I'm Back & I'm Confused....

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hukleberrie
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   Posted 11/7/2008 5:55 AM (GMT -7)   
Well, I have posted on here before. I had lots of problems, told by many doctors that I had some form of IBD. Then I had my second c-scope after being on prednisone for a couple months & it was clear so my GI said that I for sure do NOT have crohn's. I began looking for other options for the reasons of my frequent BMs & other issues.

I began having vomiting problems in August. Just once in a while. I kinda blew it off until it was very regular, every week and half or so. Being that I have vomited more in the last couple months than probably my entire life (I am not a puker), I decided to make an appt. My doctor who is so caring & sweet to me, feels that the vomiting is tied to my bowel issues & that it is probably crohn's. He said although other doctors (actually just my GI is the only one who thinks I do NOT have crohn's, all the other docs I have seen seem to lean the other way), he does. He told me to take the azulfidine if I have problems with the vomiting a couple days in a row. Or bleeding or losing weight as well of course.

I am a little confused though. Although it makes sense to me now, I really didn't think I had crohn's at all after talking to the GI the last couple times. I was pretty happy about that, as you all understand like on other. And now, I am like, oh, crap. I am just a little bummed & confused about how it could be, then not be, then be crohn's..... It's exhausting. shakehead
Live for today, for tomorrow you might just get hit by a semi.


Equestrian Mom
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   Posted 11/7/2008 6:45 AM (GMT -7)   
sorry to hear you are having such problems. I can definately relate to the vomiting thing:( I had had Crohn's for more then 10 years when out of the blue I started vomiting...food cannot travel through so it comes back up(is it the same food that has caused each episode?)...did your doc schedule any tests to see what is causing it? Maybe it is time to find another GI for a second opinion.

Keep your chin up and stay possitive. Let us know how things progress.

hukleberrie
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Date Joined Jan 2008
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   Posted 11/7/2008 7:14 AM (GMT -7)   
No, it's not the same food all the time. It's usually at night as well. Sometimes I wake up from sleeping to run to the bathroom to get sick. I have been okay though lately.

No tests scheduled. I don't think I am in a flare right now...

Not really ready to see another GI. I'm tired of doctors. Just trying to ignore it right now...
Live for today, for tomorrow you might just get hit by a semi.


gachrons
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   Posted 11/8/2008 5:29 AM (GMT -7)   
Hi Are you having pain with your V? Perhaps you needed more test done to confirm your DX. Have you had a X-ray done? Some people find it does not show up on a scope but V can be a sign of a blockage .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


hukleberrie
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   Posted 11/8/2008 5:57 AM (GMT -7)   
I am having pain, but normal pain, I guess. I have EDS (a connect tissue genetic disorder) as well, so I attribute a lot of my paint to that. My doc did feel my belly, and I do not think I a blockage because I am having BMs every day still.

How does it not show up on a scope? I just don't understand how there could be confusion. GI says IBS, GP says CD. ????
Live for today, for tomorrow you might just get hit by a semi.


AlwaysRosie
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   Posted 11/8/2008 8:15 AM (GMT -7)   
Huckleberrie,

If you were on prednisone for a couple of months and THEN did the c-scope . . . wouldn't that explain why the doctor didn't see any signs of Crohn's. The pred was doing its job. I'm really new to all of this . . . but it sounds logical to me.

I have also had docs dx and then un-dx my Lupus. I half suspect that sometimes they are protecting my medical chart and records. It seems they might include a proper dx when they need to use certain meds . . . but, at any rate, I've seen the same dx & un-dxing happen frequently at the Lupus forum and here. So it is really a common issue.

I hope they figure out what is causing your v. Keep us posted.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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hukleberrie
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Date Joined Jan 2008
Total Posts : 491
   Posted 11/8/2008 9:02 AM (GMT -7)   
The way the GI talked is like the crohn's would show in the tissue somehow, even with the predinsone I was still on. Is that incorrect?
Live for today, for tomorrow you might just get hit by a semi.


