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Ulcerative Colitis
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Posted 4/24/2012 9:52 PM (GMT 0)
there is NO darn pattern , corilation, consistency , or reason to this 

S!*t ........literally!

i go days NO BLOOD , some thinckening of D' ( which is pathetic i am gaugeing D' because D is D but.... ooo its its ...NOPE back to a liquid gush, a pool of bloody toilet water. Then i re -look food/med diary aGAIN only can t pick a single thing differant , not a THING  . i can say th eonly thing that changes is the weather. is my gut attached to mother nature LOL!! 

if i have cramps and almost dont make it bathroom AGAIN ,.... EVER . i will scream at the top of my LUNGS !!!!!!!!!! so frustrated !!!! 

well now that THAT rant is OVER . good day. :)

Posted 4/24/2012 11:15 PM (GMT 0)
Sorry Shelia I can relate to how frustrating a long flare can be. I just think when we are so inflammed there is a variety of things that we can excrete depending on the time of day, what we eat, how the consistancy of our stool aggravates the colon walls. I hope you are able to get this inflammation under control soon. Hugs for you.
Posted 4/24/2012 11:19 PM (GMT 0)
sorry to hear that you are having a rough day. I started using this free app called "GI Monitor" on my iphone to track my BMs, blood, meals and pain level. It has a chart where you can see a line graph of your symptoms. My line goes and and down like a rollercoaster! I think it is related to the prednisone and my body fighting back. The pred also makes me crabby and irritable so that makes it challenging on a daily basis.

Hope this helps and hang in there.
Posted 4/24/2012 11:24 PM (GMT 0)
How are you doing ManhattanMama? Are you starting Remicaide soon? Thinking of you.
Posted 4/24/2012 11:31 PM (GMT 0)
Hi Seasons,

I am doing okay for now. At 7mg of Pred and only having 1-2 BM a day. Once in a while I do see an increase in mucous or some blood on the stool so I hang on for another day or two before tapering again. My withdrawl symptoms are much better overall feeling better. I have actually had a few days where I felt so good I forgot all about my UC! I am planning on continuing this route unless things take a turn for the worse.

I know that with blood and mucous there is still active inflammation so realistically I don't think the pred by itself is going to put me in remission. The plan will be Remicade if things don't work out. I just don't want to wait another 3-6 months waiting for med to work. My daughter turned 1 in March and I was so sick that we had to cancel her birthday party. I don't want to miss out on life with my kids worrying about going to the bathroom all day long.

How are you doing today?
Posted 4/24/2012 11:55 PM (GMT 0)
So are you going to taper the Pred and see how it goes before trying Remicaide? You are not going to try 6mp/Imuran correct? I am glad you are slowly having some good days. I know it is so tough being a Mom and handling all that this disease brings. I have 2 active young boys. One has a lot of challenges because he is on the autism spectrum. It is all so overwhelming.

I am blah today. Biopsies came back severe inflammation at rectum and moderate to severe up a little higher. GI is calling in 6mp, but I am going to see my regular doc first to discuss a few things first. Ugg. Thanks for your concern as always. Don't know if told you I'm origianlly from Dutchess County so not too far from the city :)
Posted 4/24/2012 11:55 PM (GMT 0)
Shelia do you think it could be related to stress? I seriously believe my colitis is strictly stress related, nothing else seems to matter.
Posted 4/25/2012 12:56 AM (GMT 0)
Seasons, did you ask the doc about some cortifoam at your last visit? I remember that you are allergic to mesalamines but cortifoam may work for you in addition to the pred. I wish that I had not waited so long on the pred before trying something else but this is only my 2nd time on steriods and I had huge success the first time. There was no way to know that it would not work this time. I feel that now that I have been taking pred for almost 5 months I need to see it through to see how far I can get. I am hoping the cortifoam and meslamine enemas help get me there. Hoping to get to 6mg by the weekend---fingers crossed.
Posted 4/25/2012 6:13 AM (GMT 0)
UClkogIC -Yes stress with me is absolutly a factor !!! I can litterally watch it , stressful =definite sypmtoms but I can't NOT think the way I do and I know I need to figure something out ! My ND couldn't stress enough on relaxing and finding a stress reliever! now I'm stuck in n even more vicious mental stress battle with this darn sickness. And Mama I know weird how it just so up n down. I 'm gonna do that app. I do journal but it be cool to have for phone. Seasons u know the deal I can't catch a break. Man u guys !! Thanks for the suppoert and feedback
Posted 4/25/2012 3:39 PM (GMT 0)
Prayer is my stress relief. You can also look into biofeedback. I do that too.

MMama
I did ask about cortifoam and he said it's just a different delivery than the enema I already take. He wasn't really suggesting it. I"m not sure if I should push for it. Already on 30mg of Pred and enema...not sure if more steroid is a good or bad thing.
Posted 4/25/2012 3:51 PM (GMT 0)
Thats the nature of this beast. I have been in remission for quite a while and i still suffer from bad days where i literally feel like my uc is active. Just last week i had some mild symptoms that were progressing and i thought the worst and now, i am feeling quite a bit better. I have to be on my toes all the time with the darn illness.
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