Sara14-- how did your November GI appointment work out?

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Old Hat
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   Posted 12/2/2008 8:59 PM (GMT -6)   
You were planning to show him some documentation re use of Cortifoam. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Old Hat
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   Posted 12/3/2008 12:30 PM (GMT -6)   
bump  cool

Old Hat
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   Posted 12/4/2008 9:05 PM (GMT -6)   

Sara14
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   Posted 12/5/2008 9:45 PM (GMT -6)   
Hi, Old Hat! Thank you so much for remembering and for asking how it went. I'm sorry I didn't see your post earlier. I haven't been on the forums much lately.

My appointment went pretty well. I asked my GI again what his thoughts were on me trying Cortifoam and he basically told me the same thing he said last time, with one difference. He said that he would not suggest that I use Cortifoam, or anything with steroids in it, unless I really need to or feel that the symptoms I'm having are really negatively affecting my quality of life. His reasoning is that once we use steroids on a flare, then usually steroids are needed to control every flare thereafter (according to him). He seemed to be more concerned with my body becoming dependent on steroids the more I have to use them, and not as concerned about possible side effects. He also seemed to think that I'll probably have to be on them at some point in my life, so he seemed like he wanted to wait as long as possible before that happened (but he didn't say this overtly).

His suggestion to me to control my symptoms (about 3-6 formed BMs/day) was to take an Immodium every morning after my first BM. I was shocked that he suggested this and asked him about the risk of toxic megacolon. He said that is only a risk when someone is having bloody diarrhea, and that I wouldn't have to worry about it. Still, I don't really feel comfortable taking Immodium every day. I haven't taken any and don't think I will.

With all that being said, my GI did tell me if I want to try Cortifoam he will write me a prescription. I decided not to try it right now because his reasoning seems logical, but he said I can call him anytime and he'll send me a prescription for it. I know you and many others have had good luck with it, but I don't really know what to do since my GI didn't suggest I take it. I feel good knowing that I can call him to get a prescription though if I decide to try it out.

Thanks again for asking. Sorry I got a little long winded. How have you been doing lately?

- Sara
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


Old Hat
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   Posted 12/5/2008 10:50 PM (GMT -6)   
Hi & welcome back! I'm surprised at your gastro recommending daily Imodium + stating that you'd become dependent on steroids via Cortifoam, which is only 10% steroid. Steroid dependency becomes a problem when one has to rely on the pills or liquid enemas for more than a month-- because they are really potent. Anyway, it sounds like you loosened his thinking up a bit since he did offer to write an Rx for Cortifoam. Also, it's good that he does have awareness of steroid-induced problems; so many members writing here got messed up by negligent doctors keeping them on high doses of Prednisone indefinitely. At least you can trust him not to make that kind of damaging mistake. Maybe you can reduce total bms daily by consuming some plain boiled rice with one meal. I suggest that because rice and farina seem to be my best GI stabilizers. As for my current state (thanks for asking!), I saw my gastro recently & we discussed the fact that generic Colazal doesn't seem to do as much for me as the original. My gastro said that other UCers report similar results & smiled when I commented that the generic (Watson is the one marketed in our area) seems to lack a stool conditioner present in the original version. That leads to loose Rowasa-type bms instead of nicely formed blobs. I felt a lot more confident after our conversation that I'll manage one way or another to adjust & avoid flaring. The generic's anti-inflammatory property seems pretty close to the original, which is most important. According to my gastro, balzalazide will soon be marketed in 2 additional brand-name tablets &/or capsules, which my insurance would likely cover, at least for a while-- so that may be a helpful alternative in the near future. We did bloods & will see if my ESR indicates any danger of flaring/need for med dosage adjustment. I'm to return for office visit in 3 months, when we'll likely schedule c-scope. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 generic Colazal daily for maintenance of remission, + occasional generic Rowasa) P.S. I mentioned to my gastro (based on your previous posts) that generic Rowasa made in PA is distributed in Iowa, whereas we in NY still get the Israeli generic in those hard-to-squeeze bottles! LOL!!!!!!! Somebody please explain the logic behind that!!!!!!

Sara14
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Date Joined Mar 2007
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   Posted 12/6/2008 12:13 AM (GMT -6)   
Hello again. =)
Good to hear you're doing pretty well. Does your insurance not cover the brand name Colazal anymore?

I'm not sure if he thought I would necessarily have a hard time getting off the Cortifoam this time...but he seemed to think that if I used it now...then I would need to use it every time I flare, and in increasing frequency/dosage/duration with each future flare, hence becoming steroid dependent over a long course of time. I don't know...what do you think? Do you think I should just try it still? I really trust your and others' opinions on this board, but it is so hard to know what to do when your doctor tells you one thing and other people you trust say something else, you know?

