Am I a rarity? Or is this normal?

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snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 7/29/2008 6:40 AM (GMT -7)   
I have Chrohn's, no doubt about it but I wonder if I'm a little diff than most or if there are many like me. When diagnosed 3 years ago I had some (a few) ulcers in my terminal illeum and sufferred a HORRENDOUS fissure for over a year until I received Remicade. I still have rectal inflammation (it still hurts to poo) but that's it. I run 20-30 miles per week and lift weights 5 times a week. I feel great and eat anything I want (but I eat very healthy). My weight is 185 which is pretty healthy for me.
 
Please don't think I'm bragging and I know this could all change in ten minutes but I just wonder how common my case is. The doctor describes my case as severe since I didn't respond to imuran at all but my symtoms don't really seem severe when compared to most Chronies.
 
Thanks.
Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/29/2008 6:45 AM (GMT -7)   
Some of us have milder Crohns than others. Just count yourself as lucky. I have always had a milder form of Crohns. I could eat pretty much what I wanted and went on with living my life. Now that I have had 2 resections, life is different, but still livable.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 7/29/2008 6:49 AM (GMT -7)   

Nanners,

Were you treated while your case was somewhat mild? I hope I am correct in thinking I'm also very lucky that I sought treatment right away and got a quick dx and was therefore treated immediately. Maybe it won't progress? Nevertheless, I try to live my life as if it could all change tomorrow (within reaso, I still gotta work and I'm still broke!).

 


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2008 7:45 AM (GMT -7)   
Well that is great you got a quick dx. Each case of CD is different. Yes you are a rarity with being able to do that, but then again I think you would be with most of the population.

I do have a question how do you deal with having to poop when you are running? I have to take breaks every 10-15 mins because I have explosive d.

I have also noticed that when I am eating salad or put my mileage up higher that I start bleeding alot. Any problem with that?
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 7/29/2008 7:59 AM (GMT -7)   

MMMNavy,

 

I am very fortunate that I have no D at all and running doesn't effect me at all. I have run a marathon post DX and had no issues at all.

The only foods I avoid are high fiber, red meat and corn and corn products. These things seem to inflame my rectum.

How WOULD I deal with it if I had to go while running? I'd probably not run since it actually hurts me to go poop. If I run too soon after going it is very uncomfortable. I usually go straight fro the toilet to a warm bath.


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2008 8:18 AM (GMT -7)   
Yeah I get the acid burn, pain, and bleeding (both from the exit and higher up) when I poop (especially if I have salad, or other roughage), but I use neosporin to help with that.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 7/29/2008 8:21 AM (GMT -7)   
I'm sorry to hear that! Seems like there was one time when I actually enjoyed pooping!
Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2008 8:23 AM (GMT -7)   
Is it the acid poops that you have problems with?

Sorry that seems mighty personal, but I was curious.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 7/29/2008 8:33 AM (GMT -7)   
I guess that would describe it. Feels like black pepper sometimes or like maybe that things are too tight back there. No bleeding lately.

Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 7/29/2008 8:34 AM (GMT -7)   
Hi Snappy,
 
I'm a lot like you.  I was diagnosed fairly quickly too once I realized something was wrong.  I lived with "d" for years but was told it was IBS.  Once I had an emergency resection, and they discovered I had Crohn's, I've been doing much better.  There are a few things I can't eat but on the whole I can eat anything.  For some reason salads give me trouble only sometimes and those iced coffee drinks from Sonic do me in, but I can drink hot coffee with no problems.
 
I was able to cut back on my diabetes medicine and realized that my bowels have normalized so I'm thinking that the last year or so it wasn't my Crohn's acting up but the meds I was on causing some of my problems. 
 
I still suffer from fatigue several times a week and joint pains almost every day but on the whole I'm hoping for a long, long remission.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 7/29/2008 8:35 AM (GMT -7)   

Hi Riss,

 

How is the fissure? Is the 6MP helping? REmicade is the only thing that ever helped me. I tried it all except surgery, I guess!


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 7/29/2008 8:37 AM (GMT -7)   

Vicky,

 

A large coffee from Starbucks will send me to the bathroom but a small is ok!


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 7/29/2008 8:54 AM (GMT -7)   

Riss,

This is the oddest disease! 6mo and Pentasa did nothing for my fissure (I'm stil on Pentasa at my request because I don't want to put my eggs in one basket, so to speak) but my sed rate was always normal. Hope your rates are getting better!


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/29/2008 8:56 AM (GMT -7)   
Hi Snappy-

I have a pretty mild case of CD too. I came down with it 8 years ago and it took the doctors 3 months to know what was wrong with me. I spent 5 days in the hospital once they found it because it was so bad.
But after 2 years on meds I came off everything and have pretty much been sympton free since. I have had little issues throughout the years but 2 weeks of Cipro handled it and I was good and gold. I can pretty much eat anything and everything within reason. I too stay away from corn. May I started to flare again and had to go on Prednisone but tapering down. I also started on Methotrexate. My GI is hoping 6 months and maybe I can stop everything again and be good to go for another 8 years. LOL I don't have major D problems either just once in awhile.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 15mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
No Surgeries
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/29/2008 11:01 AM (GMT -7)   
Actually Snappy my first flare was bad. But I got diagnosed in 3 weeks and put on medication right away. Back in those days it was Pred and Azulfadine. I have always responded well to Pred. I only had two flares in my 1st four years with the disease and then enjoyed a 20 year remission. It ended abruptly with a emergency resection in 2002 and another in 2005, but now I just live with the mechanical problems created by the resections. I had a small flare recently and was able to get it back under control with a 10 day course of Pred. I consider myself lucky compared to alot of folks here.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 7/29/2008 2:30 PM (GMT -7)   
Sounds like a less severe version of mine- I've got it in the same spot, and the fissuring as well, but for me its debilitating. I sincerely hope the remicade keeps working for you.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 7/29/2008 4:03 PM (GMT -7)   
Your dr. thinks a severe case of crohns is a few ulcers in the TI, and a fissure?! Seriously?! Are you like his only crohns patient?!

I'm very happy for you that things are going well, and you have a super quality of life!

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 7/30/2008 4:54 AM (GMT -7)   

Bane,

 

Before Remicade my fissure was so horrible that I would lie on the floor and cry with my wife having one hand on the phone for the emergency room. I have never experienced a worse pain. Driving to work standing up, lying on the floor when I got there, losing 25 pounds just because I never wanted to poop again...yeah, it as BAD!!! I hope you can get some relief. I wasted a ton of time and money (and life) using other remedies before deciding Remicade was worth the risk of death at the time (I was scared BAD to use it!).

 

Chronimomx,

 

Yes, my GI is just looking at the non-responsiveness of all traditional drugs to determine mine is severe. I guess his thinking was "we better do something before you start getting real sick because it looks like these drugs aren't going to stop it!". I think he's a good doctor in general but I have disagreed with him on many things.


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!

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