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Ulcerative Colitis
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Posted 9/28/2016 8:01 PM (GMT 0)
Last time I posted, I said that if Uceris didn't give me enough of a boost to get me into remission, my doctor plans to put me on Imuran. I haven't been doing all that well lately and I see him a week from today, so that's probably what will happen. But I'm nervous about adding yet another heavy duty med just based on my description of my symptoms and a blood test (rather than a colonoscopy, which I just had in August). My mom made me question it even more, saying that maybe it's all just from food sensitivities. I don't know who or what to believe anymore. I mean, of course my doctor knows better than my mom, but she's right in saying that these decisions shouldn't be made lightly.

Thoughts?

How much information do blood tests (for inflammation) actually give the doctor? I heard they show that there's inflammation, but not where in your body it is. With this being my only health condition, I'm sure if there was any inflammation, it would indeed be from the UC.

I also wonder if I should ask for another c.diff test. It's been a few months since my last one. Should I make sure to rule that out before starting Imuran?

Oh, and I just got a jury duty questionnaire in the mail. I did a search for this topic on here and, with some exceptions, it seemed like most people were able to get help from their gastroenterologist in order to get out of it. My always-helpful doctor's receptionist (and I say that with the utmost level of sarcasm) was just like, "I highly doubt he'll do that." I told her to please just find out and let me know. She said I'd probably have to get that from my regular doctor. Um, to me it would make a lot more sense if it came from my GI, but what do I know?
Posted 9/28/2016 9:47 PM (GMT 0)
Blood tests have never been accurate for me at all. I've always had no inflammatory markers in my blood and still tons of inflammation - verified from scopes. I would ask for the c diff test for sure. I'd also request a calprotectin if you're doing stool anyway (not as accurate as a scope but better than blood work imo). My GI got me out of it. I was in a really bad flare up at the time, having me there would have been a mess for everyone. Thank goodness I got out of it. You should ask him directly, the people at the front desk just try to get rid of you as quickly as possible usually. Have you had the antibody test for Humira? Your mom's idea about food sensitivities, while sort of insulting at a certain point, may be accurate. You should try restricting your diet to see how you do. If you do well, that would be lovely. Of course, we'd all give up refried beans if that's what it took to stay healthy!
Posted 9/28/2016 9:53 PM (GMT 0)
Sorry to hear you're not doing well. I would request that you do some more testing. Tell him that you would like to check for c diff and other bacterial infections through stool samples. I know that I also had a really hard time believing that I was not responding to my usual meds (lialda, mesalamine, canasa) and when my doctor mentioned remicade I started to get really nervous. But after asking him for more testing, it was decided that remicade was a good choice for me. I literally requested 3 c diff tests before starting remicade...I was THAT paranoid and scared. Lol.

I know putting new drugs in our bodies sucks and is nerve wracking. Everything is going to be okay though :)
Posted 9/28/2016 11:14 PM (GMT 0)
Oh, and I just got a jury duty questionnaire in the mail. I did a search for this topic on here and, with some exceptions, it seemed like most people were able to get help from their gastroenterologist in order to get out of it. My always-helpful doctor's receptionist (and I say that with the utmost level of sarcasm) was just like, "I highly doubt he'll do that."

This kind of non-support from nursing staff would make me leave that GI and write letter to them why I did so. I fired my former primary MD because of lousy office staff. That doctor told my husband he understood why I left (I didn't write a letter) and my husband just left that office too because he did not trust them any more.

I have also written complimentary letters to doctors who have been great doctors.
A GI that does not understand how UC symptoms make serving on a jury impossible is not someone I can trust with my health.
Posted 9/28/2016 11:45 PM (GMT 0)
ya, i would definitely call bullsh!t on that receptionists behavior - you doc needs to know how his patients are being treated -

if he condones that sort of thing, time to move on -
Posted 9/30/2016 8:08 PM (GMT 0)

notsosicklygirl said...
Blood tests have never been accurate for me at all. I've always had no inflammatory markers in my blood and still tons of inflammation - verified from scopes. I would ask for the c diff test for sure. I'd also request a calprotectin if you're doing stool anyway (not as accurate as a scope but better than blood work imo). My GI got me out of it. I was in a really bad flare up at the time, having me there would have been a mess for everyone. Thank goodness I got out of it. You should ask him directly, the people at the front desk just try to get rid of you as quickly as possible usually. Have you had the antibody test for Humira? Your mom's idea about food sensitivities, while sort of insulting at a certain point, may be accurate. You should try restricting your diet to see how you do. If you do well, that would be lovely. Of course, we'd all give up refried beans if that's what it took to stay healthy!

