It's official - I'm now a cronie...

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kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 8/31/2010 5:34 PM (GMT -7)   
Just visited my GI yesterday to discuss a flare, and he marked my diagnosis: Crohn's w/large and small bowel involvement. The reason being that when he did a colonoscopy (back in 2006), he noted healthy patches in between ulcerated patches and ileum inflammation as well. I've been pretty healthy since then luckily, but unfortunately I'm having a flare right now. So when I go in yesterday, he says I have Crohn's - go figure.

It's going to be weird saying I have Crohn's after 10 years of saying Ulcerative Colitis!

I posted about this once a few weeks ago, and it sounds like it's relatively common to have your dx changed from UC to Crohn's. SO I guess I'm joining the club!

mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/31/2010 6:32 PM (GMT -7)   
Both, CD and UC, are very difficult conditions to live with sometimes. You are really lucky not to have a Crohn's flare in 10 years!
26 years old. Diagnosed with Crohn's disease March 2008. Battled a C. diff infection from Summer 2009-Spring 2010. Have been dealing with a severe flare for the past several weeks.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/31/2010 7:02 PM (GMT -7)   
Now that things are officially changed, are they changing your meds? Maybe they'll be able to get things under control knowing what they're up against.

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 8/31/2010 7:26 PM (GMT -7)   
The only thing my doc changed was to prescribe me Asacol HD (I forget what the HD stands for, but I know it's not "high-def'!). I think he said that the asacol disolves higher up in the intestinal tract, so maybe trying to target the ileum? I don't really know...he also prescribed me some Rowasa enemas, which is what I REALLY need!

I've been lucky in that I have mild symptoms compared to most. My doc is pretty lenient with me in terms of my non-compliance with medication, but he said part of the reason for the asacol is also that it's a higher dose (HD?????) and I could get away with just one pill a day.

My doc also said (I thought this was interesting and didn't realize this) is that with CD, a person tends to stay about the same level of severity throughout their disease. Whereas with UC, people can be fine one minute and really sick the next.
UC dx in 1998 (age 18) - proctosigmoiditis - Allergic to Sulfa
1998-2009 Asacol 2/2X daily - very sketchy about taking it...pretty much drug-free for a long time.
Jan 2006 - Crohn's? UC?
Aug 2009 - flare - Mesalamine enemas and 4 Aprisos daily...still a bit sketchy about taking the Apriso once the flare was done
August 2010 - Flaring - Asacol HD and sfRowasa
8/10 - Doc dx me with Crohn's!

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 8/31/2010 7:39 PM (GMT -7)   
The up side of Crohn's compared to UC
-less risk of colon cancer
-less risk of primary sclerosing cholangitis
-easier to control with diet (according to both Elaine Gottchall and Dr. Lutz)
-you CAN get out of a flare with an elemental diet (not the case for UC)

The downside of Crohn's compared to UC
-fistulas
-abscesses
-mouth to anus distribution possible
-can't cure it with colectomy

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 9/1/2010 2:02 AM (GMT -7)   
"My doc also said (I thought this was interesting and didn't realize this) is that with CD, a person tends to stay about the same level of severity throughout their disease. Whereas with UC, people can be fine one minute and really sick the next." Personally I believe thats a load of cr...garbaage! That is not how my disease works.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8568
   Posted 9/1/2010 12:55 PM (GMT -7)   
HD does mean high dose >_>

www.asacolhd.com/resources/asacol-hd-faqs

Tbh, I'm surprised you weren't diagnosed with Crohn's or at least indeterminate colitis (when they can't tell if it's UC or Crohn's) back in 2006 - patchy inflammation and inflammation in the terminal ileum sounds more like Crohn's than UC to me, although I didn't see your scope and am not a gastroenterologist. Anyway, I'm sorry you received the "upgrade" in diagnosis now, so to speak. But you do sound like you have a mild case, which means you'll probably avoid things like strictures, fistulas, etc. - the hallmarks of more severe Crohn's disease.

I'm going to do a bit of quibbling now... >_<

-less risk of colon cancer

Not if you have Crohn's colitis (Crohn's in the colon). The risk is similar then.

