Crohn's in the throat/esophogus

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Crohn'snme
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Date Joined Feb 2007
Total Posts : 734
   Posted 10/23/2008 3:31 PM (GMT -7)   
Has anyone experienced Crohn's in their throat/esophogus.  My doctor thinks that is what's going on.  I have been coughing up a mucous/tissue/blood clot every two-three days for 10 months.  about the size of a nickel.  Went for a CT scan at my General doc, thinking it was coming from my head, it wasn't.  Also, having sores appear on my legs for no reason and they take a long time to heal.  My GI is going to do an endoscopy and biopsy the ulceration.  Anyone gone through this. 
 
Humira, Nexium, Folic Acid, Probiotics, Cimbalta, Asacol

rlc06
Regular Member


Date Joined Aug 2006
Total Posts : 184
   Posted 10/23/2008 4:32 PM (GMT -7)   
Hello Yes I have experienced the same as you. Its not fun and it took a long time for My Dr to find out what was going on. I have Crohns from the Mouth to the Anus. I am on Remicade but after being on it for almost 5 yrs now it isnt as effective as it once was. I was on Prednisone but it was short term. I know that this isnt much help other than to let you know that you are not the only one who has had this problem.

Mommy
 
 
Diag with Crohns of the colon May 1998 after birth of child in 2001 disease moved North and Left the colon. I now have Crohns of the Mouth all the way thru to the Colon. Currently on Remicade but not working so well that now meds are every 4 weeks at 1200mg. Chronic D 30-50 times daily with on and Off Joint pain and swelling of stomach when dose of meds wears off 2 weeks after infusion. 
 


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 10/23/2008 6:07 PM (GMT -7)   
Yep in fact doing the long scope (in the small intesting tomorrow) doing prep right now so can't talk much
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 10/23/2008 7:04 PM (GMT -7)   
That is one place I don't want it! I already have some constriction like episodes with Fibromyalgia in my throat!

Please tell me since you are on Humira that someone has done a chest xray on you as well!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 10/23/2008 8:11 PM (GMT -7)   
On occasion, I have what I feel is an ulcer in my throat. It really hurts to eat or drink, and of course orange juice is a real killer. Also, when I drink, I feel a painful pressure building in my throat (not sure how else to describe it). After a week or two, it seems to heal.

lamb61
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Date Joined Jan 2005
Total Posts : 1719
   Posted 10/24/2008 3:16 AM (GMT -7)   
Oh yeah. I was dx with cd in my esophagus about 3 years ago. I was having "chest pains" when I ate or drank, I was also in a really bad flare at the time. There was a spot of granulomas in my esophagus about mid chest. I was give steroids short term and right after that I had started Remicade. I didn't have alot of mouth/throat/esophagus issues while on cade, but they've all come back after being off it. Basically, I have to try and avoid sweets that seems to be my big trigger. I've never been given any other drugs for it unfortunately.
 


Jeny
Regular Member


Date Joined Feb 2004
Total Posts : 437
   Posted 10/24/2008 6:05 AM (GMT -7)   
I've been worried about this also. Earlier this year, I got an abcess in my throat - nothing else wrong with me- and asked if it could be my CD and they were like..."well, u've never had it there before, it's probably not Crohn's" Well..i've gotten the feeling like it was coming back a few months later...and it went away. Now I had it really bad earlier this week, was then dx'ed with strep throat...but it was really bad on the side the abcess had been on. all swollen and stuff. i don't know...something...call it a gut feeling, tells me it's my CD, but no one will believe me. This past time, I was coughing up blood clots and tissue. I'm going to mention to my doc again I think. Ever since the abcess I've been more gaggy that usual.

Crohn'snme
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Date Joined Feb 2007
Total Posts : 734
   Posted 10/24/2008 10:37 AM (GMT -7)   
Good Morning Everyone, Thank-You so much for your replies.  I haven't had a chest xray while on Humira?  I started it in May after being sick for 5 months and Remicade wasn't working.  My crohn's basically spread everywhere.  Do you think I should get an xray?  I noticed I'm winded when playing tennis and thought it was my asthma?  My procedure is the 17th of November, soonest I could get in.  Oh and another new sore today.  I too cough up the same thing every two days, with tissue.  It's bad.  I've had crohn's in my mouth, not my throat though? Hmmm I'm worried that Humira isn't working all that well, then what are my options for meds???

Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 10/24/2008 11:45 AM (GMT -7)   
I have also had cd in throat and esophogus. I use Oracort steroid dental paste for ulcers in my mouth. It works within 24 hours. Also, try drinking chamomile tea. That will also help.

