regarding overmedicated daughter

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jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/3/2008 3:11 PM (GMT -7)   
my daughter was going to cut out the asacol since we thought she was being overmedicated and hadn't been able to reach the gastro for several days,after only 24 hours without the asacol she began having diarreah again.
i spoke with an associate today and she said it would surprise her if it was such a fast response and the choice was ours to make to let it go a couple more days or add back the asacol and see if it helps. my daughter did not want to try going without, she was so upset to have the urgency and d return after not having it for many days , there was no blood.
I questioned the dr about being on asacol and colazol and she said that each targets a different part of the colon and she didn't have the pictures of her sig handy but there must be disease in differetnt locations that need each of the meds. i can underatand that. and regardiing all of the other meds her reply was that this is an ibd center and their goal is to be aggressive to get the patient into a remission and then see what they can elminate.
in response to the elevated hemoglobin and A1C she said that there must be a lot of active disease (missing mucosa) that is why the rectal steroids are giving her side effects since usually it doesn't happen so soon (acne,swelling face , weight gain, and the elevated sugar level).
regarding being anemic she said that if she begins to get tired she will need iron infusions. they want to see her in 3 weeks so that is where we stand. quite deflated, thought that she may have been moving toward remission.
she want us to continue everything , but suggested using the hydrocourt enema every other night.-thanks for listening
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily
colazal 3 3x daily
proctofoam 3x daily
mesalamine enema 1x daily
canasa suppostiories 3x daily (usually doesn't get to do 3)
culturelle probiotic 1 daily
chewable vitamin
hydrocortisone enema at bed tme


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/3/2008 3:20 PM (GMT -7)   
It's the worst feeling to finally be doing well and then have it all slide like that.  Sounds to me like you have a good team of docs taking care of her and you have someone to talk to.  My doc is also a little on the track of let's hit it with all we've got and then reduce as things settle down.  When I had my last big flare that didn't go into remission after adding extra enemas, pred, extra Colazal - everything - he started me on Remicade and then after my 6 week induction period - he added the azathioprine.  Now I have been doing so well - knock wood - we have started spacing out the Remicade infusions (up to 14 weeks apart now - YAY!) in hopes of weaning off completely and staying just on the the azathioprine.  Keep the faith - it may take a little time but remission is really just around the corner!! :)

KTM


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/3/2008 4:11 PM (GMT -7)   
Oh, I'm sorry that didn't work out for her, PLEASE. I hope she soon gets into a remission.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 1/3/2008 5:01 PM (GMT -7)   
Wow. That is a lot of medication. Your daughter is a such a trouper. I'm not sure that I could handle it myself and I'm in my 30s.

My first intuition was that this was an INSANE amount of medication. BUT, then you explain the doctors' aggressive approach and it makes some sense. Especially if it's working even a little.

Still, I'm not sure how the doctor can figure out which drugs are working and which are not. I guess she has a system.

I think it's good for you to be skeptical and keep checking with them along the way. I'd suggest that if things aren't a lot better by that next appointment, to ask the doctor to suggest ways to reduce the meds anyway.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 1/3/2008 5:55 PM (GMT -7)   
PLEASE-- after I looked over your post a couple times, I remembered something relevant I had read on another IBD patient forum a couple yrs ago. There was a chat going on between 2 Crohn's patients, one of whom said he was thinking of going to consult a certain honcho IBD gastro at Mt. Sinai. The 2nd Crohn's patient advised against it, stating: "He will experiment on you." That bell rang in my mind where you quoted the associate as telling you today that your daughter came to an IBD Center dedicated to aggressive treatment. SSSSSSSSSSeeeeeeeeeeeeesh! They are supposed to ask your written consent to participate in drug trials, but they probably have loopholes that enable them to get around formal consent to combo meds. I'd be wary of this & go back to the 1st gastro's colonoscopy results for a reference point. Where did he say the inflammation was in your daughter's colon? As I recall, you did write that she improved somewhat on his Asacol prescription-- it was going in the right direction, but not improving dramatically. (Which is the way Asacol works!) It sounds like you really should be discussing this with a doctor you can trust to base decisions on the best RECOGNIZED practice, not on a late-breaking trend or hunch. Taking all these meds in combination is still, I think, guesswork, not recognized practice. It runs more risk of side effects, which you already are seeing. I can't believe that between LIJ & North Shore you wouldn't find a gastro or internist capable of advising you on this situation. What about that forum speaker you mentioned on Jan. 13? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/3/2008 6:55 PM (GMT -7)   
Old Hat you're points are very valid and i'm going to the forum on long island on the 13th, the presenting dr is from the north shore lij system, and has a good name among the local ccfa group. i went thorugh this once before with another family member jumping from dr to dr but i guess that is the position we sometimes get put in until we get the right one.
the original colonoscopy showed left sided,and rectum inflamation . we thought the asacol wan't working at first, but by the time of her appointmnet at nyhospital she was starting`to go less, and while there was still blood the urgency was under control. when the ny hospital dr looked with the sig scope she said that after 3 weeks on asacol there should have been more improvement if it was working, and then she added all of the other drugs.

believe me i'm not accepting the side effects , i have spent many coversations in between working with my gp and the associate at nyh, and then doing research here there and everywhere. i'm with you, i didn't sign her up for a trial, therefor i expect them to pay attention to the side effects, so i will be overseeing this through the next meeting. if i didn't ask her to look at the bloods she wouldn't have said "oh yes she's anemic" so i ask what does that mean
and she said they may have to transfuse her with iron. dr scherl said goodbye to my child after the 1st meeting and said call me around april unless you get worse.

I want to know what she should do if she starts to feel better,too.-thanks for your logic
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily
colazal 3 3x daily
proctofoam 3x daily
mesalamine enema 1x daily
canasa suppostiories 3x daily (usually doesn't get to do 3)
culturelle probiotic 1 daily
chewable vitamin
hydrocortisone enema at bed tme


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 1/3/2008 7:36 PM (GMT -7)   
Shocking! If she put your daughter on all those meds & instructed her to return in April-- that sounds like grounds for legal action! That's appalling!!!!!!!!!!!! And yesterday I did re-read one of your earlier posts where you wrote that your husband interacted with the pharmacist who filled the prescriptions, & pharma told him that gastro wanted to give your daughter Entocort, in addition to Cortenema-- which pharma found totally unacceptable. It sounds like you should get your daughter a more "conventional" gastro-- that's the most polite way I can express it at this point. If she has an appetite & can eat a nutritionally balanced diet w/o going to the john more than 2-3 times daily, she'll likely be able to taper off the Cortenemas & get on to a safe 5ASA regimen fairly soon. There is a vitamin called Forvia designed especially for IBD patients that several women writing to this site find helpful-- so you might want to look into that in the meantime. As for future medical office visits, my doctors have always recommended a return visit one month after changing to a different prescription-- then if that med agrees, the follow-ups can be in 3-6 months. (Meaning if bloods test o.k., etc.) At least you now have some kind of "official" directions to cut back on the steroid enemas. May that put your daughter on the right track to successful treatment! / Old Hat

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/3/2008 8:12 PM (GMT -7)   

PLEASE--my daughter is a bit younger than your doctor (she's 16) so she goes to a pediatric GI. While she is flaring (and now as she is lowering her meds and hopefully going into remission), we keep in touch with the doctor or his PA once a week. They ask the basics (how she is feeling, changes in bowel movements, aches, pains, etc). They discuss any test results (routine bloodwork) and explain why, if any, changes are made to her meds. The calls always end with the doctor or the PA telling us to call in a week unless there is a change and to call if needed. Even over holidays. I did ask the doctor how long my daughter will be able to stay under his care. He said he still sees patients that are in college now. I don't look forward to having to find a GI for adults down the road.

I agree with everyone else's comments that no contact with the doctor for 3 months (while flaring) is terrible. As hard as it is to switch doctors, I would look for another for your daughter. It's funny because we are on Long Island and I was hoping that you and your daughter were going to be extremely happy with the doctor. Then I would have had a doctor to look into for my daughter.


--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 35 mg prednisone, 2 tabs 6-mp
 
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.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/3/2008 8:49 PM (GMT -7)   
Wow, PLEASE, I can't believe how much these doctors are putting you and your daughter through! I agree with Old Hat and Bennie's posts. I think it's time to find a new GI, as frustrating as that is. That is not acceptable that her doctor told her to just come back in April, especially being newly diagnosed, flaring AND on so many meds. I know others have already told you this, but Asacol can take quite a while (months sometimes) to fully work...same with 5-ASA enemas. It took me quite some time to see complete results from Asacol and Rowasa enemas, but (so far) my doctors haven't put me on any other drugs...not even when I was severely flaring (having 25+ BMs/day and in lots of pain). I'm glad they started me out with the 5-ASA meds and nothing else.
23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - as needed for flares
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D) for Osteopenia; flaxseed


stm177
Regular Member


Date Joined Jul 2007
Total Posts : 90
   Posted 1/3/2008 11:24 PM (GMT -7)   
I agree that your daughter should find a different doctor.
Proctitis - diagnosed April 2007 (symptoms starting in October 2006)

Flares treated with Rowasa enemas

Mild food diet (chicken, rice, collard greens, no sugar, no corn, no beef/pork, etc)

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