Had my first GI visit Friday.

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calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 8/31/2009 11:26 AM (GMT -6)   
Hello all,

I had my first GI visit and I really like him alot. He was totally supportive of the probiotics I'm taking and said it sounded like they are helping.

On my path report from my colonoscopy it said 'dysplasia indeterminate' and he said that only meant that they couldn't see one way or the other b/c I was so inflammed. He said they couldn't say it WAS or WASN'T there. He is not worried about it but for peace of mind that maybe we can do another scope after my current inflammation goes down.

I am going to try the asacol again, hopefully it was not what was making me sick before. He said if that's going well, then I'm to start taking Cipro a week later, just for a week. But I should still take my probiotics too.

He does want to figure out what kind of colitis I have so he wants me to have an upper GI with small bowel follow through...that sounds terrible, have any of you had this?

Also, the the lab work Promethus I think it is called.

And I go back to see him in 3 months.

Any thoughts?
*Amy, 32, dx with idiopathic colitis July 2009. Dysplasia found also.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


songlady
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Date Joined Aug 2009
Total Posts : 3648
   Posted 8/31/2009 12:15 PM (GMT -6)   
Hi Amy -
How much of the colon is inflamed?
When I was first diagnosed 23 years ago I did the upper GI and small bowel thing, too. It wasn't a day at the beach but it wasn't horrible as I remember. Some of it involved drinking the "bad milkshake" stuff and their taking pictures as it went through.

I hope the asacol works for you this time! I've been on a lot of it for a long time, though when I was first diagnosed I was on 6 pills a day like you.

If you have indications that it doesn't agree with you, don't wait the 3 months - call him! The several gastroenterologists I've had have said one reason they go into this specialty is that unlike other specialists they get to do more direct patient care and develop long-term relationships with their patients.

The dysplasia thing is scary sounding, but from this latest bit of info it just sounds as if they don't know anything. So, think positive thoughts - and get it looked at again when the inflammation is under control.

A doctor you're comfortable with is an incredible help in a journey such as this! It's great you like him!!
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills a day
Metamucil - 2 doses a day
Cortenemas or Rowasa from time to time
VSL#3, Ultimate Flora Critical Care
Canasa as needed


Peety
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Date Joined Mar 2008
Total Posts : 2855
   Posted 8/31/2009 12:24 PM (GMT -6)   
I also had the upper GI many years ago when I first fell ill in the 1980s. I won't kid you, it was awful. I thought it was worse than the colonoscopies or flex-sigs. Maybe because it was all so new to me and the technician was not very comforting, that didn't help. Hopefully in 25 years they have made them easier on people.
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


quincy
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Date Joined May 2003
Total Posts : 30603
   Posted 8/31/2009 9:42 PM (GMT -6)   
Hi Amy..totally makes sense regarding the pathology report and having more biopsies once things have settled down.

Don't know why he wants you on cipro, however.

Good idea for the upper scope. I've never had it done...

You should also consider a fibre supplement...but maybe again once things have settled.

Did he not mention rectal meds? yeah, I always have to go there...lol..

Happy to hear you like your new GI. I've had mine since diagnosis 20+ years ago and dread the day he retires..gulp...

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 9/1/2009 5:21 AM (GMT -6)   
Songlady, as far as how much of my colon, it's the rectum, sigmoid, and lower descending. And yes, he told me that if I wasn't noticing improvements with the Asacol to call him then instead of waiting 3 months. The 3 months is if everything is working. I'm not as worried now about the Upper GI if it's just drinking some goo and then having x-rays, at least I won't be put to sleep and have to do all that prep and yadda yadda.

Quincy, yes, I'm feeling a bit better about the whole dysplasia issue, from what my doc said I thought I definitely had it but then when I got my own copy of the path report I realized that they couldn't see one way or the other. And the GI said it usually takes years for dysplasia to form and I've only had symptoms since April. But I'm going to do another scope when things calm down I think.

The Cipro, he said that it's something he usually does at first just to make sure there isn't any infectious colitis (esp. since we are not exactly sure what kind I have).

The upper scope is to rule out Chron's since the path report didn't put a name on my colitis. All the docs think it is UC but he wants to be sure and I do to.

