Posted 1/1/2008 10:23 AM (GMT -7)
you are right about the dr. faxing the results to the gastro, my gyno is a good friend and i use him to take the tests and then send them on to gastro -he takes my insurance and the gastro does not. they resulsts should be on the fax machine by the time gastro returns from vacation and hopefully before Martin Luther King Day! as for lowering the steroid input, daughter will ask about cutting down as soon as she speaks to her, hopefully tomorrow, in the meantime i have told her to cut out as much sugar from food as possible, can this really be diabetes and is it reversible?what if she needs to be on the steroids longer, will she also become a diabetic patient?-thanks
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

Posted 1/1/2008 2:03 PM (GMT -7)
PLEASE, I'm assuming that the doctor did blood tests for the diabetes also. In addition to a fasting blood sugar, a hemoglobin A1C is usually done. The FBS shows what the blood glucose level is at the time it's drawn, the A1C gives an indication of whether the blood sugar has been out of line over the previous 90 days. Even though mine has been in the normal range for the past two years, my doctor still checks it every 6 months.

If these tests show elevated levels, I'm sure your daughter will be given training in diet and exercise. It really isn't a difficult regimen to follow, just a well-balanced diet and regular exercise. If it is caused by the steroids, it will usually go away after you're off them. Mine was normal on the regimen, and now I don't always follow it and it still stays well within the normal range. My doctor said from the first it was the steroids, but because of other factors that might increase my risk (age, family history) she said just stay with the program.

I just noticed that it looks like your daughter basically spends her day putting things in her colon. Eight times a day? I don't think I've ever heard anyone else talk about that many enemas and suppositories. How about it, folks?
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.
 

Posted 1/1/2008 5:14 PM (GMT -7)
JUDY-- the daughter is taking oral anti-inflammatories, besides! That's what I've been telling PLEASE for a week: that is too many meds all at once for the degree of flare she presented with. Gaff also replied that it seems to be too much. I doubt that the gastro intended for her to take everything at once; she likely should have tapered off something & changed over to something else. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
Posted 1/1/2008 5:50 PM (GMT -7)
you are right, i did question the dr after 2-3 days of all that going in she stood fast on it , even the pharmacist called when we were filling the prescriptions, and my husband heard that end of the conversation- the pharmacist said these drs treat them like dummies but she was trying so hard to imagine what the dr could have intended. the dr definately said get as much in you of all of these things, as you can. i learned from all of you that it was not normal but that dr went away . i do plan on getting this squared away and i have cut out some of the enemas, like not doing the messalamine 3x daily it just couldn' be. i was afraid to futs around with the cort enemas, but once at bed time seemed reasonable, but she also wanted proctofoam 3x daily, and we settled on 1x daily the last couple of days. believe it or not she had also given he a script for encourt and the pharmacist told us it would be insane to use that too. the drs quick word to us were that she should try to get as much of all of this in her as time would allow for the next few weeks. so here we are and tomorrow better have some answers i don't want to switch drs but thie only reason her bloods have been monitored is because i keep asking for them and there is always some imbalance. thank you all i will be working on this and getting answers from doc tomorrow now that she is back. my gut instinct hasn't been good.
dr scherl came highly reccommended she heads the ibd center at ny hospital, but her dosing directions were fast and then she was gone. again this is new, but i'm getting smarter-thanks to all of you!
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

Posted 1/1/2008 6:15 PM (GMT -7)
Borrowing the vernacular of today's youth: NY Hospital sucks! That is where Andy Warhol died after gall bladder surgery; he wasn't even all that old, either. I can guarantee you that all this institution cares about is filling their available beds. They just exploit patients there. I read comments about it in the Crohn's Forum, too, not long ago. Mt. Sinai is the best IBD center; many NY members of this forum have said so in other threads during the past yr. That's where your new doctor practiced for many yrs in the past. / Old Hat
Posted 1/1/2008 7:27 PM (GMT -7)
Old Hat i know that she came from sinai , that was why i had a good feeling about her training, my internist highly recommended her, she does a lot of research and is well published on ibd. i am going to a forum on long island on jan 13 and there will be a dr there presenting information, i will be interested in checking out his manner as it is so important to have a responsive dr. i appreciate all you have done to listen and answer me, i feel as though the 2 drs i've come across so far don't get what it is to be new at this and they say take this and this and call me if you don't get better,otherwise make an appointment in 3 months. what does that mean to us? i don't know what better is, i don't know how much medicine or when to stop it, all of the oral meds warn about checking blood levels and organ function but both drs waved me off about that question. that is why i have them checked on my own, fortunately her gyno and internist want the bloods checked fairly regularly, they have been off, she has been anemic and had low potassium and now the sugar issue. i know i've said this before but i'm not a whining mother but you have to be your own advocate because these drs. forget you when you leave their office. i know she's 19, but she is not familiar with the medical establishment and 19 is still young. ineed to know that she isn't being over medicated and right now she is just happy to sleep through the night again and not see blood in the toilet. so once again i take your advice seriously, i read these posts with pen in hand and hope to be better prepared for my next dr conversation. please i hope i'm not annoying.
thank you
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

