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Doctors don't believe I am bleeding

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Crohn's Disease
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Posted 2/1/2008 2:40 PM (GMT 0)
I have just had the worst hospital experience ever. I am anemic. I ended up going to the emergency room because my resting heart rate is around 130. When I stand up, it jumps to 150 or 160. I was also dehydrated, even though I have been drinking plenty of fluids. I have been having lots of rectal bleeding. I was admitted to the hospital, and the GI doctor performed a colonoscopy, but could find no active sites of bleeding. So now he and my PCP pretty much think I am telling stories about my bleeding. They discharged me from the hospital. I am still anemic, bleeding, and my heart rate is down to only around 115 resting. What am I supposed to do? I actually questioned whether or not I am crazy and just imagining I am bleeding. My PCP offered for me to see a psychiatrist. When I asked her if I wasn't bleeding, then why was I so anemic. She actually asked me if I was having anal sex (I'm not, I don't think anyone with a history of distal colitis would want to do this), or if I was making myself throw up. They don't seem to care to find out where all the blood is coming from. I actually made my boyfriend look in the toilet after I went to the bathroom just to make sure I wasn't seeing things. He said there was definitely blood there (what a keeper, lol). Anyway, what am I supposed to do? I am so unbelievably frustrated. They also took me off all my meds and said I don't have inflammatory bowel disease.
Posted 2/1/2008 3:48 PM (GMT 0)
This doesn't make sense. Anemia is easily diagnosed by a simple blood test showing hemoglobin and hematocrit levels. What were your readings? If they were low, the diagnosis would have been clear and irrefutable, no matter what you reported re blood in your stools.

Posted 2/1/2008 4:02 PM (GMT 0)
If it were me, I'd find another doctor and get a second opinion.
Posted 2/1/2008 4:09 PM (GMT 0)
I'd ask for a copy of your lab results. Then get yourself to the ER next time your heart rate is 150 at rest. And give them a stool sample so they can see it with their own eyes and ask them what they think of that.
Posted 2/1/2008 4:19 PM (GMT 0)

In the future, I would watch the "maybe I'm just crazy" statements to doctors.  Some doctors, if they can't find a clear reason for symptoms, give up and decide it's all in the patient's head.  Saying it, even if that's the way they're making you feel, gives them an easy out.  I'm no doctor, but I'm pretty sure that mental illness does not cause rectal bleeding.  So obviously something else is wrong.

The doctor's statements don't make sense.  They say that they can't find a source for the bleeding and suggest that it's being caused by anal sex.  If that were the case, wouldn't they have found trauma and a source for the bleeding?  Makes no sense.  Time to find new doctors.

Posted 2/1/2008 4:42 PM (GMT 0)
How far up does a colonoscopy go? The thing is- if you have Crohn's, your small interstine may be bleeding and I think (not sure, though) that the colonoscopy only goes up to the terminal ileum. Maybe you need other tests- an upper GI with small bowel follow through to detect the area that's bleeding?

What's important now is for you to keep your head clear. Don't get caught up in the emotion of it all. Write down the facts of your symptoms and report them to a doctor. Those can't be disputed or dismissed (or shouldn't be). Maybe think of some questions and write those down to ask, too. You can be your own best advocate! (But- remember to stay calm and rational and not get overwhelmed by all the uncertainty and emotion.)

Good luck!
Posted 2/1/2008 5:20 PM (GMT 0)
I'd see another doctor ASAP. one who will listen to you and take you seriously.

Also, are you taking your meds even though they told you not to? You can't stop pred cold turkey, so if you stopped it without a taper you need to get back on it ASAP.
Posted 2/1/2008 6:40 PM (GMT 0)
Do you have Rectal or deeper bleeding. Mine actually started about in Dec. of 1986, but because it was apparently far up in the intestines no one ( not even me really!) believed or understood that.
When a fissure opened again in 1991-early 1992, I Showed my mom the blood drenched tissues. Then I took the bloody (literally) shorts to the closest doctor. As you all know, I got the initial UC dx a few weeks later. They didn't look high enough though, in the end.
Is this similar to anything you have had recently?

Matthew
Posted 2/1/2008 6:50 PM (GMT 0)
In October, 2006, I went to the ER because I had mild chest pain and my heart was racing...no GI problems at all. They found that I was very anemic at 8 (hemoglobin, or hematocrit...I always mix those up) I was hospitalized and had a colonoscopy, endoscopy and barium SBt, all of which were negative...no source found for the bleeding. No one accused me of being crazy...lab tests which show anemia don't come from psychiatric causes! I was given iron by IV, got better and went home. It took until June, 2007 before I got sick again with anemia, high fevers, throat ulcers, etc. In Sept. 2007, I had the camera swallow test which showed a bleeding ulcer in my small intestine, and a follow up colonoscopy showed Crohn's in my ileum. My point of sharing my story is that it took a year from my first anemia episode for me to have a Crohn's diagnosis...others on this forum say it took them even longer before all the pieces of the puzzle became evident. You are obviously not crazy if you see blood and are anemic. You absolutely need doctors who believe you. Go to ccfa.org. You can get help to find a physician referral with someone who is familiar with IBD. Good luck and let us know how you are doing.
Posted 2/1/2008 8:22 PM (GMT 0)
Yikes, how awful for you! When I had my GI bleed I was still pooping tons of blood in the ER. So maybe that's why they were believing. It never even occured to me that they would question it though, especially if the blood tests are showing anemia. Guess I was lucky he found the bleeding ulcer during the scope (maybe yours is higher up then what the scope can see?)!