Ides
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   Posted 11/8/2008 7:44 PM (GMT -7)   
If the biopsy taken during the scope following the prednisone treatment came from an area previously unaffected by the CD, it would not show signs of the disease. Intestinal mucosa previously inflamed from CD will usually show some type of scarring or signs of previous problems. However, that is not written in stone. Have you ever gotten the pathology reports from your two colonoscopies? It would be interesting to see what was written about the tissue samples.

And by the way, the GI DID take biopsies during the second scope, didn't he? Because if he was just visualizing the intestinal mucosa and it "looked" good, that does not rule out microscopic evidence of current or past disease.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


pb4
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   Posted 11/8/2008 10:08 PM (GMT -7)   
Ulcerative colitis could be the culprit, it's another form of inflammatory bowel disease (IBD)...with basically identical symptoms, only differences being that UC only affects the colon/rectom, where as CD can affect the entire GI tract from the mouth to the anus...

With CD the inflammation can go through the many layers of the intestinal lining, with UC inflammation is limited to the surface only....that's why fistulas are associated with crohn's (CD) and not with UC....also via colonoscopy, with crohn's there are skipped patterns of inflammation (healthy tissues in between inflammed tissue) with UC the entire area will be inflammed.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


gachrons
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   Posted 11/9/2008 6:46 AM (GMT -7)   
Hi Most CD is in the small intestine and that would not show up on a scope unless it is located in the TI area. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 11/9/2008 7:13 AM (GMT -7)   
Well, the first scope Oct 07 showed a few very small ulcers, biopsy showed focal active colitis with mild crypt distortion. Had a small bowel follow through which had clumping in the lower right q, in the region of the cecum, was told by the radiologist it was IBD, but not sure what kind. I was put on prednisone & continued on azulfidine until my second scope in April 08 was clear. She took a bunch of deep samples (I bled so badly for weeks after) and all were clear on biopsy. She was surprised, she had thought I had crohn's as well until the second scope. Told it was IBS & since I was able to keep my weight up over the summer (although I had to eat tons to do that, I was able to) so she said at my appt. in September it's for sure IBS & not CD, and I don't need to see her again. She told me the sbft was wrong (although I remember the test very clearly & I can't understand how a mistake was made). My pcp has been quiet for a while about it, I had been wondering for a while what he thought...

I did have another doctor at the ER I went to in March said that after he looked at my small bowel follow through files that he is pretty sure it was crohn's. The nurse did as well. I was pretty happy though when in April my GI said that I did NOT have CD. When I saw her in September, she said there was NO way I had crohn's.

So then the vomiting started in August. I ignored it for a while & finally went to my pcp, who said it must be related to my bowel issue, which would lead him to believe I had crohn's since it can affect the entire GI tract.

I just don't understand why it's so hard to figure out. I am tired of it all. It's exhausting.
Live for today, for tomorrow you might just get hit by a semi.


Ides
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   Posted 11/9/2008 4:08 PM (GMT -7)   
How tied are you to this GI? You need a second opinion because it seems everyone BUT the GI believes you have inflammatory bowel disease of some type. That includes me. Your first biopsy results are consistent with IBD as was your SBFT. The cause of the vomiting needs to be addressed. Your PCP sounds like he is on your side. Will he refer you to a different GI?
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


hukleberrie
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Date Joined Jan 2008
Total Posts : 491
   Posted 11/9/2008 4:26 PM (GMT -7)   
Are you serious? Another @#$!% doctor? No, I would rather just trust in my pcp at this point. I am tired of being poked & prodded. It's been a year & a half of all this & I just want to forget it.

See, I am doing okay. I am weak & tired a lot, I have nausea from time to time, and vomiting, but the vomiting is only once in a while. Usually at night. But the last 3 weeks have been clear of vomiting, just the fatigue & nausea/heartburn. I am not sick enough to deal with more tests. I have had so many already.

