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09-30-2010, 03:21 PM   #1
Cat-a-Tonic
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Pill Cam Results

I just got my pill cam results and I'm so upset. It came back totally normal, just like every other test I've had. I was really hoping this one would find something, but it's the same old story. I'm sick all the time, so why can't they find anything???

I was just really hoping to be diagnosed before it had been a year. I first got sick in October 2009, and today's Sept 30th... so much for that. I guess now I have to hope that I get diagnosed before it's been two years.

I've got an appointment with my GI on Monday so that we can discuss what to do next. There aren't many tests I haven't had done at this point, so I feel like I'm hitting a major dead end. I just don't know what to do from here and I'm so upset. All I want is a diagnosis so I can get some proper treatment for this illness! Is that really so much to ask?

Thanks everyone for listening. I don't know what I'd do without you guys.
09-30-2010, 03:32 PM   #2
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Wow Cat, I cannot believe it has been a year and nothing... not sure you have Crohns or not, could be IBS? I know it isnt what you want to hear. I cant remember if you bleed or not, cause IBS you dont. Sorry you are still with no answer, is there any test you havent tried yet?
09-30-2010, 03:45 PM   #3
Cat-a-Tonic
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Pen: I doubt I have IBS, because I respond well to pred. I don't bleed much, sometimes just a little blood on the toilet paper. I also have experienced dehydration & weight loss, which are not included in the IBS diagnostic guidelines, so I really doubt this is IBS. I also did try some IBS medication once, and it didn't do much of anything for me. It eased the cramping but not much else. In a flare, I get IBD-like symptoms like night sweats and joint pain, in addition to the d and nausea and pain and fatigue and all the usual symptoms. So I could swear that I've got IBD, but it's just being really difficult to pick up on tests!

The tests I've had so far are colonoscopy, endoscopy (both with biopsies), CT scan with contrast, pill cam, and many blood & stool tests. What other tests are there that I haven't had yet? I guess I haven't had MRI or the small bowel follow through (is that the one with x-rays?). I also know that I haven't had the IBD serology blood test. Is there anything else - ultrasound maybe? I'll ask my GI what he wants to do next.
09-30-2010, 03:58 PM   #4
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Ultra sounds dont show much, MRI could but I refuse to ever have one of those...yep too chicken, unless I go to Michigan where this is an open one but why? A small bowel follow through could be a good idea, if there are any fistulas, or looping it would show because colonscopies dont go that far. I have never had a pill cam either, again I dont need to but maybe have the IBD serology test could help again I didnt have that. Have you had your poop lab tested? It took me a full year of test, and then boom it was found. I know you like your Gi but what about a second opinion that is what I had to do. Sorry I am not much help, but I thought I was a bad case... you are worst Don't worry something has to show up. When is your next appt? Also is your doc a Gi or internist? Just wondering...
09-30-2010, 03:59 PM   #5
Rebecca85
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I doubt ultrasound would show anything, it's quite poor picture. In my case they did it first as it's the safest test, and they found that my innards looked like I had diarrhea when I didn't. Which led them to do a CT. So there doesn't seem to be much point in an ultrasound after everything else. Unless they want to check you out all over in case it's a different organ giving you grief. Sorry if that was a bit rambly, I'm getting tired!
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09-30-2010, 04:23 PM   #6
Cat-a-Tonic
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Pen: I'm not claustrophobic so I wouldn't have a problem with doing an MRI. I have had stool tests, I think they mostly were looking for parasites and bacterias because I had those tests done shortly after I first got ill. My doctor is a GI, not an internist, and I've got an appointment wih him on Monday. I will consider getting a second opinion, based on how my next appointment goes. I think he's a good doctor because he doesn't think this is IBS and he hasn't dismissed my symptoms as being all in my head or anything like that. But we'll see - if he gives up on me, I will have to move on to a new doc.

Rebecca: I think the CT scan already looked at all my organs to see if one of them was causing my problems - that was how they found a lesion on my liver, which is most likely benign and I'm not worried about it. Other than the liver thing, they didn't see anything on CT, so it sounds like ultrasound would be a step backwards from that.
09-30-2010, 04:26 PM   #7
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I'm so disappointed for you Cat ):
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09-30-2010, 04:33 PM   #8
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That's a bugger Cat............