I'd get a second opinion too. You'd think the "it's in your head" crap would end once your diagnosed!
Posted 2/1/2008 8:39 PM (GMT 0)
I think you should bring them evidence. Poop into a tupperware container and bring it to the ER. Serves them right.
Posted 2/1/2008 9:04 PM (GMT 0)
Each time I got the ER about something Crohn's related, they ask if I've been bleeding. Then the next thing they're doing is sticking a finger up my bottom. They then put a sample on some type of paper. They tell me that is will show if there is blood present or not. Seems like a simple test then they don't have to take my word for it :)
Posted 2/2/2008 12:39 AM (GMT 0)
Oh, jb, I'm so sorry that has happened to you. I can't believe that they would say that of you, of all people. After all, you've been in the system since you were so young... *and* you're pre-med.

I agree, a stool sample might be a good idea. But I'm so sorry that it's necessary, and that you've been so destabilised that you're starting to question your own sanity. That's just wrong.

Hang in there *hug*

I.
Posted 2/2/2008 12:49 AM (GMT 0)
12 years ago when i was 12 I went a whole year without a diagnosis. They put me in a mental hosptial for anorexia since they couldnt find anything wrong physicaly. Well after three weeks in there my dad said to them he does not belong here but in a hospital. So he signed a waiver saying if i die he is responsible and would throw him in prison. My dad picked me up and rushed me to the best childrens hospital on the west coast not to from our house a;; while crying in pain and throwing up all over the back seat.

I weighed 42 Pounds at that time and within 24 hours they scoped me and diagnosed me with crohns.

They said if my dad did not do what he did and take that risk I would have died within probably 72 hours from lack of fluids and nutrition.

Get a second opinion and go to a new hospital! Trust me!
Posted 2/2/2008 12:57 AM (GMT 0)
Wow, Maverick. That's awful - easily one of the worst diagnosis stories I've heard for a while.

Welcome,

I.
Posted 2/2/2008 1:01 AM (GMT 0)
From my understanding the higher up the bleeding, the darker the blood...regardless I'd be going to see another dr and a different hospital ER.

:)
Posted 2/2/2008 1:32 AM (GMT 0)
Sorry that you are having such a tough time. Definitely find a new MD. Good luck.

Jill
Posted 2/2/2008 2:09 AM (GMT 0)
Ok wait... we have a Jillybean1887 AND a Jellybean1887?? Why is 1887 so popular? I am amazed that two names were so close and so random lol.
Posted 2/2/2008 2:19 AM (GMT 0)
I noticed that too, weird eh???

:)
Posted 2/2/2008 10:56 AM (GMT 0)
blood coloration also depends on if its arterial VS venous... arterial tends to be much brighter red and full of oxygen, while venous blood after delivering it oxygen load tends to be more maroon colored.
Posted 2/2/2008 2:06 PM (GMT 0)
You doc is an moron get another doc ASAP how cruel of her to talk to you like that. You could have bleed higher up than a scope can go ,DUH dont she know that.
Posted 2/2/2008 3:50 PM (GMT 0)
If they don't believe their own evidence THEY collected, they are grossly incompetent! I'm thinking this ER has had bad expeirences(sic) with our kind (IE: LAWSUITS) that they dislike Crohn's patients. Sugarmarie is 300% right. Find help ESLSEWHERE... ASAP.

Sincerely,
Matthew
Posted 2/2/2008 6:48 PM (GMT 0)
I agree with everyone else -see another doctor ASAP (Try to find one who specializes in IBD). There must be a reason for your anemia and it's not going to be found by a psychiatrist! I'm very concerned that they stopped your medications.
Please let us know how you're doing.

Bev
Posted 2/2/2008 7:03 PM (GMT 0)
I was also wondering whether you could have pernicious anemia - and require vitamin B-12 injections. My mother had this disease, and had many of your symptoms, but never had any blood in her stool. It could be that you're missing the intrisic factor in your stomach to absorb vitamin B-12. Without being able to absorb B-12, you'll have many of the symptoms you're describing like rapid heart rate, loss of appetite, diarrhea and fatigue.
Posted 2/2/2008 8:01 PM (GMT 0)
Jellybean MikeB raised a great point and I wondered if you could respond. How do you know you have anemia? What do your blood tests indicate? I'm sorry you are having such a difficult time. Have you been checked for adrenal and thyroid function?
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