My GI didn't do any blood tests on me and he said I don't need to come in for another year. I don't think he ran any blood tests last time I saw him either...that kind of worries me. I should have my kidneys checked out, shouldn't I?

The generic Rowasa I get in Iowa is the stuff from Israel, but one time I got it while visiting my dad in Indiana, and it was the stuff from PA. But yeah, I really wish I could get that stuff all the time since the bottles were a lot better. You're right -- it makes no sense to ship it all the way around the world!

Oh yeah - guess what I am ticked off about? My workplace just made a new rule that all of our maintenance medications have to be filled through our insurance company's mail order pharmacy. It really upsets me, because I really like my pharmacist. I go to a locally-owned place where the pharmacist knows me by name and always asks me how I'm doing when I stop in. He seems to genuinely care about me and is always extremely helpful when I have questions on medications, etc. I really hate the idea of getting my drugs through the mail, having to wait 5 days to get the drugs and having to call some hotline or something if I have questions...not even ever seeing the person on the other end of the phone. Plus, I really like being able to support local businesses. I guess I shouldn't complain, because so many people don't have health insurance or even jobs right now. But it still makes me mad.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


Old Hat
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Date Joined Feb 2007
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   Posted 12/6/2008 1:01 AM (GMT -6)   
RE bloodwork/urinalysis-- patients on 5-ASAs should have it tested 2-3 times annually per my gastro, who subspecializes in IBD treatment. If yours isn't doing that, ask your PCP or internist to do it. The PCP or internist is easier for you to get to anyway, right? Back on the subject of Rx insurance, mine only covers up to 60% of a brand-name med once its generic becomes available, but it pays 100% of the generic. My gastro thinks it should pay 100% of the brand-name if the generic doesn't work as well-- LOL. (The insurance company could care less about THAT!) I agree with you entirely RE local pharmacy vs. mail order. So far I've been able to avoid mail order because I don't have to refill as often on the lower remission dose of my med. Apart from the personalized attention from the local pharmacist, I wonder about dating & storage of mail order supplies. How do we know where the pills are really coming from? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Old Hat
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Date Joined Feb 2007
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   Posted 12/6/2008 1:19 AM (GMT -6)   
Sorry-- I neglected to answer your Q about your gastro's attitude toward the potential for development of steroid dependency via Cortifoam. I've never heard it expressed the way he described it. Hopefully, some other members here will weigh in on that-- especially Judilyn, because of her experience as both a medical professional & a UCer who had steroid issues. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Sara14
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Date Joined Mar 2007
Total Posts : 4538
   Posted 12/7/2008 1:20 PM (GMT -6)   
Thanks for answering all my questions. I will ask my PCP to do a urinalysis on me. I actually just had one last week, b/c I had a urinary tract infection, but I'm not sure what they tested with that one.

I agree with your gastro regarding the insurance company should have to pay all of the brand name if the generic doesn't work! And, yes, I'm also a bit worried about the way the mail order stores their meds and about them sitting outside all day in the cold when the mail carrier drops them off while I'm at work.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 12/7/2008 4:34 PM (GMT -6)   
Sara - you wrote.... I was shocked that he suggested this and asked him about the risk of toxic megacolon. He said that is only a risk when someone is having bloody diarrhea, and that I wouldn't have to worry about it. Still, I don't really feel comfortable taking Immodium every day. I haven't taken any and don't think I will.
 
I am hoping my doctor will prescribe Imodium.  He already has said for me to take it is ok after the first BM in the morning.  I only need to take 1/2 so I do when going out someplace and it works great.  I never have a problem next day or constipation.  I truly feel better when taking it in small doses when needed - like when cramping a lot.  I go next week and Proctofoam is not stopping the bleeding but everything else is pretty good - formed stool and less cramping (especially days I take 1/2 Imodium at least once.).
He also told me not to worry about Megacolon in my case.  I know we are all different.
ElaineNY

68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Close to remission -spoke too soon!
 
 
 
 
 
 
 


Limeycricketlover
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Date Joined Oct 2008
Total Posts : 67
   Posted 12/7/2008 6:03 PM (GMT -6)   
Sara, very glad you're so cautious over using Imodium. I'd be concerned if my doc ever recommended it to me, and would definitely go for a second opinion. Can't see why he'd recommend it when your bms are already formed? The stuff is designed to inhibit peristalsis, which stops the diarrhoea, the colon then has time to absorb the liquid, meaning that stools will be solid once they are passed, at which point usage can be stopped. It does do its job very well, which is why the manufacturers recommend not using for more than 2 days consecutively. The trouble is, us UC'ers don't necessarily absorb liquid through the colon very well (due to ulcers, scarring etc), which encourages continual usage and can lead to a paralytic ileus with subsequent constipation, etc, and even, as you rightly point out, toxic megacolon.

