Kind of frustrated

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indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 12/23/2007 12:03 PM (GMT -7)   
I just need to vent.  My internist thinks I either have the very beginnings of IBD because my scopes found inflammation but my GI doesn't think I have it because the biopsies could not be "linked" to either UC or Crohn's.  I honestly feel like I am sitting on the fence because I have symptoms and they cannot find out why.  I guess it can take time to officially be diagnosed with one or the other...I am just frustrated because one doctor thinks one thing and the other thinks another.  Maybe others here have heard the same kinds of things?
 
I wonder, too, what if something is beginning but they cannot officially tell that yet and all my symptoms get worse until they CAN verify one or the other, and I go without treatment?  It is frustrating when you know something is wrong but they cannot figure it out.
 
I have been getting mouth sores like crazy lately as well.  And boy do they hurt!  My throat has a weird red bump in it but it doesn't hurt (think I mentioned that in a previous post). Still have a little of the Episcleritis going on as well. 
 
Anyhow thanks for letting me vent!  You all are great and I really appreciate all your answers and replies! 

stuckonyesterday
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 12/23/2007 3:21 PM (GMT -7)   
Oh my goodness! I have had horrible mouth sores since the very beginning of August and just found out 3 weeks ago that I have Crohn's! I hope you find out what's wrong...stick with it and good luck! I have to ask...do you know any way to get rid of the sores or do you use anything on them??? I'm dying for someone to help me with that!!! Thanks so much.

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 12/24/2007 2:56 AM (GMT -7)   

I have heard there is a mouthwash you can get for the mouth sores.  Honestly I have not treated mine but I should because some of them last a lot longer than other ones do.  If I can find out what kind of mouthwash it is, I will post it on here for sure for you! 

Thank you for replying and best of luck with this!  It sure isn't fun!

 


stuckonyesterday
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 12/24/2007 11:56 AM (GMT -7)   
No problem! Yes actually there is something called Orajel. It's a mouth sore rinse that actually at first worked wonders for me so you may want to try it. I think I'll start up again..guess it can't hurt. Also there is another one..I can't remember what it's called but it looked and tasted the same. I'll post when I find out what it is. And my dentist reccommended Cepacol (sorry if the spelling is a little off) mouthwash because it's good to help numb the pain a lot. I've used the yellow one..didn't taste horribly bad and actually did help a bit. Ugh the dentist first thought they might be herpes sores brought out by stress or something? Before we knew I had Crohn's I mean. All that poking and prodding was no fun! I hope some of that helps you though! :-)

Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 228
   Posted 12/24/2007 1:06 PM (GMT -7)   
I had a flare up complete with mouth sores.  Painful sores.  They did an endoscopy and found sores throughout my plumbing.  I was admitted to the hospital and they put me on an IV for about a week.  After being released they put me on a series of meds which only helped for a short time.  Sorry for the horror story, but the only advice I can offer is to have it treated as soon as you can.  I wish you the best.

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 12/24/2007 2:04 PM (GMT -7)   
It took me 10 years to get treated. Yes, it did get worse. I started out with no gi symptoms, just pain. Colonoscopy normal. I really can't blame them at that point. Gradually I developed symptoms and finally found a gi doctor willing to do a trial of medication. Based on the positive response to that, I have been diagnosed with IBD, most likely crohn's. I also have the mouth sores all my adult life. They improved tremendously when I had food sensitivity testing done and eliminated the offending foods. But I still get them from time to time. Joint pain improved also.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 12/24/2007 2:21 PM (GMT -7)   
I had an rx for a lidacane mouth rinse that was heavenly.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil and vicidin as needed.


stuckonyesterday
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 12/24/2007 6:53 PM (GMT -7)   
yogaprof said...
I had an rx for a lidacane mouth rinse that was heavenly.

Sorry but this is probably a really stupid question...what does "rx" mean? lol I'm new to all this medical stuff...I've never really had any problems before or been sicker than a common cold or the chicken pox or pink eye or something like that. I'm gonna take a wild guess that it means prescription? But I'm probably wrong lol...hope I don't look too dumb tongue

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 12/25/2007 1:30 PM (GMT -7)   

RX does mean prescription and you do not look dumb!  :-)

Besides your typical colds and stuff like that I have not been really sick myself until earlier this year.  It has been a weird year, too.  I had meningitis back in April then episcleritis of the eye which started in June or July and I STILL have it to a degree.  I hoped all along that the episcleritis was related to the meningitis but my internist believes I have IBD (as mentioned above).

I am REALLY hoping 2008 is going to be an awesome year as far as health goes!  I wish the best for everyone else on here as well!  I am so dang sick of doctors!  Honestly I feel like certain members of my family think I am a hypocondriac and it really hurts me because I am not making anything up and it is SOOOO frustrating to have something wrong with you and doctors cannot figure out what is causing it. 

Thanks again for all your replies!  I appreciate all of you!

Merry Christmas and Happy 2008!!!

