Am I crazy? Random thoughts and questions

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Regular Member

Date Joined Nov 2009
Total Posts : 46
   Posted 9/5/2010 12:05 PM (GMT -6)   
Hi, It's been awhile since I posted. My main reason for posting is I wanted to ask a question about Gastrointerologist. I have had 3 since being diagnosed 11 years ago with Crohn's. This last one that I am seeing has never put me on the table to examine me. The others have pushed on my tummy and listened for "sounds", but this one has me sit in a chair opposite him and just talks. He has only ran one test on me, a small bowl follow through (I think that is what it is called). He is finally ordering a colonoscopy because on my last visit I told him I have having blood in my stool (more so than usual). I was on Humira for 6 months before my insurance plan changed and my deductible changed and now I can't afford it. He is trying to figure out what medicine to put me on (that I can afford).
Right now I am achy all over (mostly in my back)- My symptoms have changed since first being diagnosed with this disease. I still get the big D and some cramping, but mostly now I have the trapped gas (which is the worst)- constipation and the blood in the stool. The blood could very well be from hemorrhoids, but I don't know. I'm telling you, nothing is consistent with me and this I'm typing this I am thinking "well this symptom happens sometimes, but not always and this symptom has happened but not since" makes it really hard to try and explain things.
When I had the small bowl follow through test, the doc that did it and the nurse both told me that the part of the intestine did not look good...but my doc just said "well ok, I don't think it's active, I think you aren't eating correctly and that is what is causing problems".."let's start you on Humira".
It just didn't make sense to me, but then again I didn't want surgery and I said ok and my symptoms haven't gotten worse. I'm just afraid that something major will happen one day.

Thanks for listening, sometimes it just helps getting things off your chest with people that "get it"...

Veteran Member

Date Joined Feb 2010
Total Posts : 925
   Posted 9/5/2010 4:51 PM (GMT -6)   
got it!

Regular Member

Date Joined Apr 2006
Total Posts : 192
   Posted 9/5/2010 5:01 PM (GMT -6)   
def. understand your frustration. Listen to your body:) you aren't alone.

Veteran Member

Date Joined May 2010
Total Posts : 8375
   Posted 9/5/2010 8:24 PM (GMT -6)   
I think that you're seeing the last GI I had. He just wouldn't do anything. My PCP got so frustrated that she strongly encouraged me to find a new doc, especially when I had a hemoglobin of 9 and no iron stores left at all. Ugh.

As much as we can, I think we need to be proactive with our doctors, communicate as clearly as possible. I bring my DH with me now when I'm going to need to ask a lot of questions. He listens, and keeps tab on the list of questions and asks his own. I always need that kind of thoroughness - I'm not likely to insist on it if I'm alone in the room with the DR.
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 9/6/2010 2:20 AM (GMT -6)   
I would go for a second opinion if there's another GI in your area. For the radiologist and xray tech to comment that things don't look good, then your doctor to tell you they don't think your disease is active doesn't make sense at all. Also, your doctor should be pushing on your stomach and listening to it, as well as listening to your account of how things have been going.

Regular Member

Date Joined Nov 2009
Total Posts : 46
   Posted 9/6/2010 7:16 PM (GMT -6)   
Thanks, I'm glad others see it that way, I thought I was going crazy. Today is not a good day, I suppose because I am not on any med's now. He gave me a prescription for Imuran, but I can't get it filled until tomorrow. I just feel bad, aching all over. My stomach isn't cramping and I don't have diarrhea but it almost feels like it's burning...with occasional pain. I just hope I can get through this week and Monday I'll have that colonoscopy. Thanks everyone for your comments.

Veteran Member

Date Joined Jan 2010
Total Posts : 8424
   Posted 9/6/2010 9:48 PM (GMT -6)   
I need to go to bed now, but I can relate to quite a bit of this post. I've had Crohn's for 10 years and my symptoms changed (about 15 months ago) from chronic diarrhoea without pain to less frequent diarrhoea, with more pain and bloating. It often feels like food is clogging up my intestines.

I'm telling you, nothing is consistent with me and this I'm typing this I am thinking "well this symptom happens sometimes, but not always and this symptom has happened but not since" makes it really hard to try and explain things.

Yeah, I get that too. There's a few constants, but not very many. My symptoms have chopped and changed, or waxed and waned, by a fair amount. I'm not exactly the same as I was a few months ago, nor a year ago.

Anyway, good luck with the colonoscopy. It doesn't sound like it will be a clean one unfortunately, but it's better to know what's going on than not to know. Well, usually :-/

Regular Member

Date Joined Nov 2009
Total Posts : 46
   Posted 9/7/2010 8:00 AM (GMT -6)   
I agree it probably won't be a clean reading. Last night I got worse, after going to bed I started getting bad stomach cramps and threw up all night long. I had to take today off and am getting ready to call the doctor in a few minutes to see if he wants me to go to the hospital or just wait it out.
I feel like I'm whining and being a baby, but I think everyone understands- I haven't been this bad in awhile.

Thanks again for listening.
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