to take ibuprophen for sure.

G2B...Food won't cause bleeding....the bleeding would mean that the lining is in a fragile state. Try not to make it about food... do try rectal meds..can you not take 5ASAs?

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 !!!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/9/2008 3:46 PM (GMT -6)   
Remicade. End of story. Not 5-ASA's, not Imuran, not rectal meds, not diet changes, probiotics or other herbs or crystals. Not exercise, not accupuncture, not healers or curanderas. Not even Prednisone. If Remicade didn't exist, neither would my colon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/9/2008 8:46 PM (GMT -6)   
Initially Asacol. Then it was Imuran. Now it might be Remicade - but I'm still on pred, so I don't consider myself in remission, yet. Give me another week to get off of the pred and then a few weeks to see how things work then.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
10mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/9/2008 8:50 PM (GMT -6)   
I think I have less symptoms when I am not real stressed out and when I am eating very healthy and drinking lots of water.
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 7/9/2008 10:19 PM (GMT -6)   
Remicade.

Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/9/2008 10:33 PM (GMT -6)   
I've never been in complete remission, but I currently have no bleeding and about 2-5 BMs/day, so I'm pretty much under control. 12 Asacol per day and daily Rowasa in combination with daily Canasa and a nightly probiotic got me to my current state. I think getting a lot of sleep is also very important.

PeanutMom - Your doctor should not be allowed to practice if he's telling you anything under 10 BMs a day and waking up at 3 a.m. to have a BM is acceptable. I would find a new GI ASAP if I were you.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/9/2008 10:40 PM (GMT -6)   
PeanutMom, may I suggest you seek a second opinion? Ten BM's a day wouldn't be acceptable to me, and I think the patient who's living with it should be the judge of what is acceptable. Pompous doc, it's easy for him to say - he isn't the one running to the bathroom ten times a day.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 7/10/2008 6:00 AM (GMT -6)   
Remission for me would be 1 or 2 fully formed bowel movements a day with no urgency, cramping, pain, bleeding or mucus. I've only been there once and that was on Pred. Currently I'm in a flare which has lasted for 6 weeks, no bleeding though and not to much urgency with bowel movements between 2 and 4 a day.

I just started LDN and must say it has really improved things. MUCH more energy, better sleep, no pain (apart from a bit of wind) and better skin/hair. I really really hope it continues to work...
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 2 a day
Also taking VSL3 X3 a day
Just started LDN 4.5mg


puglover13
Regular Member


Date Joined Aug 2007
Total Posts : 25
   Posted 7/10/2008 7:05 AM (GMT -6)   
Jerry Garcia-
What's LDN?
For me, Remicade has been a life saver.  I'm down to 2-3 NORMAL BM's/day, and my GI is starting to taper down my other meds.  Her goal is to have me on  just the Remicade and a low maintenance dosage of Asacol.  My energy is already starting to improve.
Diagnosed UC June 2007 (mis-diagnosed with IBS for 3 years)
Current meds: Asacol 9/day, iron, multivitamin.
6-MP 50mg, Cortenema, Remicade, Lexapro 10mg/day


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 7/10/2008 8:51 AM (GMT -6)   
LDN is Low Dose Naltrexone. It's not sanctioned for the treatment of UC but there are a lot of people using it with great success. I'm sure if you run a search in google you'll find plenty of info.
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 2 a day
Also taking VSL3 X3 a day
Just started LDN 4.5mg


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 7/10/2008 9:16 AM (GMT -6)   
Remicade is what makes my remission possible.

For me remission is 3-5bms a day of any texture excpet liquid. No urgency, no pain, mucous or blood...

It may seem like a lot of bm's to some but it depends where you started. I have never in my life had 1bm a day. If i did I may think something was wrong!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/10/2008 11:23 AM (GMT -6)   
I call my Remicade Remission.....and about 3 bm's a day; it kind of depends how much I eat the day before, and how big the meals were...sounds kind of strange, but that's my pattern and I'm sticking to it. :-)
Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 7/10/2008 11:44 AM (GMT -6)   
Limiting grains, processed sugar (actually any processed foods that come in a box or can with a label) and eliminating yeast keep me in remission with no meds. I also take probiotics, and routinely throw in natural antifungals. By the way, if the only symptoms one has are periodic urgency or more BM's per day (no pain, mucous or blood), how does one know whether UC has gone into remission and crossed over to become IBS instead?

basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 7/10/2008 11:52 AM (GMT -6)   
Oddly enough amitriptyline. Right after my bowel rest my GI did a colonoscopy and my colon was healed almost completely, but I was still having symptoms. He said that though my colon was healed my brain was so used to D that it was treating my body as though it wasn't healed.
After all of that I stayed on ami. and took maintenance asacol (I'm not even sure is asacol does anything for me but I'm not willing to find out!) I find that my remission is anywhere from 1 to 3 bms a day but sometimes I go without bms.
Sam
Diagnosed March 2005
Remission since January/April 2006 (incident with mono)
3200mg Asacol, 25mg Amitriptlyine, Ortho Tri-cyclen lo, Imodium when I need it
"If you don't like something, change it. If you can't change it, change your attitude"
Maya Angelou


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 7/10/2008 12:00 PM (GMT -6)   
Colazal, occasional Rowasa, daily multivitamin, Evian water, low salt, low fat, no caffeine, limited (sigh!) chocolate, no junk food, no carbonated drinks, rare alcohol, no otc pills-- listening to my kind of music & avoiding stress as much as possible. cool  Plus consulting with my IBD subspecialist gastroenterologist 2-3 times annually. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 7/10/2008 12:22 PM (GMT -6)   
i know i wouldn't have gotten into remission without MEDS. i had to do pred to get things to really turn around but got off that with no trouble and have stayed on asacol ever since. PROBIOTICS and FIBER do help a lot as well.
the most improvement (once i was no longer bleeding) for me has been made in cutting out processed food. it was surprising, really.
but there are also a couple of non-processed foods that irritate me a lot so the FOOD JOURNAL was the key to finding those.

it's really got to become a personal journey to learn about your body. take the advice and suggestions but don't force something that just isn't working for you.
29, happily married, stay at home mom to 2.5 year old son. due to have another boy 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.


LucyLadybug
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/10/2008 1:30 PM (GMT -6)   
Eating gluten free has made a big difference for me.  I've been gluten free for about five years now (taking no meds) and have had few flare ups until recently.  Either I'm taking greater liberties with my eating (I am, but not with gluten, just junk) or my hormones are changing as I age or both, but I've had several flare ups recently and am getting a bunch of tests done to see if anything has changed.  Overall, though, for the past five years, I've had normal bms.  I also credit Seasonale, this bcp where you get your period just four times a year, as a big help, too, as I used to get terrible upset stomaches just before my period every month, and the pill has helped with that greatly.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 7/10/2008 2:17 PM (GMT -6)   
Kim...the difference would probably be consistency and increase of symptoms if it's UC...but low level inflammation would probably cause intermittent symptoms as well as foods that would increase bowel activity or maybe a "bug" you've picked up and your digestive system is just doing its normal thing by getting rid of it quickly. Seems what you're doing is working. Since most of us have UC with IBS, it's difficult to tell sometimes.

For me, the rectal spasming and consistent rectal/anal urge, no matter how mild would definitely be UC. Of course those of us with hemorrhoids would sometimes have the consant rectal discomfort, but for me it's a different feeling. If I do have hemorrhoids and the feeling is consistent, a flare is right around the corner anyway if I don't deal with them.

I guess we eventually find out what our symptoms are and tune into them sooner than later.

Oh, are you still on the Beta Glucan?

q
*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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