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Soph
New Member


Date Joined Mar 2006
Total Posts : 10
   Posted 2/1/2008 5:32 PM (GMT -6)   
I will be moving to the research triangle area of NC, specifically Raleigh, and wondered if anyone had a really good gastroenterologist they could suggest there?
 
I am not happy with my current gastro guy, he hasn't been able to get control of my UC. He is not progressive, read: familiar with any new meds or even Imuran used for UC. I am currently back on Pred, due to another flare in December, after weaning off of it last fall. I had a Remicade infusion about three weeks ago. Although it has helped my UC, I promptly caught the flu right after it and have been sick since.
 
My quality of life is just so poor. sad   I was hoping this move would help me to really get ahold of my UC with a new, great doctor, but they are so hard to find. Any suggestions would be so appreciated.

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/1/2008 5:46 PM (GMT -6)   
Hey. I am sorry you are having a hard time. UNC-Chapel Hill as an excellent reputation for treating IBD. We also have another member, UCinNC that lives in that area...she may be able to provide some more information.

I live in NC but outside of Charlotte. I love my gastro but they would probably be a little far to drive!
Tabitha (Tab)

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

http://www.healingwell.com/donate
Co-Moderator UC Forum


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 2/1/2008 5:51 PM (GMT -6)   
Hi Soph,

Sorry to hear that you are in a flare. I don't have a specific recommendation but I can tell you how I would go about finding someone good in NC.

1) The University of NC at Chapel Hill has a very good medical school. I would call and ask some of the GI doctors there if they can recommend someone in Raleigh.

2) I'm a fan of the Univ. of NC Center for Functional GI and Motility Disorders. I got some great info from one of their researchers about hypnotherapy and IBS. He was actually able to recommend a hypnotherapist for me in NYC and it worked out very well. They are progressive and run research studies, so I think that someone there would know who in Raleigh is *the* person to see if you want a knowledgeable and cutting edge approach.

Here's their website:
http://www.med.unc.edu/medicine/fgidc/thectr_collab.htm

I hope you find someone who can help you get this flare under control asap! Hang in there. I'm sure that when you meet your new doctor, you'll know right away whether he/she is an improvement over your last one.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/1/2008 7:35 PM (GMT -6)   
My GI is at Duke University Medical Center, a Dr. Martin Poleski. He's got a great staff, and he had me run the gamut of drugs before recommending surgery (anti-inflammatories oral and rectal, prednisone, 6MP, Remicade). He was even willing to try to get me Humira, but at this point I've decided to go for the surgical cure. I got my second opinion from a Dr. Plevy at UNC-Memorial, he's even more aggressive about medical treatments than Poleski. He was the one to suggest doubling my remicade dosage, then humira if that didn't work...and then possibly doing an abatacept (orencia?) study if I wanted. Anyway, those are my experiences with medical GI's in the RTP area. Hope you find what you are looking for in a doc!
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8


Soph
New Member


Date Joined Mar 2006
Total Posts : 10
   Posted 2/1/2008 8:32 PM (GMT -6)   
Thank you all for your replies so far, I really appreciate it.

This is such a confounding disease, I feel like I go round and round in my mind about it. I've done a lot of reading, but at the stage I am in in my UC adventure (diagnosed Fall 2004), I have two questions in particular.

I may be able to control this with Remicade for a year or two (sounds like the average), but how do I keep from constantly being sick with infectious stuff? Does your gastro respond to any flu's or colds or other creepy crud's with speedy treatment so you don't feel miserable all the time? My current gastro told me my 102 fever was 'low grade' and that was that. I obsessively washed hands and wiped with antibacterial wipes, but obviously, that didn't seem to do the trick for me.

On the surgery front: I've read that it has really changed some lives. On the other hand, I know the UC can spread. My UC is usually located in the lower part of my colon, but during flares CAN light up my whole large intestine. I worry about going through the surgery (which hasn't been suggested yet) only to have it move up further into the intestine? Round and round I go....

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/1/2008 9:12 PM (GMT -6)   
I'm sorry to hear you are getting infections from the Remicade treatment. I never had any reactions or side effects from remicade, but I did to 6MP. Lots of back pain, run down, low-grade fever, the works. My GI had my blood tested regularly, and even though my white count and other stats were ok, he took me off due to the amount of pain and suffering I was experiencing. I too was diagnosed in Fall of 04 and was able to stay out of trouble until the spring of 06...been flaring every since. The only thing that kept me going through grad school was a constant taper of prednisone every semester. I tried making it through this last one just as I had done in the past...but it was just getting to be too much.

As for surgery, you may want to read a little more about this disease, and how a surgeon goes about "curing" a patient. The entire colon is typically removed, in fact, any surgeon that says (partial removal) otherwise should have you checking for a 2nd opinion asap. UC is contained to the colon and rectum only. There is a condition known as chron's-colitis...where inflammation etc resides only in the colon. This can appear in the rest of the GI tract after removal of the colon and rectum. However from what I've read only 1-2% of UC cases are discovered to be actual C-C yearly (in my surgeion's case he claims 5 out of 800 surgeries, so .63%?). I also read that chron's-colitis produces fistulas in the colon, which are clearly visible in a c-scope if present. This does not occur in patients with UC. Again, these are things I've read and they've made me feel a bit more comfortable about having surgery. Of course its a very personal decision which requires a good assessment of how much of your life is being restrained b.c of this condition/disease and how far/long you are willing to try new/experimental treatments, etc.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/1/2008 9:29 PM (GMT -6)   
I have a great GI in the Triangle, specifically in Chapel Hill, named Morton Malkin with Chapel Hill Internal Medicine. I know that he does remi infusions from his office. he has AWFUL bedside manner but is an EXCELLENT GI and means very well, so if you can tolerate his mannerisms, then he's great.

But, if you have a trickier case, you could also consider the GI clinic at UNC-Chapel Hill. The clinic there is very good, but it is a hospital, so it can be a bit harder to get in with them. there are a couple of docs there. I have seen Hands herfarth and really liked him, but get my main treatment from Malkin because the hospital thing can be a bit much for me, personally. if you have more specific questions, give a holler and I wil do my best to help out. the UNC clinic will probably a better fit for you if you have a tricky case. (I haven't read your posts yet - just saw the subject and wanted to reply promptly). will write more later.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/1/2008 9:35 PM (GMT -6)   
carlow - are you currently at duke for grad school? my fiance is a PhD student there. what are you studying? I would LOVE to get together to talk with you about your decision to have surgery. I am thinking about it a bit too..... would you be game?

Soph - I just read your post. I suspect Malkin could handle your case but again, the GI clinic at UNC is also great. maybe try malkin and see if you can handle his personality..... he is very thorough. I saw him wednesday, just for a follow-up for UC, but I mentioned a sore throat, so he insisted on throat cultures since I am on Imuran. he is really aware of my overall health, and quality of life. don't get me wrong, I have definitely cried after leaving his office because he says things very matter-of-factly and that sometimes freaks me out, but after a year with him I am starting to be ok with it.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/1/2008 11:11 PM (GMT -6)   
I am actually a grad student at East Carolina studying archaeology. I make the 100 plus mile drive for treatment at Duke (I have family in RTP so its not too bad). I wouldn't mind talking about my decision at all. I get in to Raleigh about once a month though, so maybe email would be more effective?
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/7/2008 12:28 PM (GMT -6)   
Hey UCinNC, never heard back from you, then I realized I should probably add my email address, that might help: southernmemphis@hotmail.com. Let me know how you are doing/where you are at with this whole surgery business.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8 (Ran out and waiting for refill...actually improving off of it...hmmm)

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