Hello fellow Crohnsies, here is my story!

I was diagnosed with Crohn’s disease at the age of 18, some 12 odd years ago. It was just another day for a girl in college, taking my last final of the semester. I should have been ecstatic, relieved, ready to celebrate, but unfortunately my body had other plans. I suddenly felt as if I had my life force sucked out of me, my energy was gone and I felt completely weak. Instead of going to celebrate with my cousin, I went home. And for an entire weekend fought what I thought was a stomach bug, vomiting, diarrhea; I couldn’t keep anything down. On the way back home from the doctor’s office and his diagnosis of a stomach virus, my mom decided that enough was enough so off to the ER we went. 18 hours later I was diagnosed with Crohns. I literally thought I was dying, I spent 5 days in the hospital, unable to stop going to the bathroom. Apparently the disease had caused narrowing in my terminal ileum and inflammation. I was put on an acid reflux medicine and Pentasa which I am still on to this day.
For the last ten years, I have had no major problems with my Crohns save for a few trips to the ER with vomiting and several bouts of uncontrollable diarrhea when I have eaten the wrong thing. I have been scoped many times with only ulcers for evidence of my disease and my blood work coming back that inflammation is somewhere as well as constant fatigue, a hiatal hernia, and random joint pain. I also have frequent headaches, endometreosis and sinus tachycardia with frequent PVCs that I take medication for.
This past Monday, I had an endoscopy/colonscopy that was considered unremarkable. There were no ulcers, narrowing or inflammation to speak of, yet I am constantly bloated even upon waking to the point where I feel like I could explode. I get nauseated easily. I have had burning in my stomach, lots of gas, and waking up several times in the night with pain both high in my abdomen and low where my small intestines are and the urgency to go. My doctor thinks I also have IBS and has put my on antispasmodics which do not seem to be working (it’s been three days) because I am utterly miserable right now and I am worried that something else entirely may have my stomach in an uproar. I have stopped eating anything raw, no whole grians or anything high in fiber, no junk food, fried foods, little red meat, no sodas, no fast food, you name it I have given it up. I am to the point where I’m ready to scream, does anyone have any advice for me? Or have any similar symptoms?

Hello and welcome to the forum.

I am sorry to hear you are still having problems with the tum Have your vitamin levels been tested recently at all? What explanation is the doc giving for the bloods confirming you have inflammation. Also just to double check did the scope you just had check 'both ends'?

AB
xx

Hi there,

You have described the symptoms I had just before being diagnosed, I went to hospital with a "sore tummy" and came out 2 weeks later with Crohns......I'm still going through testing to check for strictures and am waiting for more results, I put my pains down to having inflammation of my terminal ileum and a hiatus hernia, it was actually the pain of my stomach and small bowel that took me to hospital in the first place.

I'm really sorry this has happened to you, what is the next step for you, do you have any appointments with your GI to follow up after the scope? You're doing the right thing I think with regards to changing what you eat for now, has that made any difference to your symptoms?

I really hope that you get somewhere with this very soon, good luck and welcome to the forum, please let us know how you get on. Take care.

I know she did some blood work but I don't know if she tested all my levels, I don't have celiac disease, she has not given an explanation for it she said she would go over my biopsy results in a follow up and said she was going to order an MRE. Yes they did both ends!

It is worth asking to have your levels checked as it is common with crohn's to have deficiencies in this area and this could explain some of what you are feeling. Please keep us updated on hos things goes with the upcoming appt and MRE.

Hi packgirl, from a fellow Georgian. It sounds like though you've been fortunate to avoid major issues, you've still had your fair share of rough days - sorry about that!

I'm curious what makes you think something else might be going on. Is what you're experiencing different from what you felt during Crohns flares? New symptoms? You mention you are bloated and wonder if something is going on with your stomach in particular - and I also noted you were given a PPI when first diagnosed - do you think the bloating and other stomach symptoms could be explained by GERD or gastritis - just having too much stomach acid working around in there? Another possibility, which can cause bloating, is h pylori. That's something doctors would usually test for with what you described ...but maybe they just totally miss it assuming its Crohns. Can't say for sure...but wanted to throw some ideas out there and say welcome to the forum!

Hi guys,
I just wanted to update you all! So Wednesday the 30th, my issues finally came to a head, I had an appt with a rheumatologist where she tested me for a bunch of things (RA, vitamin D, lupus, etc) and I saw my gastro's PA who took me off the antispasmodics and back on the Zantac at night. She also ordered an MRI/MRE (I really have no idea what the difference is or if there is a difference...) and an ultrasound to check my gallbladder. I was so bloated and nauseated that night that I couldn't sleep and finally vomited (I'm one of those that has to force myself due to lack of a gag reflux) Anyway, I didn't get much sleep but really couldn't afford to miss yet another day of work so I went in (I work at a hospital) I was miserably nauseated that day and began having lower abdominal pain (sharp and severe at times- similar to cramping during a menstrual cycle only on both sides) and in my right hip (this pain was eerily similar to pain I have had with endometriosis) so around 1PM I had had enough and went down to the ER. I was seen quickly and had blood and urine tests and a CT scan with and without contrast. I was diagnosed with a ruptured ovarian cyst (there was a lot of fluid in my pelvic area) and was told to rest and take pain meds, follow up with my ob/gyn and my body would reabsorb the fluid. I followed up with my gyno today, had my annual and she's ordered an ultrasound in two weeks. I have researched these things and apparently they can last for a month or longer for some people which sucks but at least I have answers to explain my symptoms. Anyway, I am still having the pain but not so bloated or nauseated. I just wanted to let you all know and I appreciate your support. Thank you!

P.S. Lustforlife, thanks for the welcome. The biopsies they did would have found H pylori and gastritis and they were negative (gastritis was my original thought as well, I had all the symptoms) also I have been on PPIs for 12 years now, I never went off of them.

Wow I bet that was a bit of a shock!! Hope your resting up and not at work for a bit. Take it easy and take care. :ghug: