Anyone notice that UC and Crohn's have the most posts on here?

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glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/21/2008 5:54 AM (GMT -6)   
I just noticed that UC has 90.000 posts and the Crohn's board has 100,000 posts...way more than the other boards.  I find it very interesting.  Maybe it's because it's such an "embarrassing" illness so we come here for support since it's hard to talk about with people who don't have the disease. Maybe it's because most of the medications don't work for most of us and we're all trying to figure out how to treat this disease without surgery. 
 
One thing that I find so weird is that I've had 4 GI's so far.  Every single one of them ends up acting shocked that most of the meds don't work for me.  They treat me like I'm a freak of nature but then I come here and find that most meds don't work for a lot of the people posting here.  I've had doctors at University of Michigan and Cleveland Clinic, so they are supposed to be some of the best and they still act like I'm their only patient who doesn't respond to the meds.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/21/2008 6:23 AM (GMT -6)   
Yes, I sometimes feel like a freak because I have reactions to certain medications that others normally don't. In fact, my GI refers to me as one of his unusual patients. As for the posts, yep - I think that because of the natures of these conditions that when someone finds people that can truly relate, they can't stop talking! :)
 @--->--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**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/21/2008 7:14 AM (GMT -6)   
Sherry-Since we're both from Michigan maybe it's only Michigan girls that don't tolerate any of the meds..lol.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/21/2008 7:17 AM (GMT -6)   
Hmm or maybe it's the water here in MI that makes us intolerant to meds??? :) I KNEW it just wan't right when I pulled in that fish with 3 eyes from Erie! *j/k*
 @--->--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**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 10/21/2008 7:18 AM (GMT -6)   

glamourgirl - I am in the same boat.  So many doctors act as though I am unusual because my UC has not responded favorably to any medication I have taken to date.  I haven't taken all that is available because, honestly, some drugs scare me...like Imuran and Remicade.  I have been so depressed over this lately.  I want to live like I used to live.  My husband and I used to take day trips to New York frequently..getting up early, driving there, enjoying the day, and driving home.  We can't do that anymore because I have such a hard time in the mornings.  I get up between 5 - 6:00 AM and I am lucky if I feel as though I can leave before 10:00.  Some days, I am good after 10:00 and some days I am running to the bathroom the rest of the day.  It's so uncontrollable that I don't have time to find a bathroom in a public place.  I don't know what to do anymore.  I sit in my house so much because I am afraid to leave. I just never know if it will be a good day.

I seems as though every doctor I have seen has the same approach to treatment and they act as though it helps most people.  I doesn't help me!!


Diagnosed with UC (proctosigmoiditis) April 2006
Asacol 1200 mg (3 pills) 3 times a day
Canasa suppositories 1000mg at bedtime
Currently in a flare and taking Prednisone 30 mg per day to taper to zero in about 9 weeks *just had dosage increased to 40 mg because I am not responding* Back down to 30 mg and doing okay..so far
Aciphex
Colazal
Rowasa
Bentyl when needed
 


men8ifr
Regular Member


Date Joined Jul 2008
Total Posts : 124
   Posted 10/21/2008 9:01 AM (GMT -6)   
Perhaps it's likely that people with UC and a more serious condition post on here (i.e. people who are well and no symptoms don't post here much) and therefore the people who are the most ill are more likely to be resistant to standard treatments.
Ian

Currently in no mans land between flare and remission


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/21/2008 9:39 AM (GMT -6)   

I think you're right, glamourgirl. It could be the fact that we can't talk to just anyone about the disease or the fact medications aren't that great. Also, when we're flaring we can't just go out and forget about it--we end up at home (and therefore in front of our computer)!

glamourgirl, if you don't mind me asking, who did you see at the Cleveland Clinic?


Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 10/21/2008 9:49 AM (GMT -6)   
I think it's not just because of having a hard time talking to others about our disease, but with it being so different than other diseases and medications not working, we are trying to find some comfort and support other than family. Also I think our problem is not just the medication not working but the foods, sometimes the foods we know we can have isn't that good of a choice. It's a tricky disease. Sometimes it's hard to wrap your mind around cuz it's so different and weird.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/21/2008 9:49 AM (GMT -6)   
I know I'm a freak. If there's a weird manifestation on anything, I get it. Fortunately, I'm not allergic to any meds, they just haven't worked well for me until I started Remicade. My GI told me I was one of the most difficult proctosigmoiditis patients he'd ever had to get into remission, because nothing before Remi touched my symptoms. Even Pred only got me down to 15 bathroom trips a day.