Thinking about you mate....................

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09-30-2010, 04:36 PM   #9
Cat-a-Tonic
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Thanks Nicci and Dusty. You guys are so sweet.
09-30-2010, 04:48 PM   #10
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Not just the barium swallow but the barium enema as well. Neither test is fun but they can be very helpful. Both are done with x-rays. I'm surprised they didn't do those tests before doing a pill cam. MRIs are fun.
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09-30-2010, 05:15 PM   #11
Astra
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Aw Cat Im so sorry hun

but don't give up yet, there's always a sigmoidoscopy, this tests the lining in the intestines. And the small bowel follow thro, that's how they found mine. And barium enema showing the string sign. These are segments of strictures separated by normal bowels. There's blood tests too, white blood ones that show inflammation.
Also ask him about Chronic Granulomatous Disease (CGD) only cos you've mentioned your liver? Google this. A granuloma is a small nodule or lesion, and can be seen in Crohns.
And then there's a second opinion, you know the score! You've heard me rant about it often enough! This doc is not the only doc!
hang on in there! We're rooting for you, don't give up, get researching!
love lots xxxxx
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09-30-2010, 07:45 PM   #12
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Sorry Cat!! I know you just want a reason for your pain. I hope the Endocort works out well. Keep trying Cat!!! There is an answer for it!!
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09-30-2010, 09:35 PM   #13
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I can't remember if you mentioned this or not (I think you have, I think you were actually the one that mentioned it first) but has anyone tested your thyroid? Thyroid hormone imbalances can cause GI symptoms much like IBD and/or IBS.....

Just tickin' things off my checklist in my head, ruling things out.....

(((((((((((((((( Cat ))))))))))))))) whatever happens...jsut rmember it's NOT in your head.... who would want sh*t in their head???? lol (sorry, trying to get a l'il smile... lol)
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09-30-2010, 09:49 PM   #14
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It made me laugh! But you know you may have something there silver!
10-01-2010, 03:26 AM   #15
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Oh Cat. I was so sure this would be the test to give you the answers you so need. I'm sorry that that hasn't happened. I was so routing for you!
When I had the small bowel meal the radiologist said he wouldn't expect to see signs of crohns such as inflammation as I was on pred. I assume I would be similar with the meds you're on. I do hope your GI has some good advice as to what to do next
I know you are strong and won't give up but I also know the pain of hearing that another test is normal.
Take care
x
10-01-2010, 07:13 AM   #16
Cat-a-Tonic
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Joan: I've never heard of CGD, I will look into that and ask my GI about it on Monday. Thanks for the info!

Mark: The Entocort seems to be working, I think my appetite is a bit improved, although I've had headaches almost every day that I've been on the Entocort so far. Apparently headaches are a common side effect and they haven't been too horrible so far, so I'm just dealing with it for now.

Silver: Yes, I have been tested for thyroid issues, they did some sort of blood test for that, and I was told that came back normal. I have also been tested for Addison's disease/adrenal insufficiency, and that also came back on the low end of normal. And I KNOW it's not all in my head - I respond to pred, for one thing, so there's something going on that pred works on! Just have to figure out what!

Sam: Thanks, I knew you would understand. It's so incredibly frustrating! Yes, I think now that I'm on Entocort, I won't be having any tests for a little while or they'd just come back normal since Entocort is similar to pred and is healing any inflammation in my gut. I'm supposed to be on 3 months of Entocort so I guess that means no more tests until after the new year. I'll let you know what my GI says when I see him on Monday.
10-04-2010, 06:11 AM   #17
Cat-a-Tonic
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Just a quick update, I'm headed to my GI in a few hours to discuss my pill cam results and to see what the next step is. I'm assuming he won't want to do any more tests for awhile since I'm on a 3 month run of Entocort now - he doesn't like me to be on any meds when I have tests, so that any damage won't be masked or healed. (In other words, I've been suffering during every test and needlessly so, since everything has come back normal every time anyway.) Anyway, wish me luck at the doctor today! I'll update later today with what he says.
10-04-2010, 07:45 AM   #18
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Hope it goes well Cat and hope your GI has a good plan of action!
10-04-2010, 12:38 PM   #19
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Isn't Entocort active only in the intestines, not the whole body? So if it works, you must have an IBD, if it doesn't work it makes something else that responds to pred (like an adrenal problem) more likely. Just a thought.
10-04-2010, 01:21 PM   #20
Cat-a-Tonic
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Just got back from the GI. He has decided not to do any more tests for now. He thinks it's likely I've either got crohn's or microscopic colitis or some form of enteritis, but for now he wants to concentrate on getting me into remission rather than getting me a diagnosis. So he wants me to keep on the Entocort, I'll be on it for 3 months total. In another month or two he is going to also put me on Amitriptyline, which he says will help me achieve and maintain remission hopefully long-term. I'm not familiar with Amitriptyline so I posted a thread asking about it in the "treatment" board - if anyone has been on this drug or is familiar with it, please post me a reply in that thread! Thanks!

