New to the forum...not so new to ulcerative colitis

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KatieBwithUC
Regular Member


Date Joined Sep 2008
Total Posts : 125
   Posted 9/20/2008 8:58 AM (GMT -6)   
Hello Everyone. I am 25 years old and was diagnosed with Ulcerative Colitis back in March. It's been a long few months with a few tolerable flare ups, that is, except for this last one last week.

I just was released from the hospital yesterday. I had lost 15 pounds and had slipped into anemia and had battled through severe stomach cramps. I was there 5 days and now they've sent me home (I'm eating solid foods.... carefully) and I'm taking prednisone now. Last night I was still having mild cramping and had little sleep. Has anyone here taken the oral prednisone? about how long might it take to work? I know I'm on the road to recovery but I'm ever so tired of the cramping....which my doctor said I'd still be experiencing for a little while..... I'm just looking for the light at the end of the tunnel. Any ideas?


Katie

mommafreds
Regular Member


Date Joined Sep 2007
Total Posts : 41
   Posted 9/20/2008 9:13 AM (GMT -6)   
Hi Katie, Did you get IV prednisone in the hospital? I was in the hospital in July as was put on iv then oral prednisone. It started helping within a week. I had cut out all caffeine (i mostley drank black tea) and my stomach cramps were reduced greatly. I really miss tea though. Prednisone will keep you from sleeping...I had to ask the doctor to give me something to help sleep. I am down to 10mg and can sleep without help now.
I never took anything for cramping but from this site it seems like some doctors give medicines for that. Are you on any other medicines and how much prednisone.? I would talk to your doctor about the sleep because when I was on 40mg it was impossible for me to sleep.
DIAGNOSED 2004 PANCOLITIS
CURRENT MEDS: PREDNISONE 20MG (DOWN FROM 40MG)DAILY
AZATHIOPRINE 100MG DAILY
ASACOL 400MG 4TABS THREE TIMES/DAY
PROBIOTICS: FLORA-Q AND ALIGN
ANTIDEPRESSANT: BUDIPRION 150MG DAILY
SUPER B COMPLEX WITH C VITAMIN DAILY
OSCAL WITH D TWICE DAILY


KatieBwithUC
Regular Member


Date Joined Sep 2008
Total Posts : 125
   Posted 9/20/2008 9:58 AM (GMT -6)   
I am on 40 mg of prednisone a day right now and I did have a lot of trouble sleeping last night. I actually woke up sweating twice but with no fever and it seemed to have nothing to do with the thermostat either. I was on the IV in the hospital as well. They did not give me anything at home for the cramping and the pills that I did have from a previous flare up with cramping didn't really help. My doctor told me not to take them. If I have trouble sleeping again tonight maybe I will call the doctor and tell him. Most of my sleeplessness was due to cramping, however. In the hospital they were giving me the delaudan (sp?) so I wasn't having trouble but since I've been home I've been really uncomfortable. I do hope this gets better soon. I think I will take your advice and cut out the caffeine.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/20/2008 10:41 AM (GMT -6)   
Hi Katie,
     Hang in there dear.  I've had UC for ten years.  I was diagnosed in 1998, hospitalized then for eight days.  Over the years I have had flares but the one I suffered in May of this past year was a doozy.  Hospitalized for ten days this time.  I still am not completely what I would call OUT of this flare.  Although I am fortunate enough not to have cramping, I do have urgency to "go" a lot and still see some blood but not as bad as it has been.  I just got off the prednisone!  They started me on the IV on 60 mgm of prednisone and then tapered.  I had a PIC line in the last five days in the hospital.  They sent me home on 30 mgm of oral prednisone, 9 Colazal a day and Canasa suppositories.  My GI doctor has put me back on the 6MP (he took me off because when I was admitted my Amylase and Lipase tests were very high but returned to normal..still don't know why).
 
Are you taking any probiotic?  In the hospital they had me on Flora Q, which is now sold over the counter and quite expensive, so I am taking Powerdolphilus by Country Lfe which I purchased over the net.  I also take blood pressure meds ( prednisone can increase your BP), calcium (I have osteoporosis from the steroids too), flaxseed oil capsule, fish oil capsule and multivitamin.  I still have trouble sleeping but the doctor has prescribed Ambien CR.  It seems like I just cannot get a decent nights sleep without it.  Prednisone can play havoc with your nervous system.  It can cause depression, mood swings, etc..
 
