Another FLARE -HELP !!

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!

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....

I can't answer the entocort question, but I'm sorry you're flaring. Today was a crying day for me as well :(

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. 

 

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

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.

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

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..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

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.

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.

Even a small amount of fecal matter (or mucus) can trigger the impulse to void in an inflammed colon or rectum.