Bratcat is flaring...again

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Bennie
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Date Joined Nov 2006
Total Posts : 552
   Posted 3/26/2008 7:01 AM (GMT -6)   
Unfortunately Bratcat is flaring. It came full blown-head on 2 days ago. This morning she is feeling the effects of needing potassium/electrolytes back in her system (leg cramps, dizziness, nausea). She is barely eating even though she knows she has to. She can't eat bananas (allergy) and dreads drinking Gatorade (reminiscent of colonoscopy prep). Any other ideas for something simple to get her electrolytes back up?
She did start the enemas again (hydrocortisone in the am, rowasa at night). The don't seem to help although we think they stopped working on the last flare. Waiting to hear from the doctor today. I have a feeling he is going to recommend Remicade. Bratcat refuses to do prednisone again (and I don't think her doctor wants her on it either).
--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


tjf
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Date Joined Dec 2005
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   Posted 3/26/2008 7:05 AM (GMT -6)   
On no! I am so sorry she is flaring again. Can she eat applesauce? Or a baked potato? Maybe some dry toast?

I had the same thing happen w/ the prep. I am forever ruined on apple juice. What about vitamin water? Tell her to hang in there! Let us know what the doctor says.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 3/26/2008 7:13 AM (GMT -6)   
Awww poor BratCat :( I was going to suggest the Vitamin water too. Just be sure she is drinking plenty of fluids regardless of what it is (except colas that is).
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


love4cats
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Date Joined May 2007
Total Posts : 458
   Posted 3/26/2008 7:20 AM (GMT -6)   
There are infant/child drinks that can be purchased at the pharmacy (pediolyte??) that she may be able to handle to bring her electrolytes up and keep her hydrated.
 
Poor girl.  Give her a hug for me.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


jujub
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Date Joined Mar 2003
Total Posts : 10407
   Posted 3/26/2008 7:48 AM (GMT -6)   
Orange juice is good for potassium. And yes, I was going to suggest Pedialyte. It's made for younger children so has different flavoring than Gatorade.

And bless her heart, she has good instincts about the Pred. I'm sorry to hear she's flaring again, hope it goes away soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 3/26/2008 8:19 AM (GMT -6)   
So sorry to hear this! Must be the season - as I started flaring out of the blue too.

Vitamin water is good - tastes very different than gatorade - to me! I would suggest mixing it with water though - there is a lot of sugar in it. I've tried Pedialytes as well - didn't care for the taste - but they're worth a try.

What about popsicles and those freezer pops in the tubes?

Let us know what doc says!

Hugs to you all.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
 
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GardenerJames
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Date Joined Jan 2006
Total Posts : 616
   Posted 3/26/2008 10:28 AM (GMT -6)   
I'm so sorry Bennie, my thoughts are with her. There are plenty of different gatorade type drinks out there, just go to that section and get a sampling of them for her to try and find one she likes.
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 3/26/2008 10:52 AM (GMT -6)   
Sorry to read that Bratcat is flaring again. What did you all decide about the oral acne med she had been prescribed around the holidays? RE nutritional drinks: I would recommend 4 oz. of fruit juice followed by plain water, + soy milk if she can tolerate it. Soy Dream vanilla & chocolate have a pretty good taste/consistency. She can try the small cartons to see if it agrees. Then some broth & toast. Best wishes to all at your house. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

hekela
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Date Joined Nov 2006
Total Posts : 731
   Posted 3/26/2008 12:16 PM (GMT -6)   
so sorry to hear she's flaring again bennie. hope that some relief comes SOON!

there is a great "sports drink" at natural food stores. trust me, i hate gatorade and really liked this stuff.
they'll just have it in the juice aisle and the label has a runner on the front. i can't remember the name.
but if i remember correctly it was just juice and some sea salt. so you could make it yourself if you want.

i like old hat's idea too.

((hugs)) to you both!
29, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.


Bennie
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Date Joined Nov 2006
Total Posts : 552
   Posted 3/26/2008 4:29 PM (GMT -6)   
Thanks for everyone's kind thoughts. We came back from the doctor. Her bloodwork is fine (mostly has been all along). The results of the metabolizing part won't be back until next week but they have been pretty good too. The doctor expects them to look good which will probably mean that she is not responding to 6-mp anymore (if at all since he is unsure if it is the 6-mp or the residual prednisone that was working).
He is concerned that in her last colonoscopy (around Halloween), there were signs of dysplasia. He had planned that she would be better now to do another colonoscopy to check again (without so much inflammation).
The doctor talked about if 6-mp isn't working she could start Remicade. However because of the dysplasia, it puts a whole other perspective on things. He doesn't want her to start Remicade if it looks like she will need to see a surgeon. He is not pushing for surgery but he is open, honest, and proactive. He didn't want to alarm us but he is being forthright.
For now, Bratcat is on prednisone. None of us want her on it (including the doctor) but he wants to get her under control soon and see what the colonoscopy shows.
 
So as of today, Bratcat's brother has a CT scan on Monday and Bratcat has a colonoscopy on Tuesday (still have to make the appointment). And so it goes.
 
