"Atypical" Crohn's Disease? What can that even mean when every case is different?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/5/2010 2:44 PM (GMT -7)   
First post ever!
At almost 16 I was diagnosed with Crohn's Disease of the Terminal Ileum after a colonoscopy.
After a rough first year on Asacol, I went into remission and stopped taking all meds.
After 11 years of no doctors, meds, or much diarrhea, I've got an perineal abscess and a fistula,  or a "fistulous tract extending superiorly to the bowel (rectum)".
The terminal ileum is perfectly normal. It just looks a little scarred.
The Crohn's has completely jumped from the Ileum and landed itself entirely in the rectum. I've even got rectal ulcers all over the place and the rectum is pale and not pink.
Who knows how long all this has been brewing underneath the surface?
I had the same type of abscess in 2008, but it went away with antibiotics, and the doctor who looked it at made me think that it was more of a 'female problem' than a Crohn's problem.
Has anybody else's Crohn's jumped like this?
I start Remicade this month and my doctor told me I won't go off of it until it fails. And that all this is the result of my own negligence, which was encouraged by my parent's refusal to accept my original diagnosis.
Did anybody experience nausea, fatigue, or dizziness after their first infusion of Remicade?
I wish I had diarrhea instead of this. At least with the diarrhea, I had the illusion of control. But with perianal disease, there is truly nothing I can do to help myself. It's all in Remicade's hands.
Diagnosed with Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having a party around my junk.
The verdict on whether or not I should go on Humira or Remicade comes Monday.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/5/2010 3:12 PM (GMT -7)   
Yes, it's typical for crohn's to affect any part of the GI tract and it can affect more than one area at a time...when I first got sick, my CD actually started on my anus with perianal crohn's skin tags (look a little like hemmies), then it went internally (it normally starts in the TI) and all at one time was affecting my TI, colon (crohn's colitis) and rectom (proctitis). So yes, CD can appear in any part of the GI tract from mouth to anus.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 1/5/2010 3:34 PM (GMT -7)   
pb4...how do you know the difference between hemmies and skin tags? 
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
No meds yet, Garden of Life supplements


gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/5/2010 4:51 PM (GMT -7)   
My Crohn's started with an Anal Fissure. Every doctor I went to told my parents it was hemmies and that the fissure would go away. When you're dumping 6 times a day and you've got a fissure it feels like you've got a papercut in your bum that keeps getting reopened from all the bile coming out of you.
I don't mind the skin tags. I've named mine Bob. heh heh
Diagnosed with Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having a party around my junk.
The verdict on whether or not I should go on Humira or Remicade comes Monday.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/5/2010 5:50 PM (GMT -7)   
Just want to say welcome, and that I'm sorry to hear what your going through. Don't beat yourself up about what happened or why. I can't see the average mis 20's years old understanding this disease like a Dr. should, let alone a 16 or 17 year old! Whats done is done, put it behind you and now concentrate on doing the best you can for you! Educate yourself! That's one of the benifites of this site, read posts, ask questions and be wary of doctors, there are good one's and bad one's! Be a squeeky wheel around Dr.s by being informed! I as well as you had to learn these things the hard way so now put those experiences to work for you. Good luck with the Remicade or Humira decision. Please keep us informed.
Male 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 early 2003.Had a gall bladder removed Nov. of 2009. Currently on 5-asa Salofalk ,Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. Entecort, Imuran and Prednisone in the past.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/5/2010 9:45 PM (GMT -7)   
newfoundsun said...
pb4...how do you know the difference between hemmies and skin tags? 

Check out this link, the first set of pics shows hemmies, the pic below shows perianal crohn's skin tags (aka; elephant ears)

 

http://www.emedmag.com/html/pre/fea/features/011504.asp

 

 

:)


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/5/2010 10:11 PM (GMT -7)   
pb4 great link and now I know what a perianal skin tag is. ty
Male 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 early 2003.Had a gall bladder removed Nov. of 2009. Currently on 5-asa Salofalk ,Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. Entecort, Imuran and Prednisone in the past.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/6/2010 8:24 AM (GMT -7)   
Your gastro said:
<quote>... And that all this is the result of my own negligence, which was encouraged by my parent's refusal to accept my original diagnosis. ...</quote>
 
And THAT would have torqued my jaws - royally. IF there is ANYTHING I detest it is some doctor telling me its "my" fault I have Crohn's disease or "my" fault for its progression or severity.
 
I hope you like him and that he does well by you. Because "I" would be shopping for a new gastro.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/6/2010 9:21 AM (GMT -7)   
There are some fairly common denominators w/Crohn's disease. The area where it first strikes in the majority of cases is the terminal ileum/ileocecal valve area. One could consider it "atypical" for the Crohn's to first appear elsewhere.

I "think" it would be considered "atypical" for someone to require a resection of a small portion of the intestine and then encounter a FULL REMISSION for 20 years before the Crohn's becomes active again if the patient were not on any Crohn's meds during that 20 years.
 
Whilst Crohn's can appear anywhere from the mouth to the anus I "think" it would be considered "atypical" for Crohn's to appear in the mouth or sinuses, etc.
 
There are a majority of symptoms and disease activity that affect most every crohnie and then there are known but relatively rare symptoms and disease activity that few crohnies encounter and they might be considered "atypical".


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 1/6/2010 9:25:32 AM (GMT-7)


gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/7/2010 2:37 PM (GMT -7)   
My doctor sent out a referral for me to start taking Remicade because there isn't as much evidence showing the strength of Humira against fistulas.
eeep
We'll see how I react to that.
Also, she sent me off for a genetics test of my blood at Prometheus. Has anybody heard anything about this? I've always been a fan of the unified theory method, but my family has always blamed my Crohn's disease on the fact that I was a ravenous carnivore as a child. hahah
In the meantime, my whole family got smacked with a bout of stomach flu this week. ugh. As far as the diarrhea and vomiting go, mine was over in 4 hours unlike the others who are still afflicted, but I had the worst headache all day. After spending the day on the couch with a wet towel on my head, I took 2 bufferin and passed out for 11 hours! GO ME! Everyone else had incontinence with all the diarrhea, but I have so much experience with it that I was able to hold out till I got to the toilet even though it woke me up at 3am. hah hah So I guess Crohn's Disease has given me some wicked sphincter skills!
Stomach flu doesn't have anything on Crohn's!
Huzzah!
Diagnosed with Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having a party around my junk.
The verdict on whether or not I should go on Humira or Remicade comes Monday.

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 3:28 PM (GMT -7)
There are a total of 2,734,295 posts in 301,200 threads.
View Active Threads


Who's Online
This forum has 151323 registered members. Please welcome our newest member, judy.
344 Guest(s), 10 Registered Member(s) are currently online.  Details
cupcakespinkgal, Albannach, jennydancingfish, porkysgal, Scaredy Cat, Girlie, pmm73, Jingles1234, Cowboy10, Broncofan18


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer