newbie looking for support

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closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 7/7/2008 1:53 AM (GMT -7)   
Hello everyone. I don't really know where to start. I'm 27 and I *think* I've been living with crohns for a few years now. Unfortunately my family doctor did not pick up on this. A recent trip to the ER is what started the process of being diagnosed with crohns. Symptoms that my family doc never put together and has no idea what they're from mad ...mysterious rash that comes and goes, mouth sores, stomach cramping, diarrhea...I go about 8 times a day or more at the moment...I've been counting since the ER trip, rectal bleeding...which is why I was at the ER, and bleeding when I wipe, back pain, fatigue, high white blood cell count with my last couple of blood works. I think that's all. It's 4:30am so I'm a little tired and not thinking clearly. Anyway I've had these symptoms pretty bad for 2 years, but had them less severe for a couple years before that. Like the diarrhea and rectal bleeding I've been dealing with for about 4 years. In the past couple of months things have gotten worse. The rash and mouth sores are becoming more frequent and the rash is driving me crazy! Not to mention the diarrhea. The rectal bleeding has stopped for now. Since I've dealt with the rectal bleeding for a couple of years I never really go back to the doc for it because they never do anything for it, but this last time I was bleeding really bad for 2 days. I couldn't even see through the toliet water. Normally it's just a little bit, but the more I ignored it the worse it got so I figured it was time for an ER visit. I'm glad I went because the ER doc put all my symptoms together and said it could be crohns. I have hashimoto's disease which is an autoimmune disease and according to the ER doc people with one autoimmune disease are more likely to get another? Anyway I have an appt with a colon/rectal surgeon in 10 days and it's been about a week or two since I was in the ER. The ER doc wanted me in to see the surgeon within a day or two, but thanks to the holiday and it being prime vacation time at the surgeons office I have to wait. The hospital even called to see if they could get my appt moved up, but they couldn't either. Now that I've rambled on here are my questions. Obviously I haven't been officially diagnosed with crohns because I haven't had any tests other than blood work so what tests do they do to officially diagnose crohns? I've read they do a colonoscopy. Also if my symptoms go away by the time I see the surgeon will he still be able to find out if I have crohns? Meaning if they do a colonoscopy and the symptoms have gone away will my colon still be inflamed or whatever? I took a pic of the rash just in case it's gone by the time I see the surgeon. I'm just worried that by the time I finally get in to see the doc my symptoms will be gone and they won't be able to find anything and I'll be stuck waiting to get sick again then waiting for an appt, etc. I guess that's all for now. If you made it through my long post I appreciate it and any advice will help.

mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 7/7/2008 2:56 AM (GMT -7)   
Closure,

Sounds like you've been through a bunch in the past few days. Hang in there.

There are a number of ways that can positively diagnose Crohn's disease. Most common is with a colonoscopy. During the scope procedure, they can take some biopsies of the intestinal lining.
There is a thing called the Prometheus test, which is a blood test. They are apparently really expensive.
Also, by looking at the symptoms and history, a good doctor could probably come to a pretty good conclusion.

Probably your most likely to get a biopsy done with the colonoscopy. Having an actual piece of the diseased intestine is probably going to give you the most reliable results.

If all your symptoms have cleared up by then, it could be a little harder to diagnose, but chances are things are not going to clear up that fast.

Sounds like you have done a lot of research, and that is a good thing. The more information you can get and the more informed you are, the better you will be prepared for whatever comes. Hopefully things will improve. If it is Crohn's disease, understand that it can be effectively treated. Hopefully you will get some help soon and can start to get some relief from the symptoms.
Matthew McKenna,

"I'm just along for the ride."


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 7/7/2008 5:23 AM (GMT -7)   
It's a shame you have to wait that long for your appointment...I've waited the past week just to get in and start a new medication, and I definitely understand the blood loss, lack of sleep, and frequent bm. I don't think I've ever had such rough nights..

I really really hope they can get you feeling better. I know this is a really horrible thing to go through, and the worst part(aside from the horrible pain and fatigue) is that most people can't understand even when you try and help them to.

Keep us updated on how you're feeling.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/7/2008 6:20 AM (GMT -7)   
I think finding a GI would be a good idea. I am assuming the surgeon is for the colonscopy? Please take care and know you are not alone.
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...


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 7/7/2008 7:42 AM (GMT -7)   
I *think* the colon/rectal surgeon is a GI. Not positive though. My appt in 10 days is just a general appt and from there he's going to decide what to do with me next. The ER doc recommended the colonoscopy so I'm assuming once he gets the notes from the hospital he'll see that and schedule me for one....more waiting! mad I hope I can get the tests done faster/sooner than I got this appt. Thanks for the replies!
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, and in the process of being diagnosed with crohns. Too many meds to list!


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 7/7/2008 8:17 AM (GMT -7)   
Got motivated, the bleeding is starting again, and called the colon/rectal office and this receptionist was much more helpful than the last. I told her my symptoms and what the ER doc said and she's getting me in this Thurs!! I'm only going to see the PA, but they can schedule the colonoscopy so I don't have to wait forever! I've never been so happy about an appt like this lol.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, and in the process of being diagnosed with crohns. Too many meds to list!


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 7/7/2008 9:38 AM (GMT -7)   
Sounds like you got through to someone with their brain fully functioning. Seems like sometimes that is a real battle. Getting past the receptionist can be a real battle sometimes. Glad to hear you got an earlier appointment.
Matthew McKenna,

"I'm just along for the ride."

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