Now, I'm confused....please opine!

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rummy
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/20/2009 2:37 PM (GMT -7)   
I first had symtoms of rectal bleeding and loose sttols starting about three months ago. After my physician removed all regular diagnosis, he passed me onto a GI, who immediately ordered a colonoscopy on March 25th. After seeing inflammation in colon (ring like and not continuous), my GI diagnosed colitis (probable crohn's) and started treating me with 2.4 g of Lialda. He then ordered some more blood work (ESD)that he said is more consistent with Crohn's. He then sent my bloodwork to Promoetheus- Serology 7 test. On meeting him today, he says that the test came back confirming IBD, but saying I have UC and not Crohn's. Also, since 25 days on Lialda seems to have cured my blood in the stools that may be I do have UC. Further, lack of any penetrating pain in abdomen also points more to UC than Crohn's. So for now he is recommending continuation on Lialda. Meanwhile, I'm still wondering whether I have Crohn's or UC?
 
Any advice to further my diagnosis or your personal experiences would be helpful? Thanks.  

HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 4/20/2009 4:57 PM (GMT -7)   
My GI says he is not 100% sure which one I have. He has went back and fourth a total of three times and finally told me that my pain is more consistant with Crohns. He still says there is a chance it could be right sided colitis, however the treatment plan would be the same. He said short of doing another colonoscopy he just can't be 100% sure.

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/20/2009 5:06 PM (GMT -7)   
With either CD or UC there can be penetrating pain in the abdomen so that's not a good guideline to use when trying to DX between the 2, as the symptoms for both can be identical...if you have skipped patterns of inflammation (healthy tissue in between inflamed then that is CD) if the entire area is inflamed with no skipped patterns then that is UC, also UC is restricted to the colon/rectom, CD can affect any part of the GI from anus to mouth.

Maybe get a second opinion...nothing worse than a GI that flip-flops on DX...the only good news is that meds used to treat UC are the same as they use to treat CC (crohn's colitis, which is CD affecting the colon).

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


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 4/20/2009 5:20 PM (GMT -7)   
Mine said indeterminate Crohn's and Colitis so is this a possibility for you as well? I'm sorry to hear you're having this kind of trouble..It feels worse I think NOT to know exactly what you have.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 4/20/2009 5:39 PM (GMT -7)   
It sounds like you have a treatment that's working for you, so I'd stick with it, and stick with your GI. No GI can ever tell you definitively that you have ulcerative colitis vs. Crohn's; they can look too much alike when the disease just affects the large intestine, and the diagnosis can always change later. Try to focus on the now, and not worry too much about what the future will bring.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/20/2009 6:27 PM (GMT -7)   
Writer, I'm not sure what you mean by "no GI can ever tell you definitively that you have UC vs CD, I don't think that's accurate, when CD is affecting the colon it generally does have a different appearance compared to UC", skipped patterns of inflammation with CD compared to the entire area with UC and typically with UC the inflamation is surfaceable only, with CD it can go through the many layers of the intestinal lining...I was DX easily mainly because of my perianal crohn's skin tags, but at my DX my CD was also affecting my rectom, colon and TI and my GI said my pattern of inflammation in my colon and rectom (where UC typically hangs out) were very obviously CD-looking.

What I find strange is how so many are misDX and so many are DX as having indeterminant colitis (when a GI just can't tell which it is), I know that there is a small percentage (aprox 2%) that do have both UC and CD but to get that DX means they have pretty concrete proof, which would be in the form that inflammation in the colon would affect the entire area with no skipped patterns and remain on the surface of the lining only when at the same time inflammation in the TI or any part of the small bowel shows the typical CD pattern, not to mention, UC wouldn't show up higher in the small intestine as CD would.

I also know that many CDers get confused when their GI's mention the word colitis, as it tends to automatically make the patient think they also have UC when infact they have CD affecting the colon, but many docs are not clear with their CD patients when their docs find CD activity in the colon and tell their patient they have colitis as well (which doesn't mean ulcerative colitis)....col=colon and itis=inflammation be it from either UC or CD.



:)


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

Post Edited (pb4) : 4/20/2009 7:32:04 PM (GMT-6)


lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 249
   Posted 4/20/2009 9:50 PM (GMT -7)   
I have to agree with you Pb4 on not knowing why some dr's have a hard time saying definately yes you have UC or CD or definately not. When I was first diagnosed my 1st dr said I had crohns disease for sure. I ended up not liking that dr because when I went to his office he would ask me why im even there...(it would be beause he told me to make an appt) SOO I switched dr's. From looking at the pictures from my last colonoscopy and listening to my symptoms he said he was leaning towards UC instead. Its funny how even dr's in the same building can have totally different opinions...such as my first GI took me off all meds from dec 07 - jan 09 due to pregnancy/breastfeeding. The GI i switched to said I should never have been off meds ever and to expect to be on some sort of dose as a maintanence.

I have another colonoscopy on thursday because my symptoms are not getting better at all taking the 8 pills of asacol/day. So he wants me to have another one and move my asacol up to 12 pills/ day and also use proctofoam. I just started this last week and see no improvement yet but Im not ruling anything out because i know it can take some time

kim
Diagnosed w/crohns in October 07
Taken off meds January 08 because of pregnacy
Back to gastro Dr. January 09 (new dr.)
Diagnosed w/ UC instead; told should have never gotten off meds
taking Asacol and Canasa
Flaring still as of 04/09
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/20/2009 11:15 PM (GMT -7)   
Hey lovemyboys,

My CD has affected my colon my entire 18 yrs of having CD and my anus (with the perianal crohn's skin tags) as well as on and off in the rectom (Proctitis) which bring me to my point since you mentioned you were using procofoam at the moment I'm assuming that you've got some proctitis going on at the moment?

