Now I have CD in my mouth & stomach

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dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/5/2007 3:30 PM (GMT -7)   
Hi everyone, I haven't been around for awhile. I've been feeling pretty lousy. The doctor gas done a whole bunch
of bloods. My gastrin levels are very high, it seems that the disease has really gone systemic. My mouth has been
badly affected, and she's fairly sure it's also in my stomach. I have to wait while she does some research.
How's everyone else doing? I hope this hot weather has not knocked the stuffing out of you all!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 9/5/2007 3:36 PM (GMT -7)   
Vicky, I'm so sorry to hear this news, no wonder you have been feeling so unwell. What course of action are they going to take, or are they still deciding?
In the meantime I'm sending you a [[[[[hug}}}}}}}}}]] I know you've had a rough few weeks.
Tess

JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2044
   Posted 9/5/2007 4:55 PM (GMT -7)   
Hi Vicky,

I'm also sorry to hear this. Last week I had an episode of multiple tiny blisters under my tongue that were so painful, but they've cleared up. It made me think about what having it in my mouth would be like. You have my heartfelt sympathy.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 9/5/2007 7:24 PM (GMT -7)   
Have a nasty blister on the side of my tongue tonight. Since I grit my teeth at night and wear an upper denture, I'm hoping I just irratated or possible chomped on my tongue. Usually do this when I'm under stress....which work is causing right now. What does the CD in the mouth look like?
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Remicade, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain.  Lactose Intolerant?
 
 
Attitude: When I stand before G-D at the end of my life, I want to be able to say; I used every talent you gave me in a positive way to help others along their way!


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/5/2007 7:59 PM (GMT -7)   
It's hard to describe what my mouth looks like, at first we thought I'd got a yeast infection, but there was no white stuff on my
tongue, which is the usual indication of oral thrush, but my tongue, inside the cheeks and gums were, are red and very inflamed.
There is lots of discomfort when I eat or drink, and my gums bleed when I brush my teeth, although I have no dental issues.
I would say that my tongue looks like a creator and the inside of my cheeks and gums are bulbous, if that makes sense. The
mouthwash I've been given is a mixture of 4 ingredients, antibiotic, lidocaine nystatin & benedryl. It's now starting to ease it.
As far as my stomach goes, I'm not sure. about a month ago, a sbft showed gastritis, but when my doctor did gastrin level
check of my blood, she said because it's so high, it would be more consistent with crohn's, especially now I have it in my mouth.
However, she's researching, and will let me know my next course of action.
I would just like to say thanks for you concern, and I'm sorry that I have to post in a negative way yet again. I'm sure I'll get
there in the end. Lots of love to you all..........
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/5/2007 8:09 PM (GMT -7)   
I forgot to say that I'm still on a maintenance dose of 20 mg of prednisone, I swear that darn drug makes my mouth worse!!!
I'm not allowed higher doses because of my bone density. Talk to you later........
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 9/5/2007 10:44 PM (GMT -7)   
Vicky,
I have crohns in my esophagus.(as well as in my small intestine).....had a serious flare a few years ago....had the sores all over my mouth as well.....I found it so painful to even swallow my own saliva. Thankfully after a few weeks in hospital it was over and I was able to eat normally again.....I've been lucky not to have another flare up of that nature.'
I am praying for you, and sending you a heartfelt hug....if only hugging could make all our "bobos" go away , what a wonderful world this would be.

Are you able to eat? Watch out for dehydration....when are you seeing your GI again?

Much luck....love and prayers

Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/5/2007 11:39 PM (GMT -7)   
Hi Vicky Glad to hear that the medicine is starting to work for you hope it clears up soon .What symnptoms were you having in your stomach? I found out today I have high gluocose so no sugar for me for awhile trying to get off the pred. Seems like there is lots for a person to think about when it comes to CD. Keep in touch and let us know what treatments your Dr. puts you on for the stomach of course she isn't sure from what you said so hoping that it's not there.lol gail

