No c-diff, but Day 3 in hospital

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/29/2009 2:47 PM (GMT -7)   
Well, repeating the c-diff was still negative.  I kind of wish that had been it because at least there is a treatment to fix that, relapses aside.  Maybe it was spurred on by the antibiotics, but whatever the case, the inflammation is just solid and bad.  Not much they can do beyond mega IV steroids... leading, again, to steroid-induced diabetes, high blood pressure, etc., etc. 
 
Clear fluids for 2 days (one before the checkin) and now on full liquids, but I'm not caring much about eating.  I was dehydrated enough to need 3 liters of fluids in ER.  My pulse was resting 114 or so and standing 125.  Holy moly.  Great fun.
 
On top of it all, my daughter's dad (my ex) is acting like I am inconveniencing him.  He called a meeting at his work such that he was *not* able to pick her up in time from school and then did not set up other arrangements!  I was on the phone at 9pm last night calling my friends and other moms.
 
For that all these reasons, I am starting to tell myself that Cimzia has until summer.  At that point, it's time for an ostomy.  I can't do this.  I want my life back and I want to be there for my girl.  I am so very sad.  But, they say they can do a temp ileostomy and that maybe it can even be laparoscopic.  If I felt like I could start to get back to real life, and feel half way decent again ...  That sounds pretty darn good to me right now.  Since it's all my my lg intestine and rectal region, no resections for me.  It's the whole nine yards...  But, if it's temp I can reverse when some other promising med comes along.  Like maybe Prochymal.

Thanks for listening.  I think I will be here through Friday.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/29/2009 3:31 PM (GMT -7)   
Oh I'm so sorry. It's bad enough to be sick, without having the burden of caring for your daughter as well when you're so sick. Do you have some friends or family nearby who can help you out? (((hugs))). I admire you for being so strong. Perhaps the hospital knows of some support / volunteer organizations/church groups that maybe able to step in help out, be able to care for your daughter when you are in the hospital? It's probably worth looking into - the nurse at the hospital my husband was admitted to, and the patient advocate both gave us some brochures of places that offer some support.

Hang in there, hopefully the steroids will fix you up, and you can figure out the next steps without being in such agony.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/30/2009 5:19 AM (GMT -7)   
Please hang in there! Better days are coming! I am so sorry you are having to endure this right now. You are a great Mom to be there for your daughter. I'm praying your health stabilizes very soon and that all the drugs get you back on your feet by the weekend! Also praying that your Ex gets a clue ASAP.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/30/2009 7:52 AM (GMT -7)   
Thanks both for your support. I am improving... The two iron infusions and mega doses of IV steroids seem to be helping. (dang, back to oral steroids again ;-( :-( ) I get soft food today and hopefully go home late today or tomorrow. If I go tomorrow, my daughter can stay at a friend's house instead of her dad's. That will be fun for her, I think. I don't know if I want to leave today or tomorrow... I guess it depends on how the doc talk goes.

I really needed help and am angry that I could not get my GI office to respond appropriately in any timely manner (he was out of town, still is). I like the doc here and am thinking of following him outside to his practice. I hate switching doctors but being that sick and not getting to see a doc was unacceptable. And I told my ex that I refuse to banter argue in email. I just don't need his excuses now. I did schedule an appointment for my daughter with her counselor to discuss all of this. She was upset with her dad too and I'm trying to get him to schedule his own appointment... We'll see. They say you can't teach an old dog new triicks...

Thanks again PV and FallColors!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/30/2009 1:21 PM (GMT -7)   
My g'son is in the hospital with a flare right now. My heart goes out to you, sr5599. Hugs & hope you "get well soon"....
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/1/2009 10:48 AM (GMT -7)   
hey, how are you today? Getting better?
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/1/2009 4:46 PM (GMT -7)   
Just got home... and I am exhausted. They've got me back on oral steroids (been on them all but about 7 months out of 2.5 years). It will be a reasonably quick taper (safety first) then see how I'm doing with Cimzia. I still feel like the antibiotics set me off. I've been holding my own (not remission by any stretch, but livable) for months on the budesonide suppositories and then I take the antibiotics and BAM... So maybe with the steroid taper I can get back to learning if Cimzia is helping. If not, it's surgery time. I spoke to the surgeon about a temp ostomy and also talked with the ostomy nurse and got samples. Oh and a seton placement soon in hopes of grabbing that fistula back before it re-tracks elsewhere. Maybe I can finally ditch the low-grade temps and night-sweats.

Feeling blue, but I also started Celexa. I guess it's time... Until it kicks in I will be able to use my lorazepam for bad times. Part of me is just so ready to lay on that O.R. table... But, I've got to give Cimzia a fair run of it.

Thanks for asking! It is nice to be home with my animals and little girl. :-)
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/1/2009 7:58 PM (GMT -7)   
I'm glad you got home. Do remember to give yourself enough rest - you sound like a very on the go mom to me. I hope the Cimzia works - I'll keep my fingers crossed (not literally of course) :-)

I agree that the antibiotics could have made your flare worse - just like steroids though, they are sometimes a necessary evil. Do take plenty of probiotics, and remember to give yourself enough rest for your body to recuperate. Hang tough, and let us know how you're doing.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood

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