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sheliasuperstar how did it go today?

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Ulcerative Colitis
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Posted 4/9/2012 9:07 PM (GMT 0)
Thinking of you....
Posted 4/10/2012 12:10 AM (GMT 0)

seasons21 said...Thinking of you....
HI!!! WOW I AM SO HAPPY TO SEE YOU ON HERE!! I am sitting at putor crying just pretty much back & the flex sig showed MORE inflammation in MORE area as well.... :(  upped to 40 mg pred. instead of 35; (and in hindsight sshoulda been on 40 the whole 3weeks ) (not 20 then 40 then 35 all in 3 weeks so i wasnt getting the best treatment i guess ) DR strongly suggests using 6mp ( i told him i would research it it more before making that desision on 6pm) he believes that as soon as i get into remission however and whenever that is, when it comesback it will be just go back to how it is now.... no more "mild" "this disease is in full effect"- his words. i asked about LDN , he said uhhh NOPE , we wont use that for THIS.??? umm what else can i say ,season21  i am so lost :( i know i will take pred 40mg till april 23rd and then discuss with my new ND that specializes in GI care about a route ... how can it have gotten worse!!>?!>! ps  how r u ??  any light at the end of the tunnel?? and is your flex sig tomorrow?

Posted 4/10/2012 12:18 AM (GMT 0)
I see that you are allergic to mesalamines. Are you taking anything else other than the Prednisone? How did you manage your 'minor' flares in the past? You might be able to try a rectal med that is a steriod called Cortifoam.
Posted 4/10/2012 12:30 AM (GMT 0)
i was able to control my flares , which i wouldnt even CALL a flare compared to this crap i have now! but i would strictly follow my diet of g/f , d/f, no caffenie or alcohol, no sugars, no potatoes, i think that covers it, take some stuff this and that and chill out take a few days off and get better , mind you  better was not 100%, i still was the girl making sure she knew where the bathrooms were but now umm nadda. i stoppped my inflamex which i am starting again today! nothing else beside pred, the dr will NOT WILL NOT WILL NOT give me any darn rectal med, i asked again today , he said on top of the oral 40mg it is not the "bulldozer " that will work. ??? weird i know
Posted 4/10/2012 5:24 AM (GMT 0)
I am sorry sheliasuperstar, I can really relate to your feelings. This flare if very different for me too and it's scary. I think I"m on day 16 of 40 mg and still having a bit of sxs. Although I dropped to 30mg that one day and was on 30 like 8 days before the 40 as well. I am hanging in there. Today was less pain. Maybe 3 formed stool this morning. They looked ok except there was still blood. A little less though. Then I went all day until like 10pm and just had two liquid bms. Although there was really no stool. It was just what looked like thin cloudy mucous both times. I don't get what that is. I used to get what looked like thicker mucous, this is like liquid. Weird. I was tapering the cort enemas but have done them the past 3 nights to see if I saw a difference. I think they help, I"m not quite sure. I still can't get a good answer on weather using them for months would be bad for me. New GI said he didn't think they'd hurt but the effacacy of them is probably not really high so taper off. I see him tomorrow. NO sig scheduled yet but I"m sure he will schedule it. I am afraid too especially because I have this liquid I pass. I wonder what is causing that and how far up the inflammation goes. I'm sure the 6mp discussion is going to happen as well :( So depressing. I used to take Inflammix too and wonder if stopping didn't do me any favors. It's expensive. I'm now taking Inflammacore instead. Tastes way better and I like the ingredients. I order it from Amazon. BTW what are you eating these days? And did your GI say no on LDN because he doesn't know what it is or because he thought it wasn't going to help you? My GI seemed ok about it but didn't really know much about it. I get if from my primary doc. Hope you feel better real soon. I'm sorry you are going through this...thinking of you.
Posted 4/10/2012 1:40 PM (GMT 0)

hi! i feel sorry for you too , this sucks!

i think your improving ...slowly for sure but hannng on to any hope you can ;) its crazy how the bleeding can last so long but when i went to hospital a month ago cause i was having bad reaction to mesalmine and they did bloodwork i wasnt enemic yet so maybe it takes alot to have it effect the body , plus us staring in toilet everytime i am sure is tasking us physically even more due to anxiety. ps do you take anything for overall stress relief, anxiety or depression?

turn  what are You eating? daily? do you notice anything worsens u food wise?

i will loook into inflamacore- cause inflamexx is spendy - thats why i stopped i have probally 2 weeks of 1scoop a day maybe left of inflammxx so i wanna get another or get inflamcore. i beleive my GI is probally not aware enough to say whats what on LDN, but  not sure he is full on "6mp is the bread and butter of meds for this " and its not temporary it life long meds .... ugh . that why if i have to take lifelong meds id rather go more natural - especially in that there is NO guarentee for remission anyway . you get what i mean?!?! its one thing to help a bad flare such as ours but jeez i dont know what a mind bender. i am going on average 8X per day. mostly between 9pm - 5am why i wonder worse thru those hours?!

 i made organic cage free chciken in a soup, just salt and pepper in water with half an onion few carrots and garlic and am gonna eat that mainly and try and rest the colon from doing any EXTRA work. rice, banna, applesauce , homemade jello ( my friend makes -no sugar)  i will not eat gluten, dairy or sugar or corn or potatoes. that covers all that lol- you could look up inflammatory diet and see foods that can be a higher marker for casueing issues and steer clear. mainly quinoa and chicken and broths i'd say. i was doing veggies but i think there too rough right now.

seasons thanks for being you and so thoughtful!! it hhelps me and you can always click by my name and personally email me, i wouldnt mind.  do u have flex sig today ?

in my thoughts keep me postd

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