• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Case Closed

Hi Everyone,

I wanted to post an update and let everyone who I used to talk to know how I'm doing. I haven't posted here in quite some time (August 2019, to be exact), but I have good news.

At the appointment with the new gastroenterologist in August last year, I told him what my symptoms were and what the other GI doctor had already done. I also told him that the other GI doc had tried to get approval for the pill cam but my insurance would not approve it because I did not have evidence of GI bleeding. I stopped going to the old GI because he stopped trying to help and, quite frankly, I was sick of him ignoring me and not trying other routes of testing.

Anyway, the new one exceeded my expectations. I went into the appointment nervous, but I didn't need to be. I had some pretty bad problems with GI doctors before -especially the one I saw in December 2018 completely dismissing me which led me to have suicidal ideations because I had been experiencing horrible pain (not only GI but rheumatological and gynecological). This new doctor said he wanted to do an MRE to look into my small bowel before proceeding. He thought that it was IBS, but wanted to rule out small bowel IBD before moving on. I had the MRE (gawd, that oral barium is ICKY!) and it came out normal. The GI doctor said that he believed my pain and symptoms were real and he wanted to find some medicine that would work for me. The trouble is, I had tried so many of the medications because I have received differing diagnoses of IBS-C, IBS-M, and IBS-D. The diarrheal version was the one that plagued me the worst the 2 years and it seemed intractable to many medications I tried including Xifaxin, Donnatal, Immodium, Kaopectate (that one helped but then it would turn to constipation for a week which made things worse), Carafate, Cholestyramine probiotics, fiber, Viberzi, Peppermint Oil, Bentyl, Levsin, and more. For the IBS-C, I had tried Linzess and fiber.

This new doctor said he thought Lotronex (aka Alosetron) would be the best thing for me because it is used as a last resort for women with severe diarrhea caused by IBS. I still had my gallbladder so I was a good candidate but he warned me that, in rare cases, it could cause bowel ischemia. I was to tell him immediately if I had any of the symptoms. It took FOREVER to get insurance approval (2 months) and I kept having to push back my follow-up appointment because I didn't have the medication yet. Once I got it, however, it seemed to work very well, at least the first 4 times I took it. I thought I finally found a medication that worked. But, it didn't work forever and, as most medications did, it lost its effectiveness. I started having to combine it with Bentyl or take a double dose at once instead of the split-dose. I took it as needed instead of twice daily (I told the doctor and he told me this was OK; I just didn't want to deal with constipation). Anyway, I kept thinking IBS was not my sole problem.

Before I saw this doctor, I saw a new gynecologist in April 2019 who suspected I had endometriosis. I told her that I often had weird cycles and irregular spotting and explained the IBS issues along with the pain I would experience. Her husband is an endometriosis surgeon and she believed I showed all of the symptoms. I told her that I already had 2 laparoscopies and the gynecologists told me they didn't see anything when they went in for ovarian cysts. She said she wasn't surprised because gyns are not adequately trained to spot endometriosis behind organs or in other parts of the body besides the reproductive tract. I think part of me didn't want to believe her because I trusted at least one of those doctors since I saw him for 16 years before transferring my care to this new gyn. However, after the IBS medication stopped working, I talked to her again about her suspicions and she thought I needed to see someone. I finally got an appointment for November right before Thanksgiving.

The doctor and nurse practitioner I saw there also believed I had endometriosis in addition to adenomyosis (where the uterine lining implants in the uterine wall). The doctor would have done my surgery but he was booked solid until May or June unless someone canceled. He had a colleague in the office who was available in March but he would have to agree to let her take my case before passing me on - which he did. I met with her and I was scheduled for March 4th. After a snafu in the pre-op testing (my HcG test came back positive that they drew in-office; I believe it was mixed up with s/o else's because it wasn't labeled before I left), I was operated on and the surgeon found endometriosis all over. She graded it as Stage II (mild endo) and it was on my bowels on the left side which glued it to the pelvic sidewall making it very difficult for stool to get through! Also, it was behind my bladder and it dotted my ovaries. She had to gently pry my bowels away from the pelvic sidewall before excising the endometriosis off my bowels. We thought before she opened me up that it would be on my peritoneum, but it was on top of the bowel itself! It explained so much! I'm 17 days post-op and I'm already doing so much better.

Anyway, I wanted to explain why I will no longer be posting here because I do not have IBD (I likely do not have IBS, either because endometriosis causes IBS-like symptoms when it involves the bowel and, when it is surgically excised, symptoms disappear). I have been dealing with these symptoms for so long and now I finally have an official diagnosis. Though endometriosis has no cure and I may have to have more surgery down the line, it's great to have a name for it and know that my symptoms are real. So many doctors made me feel like it was all in my head. I had one actually call me a hypochondriac and another treated me like one. :( I know my body better than anyone does.


Staff member
Glad you finally found an answer! I'm sorry to hear it is a chronic, difficult to treat illness, but I'm sure the relief of just knowing what it is and having your experiences validated helps some. I know how hard it can be to diagnose endometriosis and I'm so glad they finally found it and you're feeling better!