Sorry for you, I know how much it hurts. It's nice to know that others have been there/done that and have compassion and understanding, eh?
The sores on your legs are likely erythema nodosum. Many of us crohnies get them. They are signs of inflammation in your body and ongoing sickness. They shouldn't be too concerning but they may hurt like bruises, yes? I've often had them and they look like someone bumped your legs with a hammer a few times. You're right, they take a while to go away.

Best wishes.

Post Edited (Roni) : 10/24/2008 12:48:14 PM (GMT-6)


Crohn'snme
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Date Joined Feb 2007
Total Posts : 734
   Posted 10/24/2008 4:30 PM (GMT -7)   
Roni, Thank-You for your response. Also, for explaining the legs sores. Are you from Canada? Eh? I will ask my doctor for the Oracort, it's a prescription?? Appreciate the information very much!

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/27/2008 4:49 AM (GMT -7)   
oral ladocaine and karaphate help as well.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 10/28/2008 12:32 PM (GMT -7)   
I should clarify, it's in the throat where you can't see it.  I'm thinking about changing doctors since they can't do my scope till the 17th.   I never get to see him only his Nurse Practitioner.  I saw him last time when I had my colonoscopy.  The doctor I'm thinking about going to left the practice my current doctor is in.  Hard decision though.

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 11/14/2008 5:07 PM (GMT -7)   
So, I went and got another opinion.  The new GI said to stay with the GI I have, he's really good.  To have a scope done, which is Monday.  I also, had a chest x-ray and tb test both negative. 

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/14/2008 5:24 PM (GMT -7)   
Hi Wishing you the best for your scope and hope you feel better soon. Been wandering how your doing. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/15/2008 6:13 AM (GMT -7)   
Good luck with your scope. I am assuming EGD? You might want to ask for the long 18 ft scope, the normal one only visualizes the first two 1/2 feet. The good news is that your chest x-ray and tb test are neg, because with crohns in your throat and e the inflamation can spread to your lungs and heart. This doesn't always happen but I believe in telling people what could happen because no one wants to think their nuts when strange stuff happens.
Please let us know the results.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


georgiabeach
New Member


Date Joined Dec 2007
Total Posts : 8
   Posted 11/15/2008 6:54 AM (GMT -7)   
I have been lurking during this discussion, because I am having the same problem.  I hope MMMNAVY will reply, or anyone else who has had this.
I was dx w/Crohn's about eleven months ago and had a 14 day hospital stay.  Once I got straightened out, I have done well and continue to teach school.  I take Imuran, Pentasa.  about 4 weeks ago my throat broke out in ulcers.  Negative strep test.  Negative viral herpes test.  Doctor consulted w/my GI doctor, who confirmed that Crohn's can present this way.  After a painful week, things calmed down.  The ulcers were all over the uvula.  Has anyone lese had this?
 
Now that they are gone, my Crohn's symptoms are beginning to return in a normal way, like they were when I first was sick.  I had been doing very well for months, and all of a sudden, it comes back.
 
Another new problem is that I have very sore lymph nodes in my neck.  They are so sore I cannot sleep and take Advil during the day.
I looked all over the internet and I do not see this as a symptom of Crohn's.  Has anyone had this? 
 
Thanks for help of anyone out there.  I really want to avoid having to miss work if I can, since I had to miss over a month straight last year. 
 
---Melonie 

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/15/2008 7:28 AM (GMT -7)   
Well taking advil will make the symtoms worse lower in your GI tract, stick with tylenol. If you cannot sleep I found that codiene cough syrup (the precription stuff) works for me. But like I said oral ladicaine and karafate help. (my phara makes this up for me)
I suspect that with the lymph nodes (and having been a teacher myself) that you might be fighting an infection that just hasn't declared itself yet. It can happen in crohns that the lymph nodes are involved with your inflamation. Like if your abs are distended the lymph nodes in your groin might be sore.
I wonder have you developed a cough when you lay down yet?


Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 11/15/2008 7:31:18 AM (GMT-7)


mom1760
Regular Member


Date Joined Oct 2006
Total Posts : 87
   Posted 11/15/2008 8:38 PM (GMT -7)   
I have had a very bad week.....I went to the doctor on monday because saturday i started having chest pain while i ate or drank anything, he wasn't sure what was going on.Well Tuesday i woke up and the pain was awful and i paged the doctor and he sent me out to the er.They did chest x-rays and a ct-scan and ran dye through my lungs to check for emboli ( i have a family history of them )Well they didnt show anything but inflammation.They gave me some medicine and 8 hours later i was on my way back home.Wed i was still written off work and i went back thursday and had a doctors appt.I told him i didnt feel any better.Well Friday i got up and got ready for work and was not feeling well at all since i had already been off work 3 days with no pay I was trying my best to go to work.....well needless to say they took me by squad to the er from a gas station.I had pulled over because my pain was so bad and a sherriff was getting gas and came and helped me.The er was thinking maybe my crohns was also in my esop. I have never had an endosocopy done.So they shot me up with morphine and a few other drugs and gave me a gi cocktail with lidocaine.I don't know what's going on with me I have to call my GI doctor monday and see what he says.It is still there i have been living off soup since this started and have lost weight.If i try to do anything i get winded and my pain starts.
dx in oct 2006
entocort ec 9mg 1xday
remicade 10mg per kilo every 6-8 weeks
phenagren every 8 hours
dycyclomine 20mg 3xday
iron 325mg 2xday
calcium supplement
hydrocodone/apap 5mg/500mg 1-2 tabs every 4-6 hours
hydroxyzine 25 mg 1 tab every 4-6 hours
glycopyrrolate 2 mg every 8-12 hours


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/16/2008 7:37 AM (GMT -7)   
Ok when you said chest pain I was wondering about esphogeal spasms (they can be mistaken for the pain of heart attacks, but that really does explain your pain), and so have them give you a bottle of gi cocktail to take home (at the very least). (gi cocktail is made up of oral ladicaine, maylox, and usually benadryal, there is another drug they can use but that is what my doctor gave me) and I and you can take multipule doses.
I think it is time for an EGD, preferable get the long one done so you have more information.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


mom1760
Regular Member


Date Joined Oct 2006
Total Posts : 87
   Posted 11/16/2008 7:43 PM (GMT -7)   
on top of everything else they switched my insurance plan at work and they dont cover my remicade anymore so now i have to start the appoval mess all over again and hope and prey that the humira works it may and it may not.It seems to always be something I still can't eat unless i want to hurt in my mid chest right about my sternum.I am going to call my gi tomorrow and let them get the next step going.
dx in oct 2006
entocort ec 9mg 1xday
remicade 10mg per kilo every 6-8 weeks
phenagren every 8 hours
dycyclomine 20mg 3xday
iron 325mg 2xday
calcium supplement
hydrocodone/apap 5mg/500mg 1-2 tabs every 4-6 hours
hydroxyzine 25 mg 1 tab every 4-6 hours
glycopyrrolate 2 mg every 8-12 hours


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/17/2008 6:12 AM (GMT -7)   
Oh I am so sorry! Yes call, your gi and also maybe you can get a bottle of gi cocktail at home. Plus I would suggest thinking about heartburn meds because I am wondering if your chest pain is coming from heartburn.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


mom1760
Regular Member


Date Joined Oct 2006
Total Posts : 87
   Posted 11/17/2008 1:14 PM (GMT -7)   
I am on a medicine for that.I am fine as long as i dont eat anything and liquids arent as painful.I called my gi and left a message and i am waiting for his call.
dx in oct 2006
entocort ec 9mg 1xday
remicade 10mg per kilo every 6-8 weeks
phenagren every 8 hours
dycyclomine 20mg 3xday
iron 325mg 2xday
calcium supplement
hydrocodone/apap 5mg/500mg 1-2 tabs every 4-6 hours
hydroxyzine 25 mg 1 tab every 4-6 hours
glycopyrrolate 2 mg every 8-12 hours


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/17/2008 1:18 PM (GMT -7)   
which med?
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


mom1760
Regular Member


Date Joined Oct 2006
Total Posts : 87
   Posted 11/17/2008 4:49 PM (GMT -7)   
omeprazole 20 mg they gave me nexium but my insurance doesn't cover it it was 184 dollars so they said they could do this med for 25.My gi doctor never did call me back today it ticks me off because i called him at 9 something this morning to make sure he had time. so now i get to sit through another night of not feeling good.
dx in oct 2006
entocort ec 9mg 1xday
remicade 10mg per kilo every 6-8 weeks
phenagren every 8 hours
dycyclomine 20mg 3xday
iron 325mg 2xday
calcium supplement
hydrocodone/apap 5mg/500mg 1-2 tabs every 4-6 hours
hydroxyzine 25 mg 1 tab every 4-6 hours
glycopyrrolate 2 mg every 8-12 hours

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