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/6/2007 9:57 AM (GMT -7)   
Gail my symptoms are much the same as pancreatitis pain, the doc ruled that out, it's high epi-gastric pain, lots of
pressure from bloating and heartburn that wont quit. I'm now trying a new med called Zegerid, it has a sodium bicarbinate
base, which is helping to quieten the acid down. However, I'm getting some renal pain as well so I don't know if the added
sodium is making nice calcification in my kidneys. I also have small calcium deposits under my skin, especially around my
knees and thighs. To be honest guys I really don't know whats going on LOL.
Tess and Mary thanks for the hugs, they do go a long way in helping with the bobos!! Stay well.......
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 9/6/2007 2:44 PM (GMT -7)   
Vicky,
I hope this new med is going to give you some relief, and gets things under control for you, I can only imagine how miserable its making you feel. Have you lost much weigh?
{{{{{{{{{hugs}}}}}}}}
Tess

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/6/2007 3:30 PM (GMT -7)   
Geez Vicky, it never ends does it? I hope you can get this under control soon. Try and keep us updated, but don't stress about it.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/6/2007 5:01 PM (GMT -7)   
Thanks Tess, I haven't lost anymore weight but maintaining my usual weight even though I'm on pred.
Judy it's so good to see your name! How are things going for you? Are you still using the wound vac?
Any thoughts about going back to school? I must admit I admire and envy you. When I was 18, all those
many years ago!!! I went to nursing school in England. I managed to do 2 years, then my first son was
born. Needless to say, although I was only a few months from finishing, I never did. Spent many a happy
year as the same sort of thing as a LPN, but I always regretted not becoming a staff nurse. However that
was many years ago, and I know I could do it now, but I do think the profession, although still good, lacks
nurses with compassion. There are some excellent ones, but some of the ones I've come across need a
talking to.I have this feeling that you are going to be one of the compassionate ones, that already comes
across in your posts. Anyway my friends I'm running on again, must be a sign I'm feeling a bit better.
I don't know about you guys, but I'm about ready to have my head transplanted onto another body,
you know, a younger one, with all the bits in the right places, boy at my age, that would be fun......
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/7/2007 4:29 AM (GMT -7)   
Yep know how it used to be and the fact everything didn't sag and no thought as to pooping it just came natural .Wow did we really have those days? lol gail

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/7/2007 6:23 AM (GMT -7)   
Like I said, a whole lot of fun, you would be old enough to know what you were doing, but still young enough to enjoy it....
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/7/2007 3:55 PM (GMT -7)   
Bump
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/14/2007 6:21 AM (GMT -7)   
dunny2 said...
Judy it's so good to see your name! How are things going for you? Are you still using the wound vac? Any thoughts about going back to school? I must admit I admire and envy you. When I was 18, all those many years ago!!! I went to nursing school in England. I managed to do 2 years, then my first son was  born. Needless to say, although I was only a few months from finishing, I never did. Spent many a happy year as the same sort of thing as a LPN, but I always regretted not becoming a staff nurse. However that was many years ago, and I know I could do it now, but I do think the profession, although still good, lacks nurses with compassion. There are some excellent ones, but some of the ones I've come across need a talking to.I have this feeling that you are going to be one of the compassionate ones, that already comes across in your posts. Anyway my friends I'm running on again, must be a sign I'm feeling a bit better. I don't know about you guys, but I'm about ready to have my head transplanted onto another body, you know, a younger one, with all the bits in the right places, boy at my age, that would be fun......
Hi Vicky,
 
I got off the wound vac last week.  I was under home health care for 2 months, the wound vac for 5-6 weeks (I've lost track, but I'm sure their billing department hasn't, lol).  I'm finally able to get out of the house, but too late for regular classes this semester, but I am taking a 1/2 semester class that starts in October.  I'm not too worried, the waiting list for Nursing School is long, and I only need a few GE classes.  I was pretty depressed at first, but my son's getting married in early October and it's a busy time so it's probably for the best. 
 
Ahhhh, I wish I would have gone to college right out of high school, I probably didn't have the maturity but the brain power and energy level are a little higher than a pushing 50 student.  I wanted to be a nurse way back when but changed my mind after being a volunteer for a very short time, lol.  Now after being in the hospital it makes me wonder again what the heck I'm doing, lol.  But I did learn the the nurses in the hospital I was at this time around don't hold a candle to the nurses in my regular hospital, and good nurses are hard to find and very important.  I hope I'll be good at it, but only time will tell.   
 
I hope you get all your "stuff" under control soon and start feeling better. 
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/14/2007 8:02 AM (GMT -7)   
Thanks for getting back to me Judy. There's not a doubt in my mind that you'll do well, when it does happen. I'm pleased
that you finally seem to be on the mend, it's been a long hard road that you've traveled this time. Let's hope that remission
will be long. Love & best wishes
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts

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