BTW, she stopped the doxycycline after 3 pills. She felt icky as soon as she started so chose to stop them. Since then she has been "not feeling right". But since her schedule was kind of wacky and busy and she was fighting a sinus cold, we weren't sure what was causing the "icky".
Also the doctor ordered stool samples to check for c-diff.  I love being a mother!! eyes



--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.

Post Edited (Bennie) : 3/26/2008 3:32:48 PM (GMT-6)


:)
Regular Member


Date Joined Feb 2008
Total Posts : 182
   Posted 3/26/2008 4:54 PM (GMT -6)   
Oh no, noone likes a flare...I hope she responds to the medecine...
about food, plain, unflavored and starchy food seems to work for many. Plain boiled rice, plain crackers, toast, soup.
Drinks, there are all kinds of sports srinks out there. Old Hat suggested the ice pops, they make Pedialyte pops guess, regular ice pops will do the same thing.
What about a smoothie with banana and some other thing she can tolerate like fruit or yogurt...
also, Salt (pickles) along with Potassium (bananas) help restore the balance of Electrolytes. Of course, not together but eaten in proximity of eachother....
May she and her brother feel good fast!
Dx: Dec. 2006 with UC
F, 23, NYC
Thank G-d - Prednisone then 6MP, Rowasa and Asacol brought remission
Now Asacol 4tabs 2x a day.
Muiltivitamin, Iron and Folic Acid supplements


Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 3/26/2008 7:11 PM (GMT -6)   
No, :) -- 'twas not I who recommended ice pops! But if the matter of dysplasia rears its ugly head, I'd recommend a consultation with Dr. Daniel Present, affiliated with Mt. Sinai Hospital in NYC & a professor in CUNY Medical School. You need a very experienced IBD doctor who is not an alarmist to advise you in that kind of situation, Bennie, not a surgeon 1st! / Old Hat

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 3/27/2008 12:32 AM (GMT -6)   

Thanks Old Hat. I will keep that name in mind. We are not jumping to surgery. I will definitely make sure she gets a 2nd (and possibly 3rd) opinion before anything that drastic is done.

 


--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/27/2008 8:39 AM (GMT -6)   
Bennie, I'm not sure if you were around when we had another teen that had the surgery. Soccermandy? Well anyway, she had the surgery and she is doing spectacular - or was, not really sure now since we haven't seen her around since her surgery. So I'm hoping that it is because she finally got her life back. She even had pictures of her at an amusement park with her friends. Surgery sure is a scary thing but it is a definate possibility that we all face. Getting many opinions is a good thing because if in the event that Bratcat has to have her colon removed, then you can honestly say that you all gave it your best shot and got the views of many professionals. But who knows? Maybe if she starts on Remi, it can completely turn her around too.

I personally think you are a strong woman for being there for your children. I know it must be super tough on you to see them suffer, but just by having such a caring and compassionate mother must be a godsend to them. Hang in there mom!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Bennie
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Date Joined Nov 2006
Total Posts : 552
   Posted 4/2/2008 9:47 PM (GMT -6)   
Bratcat had another colonoscopy on Monday. Spoke with the GI today. The pathologist feels that the dysplasia he sees is more from inflammation than precancer cells. The GI wants to start her on Remicade early next week. Hopefully it will work (and quickly). We do have it in our minds to possibly see a surgeon in the near future (hopefully when she is on the road to remission) because we would rather get some information while there is less pressure to make a life-altering decision. It is good that the pathologist feels that Bratcat is not in serious need to see a surgeon immediately. However, the realization that so far no meds are keeping her in remission for long and she is running out of meds is a bit scary. But on days where she is in the bathroom constantly, Bratcat almost looks forward to the possibility of not having to deal with UC anymore.

--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 60 mg prednisone
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 4/3/2008 4:59 PM (GMT -6)   
OK, so I heard from the doctor today. The office scheduled her first Remicade infusion for Tuesday at...8:30am!! Hello--do they not understand that she is in the bathroom for the first 4 to 6 hours each day?! The doctor was very sympathetic. He told me the best thing to do is to contact the hospital (ambulatory surgical where it is given, same as where the colonoscopy is given) and hopefully they will be able to work with us. They prefer to give infusions in the morning. Maybe they can just give it to her while she is on the toilet! tongue
--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 60 mg prednisone
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/3/2008 5:25 PM (GMT -6)   
Bennie, my infusion center has bathrooms right there - two for five infusion chairs. They have hooks to hang the IV bag on in the bathrooms, so if we need to go we just take our IV bag and go. But they'll start an infusion any time between 6 AM and 1 PM.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 4/3/2008 5:52 PM (GMT -6)   
I'm with you, Bennie, on the illogic of early AM procedures for a patient who is flaring! It's near impossible to get into one's clothes by 8 AM, let alone transport oneself somewhere else & have to interact with new people. Hope you can get an accommodation there at the ambulatory care center. Grrr! Situations like that really annoy me! Best wishes to Bratcat for major relief soon. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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