In the hospital again (2nd time in 3 weeks) and nervous

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/19/2009 10:03 AM (GMT -6)   
I've been on 40mg of prednsione and not getting better. I've tapered down to 30.  I was having terrible shooting pains in my left side (nearer to the kidney) and my lower right and running a fever up to 101.  I went to my regular doctor who sent me to the E.R. for tests.  They did another abdominal CT scan (my THIRD in 6 weeks) and admitted me.  The only finding on the CT is my colitis.
 
They've been giving me IV solu-medrol, potassium, sodium chloride with multi-vitamins, bentyl, Apriso, and one other antibiotic that I didnt' get the name of.  This morning they told me my potassium was us to 5.0 (it had been down to 3.4) but my hemoglobin is down to 9.5 (it was 11.7) and my hemocrit is 28 (down from 35).  I am not bleeding much at all - still lots of D and urgency but not much blood. 
 
Also, they came and did a surprise X-ray this morning and I Have no idea what that was about!  I'm grateful I have my laptop with wireless internet with me because I am a nervous wreck right now.
 
Any ideas?
 
Michelle
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/19/2009 10:11 AM (GMT -6)   

Just wanted you to know I read your post and thinking of you!  Only your doctors can answer your questions.  Ask lots of them - be sure you are getting straight answers.  Sometimes takes a while to get them from tests, etc. 

Hope this finds you resting comfortably and on the road to feeling much better.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks. Bleeding returned - no call back from doc so I upped prenisone to 25mg. on my own - 6MP - 50 mg. 4/2/2009 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/19/2009 10:19 AM (GMT -6)   
I'm sorry that you're feeling so lousy! I have no idea what's going on, but I hope you start feeling better soon!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg 10mg of Prednisone every other day, Culturelle probiotic, and Zoloft (25 mg).


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/19/2009 10:29 AM (GMT -6)   
Keep us updated. I hope you feel better soon.
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/19/2009 11:20 AM (GMT -6)   
apparently the blood counts dropping are just due to my colitis. The chest x-ray was to check for tuberculosis because they are going to start me on remicade.

I'm just so tired of being sick already!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


notshure
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/19/2009 12:30 PM (GMT -6)   
hope you feel better i know haw nervous you are i was there a few weeks ago by myself i dont know you of curse but i feel for you best wishes get well soon
single father uc for three years
on pred 40 mg
sulfasalazine 4000mg
nexium 80 mg


Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 4/19/2009 12:37 PM (GMT -6)   
I can sure offer you a hug...(((Shelliesv)))
Ulcerative proctitis. On Asacol 3 3x a day, and Meslamine enemas nightly.
 Now on Hydrocortisone suppositories for 2 weeks.
 
Urgency is still my biggest problem.  rarely have D, but extreme gas and urgency at any given time.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/19/2009 5:57 PM (GMT -6)   
Sorry you have been in such misery.
I think I would be a most difficult patient, because I would not go to the ER or let them admit me or do tests or xrays without knowing exactly why, why, why...

And from what you describe, I am wondering: Why do tests at the ER, the most expensive (and miserable) place for health care? Why do an xray for TB, when a simple skin test is all that is necessary? (No wonder health care costs and health insurance is going through the roof! assuming you are in the USA)

I'm honestly trying to understand. Do you think the hospital stays help you?
(BTW, it is cool is it that we can stay in touch via the internet this even while you are in the hospital).
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 wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 


svetla
Regular Member


Date Joined Jan 2009
Total Posts : 32
   Posted 4/21/2009 12:25 AM (GMT -6)   
hi , i'm sorry you are feeling so miserable. i would be in hospital now if i wasn't so stubborn, probably. i don't trust conventional medicine anymore, but still it is the only way to find at least some relief. or is there any other way?...who is with the kids? a am also a mother of 2 -ages 7 and 3 - and the thought of being so useless and unable to enjoy their company and be the cool mom i wish i was ... so tired all the time. just think that after all that you will be in better condition and will be able to enjoy things thoroughly.. or at least more.
take care, try to take some rest and hope they know what they are doing...

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/21/2009 3:05 PM (GMT -6)   
Hi Michelle, wondering how are you doing today?
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 wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 


Ghena
Regular Member


Date Joined Apr 2009
Total Posts : 31
   Posted 4/21/2009 5:22 PM (GMT -6)   
dear Michelle,
I can empathize with you. I was just discharged from the hospital for 2nd time in 3 weeks for bad flare of UC. they had also done several CAT scans... All the meds, YUK!!!! Normally in the hospital I am the doc, It was a very different experience to be the patient. Keep strong in your mind, your body will heal. It is important to MONITOR the patient's lab results, but it is always crucial to TREAT the patient, not the labs..
feel well
Ghena
31 UC>>

Ghena
Regular Member


Date Joined Apr 2009
Total Posts : 31
   Posted 4/21/2009 5:22 PM (GMT -6)   
dear Michelle,
I can empathize with you. I was just discharged from the hospital for 2nd time in 3 weeks for bad flare of UC. they had also done several CAT scans... All the meds, YUK!!!! Normally in the hospital I am the doc, It was a very different experience to be the patient. Keep strong in your mind, your body will heal. It is important to MONITOR the patient's lab results, but it is always crucial to TREAT the patient, not the labs..
feel well
Ghena
31 UC>>

Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/21/2009 8:28 PM (GMT -6)   
Peety,

I didn't quite explain well. I knew fully well why I was coming to the E.R. I was on steroids for 4 weeks, running a fever while on steroids (which is not normal) and with the abdominal pain they needed the blood tests and imaging to rule out appendicitis and the movement of my intrarenal kidney stone. Because of the anemia, severe colitis, and fevers they decided to admit me. I fully supported the admission because the IV steroids and fluids were a huge improvement 2 weeks prior.

