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Crohn's or IBS...waiting for a diagnosis

Hey! I am new here and wanted to share my journey so far in trying to get a diagnosis and was wondering if anyone had gone through something similar?

The beginning:

It all started one day when I was at school. I started getting really nauseous, felt a strong urge to us the bathroom, and had severe abdominal pain. I excussed myself from class and practically ran to the bathroom just in time to basically explode for the next few minutes. I had to keep myself from vomiting (no clue to this day how I didn't) and instead of seeing the nurse I just continued my day thinking it was nothing because I already have GERD and maybe this was just a flare with some crazy diarrhea (definitely not a symptom of GERD but ya know...gotta find an excuse to excuse it). Well as the day went by I started developing other symptoms of a sickness. I got home and had a fever, explosive diarrhea, and a horrible headache. We chalked it up to a sickness but it went on for a week. Finally I dropped the fever and headache but the diarrhea and stomach pain never went away. In fact it went on for about a month before we even did anything about it. My mom knew but we just kept saying it was probably IBS since it goes right along with GERD. Finally after 4 weeks of running to the bathroom 10+ times per day, abdominal pain, bloating, gas, and fatigue was really setting in, we decided to talk to my doctor. She said it was probably just a flu and my body forgot to stop with the diarrhea. She told me to take some Imodium and if it didn't stop to come back and see her. Well the diarrhea stopped for maybe a week when it was back to running to the bathroom several times per day. It really made school hard because I would have to get up super early to plan for the long bathroom visits in the morning to hopefully get it out of my system before school. Then I would not eat anything in hopes of not missing tons of class. When I got home I would be so exhausted that I would nap before even being able to do my homework. This happened day in and day out and really started dropping my grades and making life misserable. Side note- I don't do dairy, eggs, or tomatoes because that causes my GERD to flare.

Finally we decided there had to be something more serious going on after weeks of all these symptoms. We went back to the doctor and she ordered a stool sample to test for parasites and ova. Thats when things kicked up a notch. There started being nights of 10+ bathroom visits and just not being able to get off the toilet because it just kept coming. I would throw up, have severe abdominal pain, and it was exhausting. The stool sample came back negative so she put me on a gluten free diet for 3 weeks. The diet didn't help at all so that is when we decided to go to my GI (I already had one from when I got diagnosied with GERD).

The GI:

I wasn't going to be able to get an appointment for over a month but then the nurse heard my symptoms and decided she wanted for me to be seen ASAP. I got an appointment for 5 days later. I went and the doctor never said what he thought it was just ordered bloodwork and a celiac antibody test. He also put me on Bentyl which is an antispasmodic used for IBS. My bloodwork was all normal as was the celiac test. He said I probably had IBS. However, the bentyl wasn't working so we pushed for more answers. He then ordered a stool sample to test for malabsorption and calprotectin. It turns out I have malabsorption and borderline calprotectin levels. This is when things got even more out of hand for a few days. I had severe vomiting, dehydration, diarrhea, and abdominal pain and almost landed in the ER. I thought I was going to die. My GI put me on a low fructose diet to see if that helped since I have malabsorption for sure and that didn't do a thing.

The endoscopy and colonoscopy:

After no other options working my GI decided we needed to do an endoscopy and colonoscopy ASAP. He scheduled me for 3 days later. I did the dreaded prep and went in for the scopes this past Thursday. He said everything was visually normal but he took about 36 biopsies (that is a lot in my opinion, but I am very thankful he took plenty while he was in there). We are still waiting for the results and they should be back early this week.

I was just wondering if anyone has gone through something similiar. My main symptoms are diarrhea (very occasionally constipation), abdominal pain, no appetite, lost 8 pounds and am already underweight so I weigh around 87 pounds, bloating, gas, mucus in stool, and canker sores. I have already diagnosed malabsorption but also borderline calprotectin levels. Crohn's also runs in the family so could I have it even though everything "looks" normal on the scopes and my calprotectin levels were only borderline? Just wanted to hear your opinions and see if anyone had something similar happen to them.

  1. absolutely there is something more going on and you should for sure keep pushing. Personally I was diagnosed w celiac by bloodwork then they decided i didnt have celiac bc my colonoscopy was normal though they didnt tell me to eat gluten before hand. All of this to say, my gf diet did nothing for me and my gi said its just stress. I’ve had a lot of your same symptoms but instead of vomiting and diarrhea its more tenesmus/constipation occasional diarrhea. I’ve heard from a lot of people you have to get a ton of different opinions which is super annoying. I know i’m sick of not knowing either, i get it

    1. Hi there. I am in the same boat. I have severe pain under my right rib with nausea diarrhea, bloating, feeling super full and nauseated after eating (which I dont eat much now a days because how bad it makes me feel. I took Cipro and Flagyl and did nothing. I had my colonoscopy and GI scope show ulcers in the terminal ileum and somewhere more upper(forgot name). Also, had polyps (im only 35 way too young for those) Next had a ct with contrast and it came back normal. My GI has me taking Entocort (small bowel only steroid associated with Crohns) and have an appointment to go see her next week. The medicine has helped with the pain some but I still cant eat. Ive lost almost 20lbs since May 11. Her nurse said the doc was thinking I had IBD of some sort but she said the doctor wanted to see me and wouldnt elaborate further.

      1. , yes, sounds like what I’ve been through over the years. I didn’t go to a GI until about 1.5 months after my symptoms started because I also assumed it was just sickness or a stomach bug. Your doctor should be able to get you on some medication to help you feel better. In my experience, there are specific triggers that cause my symptoms. You’ll want to listen to your body, eat good whole ingredients, find ways to de-stress, and ideally find a doctor who has been through this type of thing before so they can have empathy and relate more. Good luck!

        1. Thank you everyone for your replies. Here is a short update. My biopsy results came back normal as did my enzyme testing. Again my doctor said IBS and is putting me on cholestyramine and keeping me on the bentyl. We really feel brushed off with my doctor so I am probably going to see a different GI or a natural doctor to see what we can do. I will take my first dose of cholestryamine tomorrow and I am hoping that helps until we can figure something else out. All my current GI is doing is throwing random medications at me to see what happens since he doesn't feel like trying to actually figure out why my stool sample came back abnormal and we aren't a huge fan of that.

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