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Crohn's Disease
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Posted 3/25/2010 6:48 PM (GMT 0)
Well, I barely finished my prep last night, but I did...and while I was going, quarter-sized pieces of (what looked like) mucus with blood vessels attached were consistently coming through. Now that I look at the pictures from my scope, they look exactly like the walls of my intestines.
BUT, the doctor said he didn't see a thing. Nothing. I'm so depressed and frustrated because I know I'm in pain and that there is blood and mucus in my bowel movements, but none of these tests are saying what is wrong.
One of my doctors went as far to say that my symptoms are from my anxiety. How can anxiety make you have bloody bowel movements?!
They're making me feel like I'm crazy.
The only reason they questioned my Crohn's diagnosis was that none of the meds worked for me- they all made me feel much worse. AND, I get dehydrated so easily. I can honestly have D only twice in a day and be dehydrated enough to need to go to the hospital (that's what happened this weekend.)

I didn't know who else to rant to. It's so nice to have you guys because you really do understand.
Posted 3/25/2010 7:56 PM (GMT 0)

Oh yes that ever so patronizing "it's all in your head" and you just want to beat the tar out of them, but you feel to crummie to do it.  (and it is ever so slightly illegal)  What I finally did was say fine get me in treatment, my psych actually really advocated well for me, because I was so sick during the hours that I was in his office.  He flat out told them something is really physically wrong with this kid (he is 73, so I will give him that), and he put this in a nice way but the essesence is if you do not keep testing her I am coming after you (he was a big admin at the hospital before his retirement and so he still had some pull).

One of the things that worked for me was getting the pill camera done and an 18 foot endoscopy (not the normal 3 foot EGD), have you had those done?

Posted 3/25/2010 8:05 PM (GMT 0)
I tried the pill camera when I was first diagnosed. It got "stuck" and I had to get a colonoscopy to get it out. My doctor jokes that he was afraid he was going to have to put his feet on my back to pull it out :) It ended up opening up my stricture and i was in remission for five years. Now that I have several strictures I wonder if I should swallow several cameras :)
Posted 3/25/2010 8:18 PM (GMT 0)
LOL sissy, I would say use a patency capsule first. Second, you can have balloon scopes done without getting things stuck.
Posted 3/25/2010 9:24 PM (GMT 0)
The scope doesn't go all the way through your intestines. It only goes through the colon and a little bit of intestines, if the doc even went that far.
Your problem could be higher up. Have you had an "upper gi small bowel follow through"? It's when you drink the barium (white chalky stuff) and a radiologist takes special xrays of your bowels.
If you are getting dehydrated, you might consider drinking special drinks that keep your electrolytes up. Ask your pharmacist.
Try some chamomile tea with org. honey or decaf green tea with honey.

Best wishes.
Posted 3/25/2010 9:24 PM (GMT 0)
No pill cam yet. The only person who is interested in even doing one is my primary care doctor. I just want to keep crying. I've been sick for nearly two years without any relief. I can't even go to college...I feel like I'm having my youth stolen from me.
Sigh.
Posted 3/25/2010 9:42 PM (GMT 0)
Keep on your doctors about these tests. You have to get aggressive with them, I know it is kinda hard but its you that has to take the pain at the end of the day not him. You will figure it out don't worry. There is a million different combos of drugs, diets, etc. I felt the same way at one point and just got tired of all the shet and took control of it myself. You'll get it right have patience and don't worry:)
Posted 3/25/2010 10:14 PM (GMT 0)
"Are you refusing to treat" is a powerful question, along with "are you doing due diligence?"
Because a colonscopy is not enough...
Posted 3/25/2010 10:15 PM (GMT 0)
I've had several small bowel follow throughs, cat scans, etc. Everything just comes up fine. I'm frustrated. I feel like doctors are just so easy to give up on me.
Posted 3/25/2010 10:23 PM (GMT 0)
But those tests are not actually laying eyes on your ENTIRE intestinal tract. I would really think about getting eyes on your ENTIRE intestinal tract by pill camera, or by long endoscopy. My primary disease sites where hiding in my small intestine.
Posted 3/26/2010 5:51 AM (GMT 0)
Doctors can be really frustrating, sometimes, Miss... (Mind if I call you Miss? //^_^\\')... I agree with what the rest of the board members are saying... Don't give up... this will get figured out...