I was a little groggy with the chest x-ray, but had discussed the TB test and x-ray for Remicade previously and was pretty certain that was what it was being done for (and it was). With Remicade they need to be absoluely certain that there is no chance you have TB or any lung infection.

At this point, my only option is Remicade or surgery and that is what I am trying to decide on. My first dose of Remicade is tomorrow morning and I haven't yet decided if I'm going to go through with it. I had an allergic reaction to the solu-medrol before and my flex sig showed my colitis has gotten worse and not been responsive at all to 2 months of meds and steroids.

I am doing my research tonight trying to decide which is better - surgery or Remicade with the risk of lymphoma and infection
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/21/2009 8:28 PM (GMT -6)   
Peety,

I didn't quite explain well. I knew fully well why I was coming to the E.R. I was on steroids for 4 weeks, running a fever while on steroids (which is not normal) and with the abdominal pain they needed the blood tests and imaging to rule out appendicitis and the movement of my intrarenal kidney stone. Because of the anemia, severe colitis, and fevers they decided to admit me. I fully supported the admission because the IV steroids and fluids were a huge improvement 2 weeks prior.

I was a little groggy with the chest x-ray, but had discussed the TB test and x-ray for Remicade previously and was pretty certain that was what it was being done for (and it was). With Remicade they need to be absoluely certain that there is no chance you have TB or any lung infection.

At this point, my only option is Remicade or surgery and that is what I am trying to decide on. My first dose of Remicade is tomorrow morning and I haven't yet decided if I'm going to go through with it. I had an allergic reaction to the solu-medrol before and my flex sig showed my colitis has gotten worse and not been responsive at all to 2 months of meds and steroids.

I am doing my research tonight trying to decide which is better - surgery or Remicade with the risk of lymphoma and infection
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/21/2009 9:01 PM (GMT -6)   
Have you asked about Humira? Are they giving that drug as an option to you?
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/21/2009 10:27 PM (GMT -6)   
Ah, I see. You must have been worn out from going through all that.

How frustrating that you haven't been able to reach remission again. Of course you can try Remicade and, as my doc pointed out, then have surgery if it doesn't work out for some reason.
I started remicade last week, and already I'm doing better than I can ever remember!

That said, I was diagnosed in my mid 20s and, as I've said here, if I had thought it through I probably should have had surgery and not left myself fighting this disease for all these years. And I never had kids to be responsible for, with all those demands and wanting to be up for all their activities...flaring is a drag.

Keep in touch
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 wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone 40mg, down to 10mg so far so good... Humira denied, started Remicade 4/12 and doing great~ 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/21/2009 11:22 PM (GMT -6)   
Peety, that's what I have basically decided to do -- give Remicade a try with surgery as a backup40mg. if I decide the risks of Remicade are too great, but I'm now wondering if a single dose of Remicade can cause lymphoma. I'd rather live without my colon than face a lymphoma diagnosis and I have to decide tonight since my Remicade treatment is scheduled for tomorrow.

I'm just really tired of being sick. Today's sig shows no improvement in my colitis despite over a month of steriods and now back up to 40mg.
I am feeling better in the hospital but I was on a liquid diet and given IV steroids. My husband thinks I should come home and give it a few days before Remicade.

Another course of therapy was 6mp, but my other doctor said that can take 6 weeks to work and I really don't want to be sick for another 6 weeks. This is really a hard choice to make!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/21/2009 11:25 PM (GMT -6)   
svetla said...
hi , i'm sorry you are feeling so miserable. i would be in hospital now if i wasn't so stubborn, probably. i don't trust conventional medicine anymore, but still it is the only way to find at least some relief. or is there any other way?...who is with the kids? a am also a mother of 2 -ages 7 and 3 - and the thought of being so useless and unable to enjoy their company and be the cool mom i wish i was ... so tired all the time. just think that after all that you will be in better condition and will be able to enjoy things thoroughly.. or at least more.
take care, try to take some rest and hope they know what they are doing...
Svetla.
 
My kids are 5 & 9 and thankfully my parents live very close. My mom is between jobs and my dad is retired so they have been
a goodsend for me with the kids!  Still I am just tired of being stuck in bed so sick with my colitis!  I just want to be better!
I'm supposed to go home tomorrow and really looking forward to it!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/22/2009 8:15 AM (GMT -6)   
I agree, it might be good to think about it for a few more days before you decide. Things might become clearer for you. That's what I do when I have to make a big decision!

Were you given some statistics on the lymphoma risk? Although I'm aware there are risks of Remicade causing other health problems, I was not under the impression the risk was very great that it would cause cancer. (I still would have tried it, but I'm in a different place in life).

Happy homecoming! It's great that you have the family support.
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 wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone 40mg, down to 10mg so far so good... Humira denied, started Remicade 4/12 and doing great~ 

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