Need encouragement - bad treatment today

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PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/11/2008 6:23 AM (GMT -7)   

This isn't directly related to UC but causes my UC to get REALLY ticked off and I'm not looking forward to it.

I have my IV for my anemia today, the last 4 times I've gone I have had a weird reaction to the IV. I start getting stuffy instantly, I get flushed face and chest, I get hot and cold shivers and then my UC gets really ticked off and I have about 30 seconds warning before I better be in the bathroom, on the way I have to grab the trash can because it's so sudden and violent I end up getting sick at the same time . . .all of this is while dragging an IV pole along with me and trying not to pull it out. Last time they gave me something different before starting the iron that made me not get sick (I think IV tagament) but I still had that urgent violent dumping sensation. It's better when you aren't heaving over the trash can but still not a fun experience.

I know some would say "just stop doing it" but here's the thing. . . . I may go through a horrible evening because of the IV but I do end up passed out cold for the whole night and wake up feeling really good, not tired tons of energy the next day and I feel that good for the next 1.5-2 weeks before my iron stores drop low again.

I just get really depressed at knowing how horrible I'm about to feel and I feel like I'm cornered because there's no other option but to go through with it. Taking iron supplements is out of the question for me, we've tried that route MANY times over and I never drop low enough on my iron stores to be able to take the Arynesp that they give chemo patients to bring their iron up.

Sorry to whine I just really don't know anyone that understands being stuck doing something you have to do that's completely not what you want to do any better than people with UC that often have to put up with vile things just to survive and hopefully progress towards remission.

Thanks for listening


Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36

"The List "

- UC dx 8/2000 - Culturelle 1x day Colozal from 6/2001-7/2007 - Curently not flaring but not what I would call in remission either. 
- CKD Stage 3 (Chronic Kidney Disease) dx 9/2007 Lisinopril 7.5mg - Still have 27% function
- Anemic - Ferolicit IV bi-weekly for now (re-evaluated every 16 weeks)
- Allergies - Zyrtec 10mg  - skin hives when exposed to water (not kidding)(haven't been tested officially but pine alergy is also suspected)


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/11/2008 7:57 AM (GMT -7)   
Wow, I'm sorry you have to go through this. Is this through your GI doctor? Maybe it won't be as bad this time. Good luck and keep us posted. Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 7/11/2008 8:30 AM (GMT -7)   
Hmmm, I wonder if you're allergic to something in the IV? I am so sorry that you have to go through this! Stick in there! You're strong!
Tressa 35 (F)
probably pancolitis, but almost in remission!
Canasa twice/day to get that last 5 cm
Asacol 12/day


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/11/2008 8:49 AM (GMT -7)   
So sorry you have to feel that way! There's got to be something they can give you to stop that reaction... Have you discussed it with your doctor? Maybe a pharmacist would have an idea?

Hang in there!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
5mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


checkerjane91
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 7/11/2008 9:40 AM (GMT -7)   

Kim,

I am so sorry that you are feeling this way!  It stinks feeling like there is no other option as far as your treatment.  It's almost like having to make a decision of which is worse, and that's not fair.

I am sorry that I don't have any words of advice for you.  I just wanted to let you know that I feel your pain.  I hope you feel better soon!

Beth


40 mgs of Pred
50 mgs of Imuran
3 Lialda
1 Canasa at night
 
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/11/2008 10:26 AM (GMT -7)   
Thanks guys. I have discussed this with them, that's why they started the tagament in the IV first, that was actually a big help because it stopped the nausea. This is through my hematologist. Around here it doesn't seem that any one doctor or specialist wants to talk to the others or make a decision on what the best course of action is. I see too many doctors in my opinion, eurologist, nephrologist, hematologist, endocrinologist, ob/gyn, pcp, gi, optometrist, ophthalmologist and ENT. . . it's all too much to keep track of some times.

Oh BTW I'm currently starting the IV with fingers crossed. . .I found out a few months ago that if I sit in the last treatment chair I can access the hospital's wireless next door LOL

Unless something new comes along I don't see any other options, I've been going for IV's since about June 2006.

The good news is that my levels are up and this should be my last IV for 6-12 weeks! After today I get a break!
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36

"The List "

- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (good folic acid level and the only iron supplement I can manage to take)Colozal from 6/2001-7/2007 Asacol 8/2000 -5/2001 no effect - (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) dx 9/2007 with FSGS - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV bi-weekly for now (re-evaluated every 16 weeks)
- Allergies - Zyrtec 10mg  - skin hives when exposed to water (not kidding)(haven't been tested officially but pine alergy is also suspected)


pattytx
Regular Member


Date Joined Jun 2006
Total Posts : 139
   Posted 7/11/2008 6:37 PM (GMT -7)   
That is terrible that you have to go through all of that over and over again.  I have had periods of time when I have had to do the iv iron thing.  I had a horrible adverse reaction two years ago and they thought it was the type of iron that they gave me (iron sucrose) for that specific treatment.  It was a quicker process (about 2 hours) to infuse.  I went back to the longer-infused one (iron dextrose- which takes about 5 hours for me depending on the quantity of iron I need) and never had a problem again.  I wonder if they could switch the type of iron you are getting and if that would help with the reaction.  You shouldn't have to go through that each time!  Best of luck!
 

PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/14/2008 6:35 AM (GMT -7)   
OK how wonky is this. . . .. I think we made a break through. I didn't really get that sick this time, same meds same area everything except I was there earlier in the day. That really has no bearing except that they weren't cleaning up the room and wiping down the chairs while I was finishing up.

They think I might have been reacting to the stupid cleaners they were using on the chairs!!!!!!! I swear if it's something odd it's happening to me! Good thing was things went well and with my levels up they don't think I will need anything for another 6 to 12 weeks. We'll check again in 6 weeks to see where I'm sitting.

Thanks for the support!
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36

"The List "

- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (good folic acid level and the only iron supplement I can manage to take)Colozal from 6/2001-7/2007 Asacol 8/2000 -5/2001 no effect - (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) dx 9/2007 with FSGS - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV bi-weekly for now (re-evaluated every 16 weeks)
- Allergies - Zyrtec 10mg  - skin hives when exposed to water (not kidding)(haven't been tested officially but pine alergy is also suspected)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/14/2008 6:50 AM (GMT -7)   
Glad it went better. My advice was going to be to see if they could infuse you in a room w/ a bathroom and you could just start your treatment right on the toilet with the bag over head on the hook. Then you wouldn't have to run when you get the runs lol!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/15/2008 5:49 AM (GMT -7)   
ROFL the worse part about that statement FitzyK is that I've been going there now for 3 years and they all know me well enough that we rib each other pretty hard.. . . if I tell them I want to park in the bathroom they'd really set me up in there!
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36

"The List "

- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (good folic acid level and the only iron supplement I can manage to take)Colozal from 6/2001-7/2007 Asacol 8/2000 -5/2001 no effect - (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) dx 9/2007 with FSGS - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV bi-weekly for now (re-evaluated every 16 weeks)
- Allergies - Zyrtec 10mg  - skin hives when exposed to water (not kidding)(haven't been tested officially but pine alergy is also suspected)

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