lots of good UC info in general, and then an update on me

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UCinNC
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Date Joined May 2007
Total Posts : 528
   Posted 2/7/2008 5:51 PM (GMT -6)   
Today I got a second opinion at the GI clinic at UNC-Chapel Hill, which is a very well-regarded GI clinic. Learned lots of stuff I thought would generally be good to share with my fellow UC-ers, so here is so info I learned, in no particular order, followed by an update on my particular situation. Of course, this info is just from my GI, so take it or leave it, but I do know that UNC has access to lots of clinical trials and does lots of GI research, and is tend to be respected in the IBD world.... for whatever that's worth..... so, some interesting "facts," in no order, and not all related to one another:

1. there are lots of good drugs in the pipeline for IBD, but none that the IBD community thinks is a wonder drug. any marketing of a wonder drug for UC is being done by wallstreet backers for profit. from medical perspective the drugs are promising, but only incremental, and only provide more options, as opposed to batting UC out of the park.

2. methotrexate is more effective in Crohns than in UC.

3. ok to get pregnant on imuran but probably not great idea to breast feed on it

4. remicade usually helps about 50% of UC patients, and UC provides a really good remission to about 30% of UC-ers

5. there is an Abatacept clinical trial at UNC right now, for UC, which is interesting b/c I didn't think it was being tested yet in the USA

6. Prograf is not a long-term drug for UC-ers (though apparently liver transplant people are on it forever)

7. for a UC-er who has been diagnosed and has not yet gotten into remission - or for a UC-er who has gotten into remission and never flared again - it is possible, sometimes, that getting into remission will normalize the system and that the UC simply won't appear again because will normalize permanently. if have already cycled through flares and remissions, this probably won't happen to you, but if you are first in remission and can stay there, may be your system has normalized again.

8. there is a 30 - 40% chance of a woman becoming sterile after colectomy. There is no way to predict, and it is not because of the surgeon or the surgery. rather, because the colon is so close to the fallopian tubes, some womens' bodies respond to the surgery simply by the closing of the fallopian tubes, permanently.

9. surgery doesn't return the person to pre-UC life (if it did, he said, he'd obviously recommend surgery more often). he said the average J-poucher still has about 4 - 6 BMs per day, but they should have good control and not have frequency/urgency

ok, so that's the general info. as for my personal update (which may be less interesting to some of you... :) .....)
I saw this new GI today because I was feeling like my other GI just didn't have a game plan. I had seen this new guy twice before but because he is in a hospital clinic he is really hard to get in with, so I figured I would stick with the other guy. but this guy communicates better, and had a clear game plan for me. so, here is the deal. I appear to be failing Imuran. he said there is one more thing we'll try before making that conclusion, which is a combo of cort-foam in the AM and Rowasa in the PM, every night for a couple weeks (Quincy, I figured he was channeling you when he said the word "Rowasa"). If that works, he said I can stay on that combo indefinitely, as apparently the steroid in the foam is very very minimal and rowasa is proven to be effective even when only used every few nights instead of nightly. he said I wouldn't use the combo every night - we'd taper it down - but that I could do that for the next 60 years, and stay on imuran, and be safe. if that doesn't work... then he will do a scope, confirm it isn't crohns (though he feels confident it is not), and just see what it looks like in my colon, and then discuss remi vs clinical trial vs surgery. I suspect I'd do surgery, but we'll see.

in any case, I somehow just feel so relieved knowing that we have a plan for the next 4 weeks. I have a follow-up in a month (unless things get worse) and also a surgical consult with the main UNC surgeon in a month. I had arranged the consult awhile ago, and this GI suggested I keep it so that i can think about surgery at a time when I am not actually having to make the decision. he said that because I am only 30 and already headed towards remicade, he wouldn't want to put me on prograf because it wouldn't be a long-term option. he stressed to me that we are nowhere near having to decide about surgery, but he was also honest that Imuran hasn't worked for me as well as it should have.

so, all in all, I somehow feel very good today. i think I am just excited to have some sort of plan.
anyway, just wanted to pass all that along. please excuse the long post and I hope all of you are well today.
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.
Getting married October, 2008!!!!


tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 2/7/2008 5:56 PM (GMT -6)   
Great post! It sounds like you have really found a great GI. That is awesome! I have told my hubby a zillion times if I ever end up in the hospital have them transfer me to UNC if it is bad! Keep us posted on how you are doing w/ the new meds combo.
Tabitha (Tab)

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

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


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/7/2008 6:08 PM (GMT -6)   
Good to hear you are exploring your options! Did you talk to Plevy at UNC? I got my 2nd opinion from him before consulting with the surgeon there too. He is definitely aggressive about treating UC medically before surgery should be considered. I hope the next 4 weeks go smoothly.
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)


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4226
   Posted 2/7/2008 6:34 PM (GMT -6)   
I'm really liking #7! Gives me a little hope, since I've yet to reach remission.

Great to hear you have a game plan and a new GI that communicates well and really seems he wants to get you into remission. Yay! I feel like my current GI isn't really providing a plan for me. Keep us posted on how you're doing with the new meds. regimen.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 2/7/2008 7:11 PM (GMT -6)   
Thanks for sharing info. with us! Good that you went to UNC & feel better-informed as a result. RE #7: by "normalize" I guess they mean have a spontaneous remission, which is possible but pretty rare as far as I know. The impression I get from discussions with my gastro, who subspecializes in IBD, is that something exceptional is likely always going on in a UCer's colon, even when not flaring. I tend to believe this because my colon shrank over a foot in length since I was diagnosed in 1980, even though the meds kept inflammation confined to the left-side. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/8/2008 2:09 AM (GMT 0)   
The information I've read is that about 10% of people diagnosed with UC have one flare, are diagnosed and then never have another flare. Who knows how many of them were misdiagnosed, but at least it give us hope to get us through the first few months. We always think we have a chance of being one of those 10%.

