will i ever be in remission - help!!

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saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/21/2009 12:20 PM (GMT -6)   
Hi,
Pls advise what i need to do.....
I started with canasa nightly and it helped for 2 months then re-flare before i could completely get out of the first flare, i then doubled canasa but no help! I started with Lialdax2 daily - this worked for 1 month now since past 3-4 days i have a small re-flare(just little blood) but i didnt want it to increase any further so i increased my Lialda to 3 a day.

i was wondering do medicines stop working on my body after 1-2 months? I am so worried :-( Are there others in this forum who have been through this.
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 6/21/2009 1:45 PM (GMT -6)   
Are you on both oral and rectal meds?

You might want to ask the doc for the retention enemas Rowasa (if you're in the US) as well as the Lialda.

I would stay at the Lialda dosage you're at...don't increase it, but do request the enemas...or use the Canasa two or three times a day.

I would recommend pushing for the retention enemas..however..my first choice.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 6/21/2009 7:44 PM (GMT -6)   
I don't know what kind of colitis you have (as in where in the colon) and I'd never heard of these medicines before I got to this forum, but I can say that you just got diagnosed in Janurary according to your signature, so try not to worry! Keep working with your doc, I'm sure you'll find something. It took me a while to get to remission. Good luck! =)
19yr old female
Diagnosed with UC (pancolitis) in 2005 at age 15, on 2.5 tabs of Azathioprine daily
Arthritis in both knees (thanks UC)
Also: asthma, acid reflux, and Reynaud's Syndrome


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/22/2009 3:18 AM (GMT -6)   
     Any reason why you stopped the probiotics?  I started them last year and the doctor said to continue with them.  I am in a flare (after only a seven month remission).  However, this flare is more tolerable than my last and I do not intend to stop the probiotics.  Just trying to "hang in there", sticking with my 75 MGM of 6MP, 25 mgm of prednisone (tapering to 20 today), Cort enemas, Canasa and Colazal.  Wondering really if Colazal is doing anything since I have been on it for ages.  Also taking Calcium, probiotics, fish oil capsules and multivitamins.   Sticking to a low residue diet in the meantime.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/22/2009 1:05 PM (GMT -6)   
thanks for your replies.
quincy: we are relocating from arizona - have infact collected all my records from my present GI.... will take me a couple of weeks to get new GI and then also to get new insurance card..... my re-flare started at a very wrong time! Yes i m on both canasa X2 daily + lialdaX2 .. ... i will definitely push my next GI for retention enema as i do not want high dose of lialda as u suggested.. but till i get new GI i guess 3Xday dose of lialda will be required (not sure if that will also work)..as i hv nothing else to stop this flare up.

ElephantPipe: thanks...hope my GI gets me to remission :-(


Christine: i stopped probiotic because i felt it was doing no good to me... i saw no change. i m so confused..dnt know what to do.... i was eating so healthy when i had this reflare!
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/22/2009 1:08 PM (GMT -6)   
Ive been staying in remmision with eating fruit all morning. I eat 2 pears and then 6 banans or I eat a catalope and then 5 bananas. So far I have not been going to the loo all the time, even with this cold
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1X 500mg pentasa in the morrning and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 6/22/2009 1:52 PM (GMT -6)   
saposs...you just answered the question....you're moving!
Way up there on the stress metre. I'd be flaring for sure...

I would definitely suggest you start a fibre supplement such as the Metamucil capsules...even one per meal to start and increase....

The probiotics...which ones were you on??

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/22/2009 7:22 PM (GMT -6)   
quincy: i did not know relocation will get me flare up...wow! instead i was thinking "why" during this busy time i had to deal with problem. I will get Metamucil capsules .... u know - i have been dreaming of relocation, furniture, decorating new apartment....i guess u r right - relocation got this flare up :-( The probiotic i was taking was Acidophilus ..dnt remember the name..but i kept it refrigerated.... i had then asked you if it was o.k and you told me it was good one to begin with..... i disposed off the remaining today - forgotten the name.... i would really like to take some good probiotic as it is helping so many .... u suggest me some and i will get that. i wish probiotic helps me.

hellokitty: that's great you found cure in fruits. Twice a month i fast (reasons other than UC) and all i take that day is fruits especialy apples but next day is usually not good. Maybe this time i will try pears and bananas as u have mentioned. I will let you know how i feel next day.
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 6/22/2009 9:18 PM (GMT -6)   
Also maybe try a cup of dandelion root tea every day. I feel like it helps, and I finally found a way to make it taste good. Put in a generous amount of honey or agave nectar and some cinnamon.
19yr old female
Diagnosed with UC (pancolitis) in 2005 at age 15, on 2.5 tabs of Azathioprine daily
Arthritis in both knees (thanks UC)
Also: asthma, acid reflux, and Reynaud's Syndrome


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 6/23/2009 2:24 AM (GMT -6)   
Hi...flaring is so difficult to pinpoint sometimes...for me it happens after the storm, unless I've been in a state of distress for a while.

Definitely make sure you're not forgetting to take your meds...easy to do when our mind is focussed on other things that need to be done.

