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

You were planning to show him some documentation re use of Cortifoam. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

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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!!!!!!

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.])

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.

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.

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.

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.])

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.

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.])

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

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 - 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. =)