I hate you c diff

[xoxava]

i hate you c diff

just a quick whine to get things off my chest! my stupid c diff is still here and annoying..ugh. its so weird bleeding that much. im on 250 mg vancomysn for pulse therapy so after that i go to 125 mg then down until i take one every other day and my GI is hoping this will kill the spores and keep it from returning again. however if the c diff wasnt the cause for the bad flare then i will start remicade. im just ready for some stupid relief. this blows, majorly. and i cant even imagine how it is for those of you who have it much worse than i do. ive been to the ER so many times i cant even count. its so frustrating sometimes dealing with everything life wants to throw at you AND this at the same time.

ive also found it quite difficult to explain to others, i wish there was an easy way but in reality there really isnt. my finace has been with me before i was DX. hes been great of course taking care of me and doing things i need done when im not capable. but we do have our fights. i feel bad because we are so young and we should be going out and having fun and doing things and having awesome date nights. but i can never predict when im going to feel ill and then it seems to ruin everything. i feel bad that we make plans and then before you know it my stomach is hating me and im literally bleeding out of my ass. im just stuck i guess. im not sure what to do next. i understand there is only so much one person can take, but if i could predict when i was going to feel bad or have an attack, that would be freaking awesome. but the sad truth is, i cant. there are days that i feel so bad i dont even want someone to touch me!

and this prednisone is driving me INSANE. i hate that its the only thing that works for some relief but the side effects are so horrible and hard to put up with ugh. my resting heart rate is 125 so if i go across the room i literally feel like i just ran a 5k marathon and my heart is going to pound out of my chest. my hands shake so i cant hold things, write, drive, whatever. and i take prozac for stress/mood/anxiety and i think this time the prednisone is like canceling it out or something. i get mad sooo quickly and at the worlds DUMBEST things. it just ruins my whole day but i cant seem to control it. sometimes i just find myself breaking down in tears because i realize how mean i am being to others and of course i dont want to be but it just happens and i dont know how to make it go away.

so. sorry for the long whine. just needed a break i guess. i hope everyone is doing well.

and. i hate you c diff. i hate you crohns. i hate you prednisone. I HATE YOU GUTS. ugh >:[

 

[Nytefyre]

Yeah, I'm with you on the hatred of c diff. Have you been taking a probiotic along with the vancomycin? If not, I'd hop on it. I just ordered the Jarrow Formulas S. Boulardii. It is cheaper than Florastor and supposedly just as good. I've started my 3rd round of vanc so it's another $100 copay.

I agree with your hatred for pred, as well. What dose of pred are you on? Would your gastro allow you to drop 10mgs of the pred so you take less of the drug? Or maybe up your dose of Prozac?

Anyway, I wish you much luck with the c diff.

 

[MADiMarc]

I am sorry you are going through so much. It does suck. I was 19 & had been married 6 months when I was diagnosed. I know how you feel. Every time you make plans or start to get a bit romantic, the flipping stomach starts & then the pain & then the rest. The probiotics may really help. BTW: I hate pred too. Can you do Endocort instead? I don't know where your disease is centered, so I don't know if it will help or not.

Good luck,
Michele

 

[xoxava]

Thanks for the replies guys! Yes I take a probiotic I take florastor bc its gluten free. And I've tried endocort but it has no effect on me. I was just lowered to 40 mg pred but was on 80mg for 7 months!!!

 

[Nytefyre]

Thanks for the replies guys! Yes I take a probiotic I take florastor bc its gluten free. And I've tried endocort but it has no effect on me. I was just lowered to 40 mg pred but was on 80mg for 7 months!!!

First of all :thumbdown: for having to be on 80mgs for 7 months. Cru-a-zee!
The only way I could do it so that my body was no longer dependent on the pred was to stop ALL my medications. This is not an advisable plan, hahaha!

But poopy that you have been on Florastor and still have c diff. I was hoping it would be like magic in a bottle. I have had c diff since Dec. so I really hope I have decent results with the kind I ordered.

Have the docs given you any other info on how to beat the beast that is c diff? If so, pass it this way, haha.

 

[xoxava]

Omggg I can't stay off the toliet and my butt hurts sooo bad!! I just ate so I could take meds and I wish I didn't! Now I have massive D and vomitting! Ah! Why oh why must this be so difficult

 

[MADiMarc]

Oh boy! The fun never ends! If I had the secret to end this maddness, I would send it to you wrapped in a big bow. I am sorry all that I can do to help, even a little bit, is to listen.
Michele

 

[Nytefyre]

I feel your pain, literally! Okay, maybe I don't feel your pain but I have been on the toilet all day too! and MY BUTT HURTS!

Wow! Vomiting? Should you be thinking about another ER visit? Or maybe Ensure for several days?

Be safe!

 

[ameslouise]

Oh, Ava, I'm so sorry you are going thru this! I feel for ya. The unpredictability of this disease is maddening. IMO, it's worse than the symptoms and the drugs.

And the pred - SUCKS!!!! It really can make you insane and nobody can understand it unless they have been on high doses themselves.

Hang in there sister. I hope it clears up for you soon!

- Amy

 

[xoxava]

Thanks for all the replies! I hate to be so whiny but your support means so much to me! I would truly be lost without you guys. Its so great to have even someone to just listen! And I must say I just received one of the funniest text messages. My friend said "OMG I have horrible diahrea and it won't stop!!" The only response I could think of was "trust me I know how it feels!"

 

[MADiMarc]

Don't worry about whining. Just so you know, your whining skills are sub par: I should know, I have a gold metal!
I have a question: why does just about everyone on this forum apologize for feeling sick, tired, depressed? I do it too, I was just wondering. Guess we all feel we must "suck it up" and get on with it. Yesh!
Hey, hon, you feel like crap & you are tired of it! No apologies, k?
Michele

 

[Joleen23]

I hate C-dif soooo much , had it a month ago and was in hospital , not much fun sitting on the toilet and holding a sick bucket at the same time, betta now but remember how bad it was. Hope ya feel betta soon

 

[silveyk]

C.diff sucks. My spouse brought it home from the hospital, and shared it with me. Irony is...I study c.diff trends in my state. Things to know: c.diff is not killed by alcohol hand gels. Must use soap and water. Also c.diff sporulates....so you think you killed it but out is just chilling in your system until your gut flora go outta whack from anti biotics. All rooms and bathrooms need bleaching after you've had c.diff to kill the spores. Oh...if you are paying for vancomycin pills...you are getting ripped off. Have the the pharmacy put the equivalent dose of IV vanco in a syringe. Squirtin mouth...and save $.
Dr.s (spouse of crohns patient)