the bleeding and d began again

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jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/8/2008 5:26 AM (GMT -7)   
after just a few days of tapering to everyother night my daughter called last night
and told us the bloody d began again. can this happen so soon? i know she was only using them for a few weeks but we were hoping that she could go to every other night because of her side effects including crumby blood results.
she will call the dr this morning but i don't want her on oral pred. what happens with the bloods and drugs? 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/now every other night


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/8/2008 6:48 AM (GMT -7)   
PLEASE, I'm so sorry. I don't have much experience with using rectal meds, but I think the response really could happen that soon. The enemas are pretty much topical, just like a skin ointment, and when they're gone the effect goes away pretty quickly.

Short courses of Prednisone can induce a remission quickly and often this remission continues after the Pred is discontinued. Many of our members have excellent results from this strategy.

Most GI's will go to 6-MP or Imuran (azathioprine) next when the 5-ASA's and steroids won't achieve a lasting remission. This has some scary side effects listed and needs careful monitoring, but remember that most of the people who take it have minimal to no bad side effects.

There are also the newest sort of drugs, like Remicade and Humera. Others are in development, and I'm sure your GI's practice is involved in some of the clinical trials.

There will be an answer for her, sometimes it just takes a while to sort out what works best for each of us. In the meantime, she's benefitting enormously from her supportive family, so keep up your positive attitude.

I'll be sending positive thoughts for a quick remission for your daughter.
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.
 


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 1/8/2008 6:51 AM (GMT -7)   
PLEASE - Everyone has a different story here, but I will share my own UC story in the hope that it will help you and your daughter.

I use Rowasa enemas virtually every night and have since I was diagnosed several years ago. Whenever I try to taper down, the rectal symptoms return. As long as I use the Rowasa (and continue to take my Asacol), I am fine. And by fine, I mean completely normal in the bowel movement arena. When I was first diagnosed with this disease, I figured I would be on medication for a little while and then get off of it until I needed it again during the next flare. That hasn't been the case for me. I need to take my medication for maintenance purposes. It took me a while to learn that. It may be that she will need to continue at least one form of her rectal medication for quite some time.

As for oral Prednisone, I have used it three times - one taper during each of my three flares. I tolerate it quite well and do not experience many side effects at all. Compared to many others on this board, Prednisone doesn't bother me a bit (aside from a little insomnia). I was scared to death to try Prednisone. The bottom line is, though, that I needed it to get back into remission. It has launched me into remission each time within days. Then, I just continue on my maintenance meds and keep my stress levels down. If I hadn't tried the Prednisone, I doubt I would have ever gotten out of my first flare. Saying a blanket "no" to the drug may not be the best treatment for your daughter.

Have you ever asked your Dr. about Entocort? That is also a steroid but is not systemic like Prednisone. Your daughter may be a candidate to try that.

I am hoping to give you some positivity with my post. I know you are anxious about your daughter's disease, and I don't blame you, but, this isn't a life-long sentence of pain and misery. There are many of us on this board who are living fulfilling lives with UC. I am a successful lawyer at a large law firm, have a wonderful marriage and am pregnant with our first child. I have traveled all over the world with this disease. I have never missed an important event or not done something that I wanted to just because I have this disease. I do not allow the disease to slow me down. In short, I am truly blessed. It just took me a minute to figure out how to manage things. Once I wrapped my arms around the fact that I had a chronic disease and I need to take regular medication for it, it all became much easier to manage. Your daughter will figure all of this out and will go on to lead a productive and successful life. Honestly, she will.

I look at this disease like this... some people have diabetes, some people have asthma, some people have cancer... I have UC. It is a chronic disease that I needed to learn to manage and live with. Once I did, I have never looked back.

Hang in there! I can tell that you are a wonderful mother, and your daughter is lucky to have you.
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
- Iron (2x per day)


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/8/2008 8:22 AM (GMT -7)   
to expecting,'
thank you for your encouraging words, they really are important and i willl show it to her when i can. really didi you do all of that before uc or did you finish school and marry first?
she does take the mesalamine enema daily-generic of rowasa- but you mentioned the encourt, she also uses a hydrocourt enema, and i think it was the tapering from this that made the bleeding start. she just began to go to every other night only days ago, and like i mentioned i know she was only using it for a short time and everything seemed to be heading in a good direction, her blood tests were not. it seemed that even though it is rectal she absorbs alot of the steroid and is becoming close to drug induced diabetes, and slready her body is swelling from it along with acne .seems like so much for such a short time on rectal steroids but i'm only learning, she also uses cortifoam another steroidal med 3x daily so e guess it's the equal of ingesting a dose of prednisone?
again i really appreciate your optimistic view and wish you the very best with your baby!
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/now every other night


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 1/8/2008 9:13 AM (GMT -7)   
I was diagnosed with UC while in my second year of law school. I finished law school, took the bar exam, got married and began my career with UC.

I know I have said this to you before, but I really think your daughter is on way too many medications. I have never heard of someone being on all those medications at once - especially four different rectal medications at the same time! That could be the reason she is experiencing all those side effects. I remember you saying that you were working with 2 doctors. I really think you should take your files to a different GI and have a consult.
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
- Iron (2x per day)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 1/8/2008 9:53 AM (GMT -7)   
PLEASE-- I think Expecting226 is giving you excellent advice. In recent yrs the medical researchers' thinking about UC treatment has led to gastros prescribing combo meds. However, many of us who were diagnosed before 1995 achieved remission via one anti-inflammatory drug, or 2 types of a drug at the most. (It is only in recent yrs that more meds came on the market.) My feeling is that, especially in the case of patients with drug sensitivities, it becomes harder to gauge which med is causing the unwanted side effects when combos are prescribed-- and your daughter has gotten more prescriptions at one time than we members here have ever heard or read about happening!!!!! You went to get a 2nd opinion from a specialist who treats the most difficult cases of Crohn's disease, plus post-operative infections in patients with pouches. The specialist's associate subsequently told you that their IBD center is dedicated to "aggressive" treatment. To me, "aggressive" means lots of intervention, heavy dosing of meds, etc. That could be more than your daughter needs-- as I wrote before, it sounds to me like she needs more conventional treatment, such as weaning off steroid enemas to a combo of 1 oral 5ASA + mesalamine enemas. (Which can take 3 or more months to achieve remission-- that's the way they work!) One has to take 5ASA meds with patience, but the trade-off is that they generally have few side effects.) This is a somewhat different way of stating what Expecting226 wrote above, but we're giving you the same advice: change gastros if you feel uncomfortable/insecure about having your daughter put on so many meds w/o clear instructions/follow-up from the specialist who prescribed them! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.]) 

quincy
Elite Member


Date Joined May 2003
Total Posts : 29856
   Posted 1/8/2008 1:58 PM (GMT -7)   
I agree with Old Hat....just to let you know that it can take a while for things to work. Added stress and yo-yoing of meds can cause extreme expectations and more frustration. I can relate, however....but I did have to give the meds a fair try before they really started working for me.

I've never been on Colazal, so I can't comment on the effects.

Asacol did give me some diarrhea (I'm sure) in the beginning, but I did show improvement and never got worse. My doc started me on a lower dosage and increased it to 6 daily. In conjunction with the enemas...it improved.

It took 3 years for the bleeding to stop with flares.

It took me 2 years to get a handle on how to use my meds properly.

How stressed is your daughter through all this....I would assume with starting school, living away from home and dealing with UC, it would be a lot. Add periods...yahoo!! it's a never ending frustration. I credit your daughter for being such a trouper and continuing her schooling while dealing with all this.

Too many meds...I agree. Can she see another doctor who can help try to get it straightened out without her being on pred? I don't think pred or steroids at this time are working anyway...but she'd have to taper.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/8/2008 4:34 PM (GMT -7)   
Quincy,Old Hat, Expecting, i don't know if you just saw my post where this dr swithced her canasa suppos for another cort suppos. in adition to the other cort rectals she is on,
you guys are right, and I'm not a stupid person just totally baffled, when i just told my husband that she added this new steroid and the antibiotic he said we must get another opinion, it's just hard to do this with her away and i give her credit , she loves her friends and when she's not medicing she is out with them trying to have fun. but this was a minimester and i wish she would quit it and come home, we could have used this time before spring semester started in february, but we weren't expecting this when she registered. i begged her today to give up the class, she coud still hang with her friends in between dr appt. since the room is already paid for and school is only a 3 hour ride. but she wanted to get a class out tof the way. but we will somehow fit in a new consult. she is only a 1/2 hr from jon hopkins, but i think i'll be getting into the same situaion i'm in now if we went there? .=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/now every other night


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/8/2008 4:53 PM (GMT -7)   
Hi. Sorry to hear your daughter started bleeding again.

Keep in mind, that it is your daughter's decision what meds she wants to be on and if she wants to stay in school. I know you're trying to protect her, and I don't mean this comment to sound mean in any way, but she is 19 and can make these types of decisions. Maybe it's best for her to stay in school (if that's what she wants) and keep some normality/stability in her life right now when her health is presenting her with all these new challenges. A 3-hour drive to see your friends is a lot different than seeing them everyday. Just my opinion being a recent college grad. If she's only taking one class right now, I'm sure it won't be that hard to squeeze in a doctor's appt. (I'm not sure how early you can get in to see a new one, but if you explain her situation, maybe they can get you in sooner. Also, if you get put on a cancellation list, you can sometimes get in quicker). Good luck.
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


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 1/8/2008 5:18 PM (GMT -7)   
If your daughter's college is located in the Baltimore area, then it may make sense for her to find a gastro there if she'll be attending school for a couple more yrs. You can look at ccfa.org --Physician Finder to see who they list in that area. Also you can start a new thread here asking for names of reliable GI doctors near Baltimore. It doesn't make sense for her to shuttle back & forth to NYC to consult a doctor if she can get the help she needs closer to campus. I agree with Sara14 that a 19 yr-old has to be involved with decision-making on her own medical & social matters. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 1/9/2008 6:56 AM (GMT -7)   
I agree with Old Hat. Given that she has a few more years of school left, she really should find a GI near school. She will still need to see her GI on a regular basis once she obtains remission. It's important for her to develop a relationship with a GI, so she can have access when she really needs it.

I also agree with Sara14. Normalcy in life can be everything when you are first dealing with the fact that you are sick.
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
- Iron (2x per day)

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