You're also newly diagnosed, and there can be lots of ups and downs the first year or two regarding meds, etc. It is important that there be consistency in meds...meaning not too much yo-yoing. Your dosage is still low enough that it can be increased...and you can go up one in the Lialda if you get worse...but you might find the enemas are exactly enough and you can save the Lialda to increase at a later date.

I'm suggesting that because sometimes doctors will give the highest dosage of 5ASA meds and since they can sometimes have side effects that mimic UC...it's difficult to distinguish and there is a perception that the meds are a failure. Rather than decreasing them a bit, they're stopped.

So, you're going about it in a good way I think...

Regarding probiotics. The ones that are most obvious on this forum are Primadophilus Reuteri capsules; Align; Culturelle; Flora, Udo' Choice....

There are so many available today...it's sometimes trial and error. I've tried a few different kinds and recently switched.
The ones I use now are in my signature.

Natural Factors has one that's called Ultimate Protec that I was looking into to try...maybe later, but I've been having incredible success with these, I might not want to change.

I take them at bedtime on an empty stomach...about 2 hours after my nightly meds.

Keep us posted as to how you're doing.

Hope your move goes smoothly...oh the fun of decorating!!

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/28/2009 3:05 PM (GMT -6)   
hi!!! got the internet connection today :-)
yes quincy i m having fun decorating new home! u r so correct abt medication - my GI had earlier suggested 3X lialda but as per your advise i started with just 2 per day ( also taking canasa x2 daily) but i guess this relocation gave me a flare up- it was getting bad & i cud not get appointment with GI and now m in a new place- as a result i had to up my Lialda to 3 per day.... this did reduce mucus/blood but i guess it has given me constipation! Can lialda cause constipation? Once i get a new GI i will push for retention enema and reduce lialda. Also will start with probiotic again.

elephantpipe: guess what, i have never had dandelion root tea :-) wud like to try it.......... m ready to do anything to get rid of my flare!
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 6/29/2009 3:30 AM (GMT -6)   
Constipation could be a symptom of low in the rectum inflammation, IBS, low fibre, stress, not enough food intake or exercise, or a combination of all..

You could consider to start a fibre supplement as well as probiotics.

It take s a while to get it figured out...it seems as though things are getting better, however.

Happy to hear you're moved in and having fun decorating. Creative expression might also help your flare.

Keep us posted as to how you're doing and when you get your new GI.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/29/2009 10:57 AM (GMT -6)   
thanks quincy! I dnt know if i have IBS as well but rest everything u have mentioned is there in my list these days - low fibre, stress, not enough food intake or exercise ........... i m little settled down now so will start cooking healthy from today!

U r a great help quincy & guess what i feel u r more knowledgeable than my now ex-GI smilewinkgrin
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 6/29/2009 2:55 PM (GMT -6)   
LOL..thanks for the kind words.....lots of information is basic from what I"ve also learned here on the forum.

I think it sometimes needn't be too complicated unless the basics aren't working or enough, then seek other options in conjunction.

I realise many shy away from eating....the digestive tract still needs to "find" its rhythm. If we're too easy on it, it gets lazy or totally out of control...like a bipolar organ..lol!

The trick is to have options for the varying needs of what is required. The first-line are oral/rectal meds and the next is food habits and supplements such as fibre and probiotics. Emotions and life situation can control so much.

YOu also have a thyroid issue which also probably goes up and down...UC is no different.

I do believe that once you're settled into your new lifestyle and home, you'll figure out what you need for yourself.

Hope you have a feeling better week...keep us posted as to how it's going.

Have you any leads on doctors?
You might want to check out  http://www.ratemds.com/social/  for doctors in your area.

quincy


*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/30/2009 12:19 AM (GMT -6)   
yes! GI search is my next step now :-D ...this is a good site you have given ... i also plan to post separately for a good GI in my area...there are many from california :-) thanks again!
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 6/30/2009 1:04 AM (GMT -6)   
Glad I was of help...narrowing the search for gastro docs is helpful. Although, it's possible not every doc is on the list.

Have a great week!
q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/30/2009 1:58 AM (GMT -6)   
quincy said...
LOL..thanks for the kind words.....lots of information is basic from what I"ve also learned here on the forum.

I think it sometimes needn't be too complicated unless the basics aren't working or enough, then seek other options in conjunction.

I realise many shy away from eating....the digestive tract still needs to "find" its rhythm. If we're too easy on it, it gets lazy or totally out of control...like a bipolar organ..lol!

The trick is to have options for the varying needs of what is required. The first-line are oral/rectal meds and the next is food habits and supplements such as fibre and probiotics. Emotions and life situation can control so much.

YOu also have a thyroid issue which also probably goes up and down...UC is no different.

I do believe that once you're settled into your new lifestyle and home, you'll figure out what you need for yourself.

Hope you have a feeling better week...keep us posted as to how it's going.

Have you any leads on doctors?
You might want to check out http://www.ratemds.com/social/ for doctors in your area.

quincy


Good link. I was glad to see that doctors I have had issues with have very bad ratings on there...makes me feel that at least it's not me who is the difficult patient or a problem
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 20 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success

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