Sorry for the mini rant, but you may want to try a soluble fibre supplement as an alternative, which can help to bulk up the stools and slow things down this way.
UC - diagnosed Sep 2008 - Not seen GI since then...
Omeprazole 2 x 20mg
Prednisolone 20mg
Calcium (Adcal-D3) 3000mg
Mesalazine 8 x 500mg
Mesalazine foam enema
Multivitamins x 2
Omega 3
Probiotic (acidophilus)
Ferrous Sulphate 3 x 200mg

Unable to tolerate Paracetamol

Foods for me to avoid:
Any types of green leaf - big time.

Post Edited (Limeycricketlover) : 12/7/2008 4:07:48 PM (GMT-7)


kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 12/7/2008 6:12 PM (GMT -6)   

Just shows you how different we are - in our doctors and our thinking.  Seems you understand better than I do how it works, etc. but my GI went to college and training for many years and has 20 years experience so I rely on him to tell me if it is ok to take Imodium and other medication. He prescribes it to many of his patients when appropriate.  Of course, we should always confer with a professional.  I am 68 and have been using Imodium for IBS since beginning of time!!  I will be careful and I will keep making sure my doc knows what I am doing. 

Any medication should be taken with care. 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Close to remission -spoke too soon!
 
 
 
 
 
 
 


Sara14
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Date Joined Mar 2007
Total Posts : 4538
   Posted 12/8/2008 10:54 AM (GMT -6)   
And this is why I never know what to do...because everyone's doctors tell them different things. Thanks for the input though. I appreciate the comments and hearing about firsthand experience.

Limey - I currently take a soluble fiber supplement (Metamucil). I seems to help a bit. I haven't been taking it every day lately and I should probably start doing that again.

And speaking of 'D,' I just had it again last night for the first time in many months. I started the enemas again last night, so hopefully that helps. I didn't have any blood, so maybe it was the box of chocolate caramels I ate this weekend...I know, I know...I don't usually do that, but when I have that kind of stuff in my house, it's hard to stop eating them. That's why I usually just don't buy them.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 12/8/2008 11:51 AM (GMT -6)   

One reason my doctor and NP don't think I should come to these forums - too much (or maybe not enough) information.  But, we all can use the support for sure!

As for the chocolate caramels (did you save me one?).  I have had IBS for years and learned what I CAN eat or at least what will cause me "D".  So, now having UC I don't believe what I eat affects that condition - just my IBS.  Still have to "PAY" when I don't eat right!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Close to remission -spoke too soon!
 
 
 
 
 
 
 


Old Hat
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Date Joined Feb 2007
Total Posts : 5190
   Posted 12/8/2008 10:41 PM (GMT -6)   
Are you caffeine-sensitive, Sara? It sets off my colon within 15 minutes so I try to avoid it, including limiting chocolate intake. And do I ever adore chocolate-- especially the dark varieties!!!!!!!!! But it definitely disturbs my lower left colon-- I guess the mucosa is thin there. Anyway, getting back to your gastro situation: I disagree with his advice re Immodium, Cortifoam, & your not needing another check-up for a year. It seems that in remission IBD subspecialists still want to see patients every 6 months to do occult blood faeces screen, bloodwork, & urinalysis. It's too bad that Loftus was such a poor communicator when you went to Mayo; he should have cleared up your basic questions re longterm monitoring. Everything about IBD treatment boils down to the individual practitioner-- essentially how much they know about our ailments + how much they care to help us manage our symptoms. I hope you'll still get some responses from experienced members here to your above-mentioned questions. CALLING JUDILYN, DAKOTA GIRL, hey there!!!!!!!!!! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

bbc
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   Posted 12/8/2008 11:22 PM (GMT -6)   
Corti Foam poses very little if not none of the steriod effects like pred etc since it's highly localized in its application...its also recommended to use only twice a week once it gets your symptoms under control so 1) don't sweat it amd 2) only use it if you need a good rectal med.
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


Sara14
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Date Joined Mar 2007
Total Posts : 4538
   Posted 12/10/2008 4:48 PM (GMT -6)   
ElaineNY - I am sorry, but I didn't save you (or anyone else) any chocolates. =) I pretty much devoured them. I haven't had any 'D' or other symptoms since that night, so I'm guessing it was because of the chocolates or something else I ate, although I've never gotten 'D' from food before. Maybe I have IBS now, too! Yay - another thing to add to the list. :)

Old Hat - I'm not sure if I'm caffeine-sensitive. I drink a couple cups of coffee every morning. I do have a lot of BMs in the morning so maybe the coffee is contributing to that, but I really don't want to give it up! I don't eat much chocolate (besides last weekend) anymore, but when I do, my stomach/colon does seem to get upset. I always attributed it to the sugar, but maybe it's the caffeine. So, does your specialist order stool tests every 6 months, or what is the occult blood feces screen?