In the mean time... What have you been doing about your pain? Because I have a few suggestions if you need them... (It's likely the methods won't make that much of a dent... but it can take the edge off...)...

And try not to feel too discouraged about college... You're really sick right now, so it's understandable... (I know it's hard missing out... I've felt the same way a lot of times)... The great thing is... is that college isn't going anywhere... It'll still be here.... There are people that go to college in their 30s and 40s.... *And even older than that* You'll be able to get back on track as soon as you're feeling well...

Oh... And do you visit the depression or anxiety board on the forum? Might be helpful for you to check that out.... Stress has a tendency to make bowel problems worse... So, even though it'd probably be impossible to totally get rid of that frustration and depression, you need to try and manage it as best as you can.... *Easier said than done I know... it's hard to find even a ray of happiness when you're in pain... but it can be done* If you need some tips, I can help ya out...
Posted 3/26/2010 7:18 PM (GMT 0)
I really do want to have a pill cam done. My GI is going to call me next week, and I'll ask for one then.
As for my pain...My doctor prescribed me some vicodin, which works wonderfully. However, I only take it if my pain is next to (what I call) E.R. level.

I just don't understand how I could be having so much mucus and blood and blood vessels coming out during the prep- and then have them say that they saw nothing. I'm so confused.
Also, my SED rate is low at the moment. Is it heard of to have a flare with a normal SED rate (I took the blood test for that after I had been on a liquid diet for nearly a week though.)

I need to relax. My therapist and I are working on that right now. It's just really hard for me mentally and I don't know how to deal with it.
Posted 3/26/2010 8:05 PM (GMT 0)
Yeah the more you relax, you will calm your body. Go have a drink, get your ipod, and chill out in the sun for a while :)
Posted 3/26/2010 9:30 PM (GMT 0)
Sorry the docs are giving you a run around. It is terribly frustrating to be in so much pain and have your symptoms and a normal scope. Crohn's can be patchy. The first time I had a scope, I had been sick and the CT scan showed inflammation, so they scoped me. Well, the scope was negative. Back in Jan 09 I got lucky, my scope showed inflammation, so they put me on meds. I also have very bad IBS which can be just as bad as the inflammation.
Have you had the IBD serological tests done for crohn's? They use the tests more in your age group. It would be interesting to see what your results are. They are expensive tests though and not all insurances cover them.
Good luck, feel better and keep us posted.
Posted 3/27/2010 5:59 PM (GMT 0)
My serology came back negative. My doctor says he doesn't really trust those though because they give a lot of false negatives. *shrug* If he doesn't trust it then why did he order it? I think it's because he knows that I like being a human pin cushion. *sarcasm*
Posted 3/27/2010 6:03 PM (GMT 0)
Have you tried CT enterography? It's a lot more specific than a regular CT scan. Mine came up with all sorts of things that other tests missed.
Posted 3/27/2010 6:27 PM (GMT 0)
I'm having an MRI with sedation and contrast done later in April. My GI doesn't want me to have any more CT scans/x-rays because he said that I've been exposed to way too much radiation for someone my age (not to mention nearly every female in my family *father's side* has died from colon cancer).
I'm willing to have it done if it means getting an answer. I'll ask my PCP about it.
Posted 3/27/2010 8:11 PM (GMT 0)
I'd wait and see what the MRI shows and use it as a last resort. They may have similar results, but an MRI is far more expensive than a CT enterography is, which is why I think it is probably done more often. Not 100% sure though.
Posted 3/27/2010 9:07 PM (GMT 0)
I would say that my disease did not (and still does not) show up on CT or MRI, it was only when they actually visualized my entire GI tract (not just a colonscopy, but a pill camera and an 18 foot endocopy) that they found (the severest parts of) my disease.
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