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Ulcerative Colitis
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Posted 5/23/2008 4:41 PM (GMT 0)
I've decided I have a real problem with this!!

I've recently collected all of my medical records and have read through them all and it's not even remotely how I remember it! I mean, for the most part it's documented accurately but most of the time I've noticed I've said that I'm not feeling too bad, when I remember feeling like I'm dying. Also, only ONE doctor acknowledged that the Asacol was making me feel worse, and that was my initial, pediatric, GI. All the other doctors just said "Edith stopped taking her Asacol because she's feeling better, but I advised that she should not stop taking her medication" Nooo... I was feeling better BECAUSE I stopped taking the Asacol!! Grrr

Does anyone else find themselves downplaying their symptoms? It's like, I don't want people to think I'm whining about it. And it seems every time I make an appointment when I'm feeling sick, by the time I get in, I'm not feeling that bad and I find it hard to verbalize the pain if I'm not actually having it.

I've decided, when I see my new doctor in July (the reason I'm not going back to my previous doctor I saw from before I moved to Iowa is I felt he never listened, just wrote me prescriptions for prednisone and sent me on my way) I'm going to write down all of MY feelings in addition to giving him my medical records, and I'm not going to let him push me into Asacol and prednisone because "that's what seems to work for other patients" because it doesn't work for me and I always just say "okay" without question in the past and never get anywhere. Hopefully this doctor is better at listening and caring... Sometimes I wish I could see my pediatric GI again instead of dealing with the "adult" doctors!

Posted 5/23/2008 4:47 PM (GMT 0)
I totally tend to do this. With my docs, friends, family, I even fool myself. In addition to not wanting to whine, I think it's that I never wanted to really admit how sick I was, because I was really, really sick.

When I was in really bad flare, I'd print out the record I kept daily about pain and other symptoms and take it in to my doctor visits. Then I could look at it and see that, rather than "occasional" pain, I was really having pain five out of seven days.
Posted 5/23/2008 4:51 PM (GMT 0)
That's a really good idea. I actually bought a daily planner thing to keep handy and write down all my bathroom trips, like "m&b" for mucous and blood, "sbm" for soft bowel movement "bd" for bloody diarrhea, etc... And then the following day I can total up the previous days trips and keep a record of how often I go and how often I have pain and blood because when they ask at the appointment, it's really hard to remember!
Posted 5/23/2008 5:19 PM (GMT 0)
By not staying on a maintenance drug like Asacol you are risking more flares. The goal with UC is to keep the inflammation to a minimum. I think you might be doing yourself more harm by trying to get by with a probiotic and an antidepressant. UC is a chronic life long disease with periods of remission and flares. I think all GIs would agree that taking a maintenance medication reduces the quantity and severity of flares thus reducing colon cancer.

To each his own and we all have to do what we are comfortable with doing. I hope you are able to stay well.

Sue
Posted 5/23/2008 5:24 PM (GMT 0)
I did that for long time, I still think I sometimes do that a little now, though I try really hard to be up front and brutally honest about everything.

My last flare scared the hell out of me. I am flaring now (blood in my bm's and having 3-5 a day), I started last tuesday (I think from taking aspirin). Prior to my last flare I would have just kind of hoped it would go away and not really think about it.

What is different this time? Well, I upped my pred (only by 5mg) for a few days, I had saved some hydrocortisone e's and began those as soon as I got home from vaca on Sat and called GI on 5/20, got my script for more e's and have been doing 'slightly better', I am cautious to say I am on the road to remission again. I hope my fast acting (as compared to prev.) will really help.

Also GI is having me do a stool sample b/c I was in the dominican republic. I did not drink the water there, but did have mixed drinks, I saw that they used bagged ice but I did notice on day 5 or 6 that between mixed drinks they wash out the mixers w/tap water and they don't dry them so there is still some water.
Posted 5/23/2008 5:26 PM (GMT 0)
There are other drugs out there for you if asacol bothers you. A new doc may be able to help you find one. If this one doesn't listen, try another. It's important to find a doc you can talk to.

I too have a problem downplaying my symptoms. I went to the doc the other day and called my mom after. She was funny. She kept asking me if I really told him what was wrong and saying "you didn't downplay your nausea did you? you know you do that all the time. You are not a complainer but you need to tell him how debilitating this is"

I feel I complain all the time though my family and friends say otherwise.

My husband says that I do complain just not verbally. He can only tell when I am in pain when he looks at me. My face, breathing, posture tell him everything he needs to know. Of course when he asks I say i'm fine.
Posted 5/23/2008 5:29 PM (GMT 0)
I agree that I should be on a maintenance drug, however I haven't found one that helps. Colazal and Asacol make me significantly worse, the only thing Pentasa changed was that I had little white pellets in my stool, and the only thing that has helped me at all is Azathioprine, which I'm reluctant to take without being under a doctor's supervision thus not being able to get the routine blood work done. I'm just saying, most of my doctors make it sound like I just decided to stop taking my medication because I was feeling better but it was completely the opposite.. I wasn't feeling THAT bad when I started the Asacol, then I got worse and worse so I stopped to see if it was the Asacol and my symptoms subsequently improved. Even prednisone doesn't help anymore... It controls the bleeding at first but never the diarrhea and urgency, I get a million side effects and then become dependent as in I can't taper even 5mg without feeling 100% worse.
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