Thanks for sharing the information, UC. Interesting.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/7/2008 8:40 PM (GMT -6)   
Thanks for the info. I'm a little disappointed about #1. I am not sure what Methotrexate is? what is it? That actually gives me some hope because I almost have a fistula so maybe that Methotrxate would work. I hope the meds work out for you. It sounds like you have a very good GI. I always feel rushed at my appointments. It's good to hear of a GI who takes the time out to talk to his patients. I'd try Remicade before surgery. 50% is pretty good odds compared to the other meds. I've been through some tough times possibly due to Remicade, but I'd do it again in a hearbeat knowing I've made it longer without surgery and have felt better most the time.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 2/8/2008 1:12 AM (GMT -6)   
princesscolon...methotrexate in an immunosuppressant. Maybe try the Crohn's board and enquire to those who are on it for more info, symptoms, side effects..etc.

I have a friend with fistulising CD and she takes Methotrexate shots (I believe weekly). She does take Remicade as needed, but not ongoing.

Something to consider..

quincy
*Heather*Status: mini flare Dec 28... tapered to every second night
~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 !!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 2/8/2008 1:17 AM (GMT -6)   
UCinNC....wow, did you take notes?? Great memory for the info from the doc. I'm happy to hear you like the new one. Best to have a doc that you can relate to as well as give you information to sink your teeth into.

It's awesome you now have a plan.....seems A-1 considering he suggested rectal meds...lol!! I don't channel, however, but it does sound as though it's a workable plan. I've used the rectal meds in conjunction with oral (5ASA) for over 19 years....I plan to forever or until they stop working. So far so good. It just takes patience and eventual understanding (through experience) as to how they can work for you.

Thanks for the info!

Keep us updated as to how you're doing.

I still can't believe you've never been on any rectal meds as of yet.

quincy
*Heather*Status: mini flare Dec 28... tapered to every second night
~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 !!!


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 2/8/2008 10:53 AM (GMT -6)   
Wow great info and sure glad you have a plan. I didn't know that you could stay in permanent remission. My GI told me when I was first diagnosed that I would definitely flare again, can't say when, but one day it will happen again. So #7 has given me hope. I reached remission with no meds.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 2/8/2008 11:02 AM (GMT -6)   
UCinNC,

Why does he feel confident that it is not Chron's? Is it that your biopsy is conclusive?

I only ask out of general interest, nothing specific to your case. I'd be interested to know the factors that GIs use to determine/confirm the diagnosis of UC over CD, other than the obvious e.g. biopsy, location etc.

I also find 7) interesting. It relates to "immune system burn out" that my GI mentioned to me.

Thanks,

D
400-800 mg Asacol a day
Iron supplment,Probioitcs
Balanced Diet (...ish!!), Reduced Stress
 
"There are only about a half dozen things that make 80% of the difference in any area of our lives."
 
 
 
 
 
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/8/2008 11:03 AM (GMT -6)   
Great info, nice to hear #3, that backs up my research and info from GI. Though still makes me wonder why the baby would get more imuran from breastfeeding than from being in the womb.....

Glad that you have a plan, I think not knowing is one of the hardest things. I hope the new combo works for you!

Did you discuss Humira w/the doc?
Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/8/2008 11:39 AM (GMT -6)   
Damo -he doesn't think I have crohns, and he is basing that on what you said - the last c-scope and the biopsy, primarily and also, I think, more generally, the symptoms I have described to him. However, before discussing remi or any other possible treatments, he would want to confirm that because apparently he feels treatment options are very different for the two diseases. first, UNC is using drugs for crohns they won't use for UC, and second, because surgery could be an option, he wouldn't advise a colectomy without as much certainty as any one human can offer that it is, in fact, UC. He also said that because Imuran does work in most people with UC (meaning more than 51%), when he has a patient who fails Imuran he does a scope as a standard procedure just to make sure there isn't anything weird going on, including, strangely, the possibility that many symptom are caused by IBS and not IBD. Obviously, bleeding wouldn't be one of those, but he said that if a colon looks great and the person has non-blood UC symptoms, then it may be IBS, so they want to check the colon.

Beth75 -he did mention Humira. he said they aren't prescribing it yet for UC because that is an off-label use but that it will definitely get approval for UC use, it is just a metter of time. I was sort-of surprised they weren't using it yet but whatever, I am not the doctor....
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.
Getting married October, 2008!!!!


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/8/2008 1:49 PM (GMT -6)   
Great info - thanks for sharing!

So glad to hear that you found a GI with a plan - such peace of mind comes from knowing that someone else has a plan to treat your issues.
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 2/8/2008 7:50 PM (GMT -6)   
Thank you so much for sharing this info and doing it in such a clear way!

I was encouraged to hear that your Dr. thinks you can stay on cortifoam indefinitely without problems. I am always worried that I've been using it too long. This makes me feel much better since I thought my doctor was being a little too laid back about it.

Your new plan sounds good. I'm happy for you-- that you sought out a better treatment and you were able to find it! Congrats.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

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