Update on Dani

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SupportiveMom

SupportiveMom

Joined
Mar 17, 2013
Messages
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Day 2 of the hospital. Had our scope today. Doctor was thrilled she actually saw some healing. Things look better than they ever have!

So that left us with what the heck is going on with the diarrhea and blood. Its clostridium difficle. OMG! Read the symptoms and how would you know it is not a flare?! At least there is good news and she is healing! Now we are stuck in hospital quarantine. At least there is now food!
 
C diff, well I'm glad it's not a flare but sorry it's c diff. That's nothing to fool around and can be very dangerous.
Hope she's better soon. How long will the stay be now?
 
I know very little about c diff and am learning quickly. Amazing how nurse protocol hasn't changed much. Still waiting on antibiotic so doubt it will happen tonight. Doc is optimistic hoping monday now. The thought that all these hightened issues the last few months could have been the c diff is baffling. And I hope the doc is right that once this is under control we can bring down some levels of medications.
 
Sorry, we battled that over the summer :( Hope it gets taken care of quickly. Glad she is healing otherwise.
 
Good thing they finally figured it out. It might be a combo of flare and c.diff following or complicating things, it's hard to say.

First thing our GI does when there's a change in bowel symptoms is stool cultures. First thing before they will do anything or consider anything else is ruling out infection. I really don't understand why more GI's don't have the same approach.

I wouldn't look to have med levels reduced right away - c. diff can cause flares and it can be hard to beat in CD patients.

Before she comes home do a thorough cleaning of the house especially the bathrooms and kitchen. All hard surfaces should be wiped down with bleach-based cleaner. Think doorknobs, light switches, outside of frig and phones for example. Wash her bedding and clothing she's worn recently but might not get washed regularly like jackets and sweaters. C. diff spores can live for months on hard surfaces so you need to try to get everything clean and avoid re-infection.
 
My daughter had cdiff this winter. It was no fun! She did two weeks of antibiotics and started feeling a lot better after 4 or 5 days. By the middle of the second week, the diarrhea was mostly gone and she felt almost normal.
Wonderful to hear Dani is healing! Hope the antibiotics kick in soon!
 
Ditto to Patricia's post...first thing our GI does is test for infections. Sorry the poor thing suffered for so long and it was something relatively easily fixed. But now you know so onwards and upwards!

Cdiff really does stink! And the quarantine drives me batty!

I hope she responds super quick and you are well on your way.
 
Amazing how much the symptoms mimic Crohn's. The doctor in the hospital said she could have had it for a while, it is hard to know. Her GI felt so bad she didn't think of the obvious and was looking into other alternative options with her current issues. I am just glad we are finally now home and maybe now I can get a full sleep again. Oh look, just in time to go back to work!

I will be cautious on the reducing meds, but I think she is on a lot of them because of no relief. If most of this was from the c diff, there will be no reason to not reduce the meds. We should be able to taper off the prednisone. Anything else would just be a bonus.

House fully lysol-ed, bed stripped and I am fully exhausted. Just glad we are all now home.
 
I was told that once you have c diff. that you can have recurrances of c diff. for up to two years. Does anyone know if this is accurate information?
 
Once you've had it your more prone to getting it again, but I don't know if that's just due to returning to the environment where you had it/got it before (if the house was contaminated and not cleaned before you got home). Ive had adult patients with it (who don't normally have GI problems) that have it recurring but it may also be that they don't take all of their antibiotics, its hard to monitor adults once they return home.
 
Will you look into fecal transplant as a therapy to cure the cdiff? Is it on your radar? I follow the thread in the research section that WildBill maintains. There are studies under way that fecal transplants have been very successful in c diff and may help w/crohn's as well...
 
Anyone know of anyone with experience in Canada? Traveling to the US for medical procedures is not ideal especially with the costs involved. It is near impossible to get any costs covered by government insurance (OHIP) and I doubt our addition insurance would even consider it. How much are they charging for these procedures in the US?
 
Maybe you could contact Dr Hemker's office and ask her about Canada physicians...Also you might want to ask on WildBills thread. There are many people following his thread.
 
I'm going to tag in Kill Colitis (or Killcolitis) - I think she may have looked into this for her daughter??
 
Thought I would share some good news. Got back the MRE results and there is actual healing! No fistulas or abseses! Maybe she might find remission one day soon! Really hope to get there...
 
That is brilliant news SupportiveMom! :dusty::dusty::dusty:

So happy for you and your lass and sending loads of luck that all continues to go well! :goodluck:

Dusty. xxx
 

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