I hope you feel better soon.  We are all in the same boat here and more than willing to help with your moral support.  Try to look on the bright side of things.  Follow a low residue diet while still in a flare.  I know a lot of us take fiber, but fiber makes me feel worse.  It's basically a trial and error disease.

KatieBwithUC
Regular Member


Date Joined Sep 2008
Total Posts : 125
   Posted 9/20/2008 12:51 PM (GMT -6)   
Right now they have me on 40mg of oral prednisone and Lialda. They told me to forget the enema steroid I was taking. I am not taking a probiotic and am not really sure of what a probiotic is. When I spoke to my doctor about the sleep trouble he told me to start out by taking all 4 prednisones in the morning and try taking Tylenol PM in the evenings. When I go in for an appointment next week maybe he'll prescribe me something stronger but today is Saturday so I could only speak to the doctor on call. He also told me I could take regular Tylenol for pain and that's helped me a bit. I've heard and read all of the side effects of the prednisone and it is a little scary but I don't really have much choice. I have every intention of following the doctor's orders. I want my life back.

So far the only foods I think that really drive me crazy are fried foods. Other things not so much..... but for my first couple of days home I think I'll try to stick to easy things like egg noodles and soups.

mommafreds
Regular Member


Date Joined Sep 2007
Total Posts : 41
   Posted 9/20/2008 12:59 PM (GMT -6)   
Christine, I just found out that they sell a generic of flora-Q. I am not sure but I think flora-q has been the most helpful probiotic for me. I am actually taking align and flora q generic now. its so hard to tell what helps and what foods hurt etc. etc.
Katie, a probiotic is a dietary supplement that contains the natural bacterias in our GI system that are lacking. Ask your doctor about taking those also.
DIAGNOSED 2004 PANCOLITIS
CURRENT MEDS: PREDNISONE 20MG (DOWN FROM 40MG)DAILY
AZATHIOPRINE 100MG DAILY
ASACOL 400MG 4TABS THREE TIMES/DAY
PROBIOTICS: FLORA-Q AND ALIGN
ANTIDEPRESSANT: BUDIPRION 150MG DAILY
SUPER B COMPLEX WITH C VITAMIN DAILY
OSCAL WITH D TWICE DAILY


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 9/21/2008 2:41 PM (GMT -6)   
If on steroids try and stay away from high sodiem foods and drink loads of water. Rest when you can and try to keep an eye on your stress levels, stress seems yto play a major factor for a lot of us with UC. wELCOME TO HEALINGWELL,FEEL FREE TO ASK US ANYTHING YOU LIKE.
FEEL GOOD SOON
MARTY
                                     keep the faith 

         asacol/proctifoam/
Zoton (lansoprazole)/pred/colofac


       
                   http://www.myspace.com/martylogue


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/21/2008 3:17 PM (GMT -6)   
The prednisone should work pretty quick. I didn't get or need as much sleep when I'm on it, the extra energy was the only good thing about it. It also gave me night sweats, like you describe. You'll notice lots of other wierd side effects. It can also have some serious side effect, but I still turn to prednisone to get through flares, and 40 mg is a good strong dose.
You describe stomach cramps, but would you say it is actually spasms in your gut (down lower)? Stomach cramps might be something besides UC
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering OFF prednisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
Sept: Mild case of thrush in throat, prescribed antifungal mouthwash.


Michelle8871
Regular Member


Date Joined Sep 2008
Total Posts : 90
   Posted 9/21/2008 3:41 PM (GMT -6)   

FYI...I have been on prednisone on and off for years for asthma

Make sure you are taking as early in a.m as possible - it will keep you up at night if you don't

I am on it again now for a newly diagnosed UC and find that if I take it before 6 am - I will have no problem sleeping at night

Good luck

Take Care!

 


wvueer
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 9/21/2008 5:29 PM (GMT -6)   
I am a 37 year old female that was diagnosed with UC 10 years ago when I was 7 months pregnant with my second child.  Since then, I have had another child and was admitted to the hospital for a 27 day stay due to my colitis.  I was one day away from surgery. The reason I was in so long was due to the local doctors using medication on me that makes symptoms worse (Levbid, precocet to name a few).  My family pulled me from the local hospital and took me to the city.   From my experience, I think that finding the right doctor that specializes in only UC is the only way to go.  I have been on every medication that is for UC.  I have been in remission for approx. 4 years.  I am on Imuran 100mg, Colozal 3 pills 3x a day, Celexa 40 mg. and .5mg of Klonipin.  I drive an hour to see a specialist that researches UC.  It's been a long road but someday you will get there.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/21/2008 8:52 PM (GMT -6)   
wvueer...where do you live?  I was also hospitalized in May for ten days for ulcerative proctitis and high blood pressure (hard to bring under control because of the prednisone).  I have been unable to get off the prednisone completely.  My dosage was down to 5 mgm every other day and today I had a horrible day...bleeding a lot (always see blood in the stool anyway), urgency and about 10 bowel movements.  Is Imuran like 6MP?  I've been on that for four years and it has never kept me out of a flare yet.  I also take Colazal and alternate cort enemas nightly with Canasa.  I never heard of Celexa or Klonipin. 

