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Not crohn's------endometreosis

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Posted 11/1/2009 6:19 PM (GMT 0)
 

Well I had the surgery, stricture removed, and pathology report came back not crohn's disease, but endometreosis on the outside of the sm bowel, causing the stricture, and mimicking crohn's.  So confused..   suppose i should focus on healing as I have a big  ol' incision, and lots of pain.   has anybody ever heard of such a misdiagnoses?  Great thing i did taking all that prednisone.  Bet that was a great idea?

Posted 11/1/2009 6:36 PM (GMT 0)
It is rare, but not unheard of. Especially if it was in an area that they could not biosy any other way.  What I do hope is that you feel alot better soon.  Pred can be a treatment for endo along with asprin, but it is kinda of an old drug therapy.
Posted 11/1/2009 9:14 PM (GMT 0)
That kind of endometriosis can be a result of blood sugar problems. Have you had tests for diabetes recently? It seems that it occurs when the gut overreacts to blood glucose resulting in hypoglycemia - may be called "reactive hypoglycemia". Here's a link to an article by a doctor who figures that whenever a woman reports bowel problems that follow her menstrual cycle, she has intestinal endometriosis despite other diagnoses:
http://www.infertilityphysician.com/endometriosis/intestinal.html

It is a bit amazing that he cites a New England Journal of Medicine report saying that "5% of all women have intestinal endometriosis".
Posted 11/1/2009 10:24 PM (GMT 0)
I would just be very glad :) Endo is so much "better"
I have both and the endo is under control just by taking birth control pill.

So just be super glad to start with, endo can be so painful but it can also be burned away and it is easier to control.
Posted 11/1/2009 10:36 PM (GMT 0)
just shows how critical the interpretation of the original biopsy is. If they need to remove the bowel to confirm not having crohns thats really poor on the pathologist part. as that's what the biopsy is for. If this is true, as being not crohns, then reoccurance at the surgery location should not occur .. and you should therefore heal without reoccurance. But that raises a very interesting question of what causes the stricture. ic you have alluded to that question.
Posted 11/2/2009 2:05 AM (GMT 0)
It is my understanding that the endo is what caused the strictures, sorry i didn't mean to allude the question. I am Very happy with the diagnos, just looking for information as i have spent the last 19 years studying crohn's disease since that is what i thought i had.
Posted 11/2/2009 2:06 AM (GMT 0)
Keeper, Thank you very much for the link. I find that very interesting. as i said, i need all the help looking for new info.
thanks to all
Posted 11/2/2009 2:44 AM (GMT 0)
That was an interesting article Keeper! I wonder how many women suffer from this without knowing the cause?

Good luck gutrules! I hope you get everything sorted out :-).
Posted 11/2/2009 5:38 AM (GMT 0)
That article still amazes me. If 5% of ALL women have intestinal endometriosis, probably half of the women here have it. Now I'm going to have to check out endo treatments - I bet that the 5-ASA's have some benefit for it....
Posted 11/2/2009 8:10 AM (GMT 0)
I'm not trying to rag at all on some of the replies to this post, but I have both Crohn's and endometriosis and from my experience I have heard completely different information. Not to scare you, but just because the endometriosis has been removed does not mean that it can't come back. I have had three separate surgeries to remove the endo. And I've taken Depo Lupron as well as just trying to go the birth control route. It's incredibly painful and can sometimes create more problems with the Crohn's because it all involves stomach pain/cramps. I'm glad to hear you got a diagnosis though. And if you have super bad pain that isn't being helped by birth control, the surgery sometimes is one of the few things that can get rid of the pain. So I hope you are completely pain free. But definitely check out some literature about endometriosis so you know what you're dealing with. And out of the two, I would much rather just have Crohn's. With Crohn's I can take some Immodium and hope that I take enough that it stops me up. But with the endo it can be so bad that no matter what I do I can't move because of the pain. But then again, it is completely different for each person. They've said that you could have everything covered in endo and not be in pain or you could have it only in a few places and be in tons. It really just depends.

Hope you recover well and can get everything under control. If you have no pain after you heal I would suggest just staying with birth control to keep your endometriosis under control.
Posted 11/2/2009 9:37 PM (GMT 0)
Guess what? The promising new treatments being tested for endometriosis are TNF inhibitors. Looks like some people who have gotten the wrong diagnosis are being treated with cutting edge therapy!!!
Posted 11/3/2009 12:25 AM (GMT 0)
Wow this is an informative post, definitely a good one for all women to read on here, seriously, thanks guys!
Posted 11/3/2009 12:28 AM (GMT 0)
Endo can be nasty stuff. You can learn more about it from the Endometriosis Research Center. If you have/had endo on your small intestine, you probably have it in other places as well. While birth control pills control symptoms in some women, surgical removal (NOT burning!) of the endometriosis is the best treatment for the long term. Many docs claim to be able to treat endo but very few are actually specialists that can help difficult cases.

Hysterectomies do not always help or cure endo especially if it's on organs other than the uterus and ovaries.

Do a lot of research get multiple opinions on any treatment options.

Good luck.
Posted 11/3/2009 12:37 AM (GMT 0)
Keeper,
That is an amazing article! I have never read about a connection between endo and hypoglycemia before. Thanks!
Posted 11/9/2009 4:05 PM (GMT 0)
I have been diagnosed with Endo & Crohn's, I wonder if they aren't related somehow...Never thought of it before today.
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