When does it stop?

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PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/14/2008 1:52 PM (GMT -6)   
My scope was Monday and they said they would have to research the Humira for me because of my Kidneys, they are aparently restricting my UC treatment options greatly.  I just spoke to the nurse and she doesn't think that they are going to get the "go" on the Humira which leaves them looking into Remicade.  I'm no longer freaked about the drug itself . . . . it's the way it has to be given that poses problems for me.  I have horribly bad veins and already have to be subjected to an IV for my anemia every month, now add Remicade and I have to get nabbed twice a month?  confused This is going to be sheer torture.  It takes them 3-4 tries to get a line in me and I come out looking greusome when they are done blowing veins on me . . .now I will have to go about every 2 weeks so I won't ever have a break from the bruising!  Does the horror show with this disease ever stop?  Just when you think you are ok and doing well something more demoralizing seems to come knock you down the few pegs you were able to struggle your way up to and then a few more just to add insult to the injury.  sad
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/14/2008 2:04 PM (GMT -6)   

Sorry for your news - maybe it will end up better.  Maybe you could get a "port".  My husband has one for chemo and blood tests, etc. as he has your problem veins.  It is wonderful!  When not doing treatments he only has to go every month to have it "flushed" - really no problem and he is free of painful stick after stick and bruising.  Ask your doctor.  Here is the info from internet - there are more than one kind but my husband has this one and no problems doing anything he wants.

http://www.activeinfusion.com/services/implanted_port.html

Whatever is decided - the main thing is that you get relief from the UC.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 3X3
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa
 
 
 
 
 
 


bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted 8/14/2008 11:49 PM (GMT -6)   
Oh, I feel your IV pain. My veins are terrible, too. They look fine, and every nurse thinks that it's going to be no problem, and then 4 tries later they admit that I was right. Had my first full scope today, and my arms are nice and bruised all over from the IV attempts. Sorry, no good advice, but hope things get better for you!
*Diagnosed pancolitis 10/07 (6 months pregnant w/ 2nd baby)
*Currently in remission
*Tapering prednisone - at 20 mg
*Lialda (3 x a day)
*Canasa
*Prilosec
*Calcium, multivitamin, Metamucil, iron, fish oil, probiotics


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/15/2008 7:09 AM (GMT -6)   
Thanks for the sympathy. I'm sorry I was so cranky . . .all the general frustration of seeming to have nothing in my body work right just got to me.

I was taught a harsh lesson yesterday. I was cranking about my bruises from IV and a high school teacher/ best friends father who had faught and beaten 3 types of cancer in 5 years about 4 years back died in his car of a heart attack. Life's too short to crank about things and I should enjoy what I still have because there's always a chance of worse things.
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 8/15/2008 8:44 AM (GMT -6)   
I'm so sorry! Its no fun to feel like a pin cushion

I am a total needle-phob. I use to pass out when they would draw blood. This disease has changed that a bit but I still hate it.

The last time i had a scope it took the head nurse, a hemotologist, and the anestesiologist to get a vein. 11 tries in all. I was so black and blue. It sounds like your veins may be even worse.

The remicade needle is super tiny. A lot of IV drugs are very thick and need a big old needle but remi isn't one. I hope it works out for you!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/15/2008 10:12 AM (GMT -6)   

Still hoping you gals will ask about the "port" - it has been so wonderful for my husband - sorry if I repeated myself but I did not get any answers about it.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 3X3
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa
 
 
 
 
 
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/15/2008 11:02 AM (GMT -6)   
They are leery of the port for me because of having a toddler, they said they would rather wait until he's a little older in another year or so before trying the port. When I pick him up he grabs ahold of my bra strap (normal I'm told) and the port would be right under it. If it's early in the morning and I only have PJs on he literally grabs a handful of skin (yes it hurts). With a port in place there would be a risk of him pulling on it too hard and causing issues, internal bleeding and infections were just 2 of the things they were talking about that could happen. He's the same reason they don't want to do the arm ports, they are more exposed and would be easier for him to pull on. He's not a bad child, they have just seen these things happen in the past and know to be careful about them. So for another year at least . . . I'm kinda stuck being stuck.

the one consolation to how my son grabs ahold of me is that he does it to my husband too and gets a hand full of chest hair underneath the shirt *grin* the pained expression that he tries to suppress is too funny not to laugh at.
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/15/2008 12:16 PM (GMT -6)   

Your son sounds "normal" to me.  I do know the risks and now I understand.  Just hoping you get "good" nurses and doctors who know what they are doing - some are better than others!!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 3X3
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa
 
 
 
 
 
 

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