Fiber...I tried that and it made me worse. But I might try it again when the flare settles down a bit. Actually, I have settled ALOT with just the probiotic. Is it possible for just the probiotic to help that much?

Rectal meds...he did mention them, but since my symptoms are so mild he wants to do one step at a time so I'm on the minimum of everything.
*Amy, 32, dx with idiopathic colitis July 2009. Dysplasia found also.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


Peety
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Date Joined Mar 2008
Total Posts : 2855
   Posted 9/1/2009 10:24 AM (GMT -6)   
Yeah, you want to know if it's Chrons.
BTW, that's a pretty small dose of Asacol. You can do as many as 12 per day. Ask about taking more?
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 9/1/2009 1:00 PM (GMT -6)   
Hi..you still NEED to be on rectal meds.....really! especially if dysplasia has been "suspected" 5ASA is believed to help in preventing cancer in the colon.


Fibre supplements have to be taken slowly and increased slowly....

Stool samples would be the way to check for any bugaboos.....hope he took them.

Keep us posted and please reconsider the rectal meds...

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 9/2/2009 1:14 PM (GMT -6)   
didn't know that about the 5 ASA and cancer prevention! I will be sure to ask that at my next appt.

yes, he did order more stool samples

would eating a cereal high in fiber be a good way to start? Like FiberOne, it has 50% of your daily fiber per serving. That's all I was doing and it made me so bloated and gassy, and having more BMs per day.

The rectal meds...I'm not opposed to them, can you get to the point where you can taper off them completely and just use the Asacol orally?
*Amy, 32, dx with idiopathic colitis July 2009.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 9/3/2009 2:52 AM (GMT -6)   
Hi...you can do research on 5-ASA and colon cancer.

I'd be doubled over in pain if I ate high fibre cereal (plus that amount of milk)..maybe save it for a small snack in the evening or a time when you won't be bothered as much by the gasssss if you like to eat it.

I personally use the Metamucil capsules either during or right after I eat. I started with one capsule at supper, then one with each meal then increased about a week till I got to 4 caps with each meal. I only eat two large meals daily..so that's 8 in total daily.

Regarding rectal meds.....your rectum is inflamed, right? You should be on them and taper to a maintenance dosage of about twice a week.

Considering the possible dysplasia, I would see it as a help in your situation as well.

Good the doc asked for more stool samples.

Are you on the cipro yet?

you might want to consider upping the align if you're on it.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 9/3/2009 5:14 AM (GMT -6)   
yes, I have been trying to do some reading and there's a ton of information out there, I'm looking at the ccfa site alot, the GI told me that was a good place to start.

Hmmm, ok, so maybe I'll try fiber capsules. I'll let you know how that goes. Also, I use Rice Dream on cereal, cow's milk repulses me, I wish cheese did too...lol I was thinking that fiber in food form would be easier to tolerate at first but perhaps that thinking was wrong.

Ok, the rectal meds...here's my plan, the GI told me to give the oral Asacol 2-3 weeks and if I was not seeing improvement to call him and we'd start something else as well. That's when I'll ask for them.

No, I'm not on the Cipro yet, GI told me to take the Asacol for a week, then start the Cipro so in case something did make me nauseous we'd know which it was.

Did you mean up the Align just while I was on Cipro or permanently?
*Amy, 32, dx with idiopathic colitis July 2009.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 9/3/2009 12:09 PM (GMT -6)   
Hi...call the doc sooner than the 3 weeks and get on the rectal meds asap. the wait and see could be extended if you are seeing "some" improvement. That's what I would be afraid of, however....and then he will say, Ok go on the cipro if you might not need it.

The cipro should be determined if you need it based on if you had fistulas which you don't or some invader which would be confirmed with a stool sample.

The rectal meds I would suggest you to start with are Rowasa (I'm assuming you're in the US.,.,lol)

You could up the align anyway...what's the max dosage stated on the directions?

Fibre supplements...yeah, through food can be touchy sometimes with some fibres. I find it more convenient and still have the other fibre foods anyway. As well...I don't eat enough of the fibre foods to give the same benefits as the fibre supplements..totally different.

