maybe it's not Crohn's?

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bektold
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Date Joined Jul 2007
Total Posts : 456
   Posted 9/7/2007 2:46 PM (GMT -7)   
I just had a call from my new GI.  He finally got all the records from my first doctor, and after reviewing them, he thinks I have UC, not Crohn's.  I pointed out that I have skin tags, but he said that didn't mean anything.  I thought that skin tags meant Crohn's? 
 
Is it weird that I'm upset that he doesn't think I have Crohn's?  I mean, it's not like UC makes much difference.  My guts are still a mess.  The meds all stay the same.  I feel like I have to start all over, researching a new disease.

pb4
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   Posted 9/7/2007 3:21 PM (GMT -7)   
If it were me I'd go to another doc (or more), skin tags DEFINITELY mean something, they are related to crohns only and not UC...you could very easily have crohns-colitis as I do, this mean CD is affecting the colon, but it's still crohns, not UC, UC only affects the surface of the intestinal tissue, CD can affect the many layers which can lead to fistulas....with UC the entire area will be inflammed but with CD there are skipped patterns of inflammation, maybe ask this doc (or preferably a new doc) if your colonoscopy showed skipped patterns of inflammation and mention the other things above, the surface of the lining or deeper in the tissues...those are all things that differentiate UC from CD...not to mention CD can affect the entire GI tract from the mouth to the anus (hnce the anal skin tags) and UC is limited to the colon, sometimes involving the rectom (proctitis).

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


belleenstein
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Date Joined Feb 2007
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   Posted 9/7/2007 3:36 PM (GMT -7)   
Ditto that and though the medications are similar, decisions about surgery are very different. With colitis, if surgery is required usually they will take everything because that is a "cure". Not so with crohn's and therefore surgery needs to be sparing, only taking what is absolutely necessary. The consequences of getting it wrong can be tragic. I was in hospital once with a young woman thought to have colitis and she had made the decision to consent to radical surgery on that basis. When pathology reports came back, she found out she had crohn's disease. Once it's gone you can't put it back. I thought at the time it was too bad they hadn't taken the time to be certain before doing the surgery.
Belleenstein:

30+ years living with Crohn's.


want_2_be_well
Regular Member


Date Joined Sep 2006
Total Posts : 181
   Posted 9/7/2007 4:22 PM (GMT -7)   
I was mis diagonosed the with UC before being correctly diagonosed. The moral of the story sometimes it takes multiple GIs to get it right. I would go to a third, get another opionion.
want_2_be_well AKA Mel
32 year old Female
Diagnosed with CD 2006, had been ill off and on for over 10 years.
Also have seasonal allergies, milk allergy, and asthma.
CD Meds: Remicade every 8 weeks, Imuran 50 mg, Pentasa
 
 


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 9/7/2007 7:16 PM (GMT -7)   

Part of the problem is that I was just so shocked at the change of diagnosis.  I don't think I heard half of what he said after "I don't think it's Crohn's."  I'm going to take this weekend and gather my thoughts.  Then next week I'm going to see if I can make an appointment to see him again.  I really appreciate the fact that he's so willing to talk to me on the phone- at no charge- rather than pull me out of work and charge me for office visits.  But this is serious enough that I want to discuss it face to face.

I want him to go over all the test results with me again and explain why he thinks it's UC.  I do remember he said that there is no small bowel involvement.  Is that why he doubts Crohn's?  That would be uncommon, but not unheard of.  What, specifically, did the biopsies say?  Did they not see granulomas?  I know there have been lots of labs run.  Was a Promethius test done?  What did it say?  He said there was thickening of the intestinal wall in several spots.  If they aren't contiguous, wouldn't that indicate Crohn's?

I wish I'd had the presence of mind to ask all those questions when I had him on the phone.  I was just so floored.  The fact that I found out about an hour earlier that someone ran a $450 unauthorized charge on my debit card yesterday didn't help, either.  It's been a day.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/7/2007 7:50 PM (GMT -7)   
When you talk to him again ask him about the things I mentioned in my first reply, he'll likely be shocked that you know of this information because it seems like half (or more) of these idiot GI's don't think about the type of inflammation when they're actually looking in your colon or how affected the tissues are (whether it's surfacable only or affecting layer(s) of the tissue...those are dead give aways for proper DX....in most cases anyways, true that many CDers only have the surface tissue being affected but the pattern of inflammation that differs between UC and CD should help them clue in as well.