mommafreds
Regular Member


Date Joined Sep 2007
Total Posts : 41
   Posted 9/21/2008 8:55 PM (GMT -6)   
I am on Imuran 100mg also. I take asacol. I am going to ask the new doctor about colazol. Were you ever on asacol. I have read a few posts where colazol worked better for some. Have you been on the imuran for 4 years and did you take prednisone to get into remission. I was on imuran before and did well but my doctor switched me because I was afraid of the side effects. I have a GI who I like but this one is supposed to be one of the best for u.c. and also does research. I am glad you have had such a long remission. I feel like I am in remission or almost there. I pray I can go 4 years like you:) Did you ever have hair loss? I had it before when I was anemic and now its back.
DIAGNOSED 2004 PANCOLITIS
CURRENT MEDS: PREDNISONE 20MG (DOWN FROM 40MG)DAILY
AZATHIOPRINE 100MG DAILY
ASACOL 400MG 4TABS THREE TIMES/DAY
PROBIOTICS: FLORA-Q AND ALIGN
ANTIDEPRESSANT: BUDIPRION 150MG DAILY
SUPER B COMPLEX WITH C VITAMIN DAILY
OSCAL WITH D TWICE DAILY


wvueer
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 9/22/2008 4:41 PM (GMT -6)   
I am from Latrobe PA which is 50 miles outside of Pittsburgh, PA.  I currently go to the Digestive Disorder Clinic at University of Pittsburgh Medical Center.  I was on asacol before but after awhile the pills were coming out whole.  My body wasn't breaking them down.  I was on high doses of prednisone for the first three years of my diagnosis.  My doctor took me off the prednisone once I began to go into remission approx 2 months after my hospital stay.  I haven't had to take prednisone since my hospital stay.  I have been very lucky that I haven't had any bad side effects from my medications.  I incorrectly stated my mg for Imuran.  I am on 150mg once a day.  The local doctors wouldn't put me on that high of a dosage. I have to get my liver checked every three months because of the Imuran. The celexa was for my depression while in the hospital but I decided to stay on it afterward.  The Kolonipin is for anxiety.  When I have stressful stituations, I take one to calm my nerves.  It's for as needed  - only but it helps!  I had hair loss due to the vitamin loss.  I drank Boost to haelp regain my strength.  It is not dairy based!  I hope you are on your way to recovery!!!!!  What is 6mp???
,

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/22/2008 5:00 PM (GMT -6)   
OK...I am in south Jersey, a town called Bellmawr, exit 3 of the turnpike..lol.  Actually I can see the turnpike from my backyard.  We are about 20 minutes from Philly, GO PHILLIES!!
 
6MP is mercaptopurine.  I believe it is very similar to Imuran.  I am currently on 50 mgm a day.  The doctor is hesitant to boost the dosage because when I was admitted to the hospital May 3rd my Amylase and Lipase (pancreatic enzymes) levels were off the wall...waaaay high.  He took me off the 6MP during my hospitalization.  I was fed via PIC line and also got my meds and blood drawn through it.  I haven't been able to get off the prednisone for long since being discharged May 13th.  Seems like I was off it for a week and had to go back on...now I am finally off it again and flaring.  The doctor put me back on the 6MP in early June because my Amylase and Lipase had returned to normal levels while in the hospital.  I really don't know why I am on it because it has NOT kept me in remission.  He said 50 mgm is a relatively small dose.  My other meds are 9 Colazal a day and Cort enemas alternate nights with Canasa.  I also take a probiotic, flaxseed oil capsule, multivitamin and calcium.  I have yet to get into remission.  Talked to my GI about an hour ago and he said to just sit tight, watch my diet and see if I am any better in a few days.  If not, back on that prednisone again.  I am not a candidate for Remicade.
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