It's touch and go with experimenting anyway...and you're in a different situation. Do what you think is best, but I'd truly wait and see about the Cipro...if you don't need it, don't take it.

Of course, you're not yet diagnosed with a specific colitis...

Your doc, however, is still being conservative in treatment, which I see as a good thing....

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Christine1946
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Date Joined Aug 2008
Total Posts : 5965
   Posted 9/3/2009 12:33 PM (GMT -6)   
     I cannot tolerate fiber while flaring.  It makes  me much, much worse.  I use Red Mill ground flaxseed MEAL on my rice cereal.  I use Silk (soy milk) in my cereal.   The best diet while in a flare is a low residue diet and when symptoms start to subside, increase fiber slowly.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 9/4/2009 5:34 AM (GMT -6)   
yes, quincy I'm in the US, and you are not I figure since we spell fiber differently :) lol

Ok, I've been trying to read more about the rectal meds and I can't find the specific answers I want so I'll just keep bothering you. Allright, first, will I be able to taper completely off them or will I be using them forever? Second, how does it work, once I use it do I have to lay down for the rest of the night? Third, is it impossible for me to go into remission without them? I truly feel tons better since this has all started, mainly on the probiotic.

I just need to be fully informed before I start using something. I was reading all about Asacol before I started taking it. And Asacol is just pills, the rectal meds seem to be a whole other ballgame.

And he is being quite conservative, which I like as well, I want to use the minimum possible and if I need to step up to other things later that is fine.

I am a little leery about the Cipro, I've not decided what to do yet.

And the Align says 1 pill a day. I'd thought about trying a different one as well, but this is working so perhaps I won't do that right now.

Thanks for all your information and hope I'm not making you crazy with all my questions!
*Amy, 32, dx with idiopathic colitis July 2009.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 9/4/2009 5:36 AM (GMT -6)   
Christine,

yeah, I've had the trouble with the fiber from food, I might try the supplement though.

Have you ever tried Rice Dream (rice milk) on cereal? I love it, it is sweeter than soy. Just thought I'd throw that out there.
*Amy, 32, dx with idiopathic colitis July 2009.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 9/4/2009 9:29 AM (GMT -6)   
     No Amy, I haven't heard of Rice Dream.  I use the vanilla flavored Silk.  They also have chocolate but I haven't tried it yet.  After my flare I will be able to tolerate 1% milk.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 9/4/2009 10:20 AM (GMT -6)   
Hi Amy..questions are good!

I'll do a search later for the 5ASA/cancer info.

The enemas are retained, and it's best to lay on the left side for at least half an hour.

I can get up after using them if I'm not flaring, if I'm flaring, it's better for me to stay quiet..lol.

It's best to taper them to a maintenance. Now, forever is subjective....for me, 20 years is like nothing...and I'm still dealing with UC, but I'm still on the same meds,.,.,which is a good thing.

I have my c-scope on Tuesday..so I'll see what's going on in there. The pathology won't be back for a few weeks..and if all is good precancer-wise, I'll have my next one in 3 (or 2) years depending on how I'm doing.

If the Align is working, that's great. I've tried different ones throughout the years....

I would think that using the enemas would be better than not.....consider where UC starts and the likelihood that it can always have some sort of a slow simmer of inflammation there. Some have symptoms, others don't...which can be a shocker when the symptoms appear.

It's an insurance type of thing....but the point of using the enemas is to keep flares to a minimum...which for me it's been awesome.

I'll look for the info tonight...I'll be busy all afternoon.
quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~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 : 30603
   Posted 9/5/2009 3:19 AM (GMT -6)   
Found a few articles...
 
 
 
Here's one not in support of it...
 
 
q
 
 
 
 
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 9/5/2009 10:31 AM (GMT -6)   
Thanks quincy! My internet was in and out yesterday and today, I'd get halfway through searches and it would kick me off, so hopefully it's all fixed now. Once I caught up on email, etc I'll give those articles a read!
*Amy, 32, dx with idiopathic colitis July 2009.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 9/5/2009 12:17 PM (GMT -6)   
you're welcome.

have a great weekend!
q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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