Post Edited (PLEASE) : 1/1/2008 7:41:27 PM (GMT-7)

Posted 1/1/2008 9:00 PM (GMT -7)
Hi Please,

You're not annoying. =) I wish my parents were as involved in my care as you are in your daughter's. She's lucky to have such a caring mom who is willing to help her out with all of this scary UC stuff. I feel your daughter is on a ton of meds, too. I have never heard of anyone being on so many enemas, suppositories and both asacol and colazal. It's weird she's on the max dose of colazal and on asacol...but of course, I'm not a doctor and I'm still pretty new to UC as well. It's good you double checked with both her doctor and pharmacist.
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

Posted 1/1/2008 9:18 PM (GMT -7)
Low potassium can really leave a UC patient feeling wiped out! It's good that your internist & gyno have been checking daughter's bloods. She should be able to raise potassium easily enough with fruit juices & ripe banana. I agree with you that a 19 yr-old is still learning the ropes of self-advocacy. And, I have seen myself that even older patients tend to come to appointments at NY Hospital accompanied by another adult; that says something about the hurried & sometimes even indifferent or hostile treatment that can be meted out in the depts. there. It's very hard to find a doctor who will sit calmly for 10 minutes at the conclusion of a clinical exam & explain exactly how the patient should follow-up with prescriptions, etc. Sometimes I feel like taking a pair of handcuffs along with me to chain the doctor to a piece of furniture & prevent him or her from running off before my Qs are answered! We have a very frustrating medical system on our hands. In contrast, I can say that my dentists have always been willing to explain & even draw diagrams to make their treatment & recommendations clear, and their office assistants have been equally helpful, patient, & kind. Maybe too many gravitate to the medical field who should really be working at the stock market, ad agencies, investment banks & other impersonal, profit-driven organizations. If they're not interested in helping patients, they really should pursue another type of career! / Old Hat
Posted 1/1/2008 9:40 PM (GMT -7)
Old Hat, I've been blessed here with fabulous doctors who take time to explain things and answer my questions. I did once have an endocrinologist who was really bad about not doing that, and I started standing up after he checked my thyroid, then I'd edge around until I was standing in front of the door. Then he couldn't leave until I was finished. He finally ticked me off so much that I fired him.

Come to think of it, I fired my first GI, too.
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.
 

Posted 1/1/2008 10:02 PM (GMT -7)
So you actually blocked his path, Judy? Hee,hee,hee. Good for you! The disturbing part of Please's tale is that I know the gastro she is writing about as a (formerly, if not currently) very caring, committed IBD physician. Judging from what recently appeared in the Crohn's Forum & now this, the gastro must be under a lot of institution-generated pressure that may be negatively impacting on her decisions. Let's hope she's not becoming one of the so-called "toxic-doctors" who sometimes behave so far out that it makes the 6 o'clock news! / Old Hat
Posted 1/1/2008 10:07 PM (GMT -7)
Sorry to hear your daughter is having more troubles. I think my Gyno told me once my cervix was inflamed but I was never on any meds for it. I am not even sure, sorry. I wouldn't douche, I don't think it is a good idea personally. I didn't realize how many rectal meds she is taking, that really seems like too much. My GI has always been very agressive with meds, or so I thought, but that seems extreme. I have a guess, I am definitely not a doctor, but my guess is maybe she has the cervical inflammation because of a high level of inflammation in her body right now? If my GI says the reason I have Arthritis is the high amount of inflammation within my body because of UC, maybe it could affect the cervix? How was her white blood cell count? I have no idea about the urine thing... I would try to figure that out with the doctor and in the meantime have her reduce her sugar and starchy carbs some. My GI likes to give me lots of meds often, like I said, not to that extreme, but he claims that rectal meds and Asacol target the colon and little is absorbed into the bloodstream so it is ok to be agressive with them... I still think that is too many though, I wouldn't want to be trying to hold all that in every day, it must be hard for her! I think it is really sweet how you really are so caring to your daughter. Not to put down my parents, but I basically had to tell them stuff because they were clueless. She really will be ok and just remember that. It isn't easy, but she will learn how to live with UC. It takes a lot of trial and error with meds, diets, doctors, etc but she will be more mature because of this and appreciate things so many young people take for granted.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade,ulcer shrunk in 3 months, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks ( had reaction, will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Tapering Prednisone again :( for joint pain

Posted 1/2/2008 6:28 AM (GMT -7)
Old Hat i am curious about what you read on the chron's forum regarding the dr/ny hospital ,i searched chron's site but didin't find anything. could you let me know where to find it?
thanks
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

Posted 1/2/2008 7:47 PM (GMT -7)
PLEASE-- it was posted by Nikki0294, I think, around Sept. 15. She wrote that she had recently been diagnosed with CD & went there for a 2nd opinion, as I recall. I happened to see her headline on the Forums List back then so I clicked in & read a couple of her posts. I think she also mentioned having problems with follow-up phone calls. She seemed to be a middle-aged patient, married with children. / Old Hat

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