But then, that's why we're here, isn't it? I describe my life as an ongoing medical adventure. Cracks my primary care doctor up every time I say it.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 10/21/2008 10:58 AM (GMT -6)   
I have been to 3 different doctors for my UC. The first one stop taking my insurance, the second one was an arrogant *ss who insinuated that I was exaggerating my symptoms, and the third one ( who I presently see) is beginning to get frustrated that none of the medications are working. He is still in the fight with me, but I, like you guys, am a tough case.
The people who struggle with this disease the most are the ones who are posting. I know there are people with UC out there who do respond to treatment. My aunt basically used the Rowasa enemas and reached remission.

go figure....
Jackie, 43

Pancolitis, DX Jan. 07

Lexapro, colazal 3x3, Sythroid, Protonix, Rowasa suspension

Remicade 10th infusion- Sept. 30th


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 10/21/2008 11:57 AM (GMT -6)   
I'm lucky with my new doctor because he also has ulcerative colitis (which was SOOO exciting for me because I always wanted a doctor who had been through it firsthand) so he knows that not everyone responds to medications, and when I tell him I don't feel like something is working, he agrees and we move to the next step. It's so nice to finally not have my doctor disregarding what I'm saying and actually trying to help.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Sulfasalizine 3000mg/day, Azasan 100mg

 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/21/2008 12:06 PM (GMT -6)   
I was lucky that my first GI was a medical faculty/researcher, and the drug study with 5ASA saved my colon. It was being studied for Chrohns and he got a special protocol from FDA to let me try it.
My GI now (I moved) is OK and accomodating but certainly not very imaginative. I learned more that made sense (and worked) in an hour with the Naturopathic Doctor -- much of what has been confirmed here by folks -- than I learned in 20 years from the GIs.

It is such a relief to be able to talk and hopefully help, here. I hope my employer doesn't notice how often I check in! My husbands appears to get excited as me about small, weird victories, but he can't really understand.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 10/21/2008 2:44 PM (GMT -6)   
I think lots of people come here because no one really likes to engage in poop-talk and we can all do so here quite freely and openly. Plus everyone here understands and doesn't really just pay lip service. It really isn't a glamorous condition, is it? When do we get our telethon? I can just invision rows of toilets on risers as we answer the phones....
Age: 48
location: Seattle, Wa
Diagnosed with UC in June 2006
Medications: Asacol 3 pills 3 x/day, Canansa am & pm, Atenelol 1 x/day, Ativan as needed
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/21/2008 5:51 PM (GMT -6)   
Too funny~
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/21/2008 9:00 PM (GMT -6)   
I saw Dr. Shen at Cleveland Clinic.

Sherry-LOL about the fish from Lake Erie!

Discouraged-I soooo know how you feel. Before UC, me and my DH went away to northern Michigan almost every weekend. My family has an awesome cottage on the lake. The problem is that there is only one bathroom that many people have to use. Even if it's just another couple there, it's still too hard for me to go since I know if someone else is in the bathroom, I'll have to use it. The stress of it all and the reality of the disease prevents me from going to the family cottage. We did get away this summer and stayed in a hotel. I'm comfortable enough with my DH that I told him to keep the bathroom door unlocked just in case. Luckily I never had to barge in on him..lol. Since you were talking about day trips, have you tried Immodium when you first wake up to see if that will prevent you from going all morning so you can get on the road? It really works for me and allows me to do things in the morning if I have to. It also helps with the anxiety, I use it kind of like insurance. I don't like to use it all the time, but I use it when I have to and it works!!
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 10/21/2008 9:35 PM (GMT -6)   
I too noticed the numbers were so large for UC and CD.
Even though meds have worked for me, even though my flares are now mild, I have stored up years and years of longing to talk to others who really do understand. Since I am so old and was diagnosed in the dark ages, and spent most of my life feeling like I was the only human being on earth who had this "embarrassing, unglamorous" disease, this ability to talk with others has been a godsend.
My friends now are at an age where they are developing things like diabetes and diverticulosis etc, and they suddenly talk about living with chronic disease in front of me as if I don't understand. Because so many are embarrassed to talk about this disease, it seems to me, some do not think it is much of an issue. I never told people about having to make emergency stops on the way to or from work, or having to keep a change of clothes and extra underwear. I never wanted to talk about why I was so grumpy (quiet) when I was staying someplace where there was only one bathroom, or where someone had not bothered to buy extra toilet paper.

