how do alot of you manage

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anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/3/2008 7:33 AM (GMT -6)   
i have been flaring the whole month of oct. been on pred. two treatments of that 60mg three days then 40 mg three days then 20 mg three days i'm starting to take the 20 mg today for three days then i wont have anymore.i'm still flaring and feel awful, sick to my stomache and all. i started smoking again last night i cant take this disease it hurts and i hate being sick.my stomache hurts and still cramps everytime i start tapering off the pred. this flare i would have to say is the worst i have had even worse then the very first one.how do you just get over a flare what else could i possably try. i cant imagine flaring for years my heart goes out to everyone that has been.i'm just hoping that smoking puts it back in remission like before.

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2008 came back normal.

quit smoking almost a year ago,been having little flares since then.

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

started taking philips colon heath with probiotics once a day.

                                                                       

 


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 11/3/2008 8:32 AM (GMT -6)   
Pamela this is such a frustrating disease. I came down w/ UC because I quit smoking. I am now at the stage of making the decision as to whether I will go back to smoking to put my UC in remission or to keep doing what I am doing. I would be interested, if you don't mind, if smoking puts you into remission. I don't really want to go back to smoking as I know how awful it would taste. I also have my Jim (dh) to think about in that he has been diagnosised in the earliest stages of emphysema.

I started exercising this a.m. I have not been big on exercising even though I know how good it is for our bodies no matter what age we are. But I am going to see if this helps w/ my UC.

I, too, am like you - tired of being neauseated all the time, my joints hurt, I wake up in the middle of the night and the bottoms of my feet hurt and my hands are swollen and hurting. I'm tired of the bloating and not being able to eat what foods I enjoy. Oh my, I'm sorry - LOL now I'm ranting.

But trust me - I do understand your frustrations.

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/3/2008 8:32 AM (GMT -6)   
Angel, can you get into see your doc? Sounds like you are really feeling awful, and maybe they can help -- have you tried anything besides the prednisone?

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/3/2008 8:46 AM (GMT -6)   
i dont have a gi doc. as mine left state and went to florida and took my records with him. i have been trying to get my records for months now. i have been relying on my regular doc to treat me. he has only tried the pred. told me that we need to get it under control then try other meds. to keep remission. but pred isnt helping. so i turned to smoking last night i need relief. i also have been going through the board of medicine to get my records from my old gi and to get a new gi. no other gi wants to take me as a patient and cant figure out why. gi's in this town stinks. gigi i will let you know if smoking helps me get back into remission as it helped me before so i hope it does again.

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2008 came back normal.

quit smoking almost a year ago,been having little flares since then.

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

started taking philips colon heath with probiotics once a day.

                                                                       

 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/3/2008 9:19 AM (GMT -6)   
Pamela,
Your prednisone "treatments" sound more like what is used for something "acute" like poison ivy, and not for UC (which is chronic). You probably need to stay at 30 or 40 mg until you start to get better, unfortunately, maybe for several weeks. Ask your doctor to consult with a GI, they need some education. I hope you can find a new GI, don't worry about the records but get some helpful drugs started, like Asacol.
Also, try a better probiotic? That one is more for colon health for healthy people. You need a better, stronger one probably.
Try not to smoke too much!! Sorry you are suffering.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 11/3/2008 9:42 AM (GMT -6)   
Pamela - Thank you and wow sorry for all the red tape you are having to go thru - not fun. I'll just have to pray for you that you are able to get this matter resolved quickly!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 11/3/2008 10:43 AM (GMT -6)   
you might be able to get your colonoscopy records from the hospital that you where in when it was done they should also have results of the blood work.The new GI. might be able to work from there.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 11/3/2008 3:28 PM (GMT -6)   

Hi Pamela,

I agree with Peety about staying on 30 or 40 mg of pred for longer before tapering. During this mild flare that I'm trying to get over I started at 30mg for 1 week and noticed improvements so I went down to 20 for 2 weeks. I'm now tapering 2mg every week. You might just have to go slower. Hopefully you can get the GI mess cleared up so you can see someone.

V


31 year old female diagnosed with UC (entire colon) Feb 2008
(4) 400mg Asacol 3x a day
Remicade 10mg/kg every 8 weeks
Omega 3 supp, calcium supp, VSL 3
Prednisone 18mg (tapering 2mg every week)


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 11/3/2008 8:22 PM (GMT -6)   
you definitely need a slower taper on the pred. Sounds like it is too quick, and decreases too much at a time.
*******Donna*******
 
South of Boston, Ma
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 11/4/2008 12:43 AM (GMT -6)   
Pam, I hope you can find a good GI doc, I think it will definately help you in your long term health. I was on huge doses of prednisone for a long time,(not ideal), but it did bring down the intensity of my flares. It certainly sounds like you need a maintenance dose at least for now, and worry about getting off it later.

------------------------------------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily

anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/4/2008 2:09 PM (GMT -6)   
thanks for all of your replies,i feel like i'm tapering to fast as well,i'm down to my last 20mg pill for tomorrow and still flaring and the soreness in my joints is returning.i just dont know how much more i can take of this i need relief. the smoking seems to be helping alittle not much but i havent been smoking that long yet. it just seems as when i start tapering the soreness in my joints returns and the cramping.

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2008 came back normal.

quit smoking almost a year ago,been having little flares since then.

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

started taking philips colon heath with probiotics once a day.

                                                                       

 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 11/5/2008 9:20 AM (GMT -6)   
     Sounds like too fast of a taper to me too.   I started this last flare in May...maybe, just  maybe, I am now in remission.  I'll let you know in two weeks..lol.  As I took my last 5 mgm of prednisone on Sunday.  This last flare lets me enjoy two weeks off the prednisone before flaring again.  The doctor  put me on 40 mgm (third week in Sept) for a week, then 30 mgm for a week, 25 mgm for a week, 20 mgm etc.  I also am taking 6MP, 75 mgm.  I think the 6 MP finally kicked in.  They took me off the 6MP after four years on it, when I was admitted to the hospital in May. My pancreatic enzymes were off the wall...Amylase and Lipase.  Doc thought it was the 6MP.  I was off it a month, but the enzyme levels returned to normal after five days in the hospital.  Wonder if it was a glitch in the test.  They are still normal even though I have been back on the 6MP since July.  I also was taking Canasa suppositories and Cort enemas alternate nights.  Still on the Colazal.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

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