My current thought is just to try to ignore & deal with this as best I can. If I get super sick again, then I am sure my pcp will direct me in the right path, I trust him very much.

I don't think there is much need for more tests.
Live for today, for tomorrow you might just get hit by a semi.


Ides
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   Posted 11/9/2008 4:33 PM (GMT -7)   
I was serious. However, it is your choice. I'm glad you have a good PCP that is looking out for you. I hope you remain well.
 
Of a personal note: My feelings are a bit hurt by your last response to me. I guess I should have taken your initial post as merely a rant and not looking for suggestions or help in your diagnostic limbo.


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 

Post Edited (Ides) : 11/9/2008 4:38:45 PM (GMT-7)


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 11/9/2008 5:34 PM (GMT -7)   
Oh, please don't take that post the wrong way? It was sarcastic at the medical community, not you. I have not much faith anymore.

I apologize if my post came across wrong. I guess I am bitter.
Live for today, for tomorrow you might just get hit by a semi.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 11/9/2008 5:40 PM (GMT -7)   
Is a little vomiting once in a while something to worry about?
Live for today, for tomorrow you might just get hit by a semi.


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 11/10/2008 5:36 PM (GMT -7)   
hukleberrie,
Given a day to reflect, I admit I was probably overly sensitive yesterday [I had toe surgery today and probably had some underlying anxiety about it.] No offense intended on my part and none taken.

I understand wanting to ignore a problem in hopes it will go away. U understand losing faith in the system and bitterness and intense frustration. It was 25+ years after my first complaints to a doctor about diarrhea, abdominal pain, and a 25 pound weight loss in a month that I was finally diagnosed. I was able to ignore the problems for long periods of time because I periodically had to be on steroids for my asthma which also kept the CD under control. Then things spiraled out of control and I could no longer ignore it.

Vomiting is your body telling you that something is wrong. It could be something as simple as a medication issue. It also could be a signal of a different problem such as gastroesophageal reflex disease. Do you get heartburn? Whatever, the cause you should get it investigated.

Since you trust your PCP and have a good rapport, start there - only if you want to. But do remember, IF you do have Crohn's, leaving it intreated can cause problems down the road. I certainly hope you do not have CD. Here's hoping there is a simple and easily treatable solution to your current medical issues.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


hukleberrie
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Date Joined Jan 2008
Total Posts : 491
   Posted 11/10/2008 5:55 PM (GMT -7)   
Thank you for your reply. I was probably overly sensitive, as well. I have not been feeling well, another UTI.

You are so right, I do have to take control of my care.

I have been having "epi gastric pain" as my pcp calls it, and some heartburn as well. I did have an EGD the same time as my original c-scope back in October of last year. All it found was mild chronic gastritis, which I was told was a normal finding.

The last time I got sick, it was so painful & thick & pink, it was nasty. My doctor seemed to think there is probably inflammation somewhere, maybe an ulcer, causing me to vomit. I got the feeling it's not a huge concern unless it happens repeatedly for a few days in a row.

The vomiting didn't start until spring & it was rare. I ignored it. Then in August, when I had another bought of bleeding & weight loss, I began vomiting again. I was taking azulfidine for a little while which seemed to help my bowels, so I was feeling better. I have also been on elavil to slow things down, which has helped. I now go only 1-2 times a day, a huge improvement.

I haven't gotten sick in a while, probably 3 weeks. So I am kinda just trying to put it out of my head by thinking that maybe it was just a problem that has somehow rectified itself or something. If it creeps up again, I will definitely push it with my doctor.

Anyway, I do appreciate your guidance as I have no idea what I am doing. I know so many here deal with so much & sometimes I wonder about how I can even post or complain about my little tiny issues....