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


belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 9/7/2007 8:50 PM (GMT -7)   
Also, it is not at all uncommon for crohn's to affect the large intestine. is it possible that he was using the term colitis to mean crohn's-colitis?
Belleenstein:

30+ years living with Crohn's.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/8/2007 11:34 AM (GMT -7)   
That's what I have, crohns-colitis...through the yrs it's affecting my small bowel and my rectom, but has stayed constant in the colon and in my anus with perianal crohns skin tags.

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


Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 9/8/2007 12:48 PM (GMT -7)   
I have NO small bowl involvement but the terminal end of the colon and, yeah, to make it REAL fun, mouth and stomach. They thought for quite a while that it was UC except that the ulcers were all over the place and not continuous. So my dr.'s would waffle and say that my stomach ulcers were GERD, my mouth ulcers were canker sores until this last doc did the prometheus test and confirmed crohn's. The Remicade work wonders on the "GERD" and the "canker sores". Still waiting for healing in the bottom portion.
Have you had the blood test. I know it's kinda expensive and requires some work between docs and insurance companies to get it paid for. But it can distinguish between the two.

JaSanne
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Date Joined Oct 2006
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   Posted 9/8/2007 12:56 PM (GMT -7)   
I've had my dx changed from Crohn's to UC and then back again. While I'm not aware of the skin tag connection, I know fistulas are almost exclusive to CD (though not impossible with UC). I already had a fistula when my then-new GI wanted to change it to UC. Threw me for a loop too. I had already been told the disease was in my ileum and the GI wanted to say that it was a backwash of UC, so I didn't know what to believe. Since I had to have surgery, it was of utmost importance to know since it would mean the difference in whether the entire colon would be removed or only part. My surgeon was in agreement with the CD dx based on the fistula info alone, but he went into surgery prepared to change his mind. He left me with most of my colon, standing by the 1st dx, and my GI was convinced.

Sometimes it's just very hard to tell, but don't let it scare you. He may have valid reasons to change the dx. It matters most when it comes to surgery, so if you're not looking at surgery right away, you have time to investigate further. I told myself, "it is what it is, there's no changing that. Now we just have to figure out which it is." Either way, they are very serious diseases.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


Cyborg Ninja
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Date Joined Jan 2006
Total Posts : 660
   Posted 9/8/2007 4:06 PM (GMT -7)   
Anal skin tags can occur in the normal population when a person has a hemorrhoid that eventually shrinks and goes away. Sometimes it'll leave a skin tag. Bektold, your condition does sound more like Crohn's to me, but I can't be sure. I believe that intestinal fibrosis and stricturing occurs more commonly in Crohn's than it does in UC because, like another user said, every layer in Crohn's can be affected. Wikipedia's article on Crohn's has a good comparison between the two diseases. If I were you, I wouldn't be too worried because you are likely to get similar treatment no matter if you have Crohn's or UC. Several medications can be used for the inflammation in either -- they are only specified to target a certain area, rather than a specific disease. Unless you want a colonectomy...
Current DX: Graves' disease, Crohn's disease, syringomyelia (C6-L1)


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 9/8/2007 5:27 PM (GMT -7)   

I had hemorrhoid surgery and skin tags removed on April 24.  That's what kicked off this whole adventure for me.  I never healed from the surgery, and just got sicker and sicker, until I landed in the hospital for two week.  The original skin tags were definitely separate from the hemorrhoids, and I've grown new ones since the surgery.  The incisions still haven't healed, either, which suggests Crohn's to me, too.

My response to the medications has felt miraculous to me.  I literally went from being mostly out of it, and the doctors talking about surgery, to being allert with little nausea or tenderness in about 3 days.  There's been no further discussion of surgery.  The hemorrhoid surgery and it's aftermath has be the most miserable experience of my life, and there's no way I would consider any further surgery unless it was a life threatening situation.  I do want this nailed down, though, just in case things ever get that serious.