Those are all good points. I definitely need to ask him about the antibody thing; he hasn't brought that up. And yeah, a calprotectin test would be helpful. What I really don't want is a flexible sigmoidoscopy any time I want to be sure that I'm doing the wrong thing. I'd rather go completely under! Ugh, I agree that there might be something to what my mom says. I just get so overwhelmed when I think about major diet change. I'm already a picky eater.

Oh and I couldn't agree more that most doctors' staff members just want to get rid of you. That's certainly how I feel with this one.
Posted 9/30/2016 8:12 PM (GMT 0)

disneygirl12 said...
Sorry to hear you're not doing well. I would request that you do some more testing. Tell him that you would like to check for c diff and other bacterial infections through stool samples. I know that I also had a really hard time believing that I was not responding to my usual meds (lialda, mesalamine, canasa) and when my doctor mentioned remicade I started to get really nervous. But after asking him for more testing, it was decided that remicade was a good choice for me. I literally requested 3 c diff tests before starting remicade...I was THAT paranoid and scared. Lol.

I know putting new drugs in our bodies sucks and is nerve wracking. Everything is going to be okay though :)

It's reassuring knowing I'm in good company! It is nerve wracking, especially the stuff about suppressing the immune system. I'm sitting here with a sore throat as I type this. I've been thinking about how remicade might eventually be the road I go down, but most days I only go 3-4 times a day, sometimes 2. I guess any inflammation at all needs to be taken care of, but it just seems like overkill.
Posted 9/30/2016 8:20 PM (GMT 0)

imagardener2 said...
Oh, and I just got a jury duty questionnaire in the mail. I did a search for this topic on here and, with some exceptions, it seemed like most people were able to get help from their gastroenterologist in order to get out of it. My always-helpful doctor's receptionist (and I say that with the utmost level of sarcasm) was just like, "I highly doubt he'll do that."

This kind of non-support from nursing staff would make me leave that GI and write letter to them why I did so. I fired my former primary MD because of lousy office staff. That doctor told my husband he understood why I left (I didn't write a letter) and my husband just left that office too because he did not trust them any more.

I have also written complimentary letters to doctors who have been great doctors.
A GI that does not understand how UC symptoms make serving on a jury impossible is not someone I can trust with my health.

I'm getting close to doing that. This one girl is just very unprofessional and unhelpful. She always answers the phone in this annoyed-sounding mutter and then acts like she doesn't know anything. I don't think my doctor would condone it, but if people have complained about her before, then maybe he does.
Posted 9/30/2016 8:24 PM (GMT 0)

soynomore said...
ya, i would definitely call bullsh!t on that receptionists behavior - you doc needs to know how his patients are being treated -

if he condones that sort of thing, time to move on -

It sucks when it's a good doctor with unhelpful staff. Honestly I find most doctors offices' staffs to be like that. It's very unfortunate and frustrating. If this keeps happening I'll bring it up to him.
Posted 9/30/2016 8:56 PM (GMT 0)
I called the Jury Duty office and told them my situation, they told me that if I could go to Work then I could survey on Jury Duty. At the same time she told me to call in each night for Jury duty because most of the cases were in the process of being settled out of court and they wouldn't need jurors; because I reported via phone each night now I'm good for another 3 years before my number could be called again.
Posted 9/30/2016 9:48 PM (GMT 0)

ks1905 said...
I called the Jury Duty office and told them my situation, they told me that if I could go to Work then I could survey on Jury Duty. At the same time she told me to call in each night for Jury duty because most of the cases were in the process of being settled out of court and they wouldn't need jurors; because I reported via phone each night now I'm good for another 3 years before my number could be called again.

I was worried that would happen. They don't understand that a lot of people work in casual environments where you can get up and go whenever you need to and not interrupt anything. It's very different from jury duty. My dad did it recently and described the place to me and said, "Yeah, you'd have a hard time with it. You stay in this small, quiet room for many hours where the bathroom is right there where everyone can hear you." No thank you. I'm crossing my fingers. Got my doctor's note, we'll see what happens.
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