Ummm... what?

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So I finally had my doctor's appointment this week. (It was on Wednesday.) I'm still in a state of shock.

According to him, I do not have Crohn's, Colitis, IBD or any form of gastrointestinal trouble that he could find.

His answer for the pain, the diarrhea, the blood, the pain, the hemmerhoids and so on is... "Have you seen a gynecologist?"

*sigh*
I am not sure what to do now. Especially now. This past Sunday, I also found out I am pregnant. So now, not only am I trying to eat enough to keep myself going, I'm trying not to take any pain medication because I don't want to harm my baby...

Any advice or help would be really appreciated! I am totally lost here. If I really don't belong here, I will leave the forum and fully understand. I guess I'm just having a hard time accepting that I've been treated for Crohn's for the almost three years now, only to find out that I don't really have it? WTF is that all about?
 
wow Jynxgirl
I guess I would be shocked as well.
are you happy to be pregnant? I want to say congratulations but Im not sure...
I am not sure what to say to you other than have you seen an OBGYN? Im saying that not to be a smart ass but so you can go back and say yes you have and that you have already tried that route.
I think this forum is open to anyone who has questions and need support - you have valid questions...
Take care and I am sure others are still willing to offer support..
 
Congratulations! Babies are cool.

Did you have a test that made him say that? A colonoscopy or endoscopy? Did it come out clear? Or did he just blurt that out at your last appt... if it's the latter, I think I would consider another doctor.
 
I don't think you need to leave the forum over that. Congratulations on your pregnancy! Since you will need to have prenatal care, you'll be seeing an ob-gyn anyway. I think I would bring up the current situation. I don't know how the Canadian system works, but it sounds like perhaps you don't trust this new non-diagnosis. If it were me, I'd see what the gyn says, and then if I weren't satisfied, perhaps get another opinion from another GI doctor.
 
Wow, you must be in a state of shock. I, too, am wondering what it is that would make him change your dx. And what makes him think it is a gyn issue???

Good luck with the pregnancy. Let us know how you are doing.

- Amy
 
Congrats on your pregnancy : )

I am not a doctor and really new to this type of thing myself and am waiting to see a GI doctor, but in my online research I have read a bit about endometriosis in the colon, not very common...but it does happen. From what I have read it mimics IBD and gets worse during that time of month, something to think about and maybe talk to your OBGYN. After researching I decided to go ahead and make an apt with my gynecologist now in case I am told the same thing..."nothing is wrong!" We know our body better than any doctor, test or lab result, keep pushing for answers, no one should live uncomfortable and pain!
On a positive note, if it i endometriosis, I have read and heard it gets much better during pregnancy ; )

Good luck to you
 
Sounds like Idreamofpeace, could be right... having said that, Crohns is tricky. I too have had the diagnosis, and years later a crackpot Gi says he saw nothing. Helloooooo, maybe you just missed it. Funny how a 3rd Gi found it again. Very unpredictable this disease is, but I also wouldnt rule out see your gyno. Good luck and congrats on the baby! BTW this place is like Hotel California...you can check out any time you like but you can't never leave! ;)
 
Just a little info I found, very interesting! Long but worth reading ; )

Intestinal Endometriosis

By David B. Redwine, MD


Most patients with endometriosis do not have intestinal (GI) involvement. Among the difficult cases of endometriosis I see from around the world, only 27% have GI involvement. Since over 1900 patients with endometriosis have undergone surgery at St. Charles, that means I’ve operated on over 500 patients with GI involvement.


The symptoms of GI involvement depend on the severity and location of the disease. The severity of disease depends on the depth of invasion into the bowel wall.


When endometriosis invades the bowel wall deeply, it causes a lot of scarring and retraction and can form a tumor which partially obstructs the bowel wall. When disease is very superficial, it usually causes no symptoms at all. There is a long continuum of disease severity from very superficial to very bulky and invasive, and some patients can have both superficial disease in one area of the bowel, and bulky invasive disease in another.


The location of GI endometriosis follows well-defined patterns. The lower rectosigmoid colon is most commonly involved, followed by the last part of the ileum (the small intestine), the cecum (the first part of the large bowel), and the appendix (which hangs off of the cecum). Thirty percent of patients have more than one GI area involved. Superficial disease in any of these areas usually causes no symptoms, but bulky, deeply invasive disease can cause real problems.


When the rectum is involved by endometriosis, it frequently scars forward to the back of the uterus, causing what is known as obliteration of the cul de sac. This indicates the presence of deeply invasive disease in the uterosacral ligaments, the cul de sac, and usually the front wall of the rectum itself with what is called a rectal nodule. The disease can occasionally invade the rear wall of the vagina as well.


Interestingly, although you might think vaginal endometriosis would be obvious on speculum exam in the office, it is usually missed because most physicians don’t think to look just behind the cervix; they are more intent on seeing the cervix so they can do a PAP smear. Frequently the doctor may be able to feel nodularity behind the cervix on exam, and this area can be very painful.


A rectal nodule with obliteration of the cul de sac can cause painful bowel movements all month long, rectal pain during intercourse or while sitting, and rectal pain with passing gas. It can also cause constipation, although diarrhea can be present during the menstrual flow. When the sigmoid colon is involved by bulky disease, patients can have constipation alternating with diarrhea and intestinal bloating and cramping. Bulky endometriosis invading the ileum can result in right lower quadrant pain, bloating, and intestinal cramping. Disease of the cecum and appendix usually causes no specific symptoms at all. Most patients with GI endometriosis do not have rectal bleeding, although when rectal bleeding and painful symptoms occur during the menstrual flow, this raises suspicion for GI involvement.


GI x-rays and colonoscopy are rarely useful in diagnosing GI endometriosis because the disease usually doesn’t penetrate all the way through the bowel, but remains in the muscular wall of the bowel. Most patients will have negative GI workups, and GI endometriosis requires surgery for its diagnosis. Laparoscopy is adequate for diagnosing GI disease provided that the surgeon takes the effort to look at the areas which can be involved and also knows what GI disease can look like (it’s most commonly white because of scarring surrounding the disease). Most gynecologists do not look at the intestines very closely, so many laparoscopies are useless for ruling out GI disease.
 
when you say you were treated for Crohns for 3 years.. how were they treating you and how did they know you had Crohns? Im not doubting that you have it at all... in fact, from what I have seen in this forum is that doctors are really very hesitant to treat anyone for Crohns because the drugs are so strong with so many nasty side effects. In my experience, it isnt a disease a GI will take lightly.

If it is endometriosis... your symptoms will most likely just disappear until after you give birth...and I have read that sometimes, the symptoms don't return. I had a laparoscopy about 20 years ago for it. My OBGYN told me to get pregnant... (umm.. one symptom of (moderate-severe) endometriosis is difficulty getting pregnant)...
I dont know..I say trust your gut...
 
Congrats on your pregnancy!!

As far as the doctors saying that you do no have Crohn's, etc. I would definitely get another opinion.

First 4 years of me being ill, it took me to 6 different GI docs in my area, along with a couple of visits to UofM, Mayo in Arizona and back to another GI doctor in MI before he finally was able to diagnose me with Crohn's. After repeated exams, all kinds of tests, all I was getting was negative results or Functional Gastrointestinal Disorder from Mayo. The GI doctors, most of them that I have been too here, don't know enough about the disease and will take the first or second test that comes back negative with no results for a diagnosis.

Please get another opinion from another GI doctor and I think maybe an OB/Gyn should be told of all of the symptoms especially now that you are pregnant too.

Good luck and keep us posted.
 
I hope I didn't offend you with the info, I def do not want to dismiss your symptoms, diagnosis, ect. I agree with the others, if you were diagnosed before and being treated for it (especially if the treatment was helping) then it doesn't make sense for another Gi to say you do not or no longer have crohn's....we all know it doesn't go away! I would def see another GI ASAP!
Good luck
 
Sorry everyone! My weekend got a little hectic here, and I haven't had time to jump on!
I am ecstatic to be pregnant! It was a total surprise because I was on the birth control pill, but a happy one none the less!!
I had a colonoscopy at the beginning of February that was my third. The first one I had showed inflammation and signs of ulceritive colitis. My old GI (from my old town...) diagnosed it as Crohn's disease, but apparently never forwarded my tests or information when I moved.
I was being treated with Pentasa, prednisone and one whose name I can now not remember because it was so long ago, but it helped with the heartburn and nausea I got from the prednisone. I had been on something before the Pentasa, but it didn't work, so it was changed.
This doctor in my new town did a new scope because he didn't have any of the old information and was sick of waiting on my old doc. He found nothing, and is now saying that I do not have Crohn's.
I have actually seen an gynecologist before this, because initially, my symptoms started after a prolonged and painful menstrual cycle. (56 days of heavy bleeding that ended up requiring two blood transfusions to get my red blood cell count back to normal...) He found nothing that would cause any of the symptoms I was having. (Other than a low estrogen level, which was fixed with a hormone therapy for about a week...)
Right now, I am completely medication free, and already having troubles with pain and urgent diarrhea. I don't really know where to go from here, but will likely be looking up a new doctor very very soon.
Peace> I am going to forward this article to a friend, as she has endometriosis and a variety of stomach ailments. I think she'd love to hear she's probably not entirely insane...
Thanks everyone, and again, sorry I didn't respond sooner! I didn't mean to worry anyone.
 

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