-easier to control with diet (according to both Elaine Gottchall and Dr. Lutz)

I really don't believe this, sorry.

-you CAN get out of a flare with an elemental diet (not the case for UC)

Yeah, sometimes... It depends partly on how old you are (works best for children and adolescents). Writer would know far more than me, but an elemental diet isn't a cast iron guarantee for ending a flare. Even if you go into remission symptoms do tend to creep back upon resuming a normal diet.

Also:

"My doc also said (I thought this was interesting and didn't realize this) is that with CD, a person tends to stay about the same level of severity throughout their disease. Whereas with UC, people can be fine one minute and really sick the next." Personally I believe thats a load of cr...garbaage! That is not how my disease works.

Have to agree with Grandpato2 on this one. People with Crohn's do not always stay at the same level of severity; far from it tbh.

Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 9/1/2010 5:51 PM (GMT -7)   
Just as a FYI. I have mild Crohn's, in fact, so mild I lived with it for years thinking it was just IBS or lactose intolerence. My doctors thought so too since I have always been over-weight. Even mild Crohn's can have fistulas and abcesses. Found out it was crohn's when I had to have emergency surgery for a fistula to my bladder and had to have half of my colon removed because of severe strictures and abcesses.

Lesson for me is that even if it is mild, severe damage can be done over a long period of time if not treated.
Started having issues with the Big "D" at age 19.  Doctor said Lactose Intolerance
Daugher diagnosed when she was 12 and I was 33.
My doctor said I had IBS.
 
8-2006    Emergency resection for fistula to bladder at the age of 47.
"Oh, it is Crohn's"     Dah!!!!
 
11-2006   Reaction to 6mp - isolation with bone marrow suppression and found out I had steriod induced diabetes.  Yeah!!!
4000mg of Pentasa only for Crohn's
Cymbalta, Metformin, Lipitor, Lisinopril
 
Update.  6-10-2010  Started remicade today.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 9/2/2010 12:13 PM (GMT -7)   
Welcome Kelli. I made the same move some months ago.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
Caltrate-D 1000mg/day

wannaretire
Regular Member


Date Joined Sep 2010
Total Posts : 31
   Posted 9/3/2010 11:29 AM (GMT -7)   
Hello all
I was diagnosed 3 days ago with Crohn's. Really not what I expected at all. I'd have bet my house it was celiac. GI says he was suprised too since he didn't see any inflammation during colonoscopy. But biopsy dx was CD.
Anyway, I obviously don't know much about this yet, but since I also have Hashimoto's (auto immune thyroid disease) I am well acquainted with forums like this. I think I've learned more about hashimoto's on a patient forum than I have ever learned from a doctor.
So my first question on CD.....what is an elemental diet and when is it needed?

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/3/2010 4:41 PM (GMT -7)   
"Mild" is relative when it comes to CD. I too have mild CD, from the amount of inflammation (known that is, higher up, Small Bowel is Terra Incognita so far!)which is usually only a few centimeter area or patches. The extra-intestinal stuff has a few people telling me I should try for SSI Disability. Many things..

Matthew

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 9/3/2010 6:31 PM (GMT -7)   
I hope my doc is right about the disease not tending to get worse in severity, I'd like to think maybe I'll stay about the same. It's funny how a dx can change your opinion...I always knew that I have "pain" in my abdomen a lot, but honestly ignored it a lot of the time. Since I'm in a flare now, I'm having more pain than normal (along with that oh-so-pleasant cramping that has me running to the toilet all the time). However, the difference is that now I'm paying attention to WHERE the paid is. My pain is on my right side, about even with my bellybutton. That's ileum, right?

So now I know it's crohn's, I'm like ILEUM, and when it was UC, I just thought of it as PAIN.
UC dx in 1998 (age 18) - proctosigmoiditis - Allergic to Sulfa
1998-2009 Asacol 2/2X daily - very sketchy about taking it...pretty much drug-free for a long time.
Jan 2006 - Crohn's? UC?
Aug 2009 - flare - Mesalamine enemas and 4 Aprisos daily...still a bit sketchy about taking the Apriso once the flare was done
August 2010 - Flaring - Asacol HD and sfRowasa
8/10 - Doc dx me with Crohn's!
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