What exactly do you mean by if you leave it untreated it can cause problems down the road...? Do you have to do constant treatment?
Live for today, for tomorrow you might just get hit by a semi.


Joie1
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Date Joined Oct 2008
Total Posts : 376
   Posted 11/11/2008 2:04 AM (GMT -7)   
This is going to sound weird...but do you have your gallbladder? If you're taking stuff for pain, its likely you could be having gallstones (caused tons of heartburn like symptoms that would make me vomit) and not feeling the pain from them. That can be really dangerous, mine got so out of hand it became pancreatitis. You might consider that avenue.

Also, you should go see the blasted doctors...evil vampires that they are. Your GI could be viewing areas that are unaffected. My CD never showed up for over five years and five years ago, they tested me three times at two hospitals over three months for it. If you're not in an active flare apparently, then it can be really hard to see I've heard/read. If you have Crohns, you need to be on continuous meds if it IS Crohns. Not taking the meds leads to flare-ups and/or scar tissue that cause VERY serious problems that can result in the need for ostomy or multiple major surgeries. Beyond that, just getting control of the disease is important. Leaving it to do what it will because you feel okay could lead to a very very bad issue later on. Screw that GI and get a new one who might try taking you off all sorts of meds which will make you sicker but will aid in showing anything if you flare. It'll suck but a definite diagnosis would be worth it wouldn't it?
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


hukleberrie
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Date Joined Jan 2008
Total Posts : 491
   Posted 11/11/2008 7:26 AM (GMT -7)   
I still have my gallbladder. I had a CT last year & MRI, I believe they would have shown gallstones, but maybe it's something new. I have never had a hida scan or anything like that.

I do take painkillers, lortab 7.5s. They don't get rid of my pain by no means, but make it easier for me to be normal at least.

BTW, I am off all meds right now except Lortab & Amitryptyline. (& Cipro for UTI). I also take Digestive Health & Emergen-C & Glucosamine/condroitin. I was told by my doctor to take azulfidine as needed, but haven't needed it for about 2 months.

Interesting.... so just cuz you are tested & it's negative, that doesn't mean that you still don't have cd? You had negative biopsies from colonoscopies as well?

I am not sure if I want to be on constant medication. Is there anyone on this board that doesn't take maintenance drugs?
Live for today, for tomorrow you might just get hit by a semi.


Nanners
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   Posted 11/11/2008 8:00 AM (GMT -7)   
Hukleberrie I have had Crohns Disease now for over 33 years. The reason people need to take some type of maintainence med is because while you might be feeling fairly well, the Crohns is still in there doing its damage. Causing inflammation that might heal and then cause scar tissue. I had two significant flares in my first 4 years with this DD and then enjoyed a 20 year remission. During that remission I took no Crohns meds. My remission ended with an emergency resection due to a complete blockage. So from now on, I will continue to take my Asacol to help keep things under control.

Just fyi, you are currently on a med that helps Crohns flares, CIPRO. Could be that you are quieting things down with what I believe is Crohns Disease, because of the CIPRO. Good luck!
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 11/11/2008 10:02 AM (GMT -7)   
Aww, man! I hate taking drugs. I have been annoyed at even taking the pain meds...

BTW, I have only been on Cipro for a few days... I had no idea Cipro is a CD med. What does it help with CD?
Live for today, for tomorrow you might just get hit by a semi.


Nanners
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Date Joined Apr 2005
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   Posted 11/11/2008 10:46 AM (GMT -7)   
Some folks just respond well to antibiotics which Cipro and Flagyl are. It helps to control the inflammation.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


EMom
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Date Joined Aug 2007
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   Posted 11/11/2008 1:42 PM (GMT -7)   
I'm certainly no expert here, but I was under the impression that Cipro was prescribed for Crohn's when a C. diff infection was suspected.
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 11/11/2008 2:29 PM (GMT -7)   
Not always, sometimes our GI's give us Cipro when we have fistula's or other Crohns related infections.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.

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