Thanks again everybody for the advice/info.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


kops2da
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Date Joined Jun 2008
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   Posted 12/10/2008 4:52 PM (GMT -6)   

Sara14 - gotta tell ya what happened - after talking about chocolate.  I bought a small bag of chocolate covered with foil (look like little packages) for my Christmas candy dish.  Thought I could enjoy one once in a while.  Well, I grabbed one and opened it and popped it in my mouth all at once.  YUCK - realized I bought the ONE chocolate I don't really care for - filled with peanut butter.  I love PB but not with anything sweet!  Soooooo, my husband will eat them and granddaughter.  May have saved me from indigestion - hee hee!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Close to remission -spoke too soon!
 
 
 
 
 
 
 


Old Hat
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Date Joined Feb 2007
Total Posts : 5190
   Posted 12/10/2008 9:01 PM (GMT -6)   
Sara-- the 2 tests my subspecialist considers essential monitors of UC are (1) ESR in bloodwork [sedimentation rate], and (2) occult blood faeces screen-- done via digital exam. There are doctors who will tell patients to collect the sample themselves & bring to office visit, a royal nuisance, plus it may not be adequate for accurate testing. My subspecialist keeps the diagnostic kits right in the examining room, collects the sample from patient, & tests it right there within 5-10 minutes. The immediate result helps the doctor decide whether change in medication or scope scheduling is needed. RE caffeine sensitivity-- you could try reducing your AM coffee to one cup to see what happens with bms. Then wean it to decaf. I know this sounds radical, but if you do it gradually, your body will adjust to the withdrawal of caffeine w/o headaches & you can find a good-tasting decaf. A friend of mine had to do that because of Parkinson's med interaction, but it worked. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Limeycricketlover
Regular Member


Date Joined Oct 2008
Total Posts : 67
   Posted 12/11/2008 4:25 PM (GMT -6)   
On the subject of chocolate, my boss brought in a sample he'd been given by a dentist (yes, a dentist recommending a chocolate!) that's supposed to be healthy - loads of anti-oxidants etc. Don't know about the caffiene content, though. Will check it out tomorrow (unless some swine has snaffled it all) and post the details if it looks promising.

BTW, thanks for the wise post above, Elaine, I was being a bit preachy, wasn't I? That was a very concilliatory way of dealing with it. Pompous, moi?
UC - diagnosed Sep 2008 - Not seen GI since then...
Omeprazole 2 x 20mg
Prednisolone 20mg
Calcium (Adcal-D3) 3000mg
Mesalazine 8 x 500mg
Mesalazine foam enema
Multivitamins x 2
Omega 3
Probiotic (acidophilus)
Ferrous Sulphate 3 x 200mg

Unable to tolerate Paracetamol

Foods for me to avoid:
Any types of green leaf - big time.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 12/11/2008 6:38 PM (GMT -6)   

It is good we have this "place" to come to when we feel like venting, giving our opinions, etc.  It is hard for my friends and family to understand but I know those of you here do!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Close to remission -spoke too soon!
 
 
 
 
 
 
 


downs
Regular Member


Date Joined Dec 2008
Total Posts : 76
   Posted 12/12/2008 6:28 AM (GMT -6)   
please help

downs
Regular Member


Date Joined Dec 2008
Total Posts : 76
   Posted 12/12/2008 6:29 AM (GMT -6)   
please help.........i am 41,,,diagnosed 27 and 15 weeks pregnant,,i get about 2 bouts a year,,this one is bad,,,,,,i am on 40 mg of prednisone and feel i will not get better,,its been 4 days,,when i go its white or like a pile of sand

Old Hat
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Date Joined Feb 2007
Total Posts : 5190
   Posted 12/14/2008 3:34 PM (GMT -6)   
This became a hijacked post-- which Sherry has just warned about. / Old Hat

Sara14
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Date Joined Mar 2007
Total Posts : 4538
   Posted 12/14/2008 6:43 PM (GMT -6)   
Old Hat - Thanks for answering my question regarding the tests. I will bring this up to my doctors next time I see them. I think I will also take your suggestion and cut down on my morning coffee...I think you may be on to something there and it would be great to cut down on my trips to the bathroom.
 
downs - If you start a new post, you will get more responses. I'm sorry you're not feeling well. Have you talked to your doctor about your options?
 
That's funny, ElaineNY. I love peanut butter and chocolate! I would gladly help you finish them. =)
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops

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