I spent some time last night on the phone with the friend who refered me to this doctor.  Our cases are oddly similar.  No small bowel involvement, problems in the descending colon, skin tags.  She has a fistula, but she's also had the disease for over 20 years.  She questions the diagnosis too, and has encouraged me to make an appointment with him to go over all of this.  She's been with him for years and thinks he'll react positively to my questions.  I've only been with this guy for two weeks, but I feel better now than I have since before the surgery.  He listened to my concerns and adjusted my meds on my first visit, and he's scheduled two phone consultations since- at no charge- rather than disrupt my work schedule any more with office visits.  It's a completely different attitude from my first GI, who was a real "hit and run" artist.  In all other ways he's been an excellent doctor.  I want to give him a chance to explain his reasons for changing the diagnosis before jumping ship.


pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 9/8/2007 5:38 PM (GMT -7)   
That's correct, you're not suppose to have perianal crohns skin tags removed because they just don't heal the way they should for the most part, there have been a very few who have been lucky but it's not the norm.

UCers don't typically experinace fistulas because with UC the inflammation is only surfacable and doesn't go through the many layers of the intestinal lining like it does with crohns, so the chances of a UCer getting a fistula is basically slim to none.

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


Cyborg Ninja
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Date Joined Jan 2006
Total Posts : 660
   Posted 9/9/2007 1:24 PM (GMT -7)   
Yeah, definitely sounds like Crohn's then. You didn't heal correctly after the surgery, so that suggests continuing inflammation like pb4 said and you already suspect. I think you know a lot more than your doctors, because this condition is affecting you, not them, and you're the one who's well-being is at stake. Also, UC patients tend not to have perianal involvement for some reason. At least that's what I've read -- that area isn't affected for them.
Current DX: Graves' disease, Crohn's disease, syringomyelia (C6-L1)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/9/2007 1:51 PM (GMT -7)   
correct, UCers don't ever have anal involvement only colon and rectal involvment for them.

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


Matthew
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Date Joined Oct 2004
Total Posts : 3932
   Posted 9/9/2007 5:56 PM (GMT -7)   
Yeah, I've been on the UC/CD merry-go Round over the years. But the only thing that upset me, was in 2004 when an idiot GI decided I didn't have IBD! Sheesh!

Matthew
Its my complications & peri-anal problems that signal Crohn's anyway.

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 9/12/2007 12:12 PM (GMT -7)   
I just spoke, briefly, with my GI.  (I'm starting my Pred taper tomorrow.  Yay!)  We're still going to meet in a week and half to go over everything, but his two strongest reasons for believing that it's UC instead of Crohn's are that there appears to be no small bowel involvement, and that it appears to be effecting only the surface of my colon, not the deeper layers.  He admits that the two diseases are very close, and that it's hard to know for sure.  The change in diagnosis has no effect on my current treatment plan.
 
I feel a little better about all of this.  I'm still not sure that he's right, but as long as I continue to receive treatment that's working, and as long as we keep on top of any changes in my condition, I can live with it.  And it was good to hear that the deeper layers of my colon aren't involved.  I can live a happy and contented life without the experience of fistulas thankyouverymuch.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/12/2007 12:47 PM (GMT -7)   
Just remember that even with having crohns the deeper layers are not always affected (it depends on the behaviour for each particulare crohnie), same with the fact that there is no small intestinal activity, many CDers may have inflammation/disease activity in their colon or rectom or small bowel only.

The biggest clue for the differences between the 2 conditions is the behaviour of the inflammation, with CD there are skipped patterns of inflammation, with UC typically the entire area will be inflammed with no skipped patterns (healthy tissue in between inflammed tissue)....you should discuss this with him.

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


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 9/12/2007 2:03 PM (GMT -7)   
At my last appointment with my old GI I asked where the disease was.  He said that my whole colon was so inflammed at the time of the colonoscopy that they couldn't really tell.  He said that once things were under better control they would look again and be better able to tell the specific areas effected.  The guy was a butthead, but I believe him about that.  By the time I had the colonoscopy I'd been really sick for a month, and doing all the wrong things- like eating a high fiber diet.  Ouch!  I saw the pictures, and it was a mess.
 
I'll ask, but I suspect the answer will be similar.  There was so much inflammation at the time that it could be contiguous, or it could be that the patches spread until the whole thing was inflammed anyway.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/12/2007 2:31 PM (GMT -7)   
Just to let you know, incase he uses the term pan colitis, this means inflammation of the entire colon...which is related to having UC and not crohns.

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

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