Worst Location for Crohns?

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GDen
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   Posted 6/2/2010 8:21 PM (GMT -7)   
Where do you think the worst location is (other than anywhere ;) ) for Crohns to flare up? I say the rectum, because it really affects storage ability. But maybe the terminal ileum if it affects the valve that separates the two intestines...?
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grumpygi
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   Posted 6/2/2010 8:29 PM (GMT -7)   
My first response is also anywhere but maybe lean towards the small bowel. Hard to see, hard to diagnosis, hard to digest which puts everything else at risk.
newby


Julia Hill
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   Posted 6/2/2010 8:38 PM (GMT -7)   
Periannal crohn's - One can have a bowel resevtion in the upper bowel TI etc. but periannal crohns is much harder to deal with for me anyway.

Julia

njmom
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   Posted 6/2/2010 8:42 PM (GMT -7)   
Stomach - harder to treat. 

Nanners
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   Posted 6/3/2010 6:17 AM (GMT -7)   
I would say either the anal area or stomach as mentioned above, as they are harder to treat.
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Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
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NiceCupOfTea
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   Posted 6/3/2010 6:31 AM (GMT -7)   
Don't think any one location is "worse" than others - it all depends on how mild or severe your Crohn's is, and how responsive or refractory to treatment it is also.

CrohnieToo
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   Posted 6/3/2010 10:01 AM (GMT -7)   
The small intestine since it is the easiest place for Crohn's to hide and most difficult area to "examine" to even find it.

However, once Crohn's IS found then I tend to agree w/NiceCupOfTea - it all depends on how mild or severe the Crohn's is, and how responsive or resistant to treatment it is. Certainly, as GDen says, I would think that active Crohn's disease in the rectum would be especially difficult to live with.


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kazbern
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   Posted 6/3/2010 10:18 AM (GMT -7)   
I have chronic inflammation in the rectum (o joy!) but I treat it pretty effectively with mesalimine enemas. I'm secretly anxious about the long term possible risk of rectal cancer, but no one with a medical degree seems to be verbalizing the same worry. The enemas aren't a big deal, although I often "forget" and then have to play catch-up.

I don't like at all having inflammation in the stomach. My DR is not calling that Crohn's. I took Nexium for a few years, but still had upper GI discomfort and resented having to pay so much for a ppi that didn't seem to work all that well. So then I stopped, but the heartburn got too bad and I recently went back, this time using prevacid. We'll see.

I don't like having inflammation in the small intestine for all the reasons stated above. In fact, I've never swallowed a pill cam so it is just conjecture that I have active disease in the small bowel.

MMMNAVY
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   Posted 6/3/2010 10:23 AM (GMT -7)   
I think anywhere they cannot do surgery, like resections.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

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Make sure your suffering has meaning…


pb4
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   Posted 6/3/2010 10:49 AM (GMT -7)   
The rectom is the easiest area to treat (rectal meds generally do the trick for most everyone) I'd imagine the hardest area to treat is the small intestines because of all the nooks and cranny's...true enough though, it also greatlly depends on the severity regardless of where the location(s) CD is affecting, still, the rectom is generally the easiest to treat for the majority and the sooner it gets treated the better.
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 :)~~~~~~~~


JonJon
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Date Joined Jun 2004
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   Posted 6/3/2010 11:17 AM (GMT -7)   
I have Periannal crohn's and intestinal crohn's. By far the periannal crohns is the worst for me. There used to be a product out by Fleet, hemoriodal pads with antiseptic. Fleet took it off the market. They were the best pads to use for rectal flare ups. I find that in the summer time the rectal crohn's gets iritated by sweat, giving you what I call "Monkey Butt". You cant sit down, you can't walk and taking hot baths all day long.
 
 
                            
 
 
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Glad Bag
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   Posted 6/3/2010 11:34 AM (GMT -7)   
PB4: Although the rectum may be 'easy to treat' for some, it isn't for everyone. My rectum was completely destroyed by fistulas despite constant treatment. I eventually had to have the entire colon, rectum, and anus removed.
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


pb4
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Date Joined Feb 2004
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   Posted 6/3/2010 12:14 PM (GMT -7)   
Glad Bag, I'm speaking in regards to inflammation..treating inflammation in the rectom for most is easiest due to rectal meds (not having to go trhough your system like oral meds, but instead direct contact)....fistulas are a whole other ball game and fistulas weren't mentioned....fistulas can appear in many other areas besides the rectom. Also, I never said it was easy to treat for everyone....I said, rectal meds do the trick for MOST everyone, but I wasn't referring specifically to fistulas since no one on this thread was being specific to fistulas either.
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 :)~~~~~~~~


NiceCupOfTea
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Date Joined Jan 2010
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   Posted 6/3/2010 12:57 PM (GMT -7)   
Well, I have Crohn's in the colon and small bowel. Surgery has been ruled out for both. My GI told me that the Crohn's would kill me if I don't take anything for it, but meds don't seem to do a lot for me. So if this latest bout of steroids/6MP/Remicade-to-come doesn't work I don't know where I'll be with regards to the Crohn's and my health.

