Another FLARE -HELP !!

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lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/29/2008 4:54 PM (GMT -6)   
Changed doctors, went through a lot of tests the past couple of weeks: a hida scan, a colonoscopy, an angio scan and blood work.  Get results on Thurs, the 3rd.  Meanwhile I started a bad flare on Friday, had about 25 BM's, mucus and blood by the end of the day.  I jumped on Entocort.  I have a question about Entocort.  I read on-line that the usual dosage is 9mg for 8 weeks, then 1 daily for 3 months.  My old doctor prescribed the Entocort and he said to take it for 10 days.  Quincy advised me not to just stop it that I should taper slowly, and I did that.  Has anyone taken 9mg for 8 weeks?  Hopefully my new doctor will have some new help for me.   On my good days I'm having about 8 bm's.  It's not D, I just cramp up and go a little bit.  Is this normal.  I'm becoming house bound.  I'm so tired of this.  Today is one of those crying days.  It gets me down sometimes, in fact it gets me down a lot of times. I am sooooo tired of this.   I can't live a normal life.  Thanks for letting me cry on your shoulder.  Arlene
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


2boyzmom
Regular Member


Date Joined Jun 2008
Total Posts : 43
   Posted 6/29/2008 5:42 PM (GMT -6)   

I am new to all of this so I will not be able to answer your question very well...however the only drug I have been on is Entocort.  I was taking it for 3 months per GI's instructions(3 pills in the morning=9mg).  He did tell me to stop when my estrogen was at a higher level (meaning not during my menstrual cycle) and that I did not have to taper off, that is why this drug is unique. My arthritis did flare up more during the first week or two when I was not taking Entocort but my other symptoms (cramping, fatigue, acheyness) did not change meaning they continued on bothering me as normal.  I am having a good week right now which I normally do right after my period. 

I'm in the beginning stages of learning about this - 2nd opinion with another GI tomorrow.

Good Luck!


Love 2 Teach
37 (F) 
UC diagnosed 3-2008


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/29/2008 6:28 PM (GMT -6)   
Are you off the entocort now? It seems like I can only go a few weeks after finishing the entocort when I flare again. I was seeing the same doc for 2 years and wasn't getting any better. Finally switched to a new doc a few weeks ago. I'm hoping he can help me more. This HealingWell Forum has been a great place for me. You get a lot of support. Good Luck with your 2nd opinion.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


2boyzmom
Regular Member


Date Joined Jun 2008
Total Posts : 43
   Posted 6/29/2008 6:31 PM (GMT -6)   

I am currently not on Entocort - went off June 2.  There was really not difference between how I felt these last 3months on it and then this month off of it.  I am anxious to see what this month brings since it will be totally out of my system.  Can't wait for tomorrow....


Love 2 Teach
37 (F) 
UC diagnosed 3-2008


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/29/2008 8:23 PM (GMT -6)   
I'm so glad you found this forum. Everyone here has been such a help to me. I'm sure you'll be hearing from some real nice people who have gone through or going through similar problems. I take Asacol 3 pills/3x a day and that doesn't seem to do much for me. Asacol doesn't keep the flare away for me. The Entocort I take when I have a flare, kicks in real well. I also take the Canasa in a flare and that helps me. I've lost 9 lbs with this mess. My energy level has gone out the window. All those tests you had, I had these past couple of weeks. Get results on the 3rd. Like you...I hope they come up with something solid. I too am very tired of this. It's good that you can vent. That's what this place is for. You'll find people care. Wishing you better days. Arlene
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/29/2008 8:50 PM (GMT -6)   
I can't answer the entocort question, but I'm sorry you're flaring. Today was a crying day for me as well :(
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/29/2008 9:39 PM (GMT -6)   
Thanks ComedyDork...I guess we all get that down day. Having UC, I think we're entitled to have this down day. Tomorrow will be brighter.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/29/2008 9:40 PM (GMT -6)   

It seems like everything else is so much worse when you're tired.

I always thought Asacol was as good as the 5-asas were going to work, and that's what I was told.  I lucked on to sulfasalazine and it has worked much better.  Something to ask your doctor, Lennie if you don't think the Asacol is working.

Powerfit111 said...
 
I have inflamation in my joints and my doctor has told me to stop jogging and working out at the level I was used to, as it was aggrivating my condition.
I've found doctors aren't always the best people to talk fitness.  (One of mine actually compared running to smoking in terms of physical harm.  I saw her just once.)  Exercise has an anti-inflammatory effect.  I often have pain in my joints, so I can't always run or workout at the same level, but I would never, never stop.  I do spend a lot more time warming up and stretching but I always feel better after exercise, mentally and physically. 
 
 

lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/29/2008 9:57 PM (GMT -6)   
I will mention that sulfasalazine. I've been on the Asacol for 2 years and I'm the same as I was 2 years ago. It sure as heck doesn't keep me in remission. Thanks seconder for the info.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


quincy
Elite Member


Date Joined May 2003
Total Posts : 30840
   Posted 6/30/2008 3:15 AM (GMT -6)   
Powerfit111 said...
 
I have inflamation in my joints and my doctor has told me to stop jogging and working out at the level I was used to, as it was aggrivating my condition.
I've found doctors aren't always the best people to talk fitness.  (One of mine actually compared running to smoking in terms of physical harm.  I saw her just once.)  Exercise has an anti-inflammatory effect.  I often have pain in my joints, so I can't always run or workout at the same level, but I would never, never stop.  I do spend a lot more time warming up and stretching but I always feel better after exercise, mentally and physically. 
 
 

The doc suggested to not work out as hard as was in the past because autoimmune disease can be triggered or exacerbated by intense exercise.  Sometimes one has to not push the body beyond what it's capable....it needs the energy to heal rather than expend it because one believes it's necessary.   Once the body takes over from the "reasoning" mind....it's time to take a step back and accept that it's not the same as it once was and needs to have a mental shift to adjust a few things.

That doesn't mean one cannot eventually resume what once was ....one just needs to allow a break.   There are always adjustments that can be made to ensure some exercise to help keep the body flexible and to ease some distress about not doing a full exercise regimen. 

I'm impressed with the doc's advice.

Welcome to the forum Powerfit111!

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 !!!

Post Edited (quincy) : 6/30/2008 2:32:50 AM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30840
   Posted 6/30/2008 3:40 AM (GMT -6)   
Hi Arlene...how awful for you to be going through this again!! 25 bms..YIKES!!. I hope you'll be able to get in to see the new doc asap.

I think it's a good idea to enquire about changing the oral 5ASA...maybe also consider retention enemas or even steroid enemas?

REgarding the Entocort...I can easily be wrong regarding the tapering...I'm just assuming because it's a steroid and for many they use it for a long period of time. I have a friend on it and she has to taper it. Doctors do differ in their use of meds.

Were you on the Canasa throughout? or did you taper off it?

Have you considered to add a fibre supplement to help bulk up the diarrhea a bit? It might slow down the frequency by a few bms...which could be helpful.


Keep us posted, please!
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 !!!


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/30/2008 8:36 AM (GMT -6)   
That's one way to look at it, Quincy. But UC also used to be a psychological disorder.

I think we need to remember that medicine is practiced through a series of paradigms and that these models change. In the last two or so years the NYTimes has run a couple of articles concerning medical attitudes toward exercise and chronic conditions. Whereas doctors once cautioned against exercise with some chronic diseases, there is increasing evidence that there is more benefit than harm from continuing exercise.

(Nonetheless, it is probably still unwise to run a marathon with an enlarged heart.)

That change mirrors my own experience with ulcerative colitis and exercise. My experience also tells me that some doctors don't know much about fitness beyond the tropes they learned early in their studies or careers. My experience is also backed up my that of my athletic friends who often complain about the advice they are given by their doctors.

And, when dealing with uc, there is also a logical inconsistency at play: "Here, take this potentially toxic concoction that has been shown to raise cancer rates, but, whatever you do, stop jogging! It will kill you."

I was only responding to powerfit's seeming distress at being told to stop exercising. My own experience -- and apparently that of other people on this very board -- shows that a person with uc can continue to exercise -- even jog -- without additional aggravation of the disease. I would suggest his or her doctor not have the last word on the subject.

I do dial it back when I'm seriously flaring, but I never completely stop. In additional to dialing back the exercise, I also cut calories to avoid weight gain.

lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/30/2008 10:19 AM (GMT -6)   
Hi quincy....The asacol doesn't seem to be doing enough for me. I take it every day and I know it's just a matter of time before I flare again. I can tell by my bm's thats it's not enough. Maybe there is something else I could take. I take the canasa in a flare and the entocort. I aways taper the entocort and the doc agrees with that. I go back to the new doc on Thurs. for results of all my tests. I have a lot of hope in this new doc. I hope he can come up with something to give me some relief. Good to see you quincy. Hope you're having good days. Arlene
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


quincy
Elite Member


Date Joined May 2003
Total Posts : 30840
   Posted 6/30/2008 11:42 AM (GMT -6)   
seconder....I hope you mean that it was viewed that UC was a psychological disorder..not that it "was" a psychological disorder.

Regardless...emotional and physical stress can play a huge part while flaring, but mentally distressing about not being able to exercise to keep one's weight down rather than taking a rest from it or adjusting one's regimen, I would suspect it's another issue.

There's definitely a large spectrum of exercise activity....one should always ALLOW options rather than be steadfast in needing to maintain the optimum at full tilt.

I won't debate the advice of doctors...many think out of their bottoms. Patients have a huge part to play in their care, and common sense still rules. One who is perceived to be in good physical shape isn't necessarily so on the inside or mentally.

I'm not stating that you or anyone is as I've described...just giving another perspective on the exercise/UC/autoimmune combo. We have to find a balance where we feel good and able to push the body before it decides to shut down.

Be well,
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 !!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30840
   Posted 6/30/2008 11:46 AM (GMT -6)   
Hi Arlene....doing pretty well except for the hot humid day I'm about to venture forth into...ugh!

Definitely discuss the options suggested by others regarding another 5ASA med for you. It could be that you're just not on enough...maybe 8 daily can do well for you where 6 isn't enough.

You should really stay on the Canasa and maybe try it twice daily to see if things improve.

Sounds as though you like the new doc......do ask for dicyclomine to help with some of the discomfort and spasming if you're experiencing it...in the US it's called Bentylol. 10mg to start would be good...I used that dosage for over 15 years...graduated to 20mg.

Are you able to eat?

How is your husband doing after his "surgery"?

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 !!!


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/30/2008 11:47 AM (GMT -6)   
I don't disagree, quincy. I love options, too.

And, yes, viewed as a psychological disorder, the idea that the paradigm changes. (Those papers are a hoot to read!)

NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 6/30/2008 12:23 PM (GMT -6)   
At some point see if you can try the sulfasalazine. I was taking it for the past year and 1/2. i was getting headaches so I switched to Lialda. Taht gave me horrible, painful gas. Then I just switched to Asacol. I'm feeling a bit flarey and it seems like I lose a lot of Asacol in my poo. I'm going to go back to the sulfasalazine as that seemed to work the best.

The Lialda and Asacol didn't change the headaches. I think they are due to stress. Also, my elbow and knee are really starting to ache a lot. I never had joint aches and pains on sulfasalazine. Plus sulfasalazine has been around FOREVER.

As for those incredible urges to go all the time. I use Canasa. I tried the rowasa enemas, but that made things worse for me.

I think it is just trial and error to see what diet, medicine and excercise combinations will work best for you. We all seem to react so differently.
Age: 48
location: Seattle, Wa
Diagnosed with UC in June 2006
Medications: Asacol 2 pills 3 x/day, Canasa supps
Supplements: vitamins, probiotics
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/30/2008 5:54 PM (GMT -6)   
NMcP..I put that sulfasalazine on my list of questions for the doc. You mentioned that you lose a lot of Asacol in your poo. My poo always looks agritated. (try picturing that). I blame it on the Asacol. That's why I think it's not working. I read up on the Lialda and I think I remember reading that if you take Digoxin, and I do, than Lialda wouldn't be an option for me. It's another question I'll ask the doc on Thurs.

quincy....My appetite has gone out the window. With the discomfort I have no disire for food. Now that I'm on the Entocort for the flare things should turn around and I'll feel like eating again. That's one thing about the Entocort, it does bring back my appetite. I wouldn't mind staying on that stuff all the time. My husband is doing great since his surgery. He feels a little sorness when he sits down but even that is getting better every day. He says, "tell quincy thanks for asking". Arlene
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 6/30/2008 7:47 PM (GMT -6)   
It's so weird. The asacol also leaves little purple spots on everything. It's not blood, it's just these weird little spots. I read on another forum that the purple stains are pretty common. I also read the literature that comes with the prescription and apparently it doesn't always dissolve. The worst thing about the sulfasalazine was the bright yellow urine. At least I didn't have to scrub the toilet after every time I went when on Sulfasalazine. This is driving me crazy! I'm going to go back to S. next time I go to the doc.

lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/30/2008 7:53 PM (GMT -6)   
That is weird....purple spots. I've never seen purple spots. One thing I do have is very concentrated urine and real yellow. That worries me sometimes. Like is this a normal side effect of asacol. I wonder if anyone else has this. I take drugs for stomach ulcers, drugs for UC, drugs for heart. It a wonder I'm not seeing a rainbow of colors when I have a BM or pee.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 6/30/2008 7:54 PM (GMT -6)   
No experience with the Entocort, but as far as the lots-of-BMs-but-not-much-comes-out: my GI has told me that flare-ups often inflame the anal sphincter, too, thus making it harder to pass. He usually gives me some enemas that help with that non-colitis inflammation. Just tell your doc that you're going a lot but not as much and ask if that could be because of anal irritation.

Best of luck.
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 5 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/30/2008 8:00 PM (GMT -6)   
that's me...lots of bm's but not much coming out. I do this until mucus starts coming out. I feel like I'm turning myself inside out. Oh to be rid of this. Thanks for the info. I'll bring this up at the doc on Thurs.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 6/30/2008 8:06 PM (GMT -6)   
The day it comes out blue or something is the day I start to worry. : )

I have to tell you, Asparagus pee and Asacol spots are the worst! I have a can of clorox wipes by each toilet for the asacol spots. I never had that with any other medication.

I take atenelol for bp and vitamins, etc. Vitamins alone can turn your urine some pretty weird colors. I come from a long line of weird pee'ers so unless it's blood in the urine, I don't really worry about it.

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/30/2008 8:23 PM (GMT -6)   
Even a small amount of fecal matter (or mucus) can trigger the impulse to void in an inflammed colon or rectum.

lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 6/30/2008 8:39 PM (GMT -6)   
Boy that sounds like me seconder. I get this feeling like I have to go right away and it's nothing but a little mucus. And I do this again and again and again until I start seeing blood. And at this point I am soooo sore and sooo tired. Where's that magic pill that makes all this go away.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium

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