 

 

 

 


stuckonyesterday
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 12/25/2007 10:37 PM (GMT -7)   
Aww thanks :)

Yeah I agree with you completely! My best friend has been sick like her whole life with horrible things nobody can figure out and I was always like how does she do it with all the doctors and needles and all. Now I'm getting a taste of it. I hate needles and blood and now it's just a common thing...stick out my arm, make a fist, and look the other way. And jeez I was lucky if I even got to the doctor every year...I was always fine and I never realized how much I should've appreciated it. Just before this all started I'd had my annual checkup and was okay. Then all of a sudden I was seeing all these specialists and getting all these new exams...like my first time at the obgyn which was so awkward and uncomfortable for me. That's another thing I forgot to mention with my case...I haven't had a period since July 17th. The obgyn thought a combination of low weight, stress, and the internal problems. But I think now she may want me to start the pill or something to bring it on? In a way I like not having it right now cause with the sore bum everytime I make a trip to the bathroom I can't imagine wearing a pad =( But anyway, yes I'm also sick and tired of being sick and going from doctor to doctor to see on their faces that they aren't really sure what to do with certain things so they just keep piling up the prescriptions =/

I'm hoping the same for 2008 as well...we toasted to it for Christmas. My mom just had a mini stroke with all the stressing over me =/ And what you said about people thinking you're exaggerating, I know exactly what you mean. People thought that since I was valedictorian in high school I was just being a perfectionist in college and I was telling them NO I'm just trying to get the work DONE so I can get the credit, you know? How am I making it u if I'm holding my stomach in pain while eating, sitting, or doing anything?? When I was diagnosed with Crohn's, so many of those people were like "Oh...." ugh I'm so glad to be rid of the lectures about "stop stressing, you're bringing this on yourself"
Female. 18 years old. Symptoms began 8/1/07. CT Scan clear. Chest X-ray clear. Endoscopy on 12/1/07 showed some gastritis; colonoscopy on the same date showed Crohn's in the biopsy. Symptoms include: pain in the gut, mouth sores, excessive gas, a sore bum, anal skin tag, and a cough that's lasted for months. Am currently on: Asacol, Ferrous Sulfate, and Albuterol; am supposed to start Azithromycin and chewable Acidophilus; and Citrucel and/or Colace if constipation occurs.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 12/26/2007 7:31 AM (GMT -7)   

Thank you soooo much for your reply stuckonyesterday!  You totally describe how I feel right now!  Looking back, there were times I could go years without a sickness--not even the flu or anything like that even!  Just your usual common cold!  I sure took that for granted!  It is so frustrating when people do not believe something is wrong.  I really feel like saying "don't judge me until you have gone through what I am going through. "

I have irregular cycles myself.  I am not underweight, but my cycles seem to come and go as they please.  It is nice to skip a month or more, so I can relate from that aspect. 

I am so sorry to hear about your mom!  I hope and pray she is healing and everything will be ok! 

Honestly, with how I am about money and that aspect, I am really surprised certain family members think I am making stuff up.  Who on earth would want to pay a co-pay every couple of weeks, or more, to see a doctor, if you didn't have to?  That is what I don't understand!  I am sick of going to the doctor, taking time off work and spending money on co-pays.  I am very thankful I have insurance--but at the same time, I dread seeing that co-pay money go "bye bye." 

Thanks again for letting me vent!  :-)   

Best of luck to you, your mom, and your family in the new year!

 

 


stuckonyesterday
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 12/26/2007 7:42 PM (GMT -7)   
No problem! It's nice to see I'm not alone. I totally agree...I know I'm lucky not to have cancer or another fatal illness...but people who just dismiss this don't see me yelling out in pain to my mom. Like you said, when they feel it an go through it...THEN they can comment on it.

Yeah I am at least glad I don't have to get those cramps right now on top of everything else! Speaking of weight, that's another thing too. I'm usually around 95ish pounds...with all this stuff recently I'm around 86 now =/ So many people assume I have an eating disorder and don't think I eat until they actually see me eat more than them and not go to the bathroom so they can't say I threw it up or something. Oh and they say I'm so lucky to have the fast metabolism and eat whatever I want and not gain weight but I try to tell them on the other end...it's not fun never having any clothes fit and always feeling bony and all =/

Yep, obviouisly my parents are paying since I'm just 18 but why would I keep going along with doctors and needles and blood and all that stuff I hate for no reason? And usually those people who think you're overreacting are the ones who make a big deal out of a common cold. It sounds so stupid but now I actually get jealous when I hear people have colds because I know they'll get better and back to a normal life within a week or so.

Thanks for letting me vent too, and for your prayers for my family!! =) Good luck to you too!
Female. 18 years old. Symptoms began 8/1/07. CT Scan clear. Chest X-ray clear. Endoscopy on 12/1/07 showed some gastritis; colonoscopy on the same date showed Crohn's in the biopsy. Symptoms include: pain in the gut, mouth sores, excessive gas, a sore bum, anal skin tag, and a cough that's lasted for months. No menstrual cycle present since 7/17/07 (& am not sexually active). Am currently on: Asacol, Ferrous Sulfate, and Albuterol; am supposed to start Azithromycin and chewable Acidophilus; and Citrucel and/or Colace if constipation occurs.

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