I actually have had proctitis issues on and off over my 18 yrs (as I mentioned) and more on than off I'd say too so I wanted to share something with you from my experiance (we are all different but I'm gonna share in the hopes you might notice the same change as I have which I'm going to now share)....

It wasn't until I started using probiotics daily starting about 5 yrs ago now (incase you're interested the probiotic I use is called primadophilus reuteri made by natures way) that I noticed I haven't had a proctitis issue since, now for me that is the longest I have ever in my 18 yrs with this disease have ever gone (and still counting) without having any proctitis issues so I can only assume it's either weird luck/coincidence but I'm leaning more towards it being the probiotic (this particular one does state it has guaranteed intestinal release). So I'm thinking, cuz probiotics are virtually essential for IBDers (as well as IBSers) because we tend to have bacterial overgrowth issues which can exacerbate our symptoms, it might be something you want to try to see if you'll benefit from it regarding your proctitis (but I think you may notice all around symptom improvements, maybe more like hoping you will as myself and many others have). Not saying it's a mirical cure (although researchers have done at least one small study I know of with CDers and a probiotic calles VSL3 where the majority went right into remission) but anything to even take possibly some of the overall edge of symptoms off is always a good thing.

Not saying ditch any of the meds though, just saying add a probiotic in as well if you're not already taking one.

Just a thought.

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


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 4/21/2009 6:26 AM (GMT -7)   
I agree, PB4, there are definitely cases that are clearly Crohn's, such as those with obviously patchy inflammation or involvement outside the large intestine. But pancolitis can look like both diseases if it hasn't started digging deeply yet, and there are also people who have only one section of the colon affected and you never know how that is going to develop. So I don't blame doctors for being cautious. We've all heard of people who have what seems to be an absolutely secure diagnosis of ulcerative colitis, who then have surgery, and later develop symptoms elsewhere in the GI tract that are consistent with Crohn's. But then, I'm a never say never person, the human body works in mysterious ways : )

lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 249
   Posted 4/21/2009 7:04 AM (GMT -7)   

thanks for the advice PB4...should I ask my dr about probiotics or should I just start taking them? He had never mentioned to me before

 

Thanks!


Diagnosed w/crohns in October 07
Taken off meds January 08 because of pregnacy
Back to gastro Dr. January 09 (new dr.)
Diagnosed w/ UC instead; told should have never gotten off meds
taking Asacol and Canasa
Flaring still as of 04/09
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/21/2009 10:47 AM (GMT -7)   
Hey lovemyboys,

You can just start taking them, it won't have any interactions with any of your meds...some GI's think probiotics are fantastic, others feel it will make no difference but I'm pretty sure you won't necessarily find a GI that wil forbid you from taking them (there's be no reason for that), they are simply friendly bacteria to help balance the gut flora, and if it has improvements on your symptoms it's definitely worth it. Keep in mind though, you may not notice anything for a while so just continue with them and hopefully you'll start to notice improvements and taking them daily and indefinitely (even during remission) is essential, otherwise your gut flora will probably just get unbalanced again.

The one I use (that I mentioned above) is found at most health food stores (not grocery from my experiance) and if your local HF store doesn't have it you can ask them to special order it for you.

The only thing with the Primadophilus Reuteri is it must be kept in the fridge (so be sure the store you get it from has it in their fridge as well). This particular one happens to aid with high cholesterol, lactose intolerance and for women, vaginal health (don't worry if you don't have any of those issues, it's still fine to use it).

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


lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 249
   Posted 4/21/2009 4:25 PM (GMT -7)   
Ok I will give them a try!!!!
Diagnosed w/crohns in October 07
Taken off meds January 08 because of pregnacy
Back to gastro Dr. January 09 (new dr.)
Diagnosed w/ UC instead; told should have never gotten off meds
taking Asacol and Canasa
Flaring still as of 04/09
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/21/2009 7:05 PM (GMT -7)   
I don't think it's always possible to tell exactly which it is at first diagnosis. sometimes it is, sometimes it's not. I was originally dx UC. The first flex sig showed continuous inflammation, no skip areas and only surface ulceration. My biopsies continue even now to come back UC.

As time went by, the pattern changed. I developed a fissure, then skin tags. The next colonoscopy showed skip areas and deeper ulcers. I was labeled as indeterminate for a while. Eventually I had my first fistula. Clearly now it's Crohn's, regardless of what the biopsy shows.

So, if you want a second opinion, you should definitely go after one! That is our right as patients. If your treatment is working, I wouldn't try to change it.  (Though I don't consider adding probiotics a change in treatment.  They are worth adding!!!  I agree...) It is very, very frustrating to go back and forth between diagnoses. Personally I felt like a ping pong ball. In hindsight it only mattered because many of the treatments are approved first for Crohn's then studies follow for UC. (At least, that was my perspective.)

My first symptoms were bleeding and mucous with bowel movements. Urgency got worse as time went by, as did everything else.

Best of luck... Hang in there!


--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl

Post Edited (sr5599) : 4/21/2009 8:08:39 PM (GMT-6)


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 4/24/2009 7:52 AM (GMT -7)   
My daughter's surgeon and pathologist where not in agreement at first.  She had what was left of her appendix removed and part of her colon that was or was not damaged because of the appendicitis or was it crohn's.  The surgeon though her colon looked good, didn't see any evidence of crohns but the pathologist did see it in the biopsy.  Once healed from that surgery she had no trouble until last summer, 2 years, when she developed a perianal abscess.  When the surgeon when in he said she definitely had the anul canal of someone with crohns. 
 
My husband has colitis - at first he let it go so long he was on prednosone for at least 6 months along with asacol (9 pills a day).  That cleared up the bloody stools and D.  Now he takes 6 asacol a day and is doing fine.
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