Would I rather have Crohn's in the rectum than the above? Depends. I don't think it would be pleasant but I don't think this is particularly pleasant either.

GDen
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   Posted 6/3/2010 1:47 PM (GMT -7)   
I'm not that familiar with Crohns in the stomach -- don't PPIs help with it?
Cimzia, Asacol


ivy6
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Date Joined Sep 2005
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   Posted 6/3/2010 3:00 PM (GMT -7)   
GDen, is this thread helpful? I'm not sure that it's really supportive to start debating which type of Crohn's is the worst: it's like those upsetting and divisive threads we get from time to time about which illnesses are worse than others. We're here to support everyone, no matter how bad their Crohn's is.

My feeling is that the worst location for Crohn's is in your own body, or in the body of someone you love. It doesn't matter how severe or mild the illness is: the physical, emotional and financial impacts can be devastating, and that's one of the reasons this forum is here.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


GDen
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   Posted 6/3/2010 3:10 PM (GMT -7)   
Yes, this thread has been pretty educational and helpful to me...

Post Edited By Moderator (MMMNAVY) : 6/3/2010 6:10:30 PM (GMT-6)


NiceCupOfTea
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   Posted 6/3/2010 3:16 PM (GMT -7)   
I agree with ivy6 and I made the mistake of letting myself get wound up - quite a touchy subject, this, for me. And with this post I shall bow out of this thread.

Edit: Wow. Two new posts in the space of a couple of minutes >_<. This one was addressed to ivy's first post...

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 6/3/2010 3:20 PM (GMT -7)   
And I've removed post #2 'cos I wasn't sure about posting it in the first place :-).

Thanks, NiceCupOfTea.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


NiceCupOfTea
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   Posted 6/3/2010 3:41 PM (GMT -7)   
*bows back in*

You're welcome :p

*bows out again*

randynoguts
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Date Joined Jan 2003
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   Posted 6/3/2010 4:48 PM (GMT -7)   
i say the worst place for it to flare up is Antarctica.. i mean your down there in the ice for 6 months with no relief availabe. and the outhouse is frozen solid. your D would freeze before it got out. ;0)


randynoguts 



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Post Edited (randynoguts) : 6/4/2010 1:44:16 AM (GMT-6)


ivy6
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   Posted 6/3/2010 5:02 PM (GMT -7)   
Now that's a horrible mental image, Randy :-)
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MMMNAVY
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Date Joined Jul 2006
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   Posted 6/3/2010 5:11 PM (GMT -7)   
Too funny Randy!

For the record PPI's do not help everyone that has ulcerations in the stomach, nor do they help everyone who has ulcers from their mouth on. The most worrisome ones that are most concerning to me are the ones that are close to eatting thru to my jawbone right now.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 6/3/2010 6:22:31 PM (GMT-6)


Tara28
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Date Joined Apr 2005
Total Posts : 362
   Posted 6/3/2010 5:25 PM (GMT -7)   
Well, I am lucky? enough to have perianal crohn's , and it totally sucks. For me, it is not "easy to treat". Perianal crohn's also greatly increase chances of fistulas, of which I have 3 open to the skin and constantly oozing. I can barely sit. I have setons placed and tried both Remicade and HUmira to close them. Remi did nothing, Humira gave me psoriasis and did nothing for the fistulas.
 
I even resorted to a colostomy bc my colo=rectal surgeon said it may help the humira work and give my bowel a rest. Not! Now I have a retracted stoma and a pouch along with all the other joys of rectal disease.
 
Today, I had 6 abcsesses drained. I was a wreck b y the end. I have to go back tomorrow to have them re=packed. I am so tired of this crap.
 
My gastro and my surgeon both say I've got the worse case they've ever seen. (yay, me) eyes
 
Of course, Crohn's anywhere SUCKS!! Personally I find the perianal crohn's so insidious I would much rather be always on the throne than have to deal with the fistulae-which don;t get me wrong has been a big part of my life at times too.
 
On the other side of the coin, people with crohn's in the small intestine have to deal with nutritional deficiences and malabsorption- and if severe enough can literally starve. Plump ol me gets comments from co-workers like " Your crohn's can't be severe bc if it was you wouldn't be fat." Gee, thanks, ignoramus!
30 years old, dx with Crohn's in 1998. Currently on Imuran 100mg/day, Flagyl 1000mg/day
and Cipralex 10mg/day for anxiety. Just got off Cipro which was my drug for last 4 years.
Perianal fistula, and 2 more suspected. Crohn's only at end of colon, cecum. Remi and asacol did NADA.


MMMNAVY
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Date Joined Jul 2006
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   Posted 6/3/2010 5:29 PM (GMT -7)   
Tara,
The bummer of that theory is that you can still have severe small intestinal crohns, have severe malnutrition issues (to the point they cause heart problems), and still be fat! It is just a no win situation.
I think people just do not get the diversity of crohns.
Take care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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