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My specialist answer today - stop all medications....

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Ulcerative Colitis
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Posted 7/30/2009 10:01 PM (GMT 0)
Except Imodium when needed - Pepto when needed!

His prescription for Cortifoam and Anusol suppositories have made bleeding, pain, etc. worse.  I stopped all yesterday and feeling more normal today.  Not perfect but 2 BMs with some blood and mucous.  He said if I was not bleeding enough to be anemic (keep up the blood tests) not to worry about bleeding.  He recommended that my regular gastro doctor do another scope in a few months.  IF I get a lot worse to make an appointment with him sooner than October.  He would see me anytime.  Of course, I have to go 150 miles.

So, my feeling is eating what I know doesn't bother my IBS - taking probiotics, vitamins, calcium and my Xanax.  He feels this will do me just as much good as anything.  Also, he told me to remain calm and avoid stress - Xanax helps that.

He and I and my NP agree that I am sensitive to all additives, propellants, etc. in most medications!  Last thing he said was to AVOID prednisone if at all possible since last time I took it I needed 40 mg. to stop the bleeding.  He feels that is WAY to high.  I know all this he is considering my age - I am 69.

ElaineNY

 

Posted 7/31/2009 1:23 AM (GMT 0)
Just bumping this up to the other post about stopping medication!
Posted 7/31/2009 4:39 AM (GMT 0)
I hope it works for you Elaine. I know if I stopped taking everything I would quickly fall back into 20 trips to the can a day. anemia, blood, mucus and all the other pretty symptoms. 
Posted 7/31/2009 8:30 AM (GMT 0)
Hi Elaine...seems if it's not helping and making you worse, that's a way to go.

Hard to avoid stress isn't it when you feel like crap, plus with your husband's situation...but it's good the xanax helps ease that for you.

Definitely keep us posted as to how you're doing.

quincy
Posted 7/31/2009 12:12 PM (GMT 0)
I just really wish you could of found at least one medication to help you! You are a trooper though and you gave it your best shot. Some of us just can't tolerate them, end of story. So maybe this is for the best.
Posted 7/31/2009 1:42 PM (GMT 0)
You may also look into omega-3 supplementation to help reduce inflammation, since you aren't tolerating the meds. Check out The New Eating Right for a Bad Gut to learn more and to get a better idea what foods are generally well-tolerated by IBDers.
Posted 7/31/2009 2:54 PM (GMT 0)

Thanks for all our support.  My new specialist gave me a list of foods to eat or not eat that might help.  Since I have IBS - I know most what bothers me most. 

Nososickly girl - I never had UC that bad - thank goodness.  Just a few bouts of diarrhea with blood - maybe 5 in the morning.  Imodium stops that for me and my day is normal. 

I am considering Omega 3 as my primary care doctor wants me to take it for chloresteral.  Also, asking about fiber.  Adding one thing at a time because of my sensitivity to EVERYTHING!!  Today woke up nausea, cramping, headache - back to old ways but feeling better now.

ElaineNY

Posted 7/31/2009 7:27 PM (GMT 0)
Hi Elaine...by fibre, I'm meaning a fibre supplement like Metamucil capsules..taken with meals, which has really been amazing for softer/fluffer bms..

That as well can help with cholesterol...

q
Posted 7/31/2009 8:58 PM (GMT 0)

Ok, stupid question (although they say there are no stupid questions) - why would I want softer, fluffier stool?  Sorry, just don't get it.  My husband takes Metamucil for constipation.  I also know it can help "even" our stool, etc.  Mine seems formed, just right - only soft if anything (like second or third) - I had lots of bloody diarrhea a year ago when first diagnosed but no more since Align!  (just have blood mixed with stool and little mucous these days and doctor said unless I became anemic not to worry about the blood).

ElaineNY

Posted 8/1/2009 4:31 AM (GMT 0)
hmmm...well, easier on the way out, but different than soft in the way of, as Red describes it, soft serve..lol!

Fibre supplements such as metamucil also helps to "exercise" the colon...since you're on relatively low fibre, it can help to bring a natural rhythm to the peristalsis rather than a spasming one.

Interestingly, I'm taking less Bentylol since starting it....not to say it'll stop a flare, but I also have less incidents of external hemmies as well as the fissure.

I started with one capsule with each meal then a week or so later I did two, etc.

Considering you have IBS....it can help that as well.

it might be something that will help you not need imodium??

q
Posted 8/1/2009 2:33 PM (GMT 0)

Thanks - I don't really understand the words but I do understand what it does!  I have to talk with my NP next week so I will ask about fiber.  Hey, you know I have tried about everything - always willing to give it a try.  I remember fiber giving me tons of gas so have to start slow.  I now know that it was either the Cortifoam or Anusol that gave me gas as I don't have since stopping three days ago.  Still waking up nauseated, cramping and aching all over.  Been doing that for years actually before I knew what I had.  I can stand a few hours of that instead of all day so staying off medications for now.  WE will see!

ElaineNY

Posted 8/1/2009 4:56 PM (GMT 0)
Elaine, way way back when I first had an attack of UC, I was put on pred, rectal cortisone, and blah blah blah. I decided myself, after months of side effects and scopes and feeling like hell, that I would just stop. And I did. It took about 4 months, but the blood and all that went away. Then I was left with IBS-type stuff (mostly IBS-C) for some years before UC flared again, due to antibiotics, I think. In sum, I say go off the meds and give it time.
Posted 8/1/2009 5:48 PM (GMT 0)
Yes, I believe my biggest problems started with double dose of Amoxicillin.  Thanks for the encouragement.  I think now maybe what I eat, when I eat and the supplements will do as much for me as the medications - we will find out!  ElaineNY

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