Mild Crohn's disease???

[giapeeter]

So, I'll try to keep the lead-up short: I've been trying to "feel better" since mid-March when I begin to experience left side pain, fatigue, and a change in period. My left side pain includes tender to the touch side and stomach area. Pain in the pelvic area that extends/radiates into my left thigh/knee. Sometimes it feels crampy, sometimes it just PULSES. Sitting over hunched becomes uncomfortable. Standing for long periods of time in one place can also cause increase in pain. Sitting with my back against something and legs extended is my most comfortable position. Currently, I am applying heat often to try and keep the pain at minimum.

I had diarrhea issues but I've ALWAYS had GI problems and especially with my period, so I really didn't think anything of it. I figured I had my period so OF COURSE I would be in constant issue with my gut .I had my period from mid-march until 05/31/17. I presumed my issues were gyno related and saw two doctors, had a transvaginal ultrasound, a endometrial biopsy, bloodwork, pap smean, etc etc to which they concluded my anxiety was causing my problems. The anxiety that I didn't have until I had my period for 2+ months, but they didn't want to hear that.

I ended up at a GI specialist and a pelvic pain Gyno, after almost giving up hope. I had a colonoscopy that showed MILD Crohn's disease on my right side. I was originally put on Lialda following my diagnosis (on 7/10) but had a bad reaction to it. I was then put on entocort to try and clear up the symptoms.

The new gynecologist thinks that I might have endometriosis, and the diagnosis of Crohn's says its MORE likely that I have endometriosis - not less.

I had another long, very heavy period from 7/11 until 08/04. My anxiety levels increased and so did the pain on my left side and my fatigue.

I went back to the GI who told me that there was no way my very, very mild Crohn's disease was causing my symptoms. He said maybe I had IBS and prescribed an IBS medication. At this point I had put in for a leave of absence from my very demanding, salaried job because of the increased anxiety, fatigue, and pain in my left side. The GI was VERY clear there is no way the extremely mild Crohn's could be my issue. He has ordered an MRI small bowel series and says if I have Crohn's in my small bowel that might explain the symptoms. Otherwise, it ISN'T Crohn's related. :/

So, the symptoms that brought me into the GI's office might be completely irrelevant to my problems! The only symptom that might actually be from Crohn's is the pooping?! How *delightful*.

I have another transvaginal ultrasound on Friday and a follow-up with the gynecologist. I guess its possible it could still be endometriosis.

Has anyone else had this issue? Anyone else have mild Crohn's disease and can speak to their symptoms? I'm so tired of not feeling well.

 

[Scipio]

I have mild Crohn's and my major symptoms are mild right side (ileal region) pain and occasional bouts of fatigue caused by anemia. Being male I can't speak with any experience to having gynecological issues along with the Crohn's. But given the severity of your pain, my guess is that either your Crohn's isn't really mild but that you have small bowel Crohn's lesions that have not been otherwise detected yet, or you do in fact have something else wrong with you along with the Crohn's, or both.

 

[ronroush7]

My Crohn's disease is more moderate. A couple of years ago, tbey tried to say i have ibs along with Crohn's disease. They determined that from a MRI. Later that year, i mentioned i was still having the same symptoms. They asked if I wanted the test repeated. I said yes and they found active Crohn's. You know your body better than anyone else. If you think there is more going on,keep at your doctor

 

[Sophabulous]

I agree, I'm quite lucky in that my Crohn's doesn't seem to worsen my cycle however I've had massive issues with certain forms of contraception which have worsened my Crohn's symptoms. I still hold starting one pill in particular responsible for a nasty flare. Are you on any birth control currently?

 

[giapeeter]

Thanks everyone for your feedback and experiences.

Sophabulous, I am not on any birth control. I don't respond well to it, mentally and emotionally. They keep offering BC as a cure all, the gynecologists. But even when I was on birth control it didn't fix my irregular + painful periods (my older problem).

I guess all I can do is do the MRI, talk to the gynecologist about maybe doing a laparascopy if the MRI is clean and then gput forward from there.

Thanks again everyone!

 

[Sophabulous]

Ah ok, I can't tolerate any hormonal BC and when I was on it my experience was very similar to what you describe.

Hope all goes ok, let us know how you get on

 

[Bnicole]

I feel you! I lost 40 lbs in 4 months from chronic diarrhea and not being able to eat ANYTHING. I get my results back, mild Crohns. I thought your thread was interesting because I have had 8 surgeries for endometriosis. I have a non stop pain in my right side side, right below my ribcage that no one can figure out. Sometimes it feels like something is stuck in my side, like a blockage, sometimes it feels like a stabbing pain. I don't know if it's crohns related or endometriosis. I've had EVERY scan possible. Unfortunately, endo doesn't show on scans and I doubt in my surgeries they went that far up to look!