Infection in blood, real sick, need help!

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elephantlover
Regular Member


Date Joined Mar 2008
Total Posts : 56
   Posted 2/27/2009 2:14 PM (GMT -6)   
Hi everyone, it has been awhile since I have talked with you guys, but I have been real sick since Nov. 08. Can't sit at P.C. long, makes my bum hurt. I have been in a serious flare up and it seems Drs are doing nothing. We have been being told since Nov. That I have  infection in my blood, and the flare-up is why I am so sick. Have no energy, lost another 21 pounds, white as a sheet, red rimmed eyes, sleeping is my only releif and even then I wake up running to bathroom. If I eat something it doesn't last 5 minutes. Got me on Percocet for pain, 9- 750mg colasal a day, Canasa nightly, Rowasa enemas, Bentyl, Probiotic, Vit D (vit D dropped to 16.7, which is very low, made my muscles ache and cramp so bad) Had me on 50,000 UI's once aweek, it is up to 49 now and i am on 2,000 ui's a day now, muscle relaxers, etc. I go back to GI on March 9th, so I am trying to get as much help as possible on this infection in my blood, they say it is coming from the UC. I asked about putting me on a antibiotic and they said it wouldn't help. My GI said she is going to put me on steroids when i come back, but I have heard so many bad things this scares me. Which is worse steroids or predisone? My stomach hurts all the time. My quality of life is slipping away and my Dr.s seem like they are in slow motion. We have two Insurance's, so that is not the problem. If anyone can help me, give some words of wisdom, PLEASE, let me know. Will I ever be me again? I hurt bad around my naval also, does anyone else hurt here. My bum hurts all the time and feels funny. Thanks for any and all the help you can give me.
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/27/2009 2:20 PM (GMT -6)   
pred is a steriod, and it's a short term fix. I can see not giving you the antibiotics they can irritate UC.
You may be really against this, but it might be time to talk surgery, its sounds like this has gotten way out of control, and DEF time to find a new dr or get a second opinion!
Hope things get better for you.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 2/27/2009 3:18 PM (GMT -6)   
OMG...how horrific for you to be going through this! What exactly is the name of the particular blood infection? Have you done any research on it?

I don't know if the 2000 UI of vitamin D is high enough....my vig D is low..66, and I'm taking 2000 UI.

Are you also taking Calcium? Magnesium?

I cannot comment on the steroids....maybe your GI's wanting to use steroid topicals such as the rectal meds instead of the systemic meds. Maybe that's where you could start.

I would do two things....1)do the extensive research on what exactly you have and what it is you can do for yourself to help improve your situation before you see the doctor. 2)Make a list of extensive questions to ask your doctor.

Are you able to eat? Are you getting enough nutrients to sustain your situation?

Have you heard of a product called Ribose? It might help you with your energy and body pains. A friend of mine suggested it, and it seems to be helping. Oh, as well, her vitamin D was low....seems an epidemic.

I'm wondering if you have fissures or hemmorhoids or maybe a fistula or abscess in the perianal area? Did the doctor take a look to see what's possibly going on?

Have you taken a look to see what's going on? If the outside of the area is red/angry looking, maybe you could use a hydrocortisone cream. If that doesn't help, maybe you have a yeast infection and an antifungal product might work.
Zinc is also another thing that could help sooth a very sore butt.

Please keep us informed as to how you're doing.

Hang tough...hope the doctor is able to give you the answers you need.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 2/27/2009 5:03 PM (GMT -6)   
     I can only speak from my own experience with UC.  I was in a very bad flare last year from May thru the end of Oct.  During that time I was hospitalized for ten days.  When I was discharged from the hospital I was still sick as a dog.  I had pain radiating into my vaginal area down into my legs.  I even saw a gyn doctor as I thought maybe I had an infection in my vagina or cervix.  That all came back clear and she explained that I was so inflamed in the rectum the pain radiated to the other areas.
     It wasn't until my GI doctor "jump started" the prednisone at 40 mgm with a 10 mgm per week taper that I was able to achieve remission.  When my prednisone was started at 30 mgm and tapered I would always relapse after being weaned off for two weeks.  I also take 6MP.  That, along with the prednisone, is what helped me into remission.
     I was on Cipro for awhile.  When the doctor gives me Cipro, he also has me take Flagyl along with it to keep the "good" bacteria from getting destroyed.  At least that is how he explained it to me.  I also was on rectal meds...Cort enemas alternate nights with Canasa.
     I took Hydrocodone for pain.  It helped a lot.
     I cannot understand why you are not on an antibiotic.  Antibiotics are used to treat infections!  Aren't they giving you anything for the infection at all?  I would search out another opinion and fast!
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.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 2/27/2009 5:52 PM (GMT -6)   
Infection could be a general term used by the doctor? What exactly is the infection?..bacteria? fungus? That should be firstly determined.

For some situations, prednisone could exacerbate or shut down the system, making infections (or invaders to use a more general term) an easier time to take over.

I agree something more than nothing should be done....

q
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


me,too
Regular Member


Date Joined Mar 2007
Total Posts : 97
   Posted 3/1/2009 10:37 PM (GMT -6)   
Infection? Usually drs know by a high white blood cell or platelets count that there is some infection. They test to try to figure out what the infection is. If they don't run the proper tests, they may never figure out what your infection is and will just try whatever to make you better.

In my case, I had a virus, which was brought on by emergency doses of remicade or steroids. The antibiotics I was getting (because that's the standard treatment for severe UC) did not help, because they fight bacterial infections but are useless and even harmful with viruses. I had cytomegalovirus (a virus that was dormant in my system, but activated in my intestines when my immune system was taken down with remicade or steroids). Once they figured out I had CMV, after a 2nd colonscopy (done by a much better doctor in an affluent community, had to pay out of pocket), I was taken off antibiotics, tapered off of steroids as quickly as possible, not given remicade again and put back on the highest dose of asacol and given an antiviral (Valcyte).

I followed a sugar-free, grain-free (no breads, rice, etc.) diet with no processed foods (I make everything) for about a year. In the last few months I've been adding beans and corn and potatoes back to my diet... I must say I am feeling great. I'm still on ASACOL, occassionally I have mucuous and tiny bit of blood (I would say about once a month). I feel about 95+% normal.
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