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Crohn's Disease
Does anyone know what all of this means?
Need some help - 100.0% - 1 votes
Have you had the test where they go into the small intestines. - 0.0% - 0 votes
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Posted 2/4/2011 8:40 AM (GMT 0)
cry I am newly diagnosed with Crohn's disease. I have a high titer from the Prometheus blood work up. They show me to have multiple erosions in the transverse colon. Vascular-pattern-decreased mucosa ascending colon ancecum. The biopsies from the colonoscopy show active colitis and regenerative changes in traverse colon. Mild to moderate active colitis and regenerative changes in the Transverse colon biopsy. Mild active colitis and regenerative changes in cecum and ascending colon biopsy. I had a polyp removed as well. More tests show that the duodenum biopsy demonstrates small intestinal mucosa and sub mucosa with Brunner's glands. It shows Microscopic examination of the antrum biopsy to demonstrate gastric mucosa with antral type glands. Focally, few lymphocytes cluster around the infiltrate glandular epithelium. It also shows the proximal transverse colon erosion and demonstrates large intestinal mucosa with a mild to focally moderate, active inflammatory infiltrate with neurtophils more prominent in the lamina propria than in the epithlium. There are also regenerative changes with sight crypt irregularity and mild reactive atypical of the epithelium and much more that I won't put you guys through. I'm going in for a test that allows them to biopsy the small intestines. Has anyone had this test done? The doctor told my husband very quietly that it is Crohn's and could be much worse but he did not want to scare me. My test is set up for the 21st of this month. I don't understand all of the involvement. Does anyone out there know what all of this means. I have been looking on the Internet for a week trying to figure this out with no luck. The doctor, whom I no longer see didn't tell me what all of this means. He did the pill cam and send me to a new GI so he could do the test to look into the small intestine. I do know but I am in a significant amount of pain on the left side. It goes from under my ribs to my hip. Help please!

Post Edited By Moderator (Nanners) : 2/4/2011 6:57:24 AM (GMT-7)

Posted 2/4/2011 8:58 AM (GMT 0)
Sorry I didn't realize my post was not suppose to be this long.
Posted 2/4/2011 9:01 AM (GMT 0)
I don't understand why you have been given all this technical detail?

I am not clear, either, on exactly what you are wanting help with. Personally, if you are trying to decipher the information above, I wouldn't: often this sort of information is intended for pathologists or other doctors and really isn't useful or helpful to the layperson.

It sounds to me as if the doctors have a rough diagnosis for you, but are still trying to determine the extent and severity of the disease. Is that the impression you have? If so, perhaps just chill until the 21st... and perhaps you could ask for the results to be given in plain English next time, so you can understand them.

All the best, and welcome,

Ivy.
Posted 2/4/2011 9:06 AM (GMT 0)
Your post was fine :-)
Posted 2/4/2011 9:19 AM (GMT 0)
Ivy 6 : I def need to chill. I'm making myself a nervous wreck. I am going to ask the new GI doc to explain it to me. I'm just waiting until the 15th and on my follow up I will ask what all this means. Just needed to get it off my chest and see if someone out there had a clue of what it all means. The doc says this is the final test so I'm happy about that. I had to go and get all my medical records because the staff at the old GI office don't know how to use a fax machine to send the records to the doc they referred me to. lol
Posted 2/4/2011 9:36 AM (GMT 0)
Oh, so that report wasn't actually intended for you? That's ok then. I would have been *furious* on your behalf if it had been given to you intentionally.

I reckon doctors would manage to find a way to describe a perfectly-healthy piece of tissue in a way that sounds completely terrifying...

btw, re your doctor speaking quietly to your husband, YOU are the patient here. You are a fully-functional adult, and YOU are the one in charge, and YOU are the person who is entitled to hear your diagnosis first, without the blokes deciding between them what you "need" to hear and what you shouldn't hear about in case it will scare you.

It is supposed to be the other way around: you "own" the information, and you're the one who gets to decide how much your husband gets to hear, ok? It sounds as if you're just starting the diagnostic process, but please remember that you are in charge here. Please don't let the system take that away from you.

I hope all of that makes sense: I'm writing with a heavy cold, and it is mucking up my mental processes :-).

Ivy.
Posted 2/4/2011 9:46 AM (GMT 0)
You are right. I was a little upset about the doctor telling my husband that info. That is something that should have been told directly to me. He really meant well though. He just has one of those over barring personalities. I was very impressed with him. I'm from Houston. He is one of the top GI doctors in the Medical Center so I feel very comfortable with any tests he performs. He teaches at Baylor College Of Medicine and has a fellow and an NP that also come in the room. So you get 3 very intelligent heads together at once. I feel like I'm on "House" when I go there. lol
I hope you feel better soon!
Do you have CD and if so how long have you had it? If you don't mind me asking.
-Kristy
Posted 2/4/2011 10:03 AM (GMT 0)
What's an NP, Kristy? I'm in Australia and don't know all the US terminology.

I was diagnosed in 1993, so this is... um... my eighteenth (?) year of official life with Crohn's, though I was symptomatic before diagnosis, of course. I was in my mid-teens when I was diagnosed, so have been doing this for more than half my life now :-/

I'm glad your doctor is a real expert, but he still shouldn't have spoken to your husband before he spoke to you!!! I'm not sure what the law is there, but I'm pretty sure that what he did is illegal here.

So is it snowing there?? There's a thread here about the snow storms in the US, and someone said it had snowed in Texas, which astounded me.

Ivy.
Posted 2/4/2011 10:27 AM (GMT 0)
No snow just ice everywhere. Not normal here at all.

Yes it is illegal here for the doctor to say what he did.

I have had CD symptoms every since I was about 12 years old. I'm 31 now and after 2 to 3 years of diarrhea and 22 pound lost, in 6 months, for no reason I finally went to the doctor. I have to take B-12 shots weekly, get iron infusions and eat a lot of protein. Insure seems to help me put on a little weight.

A NP is a Nurse practitioner. They are registered nurses and they have to take 6 years of collage.
Posted 2/4/2011 1:45 PM (GMT 0)
Like Ivy said, I don't have a clue what your report says, that report is for your records. I've been married for 31 years, and my wife has never been into dr's office with me, regarding my cd, I've had this going onto 41 years with 4 surgeries

Posted 2/4/2011 2:01 PM (GMT 0)
Hi Positive and welcome to Healingwell. The majority of folks on this forum have Crohns and a few are either mom's or spouses of Crohnies.

I agree the report is just medicalese meant for the doctor more than from you. You have a diagnosis of Crohns now and now is the time to start treating it.

I hope the docs can figure out the right meds for you and get you on the road to remission soon. Hugs!
Posted 2/4/2011 4:38 PM (GMT 0)
Just wanted to say Hi and welcome! Please don't drive yourself nuts right now trying to figure everything out, but do educate yourself on your disease and figure out what works best for you! Good luck!
Posted 2/4/2011 6:10 PM (GMT 0)
Hi Positive! I'm in Houston too. I'd love to know who your GI is (I've been through 3) but I don't want to gossip. ;-)

From what the pathology report says, I think the important take-home information is that you have a pretty solid Crohn's diagnosis. You have pain, and I'm guessing you have other unpleasant symptoms (diarrhea? bleeding? fatigue? joint pain? nausea? weight loss? eye involvement? skin involvement?). Has the doc started you on any medications? How long have you been trying to get a diagnosis?

There is a lot of great support here, and loads of good info re: medications, supplements, dietary advice, etc.

Stick around and ask focused questions!
Posted 2/5/2011 5:13 AM (GMT 0)
kazbern
The doctor is Dr. Atilla Ertan-Gastroenterology
6560 Fannin, Suite 2208
Houston, TX 77030
PH: 713-794-0001
www.atillaertan.com
Check out his web site.
Yes to the pain, diarrhea, bleeding, fatigue, joint pain(but also have Fibromyalgia), lost 22lbs. in 6 months or less, need to go to the eye doc due to dry eyes and blurry vision even with my glasses, no skin involvement. I am on Pentasa 4,000mg per day. I also take Bentyl 20mg 3x's per day. It's been about 4 months since I first started my testing with the doctors. I have been very persistent. I think the Fibromyalgia is not really a correct dx. I think my pain is from the Crohn's. I wish you luck. Please try out this doctor. He is one of the top doctor in the med. center. I think he may be able to help you out.
Posted 2/5/2011 5:27 AM (GMT 0)
grayeyeblonde
Thank you for the warm welcome!
I am also on Tramadol for fibomyalgia pain and Klonopin to help me sleep. I am awakened so often at about 3:00am with severe cramps and diarrhea. So sorry to here about the bowl perforation. That is what I am a little worried about. They are going into the small intestine on the 21st and it is a balloon procedure that pulls the small intestine up and up until they get to the part that needs to be biopsied. I am going to get a nutritionist to help me out with vitamins and good foods to eat after all the testing is done. I hope you stay well!
-Kristy
Posted 2/5/2011 7:43 PM (GMT 0)
Kristy, thanks for the doc's name, I may check him out.

I think you're probably right, the fibromyalgia diagnosis might go away once you are adequately treated for the Crohn's. Have you been taking the Pentasa very long? I take 3g/day for my relatively mild disease, plus another 1.5 g of sulfasalazine (a similar med). You should also have your vitamin D levels checked; as a Crohn's patient you are likely to be a poor absorber of nutrients, and even though you live in the sunny south, I would not be surprised to hear you were low on D.

If you have left side pain it could be that Pentasa is not the right med for you - I was started on Asacol, which targets a lower part of the GI tract than Pentasa. I hope that you will start to feel a lot better once you get the right meds on board and the right dosage.
Posted 2/9/2011 3:29 PM (GMT 0)
kazbern- I'm allergic to Sulfa meds so no Sulfazne for me. Once the test is done I will probably have some med changes They want me on steroids but I'm not to keen on that Idea. I'll keep you informed. Please lat me know if you go see Dr. Eartan. I really like him. I think I will have him do my maintenance medication instead of the first GI doc. I hope all is well and keep in touch. Tell Dr. Earan you were refereed by Kristy Schroeder.
Posted 2/9/2011 5:30 PM (GMT 0)

Welcome, Kristy!  Those doctor reports can be very overwhelming and very confusing, so it's definitely best to let the doctor explain it to you in layman's terms.  When I review copies of my medical records, there always seem to be so many more things mentioned than what the dr said he found.  I think they just have to be very specific about every detail in some of their reports.  I'm sure the dr can help ease your anxiety by going over it personally with you.   

The dr definitely should have told you the diagnosis instead of your husband, but he didn't necessarily break the law.  Every dr I have has asked me to sign a paper saying who (if anyone) I give them permission to discuss my medical information with.  If you signed one with your husband on there, he didn't really break the law.  Didn't use the best judgment maybe, but didn't break the law.  Also, if they let you bring someone in the room with you, I don't know how that works exactly, but I would think that you are giving verbal permission for them to hear your medical information.  When I took my husband to the ER, they let me in every room with him and obviously, I'm going to hear what's going on.  Many times, the drs and nurses spoke to me directly to make sure the instructions, etc. were understood by both of us.

Welcome to the forum.  You will find a lot of great advice and support here.  

Ivy, Nurse Practioners are kind of one step below a M.D. and many doctor's offices here will have a NP on staff who you can see instead of a dr (most insurance covers them just like drs).  Supposed to speed things up, but I don't know that it really does.      

Posted 2/9/2011 5:49 PM (GMT 0)
Welcome...what it looks like in your first report is the Doctor's report/summary on you for you medical records...so that if someone else were to look or take over your case (like if you moved or the doctor moved) the next doctor doesn't have to start all over again, and knows where to look...it is also a detailed explanation of his findings, including what he noted in this colonoscopy with the pathology reports too...(I worked as a researcher in clinical medicine)...

Oh, and to find out all the different medical people (esp in the US) look here: www.butyoudontlooksick.com/articles/whos-who-in-the-hospital/

I think all have steered you in the right direction...so ask as many questions as you need, don't feel like there is any question too insignificant or too trivial (someone once told me, the only stupid question is the question not asked)...it's a learning process, cuz what is good for one, is not good for another (as you have already found out with the sulfasalzine)...take care...
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