In the end, I am not sure anyone, even doctors, get what living with this disease can do to one's self esteem, one's life at work, at home, the way other people with the disease understand. We can laugh with, cry with, empathize with each other in an intimate way even without knowing each other in any way other than on line.

I think people with UC and CD do not get the same kind of daily support and empathy from the public that people with diabetes or heart disease get generally but here we do.

Anyway, that is my take.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 10/22/2008 6:54 AM (GMT -6)   
glamourgirl - I have tried Imodium before.  I find that it helps with the D, but while my movements are more formed, I still have urgency.  I just can't hold it.  I have had accidents in the car with my husband.  I feel bad for him because he panics and doesn't know what to do.  It seems like there is never a place to pull over when that feeling comes over me.  I wonder if taking Imodium the day before and into the next day would help.  I will try anything.  I also found that I don't feel so good for a day or two after taking Imodium.  Maybe it's just me??  Have you ever heard of Lomotil?  I have read of people with IBS taking it and calling it a miracle drug.  Wonder if us UCer's can take it occasionally for things like long trips. 

Diagnosed with UC (proctosigmoiditis) April 2006
Asacol 1200 mg (3 pills) 3 times a day
Canasa suppositories 1000mg at bedtime
Currently in a flare and taking Prednisone 30 mg per day to taper to zero in about 9 weeks *just had dosage increased to 40 mg because I am not responding* Back down to 30 mg and doing okay..so far
Aciphex
Colazal
Rowasa
Bentyl when needed
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/22/2008 7:29 AM (GMT -6)   
Glamour - your comment about the cottage is like a page out of my own book! My in laws have a small house on the Tittabawassee river in Gladwin. Absolutely beautiful - but this small house only has ONE bathroom. When everyone is there - well lets just say that I've had to do my fair share of grabbing my gut in pain while waiting for that bathroom. Not fun. Since I've managed to get my Uc fairly under control, I have more control of my urgency so now it's not too bad. But I used to joke that I was going to put a portapotty outside just for me! I might still do that though seriously. Luckily, this house is near a lot of woods so I can create my own little haven in the trees :)

Jjc - I know what you are talking about. I have had Uc for a long time (not as long as you though) and I thought I was the only one in the world that had it. So when I found HW, I thought *Wow! A place where I can finally talk to others about this without them blinking twice!* This is such an ugly disease that it's not something you can bring up at the dinner table - though I have done that on occasion with the family! LOL So it was soothing to know that others could relate to me.
 @--->--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**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 10/22/2008 8:50 AM (GMT -6)   
Discouraged said...
glamourgirl - I have tried Imodium before. I find that it helps with the D, but while my movements are more formed, I still have urgency. I just can't hold it. I have had accidents in the car with my husband. I feel bad for him because he panics and doesn't know what to do. It seems like there is never a place to pull over when that feeling comes over me. I wonder if taking Imodium the day before and into the next day would help. I will try anything. I also found that I don't feel so good for a day or two after taking Imodium. Maybe it's just me?? Have you ever heard of Lomotil? I have read of people with IBS taking it and calling it a miracle drug. Wonder if us UCer's can take it occasionally for things like long trips.






I am the same! I will take Immodium if I really need to be somewhere and I know I won't be able to get to a bathroom. Thing is.. I always feel bad a couple days after I take it. I have to weigh out whether I want to feel good for ONE day as opposed to worrying bout a few days after. For airport trips..I don't care what I have to do I def take it cuz those security lines STRESS ME OUT.