Rebecca: Yes, Entocort only affects the intestines, and I believe it only affects certain parts such as the terminal ileum and I think the ascending (?) colon as well. I have been on it for one week now and I do feel like it's working, my appetite is much improved and I haven't been having as much d. From what I've read, it takes 2 or 3 weeks to fully kick in, so I'm hoping to feel more relief when that does happen. Since the Entocort apparently is working, my GI made the decision to keep me going on it rather than subject me to more tests. I'm kind of relieved actually - although I still don't have a diagnosis, at least I don't have to drink any more prep or barium for awhile!
10-05-2010, 02:27 AM   #21
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Thanks for the update Cat. I hope the Entocort continues to do the job, keeping my fingers and toes crossed! Keep us posted!

Take care,
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10-05-2010, 11:59 AM   #22
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Thanks Dusty! The Entocort is apparently doing too good of a job today - I'm a bit constipated! I got constipated on pred too when I was on it, so I'm taking this as a definite sign that the Entocort is indeed working.
10-20-2010, 09:42 AM   #23
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Barium enema....that is funny...it doesn't stay in me long enough to get the pictures.....I warned them, they said they'd seen it all...that may be, but there are just something I like to do in private, like having stuff run down my legs...They gave me the enema and then expected me walk down the hallway...what a joke. After that experience, they listened to me...All I have to do now is drink the stuff and get the pictures that way.
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10-20-2010, 09:43 AM   #24
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Oh, and Cat, hope it goes well for you (I pushed the wrong button and posted before I could type this in). It can be so frustrating at time and only another Crohnie would understand.
10-20-2010, 04:24 PM   #25
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Thanks Karen. The Entocort is still working well and I've started the Amitriptyline (my GI prescribed it right away when I told him I've been having headaches every day on the Entocort, and the Amitriptyline has been treating the headaches and helping me sleep). I just hope I am actually able to maintain some sort of remission for a long time... don't want to have to go through any more tests for awhile! I just had an MRI today and it wasn't a fun experience - I already wrote a longer thread about this, but in a nutshell, I had a bad reaction to the IV contrast they injected me with. Not fun!
10-21-2010, 07:51 AM   #26
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Oh Cat, that's awful, I am so sorry. As I posted on another thread, my CD ws diagnosed when my appendix burst...and I am rather mild with just the fistula and D every now and then (lately more now than then). Bottom line, I haven't had to go through a lot of the testing that I am reading about here. Just the usual barium enema (only once thank goodness) barium drink (not pleasant but preferable to the enema). So I consider myself lucky. I so feel for the rest of you that are having these awful tests...and then to have a reaction...that just sucks!!!!
10-21-2010, 12:10 PM   #27
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The upper & lower GI barium x-rays are the only tests I think I haven't had done! I have had to drink barium, for my CT scan. I actually kind of liked it, much better than drinking prep. I've had so many tests now and still no results - colonoscopy, endoscopy (both with biopsies), CT scan, pill cam, MRI, and many many blood & stool tests. Out of all of them, I liked the endoscopy the best because I didn't have to drink any prep or barium or have any contrast pumped into my veins, and I got to sleep through the procedure thanks to some lovely drugs.

I have heard other stories like yours, of being diagnosed on the operating table. I really hope it doesn't come down to that for me, but then again, if it did happen, at least I would have a diagnosis. At least my GI takes my symptoms seriously and he isn't treating me like a head case or dismissing this as IBS. I know that both prednisone and Entocort work well for me, so I most likely do have IBD of some type, just still not sure exactly what.
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