Crohns of the eosophagus

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kels1978
New Member


Date Joined Sep 2010
Total Posts : 6
   Posted 9/15/2010 2:59 AM (GMT -7)   
Hi everyone, I have been reading this site for quite some time, and thought it was about time I registered!

I was diagnosed with Crohns in 2003, and have just been in to the hospital a couple of weeks ago for a colonoscopy and endoscopy following my most recent flare. I have been on and off pentasa, azathioprine and pred for a long time, but never manage to get things under control for any length of time. I went in to see my specialist today to get the results.

He said that I have severe Crohns, and I also have it in my esophagus, which explains the crazy acid reflux and feeling of things getting stuck in my throat when eating. Its good to know whats going on finally. Apparently less than 1% of people that have Crohns, have it in their esophagus, so I was wondering if anyone else on here has this?

Was good to have a look at the photos from my colonoscopy and endoscopy to see the extent of the ulceration, doesn't look pretty thats for sure. I'm on prednisone at the moment, currently tapering down from 40mg, and they are putting me back on Azathioprine again. I discussed the use of biologics (Humira/remicade), but have to try a higher dose of Aza first to see if it will help.

Anyway, just a short post to say Hi and touch base with you all :)

cheers!

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 9/15/2010 3:16 AM (GMT -7)   
Yep, I was dx with crohn's in my esophagus a few years ago. I had your same symptoms off and on for a long time and no diagnosis, just dealt with it. Then during a bad flare I was having "chest pains" when I ate or drank anything. So we did an upper scope and was told I had CD in my esophagus. I did a course of pred that helped alot. Then I was on Remicade for a year or so and it kept it a bay. I haven't had another bad episode since, but I do have reflux and have to keep the sugary stuff to a minimum. Others here have also had this I believe.

I always like to see my scope photos too. This last one was a chance to see my new anastamosis area and what's left of my ileum --- no GI had seen that in almost 30 years(had surgery).

Give the pred a chance to work. I'm curious why you have to wait to start biologics, insurance?

kels1978
New Member


Date Joined Sep 2010
Total Posts : 6
   Posted 9/15/2010 3:22 AM (GMT -7)   
They seem to be a little bit more reluctant to use biologics in New Zealand, I think their use has only been approved by the government within the last few years. It seems to be used as a bit of a last resort here, rather than over in the US. Our health system is government funded, so we don't have to pay for anything through the public health system, so we have to meet certain criteria to have access to those drugs.
Severe Crohns Disease, diagnosed in 2003. Also have Crohns of the eosophagus.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/15/2010 5:38 AM (GMT -7)   
Hi and welcome. Sorry you have crohns though . Does your doc have you on anything like Prevasid or Nexium to keep the acid levels down some in your stomach ? It helps me a lot and trust me I have had my share of esophagus trouble.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/15/2010 6:18 AM (GMT -7)   
Don't you hate it when your meds get stuck in your throat on one of those lesions shelves (for lack of a better word)...sucks, sucks, sucks!
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…

Kiwi12
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 9/15/2010 2:57 PM (GMT -7)   
Hi Kels
 
Fancy we are both in Christchurch which is not only earthquake central at the moment but also apparently crohns capital of NZ ;) 
 
How clever of you to have had your scope pre earthquake ;P I really hope the AZA works for you so you can get back on track without stepping up to the biologics.
 
I get the distinct impression the use of biologics here is still last resort for severe cases when nothing else works and of course, like you said, driven by funding criteria.
 
On a positive note the crohns I had in my esophagus settled down after a resection in 2009 to the point I no longer need to take Losec. Only get acid reflux now when I have drunk/eaten something really dumb ;P
 
Take Care
Lesley

Sarah1116
Regular Member


Date Joined Nov 2004
Total Posts : 55
   Posted 9/17/2010 1:28 PM (GMT -7)   

I also have it in my esophagus as well as my stomach and throughout my large intestine.  I have to agree with you that the feeling of something being stuck in your throat is awful and the ulcers are very painful.  Besides Humira I take prevacid and when things flare up in my esophagus and stomach I take two prevacid daily instead of one and my doctor prescribes me Lidocaine jelly which I mix with honey and swallow it down.  It does WONDERS to relieve the pain in my throat.  I can eat and drink without pain, only the sense of irritation remains, after doing it.

 


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 9/17/2010 2:01 PM (GMT -7)   
Me, too. I had trouble swallowing a few years ago, complained about it at every visit. Finally I told the GI that I could no longer take my Pentasa because I couldn't swallow it. He said "You can't swallow?!"

DUH! I couldn't believe that he hadn't heard me describe this problem every month for the previous 3 months. I had an endoscopy w/balloon dilation. He told me it would probably come back, but I've been taking a PPI since then and so far it's been ok (like 4 years now).

On my last upper endoscopy 21 months ago I still had gastritis, but my esophagus looked fine.

Hope you feel better soon!
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.
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