I also believe taking immodium every day of my 7 day cruise on my honeymoon sent me into my first really bad flare...
Kara, 21F Married.


Medications:

<FONT color=green>Lialda - 4 pills in the morning w/ food.
Steroid Enemas


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/22/2008 10:46 AM (GMT -6)   
glamourgirl, I've seen Dr. Shen as well. I actually saw him to get a 2nd opinion when I went to see a colorectal surgeon. I didn't think he treated me like a freak. He recommended that I try Remicade for a bit longer before going to surgery.

Jjc--I know what you mean. It's so easy to say "I have diabetes" but no one wants to listen to what UC is. A lot of my former friends and acquaintances know that I've been sick a lot since last year, but I don't tell people what I have. If it was a more common and less disgusting disease like diabetes, I wouldn't mind telling them.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 10/23/2008 10:23 PM (GMT -6)   
Dr. Shen is my doctor as well. I didn't think he treated me like a freak. In fact, he even recommended the j-pouch surgery that I wanted. The meds didn't work for me and I didn't want to do the Remicade and Imuran routes at all.

As for not telling people about my condition, it was impossible for me to hide it, so I just told everyone. At my work, I deal with over 200 people in our office and over 150 people in the field/counties that we work with in NE Ohio. They all know that I had UC (about 2 months after being diagnosed) and what the j-pouch surgeries involve. It's hard to hide that I was in the restroom 20 times a day, stopped traveling, missed 40 days of work, and that when I had my surgeries, that I was off for 2 months at a time without getting fired....naturally I thought people would begin to notice that something was up. I've only been to work 5 months this year...and I'll be off another 3 months coming up.

I think the more that you let the other people around you know, the better it is for you, plus I didn't have to worry about hiding it. In fact, we just had a fundraiser for the Crohn's and Colitis foundation, so they all know what Crohn's and UC is now. Also, by telling people about my condition, I found out that 3 people in my department have spouses that have UC. And that another co-worker in a different department has a best friend that had UC and had the j-pouch surgery 10 years ago and is doing fine now. I got a lot of j-pouch surgery questions answered by him. And we have 3 people in other various departments living with Crohn's disease. So these things I would have never known if I kept my UC a "secret." I think now there is a greater understanding at our office on what we all with UC and Crohn's go through. So in return, I think that benefited everyone, including myself.

I just hope more and more people talk about it, rather than keep it quiet.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
11/20/2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 10/24/2008 8:36 AM (GMT -6)   
GISGuy31, I agree about telling people about it. I work in child care, and I tell my co-workers, and my boss for cautious reasons. With child care you really can't run out of the classroom if you need to, so I talk about it as a heads up just in case I flare up unexpectedly, (which I haven't.) I'm just extra cautious. From talking about it I found out that my co-teacher had a boyfriend with Crohn's, and my boss had some experience with Crohn's in her circle too. So, it pays to talk about it. I've thought it to be a hush hush kind of thing, but it's a big part of my life, so talking about it helps me.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/24/2008 11:51 AM (GMT -6)   
ComedyDork-That's weird that Dr. Shen recommended Remicade for you. When I was his patient (3 years ago) he would not prescribe it. I never wanted it but he would talk to me about it at every appt. At the time, he would say "you don't die from UC so why would I prescribe a medication that could kill you?" He told me that he only had one patient who he prescribed it to because they begged him. Maybe his opinion has changed about it since that was 3 years ago.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/24/2008 12:33 PM (GMT -6)   
Well, I was already on Remicade through my other GI when I saw Dr. Shen. He said that he only likes to keep patients on Remicade for a year, and then try to wean them off on 5ASAs; if that doesn't work, then he'll suggest surgery. He also said many people have problems with pouchitis after surgery, so he recommended trying the above in order to keep my colon. So, it seems like he's okay with short-term Remicade use.
Wasn't Remicade approved for UC just 3 years ago? Maybe he felt like he hadn't seen enough trials or reports on Remi?
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/25/2008 7:06 AM (GMT -6)   
I don't know when it was approved for UC, when I saw him it may have only been approved for Crohn's but people with UC were still trying it (like how Humira is now).
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 

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