Hi all, first time poster here. First off I want to say I'm currently undiagnosed but have been coming to these forums to read up on Crohn's for the last month or so. I'm a 30 year old male living in Mesa, Arizona and wanted to share my story.
See below for the full timeline (sorry, it's long) but here's the TLDR:
Timeline
March 26th
April 22nd
May 12th
July 11th
July 15th - 16th
July 24th
July 26th - 30th
August 1st
August 4th
August 10th
August 23rd
August 31st
September 15th
September 29th
October 18th
Present
Next Steps
If you read all that you deserve a medal or something. Anyway, I just wanted to get this all out there. Also, a big thanks to this community for giving people like me a place to vent like this.
See below for the full timeline (sorry, it's long) but here's the TLDR:
- Heart palpitations started in April, led to my first doctor's visit in a long time.
- After several cardiologist appointment the heart checked out fine.
- Issues then suspected to be gastrointestinal.
- Took Omeprazole for a while.
- Developed abdominal issues.
- Had a panic attack.
- Eventually took some antibiotics that seemed to reduce/resolve most of the abdominal issues.
- Continuing to have other various issues including minor abdominal issues, fatigue and body aches.
Timeline
March 26th
- Went on an overnight backpacking trip to the Devil’s Hole. Was a ~6 mile hike in with a ~30 lb pack. Felt like shit (headache, tired, fatigued) the entire rest of the day and napped in our tent. I should mention that I am/was not physically fit and definitely out of shape.
- Drank filtered river water and cooked and cleaned with filtered creek water (I mention this because I suspected parasites, more on that later).
- Felt better-ish the next morning, hiked out and was exhausted afterwards but didn’t feel quite as shitty.
April 22nd
- My sister moved into town and I helped her unload the moving truck.
- During this time I noticed some some sharp, specific pain in my chest/ribs. I thought it was sore muscles or something at the time but in retrospect this was likely just heartburn.
- April 23rd
- This was the first day I experienced heart palpitations.
- It’s difficult to recall exactly how I felt but I remember feeling like my heart was beating a lot harder and maybe faster than normal to the point I could feel it in my neck and head.
- During the following week I had more palpitations at work and scheduled a doctor’s appointment.
May 2nd
- First doctor’s appointment with my primary care physician.
- Doctor noted an elevated heart rate and high blood pressure and prescribed me Propranolol.
- ECG looked normal.
- Also performed my first round of blood work. Results came back showing high cholesterol and triglycerides, otherwise normal.
- Was referred to a cardiologist, appointment scheduled over a month out.
- Weighed in at 203 lbs
May 12th
- Continuing to have palpitations periodically and not wanting to wait over a month, I found a cardiologist on my own that was able to get me in sooner.
- Cardiologist recommended I stopped taking the Propranalol as it would only mask the symptoms, not solve the problem (understandable). Scheduled an echocardiogram and monitor for the following week.
- May 18th
- Went in for the echocardiogram and started 5 day heart monitor. Both of these came back fine.
June 6th
- Second cardiologist appointment (the one my PCP originally referred me to).
- Mentioned that I didn’t have any particularly bad “episodes” while I was on the 5 day monitor for the first cardiologist so they put me on a 21 day monitor to see if they could catch anything. I had one or two major “episodes” during this time but the monitor didn’t show any problems with my heart. Again, in retrospect, I believe these episodes were likely just heartburn.
- After everything looked normal on the monitor I was referred to a third cardiologist for an exercise stress test.
July 11th
- Third cardiologist appointment.
- Did an exercise stress test where they monitored my heart while I ran on a treadmill for ~10 minutes as it periodically inclined. Once again my heart checked out fine.
- The cardiologist then suggested that the pains may be gastrointestinal of origin (GERD) and recommended I take a 14 day course of Omeprazole (PPI) and Gaviscon as necessary after meals and such.
July 15th - 16th
- During the course of Omeprazole I went on an overnight camping trip near Willow Springs Lake. This was a much simpler hike in/out with much less stuff on my back and I didn’t get exhausted like I did on the previous 6 mile backpacking trip.
- Once again I drank some filtered creek water and cooked and cleaned with filtered creek water as well. (This combined with me being on Omeprazole at the time later lead me to believe I may have picked up a parasite.)
July 24th
- Last day of Omeprazole
- Overall I felt generally better on the Omeprazole, specifically in my chest, though not back to 100% normal.
- As best as I can remember it was around or this time I started experiencing abdominal issues (pain, indigestion, cramping, bloating, etc.). Though I may have had some of these symptoms earlier and been distracted thinking my heart was the issue, I honestly don’t know if that’s the case.
July 26th - 30th
- Trip to Louisville, Kentucky for the Laracon developers conference.
- During the trip I specifically watched what I ate thinking all my issues were just GERD. However, I definitely continued having abdominal issues during this trip. I also started noticing issues with my energy levels and concentration but thought it was just due to traveling.
- I also noted some specific pain in my rib one night and noticed what seemed like a small lump on part of the rib near the breast bone. I wasn’t sure but thought the pain was connected to the heartburn and/or abdominal issues.
August 1st
- After coming home I scheduled another appointment at my primary care physician’s office (though had to meet with another doctor) to discuss the abdominal issues.
- The possibility of gallbladder issues was also discussed and an abdominal ultrasound was scheduled for later that week.
- I also mentioned how I felt better on the Omeprazole and was prescribed a second, extended course of Omeprazole.
- Weighed in at 187 lbs
August 4th
- Had my abdominal ultrasound. Results of this showed some fattiness to the liver that wasn’t immediately concerning but other than that nothing out of the ordinary.
August 10th
- On my way to work in the morning I started experiencing what I thought was a heart attack, pulled over and called 911. The paramedics arrived, checked my vitals, gave me some water and informed me that I had experienced a panic attack. This was by far one of the scariest moments of this entire ordeal. Luckily I’ve haven’t been anywhere close to feeling like this since then.
- I suspected that the Omeprazole may have contributed to an elevated level of anxiety that then triggered the panic attack and stopped taking it a day or two later (of course I couldn’t prove this).
August 23rd
- Continuing to not feel well I Had my first gastroenterologist appointment. Aside from agreeing with the approach of my primary care physician the gastroenterologist thought I just had heartburn.
- When mentioning the panic attack and how I suspected Omeprazole may have contributed she recommended I try Ranitidine 150 mg instead. I picked some up and started taking only as needed (when I felt major heartburn).
- Scheduled an endoscopy for the end of September.
August 31st
- Primary care doctor’s visit to follow up on ultrasound, discuss the panic attack and possibility of anxiety issues.
- Weighed in at 180.8 lbs
September 15th
- Another primary care doctor’s appointment where we did more blood work specifically looking for auto-immune problems.
- The blood work returned a positive ANA with a RNP Ab value of 1.1 AI
- Scheduled an appointment with a rheumatologist for early December.
- Due to this I decided to cancel the endoscopy appointment (in retrospect I should have kept it).
- Weighed in at 178.2 lbs
September 29th
- Not wanting to wait until December I got an appointment with another rheumatologist.
- They ran some blood work and took a urine sample and were confident I had no auto-immune diseases.
October 5th
- Visited the primary care doctor again. I brought up the possibility of parasites (specificaly Giardia) having thought through my history and believing the digestive issues came after starting the Omeprazole and the camping trip to Willow Springs Lake.
- We did more blood tests checking for food allergies and celiac’s disease.
- Started a 24 hour stool sample collection to check for fecal leukocytes, ova and parasites, fecal fat and giardia and rotavirus antigens.
- Stool tests ended up returning a positive result for rotavirus for which I was prescribed some probiotics.
- A delayed test result also showed up a day or two later indicating elevated levels of fat in stool. Doctor’s assistant left a message suggesting a possible pancreatic deficiency and that we might try taking some digestive enzymes.
- Weighed in at 175.6 lbs
October 18th
- Continuing to feel pretty shitty I went back to the primary care doctor in the morning and asked if it was possible the tests missed Giardia (or another parasite). He agreed that no test was 100% (especially for parasites) and suggested trying a seven day course of antibiotics before trying the digestive enzymes.
- Was prescribed seven day course of Metronidazole
- I brought up the rib pain issue (which I had experienced on occasion) and mentioned the lump to him and was able to get in for a chest X-ray in the early afternoon. This showed no apparent issues with the rib.
- I then visited my gastroenterologist again that same afternoon and she agreed with the actions of my primary care doctor but didn’t offer much beyond that. At this point I decided I needed to find a new gastroenterologist.
- Weighed in at 172 lbs
October 27th
- Follow up appointment with primary care doctor regarding the antibiotics.
- Discussed white tongue with doctor. Prescribed Nystatin to be swished and spit out several times a day.
- Mentioned the groin pain to which the doctor suspected just a pulled muscle and to ice it and take it easy.
- Also discussed the possibility of an inflammatory bowel disease like Crohn’s or similar. Referred to a different gastroenterologist, scheduled an appointment for November 29th.
- Weighed in at 170 lbs
November 9th
- Back to my primary care doctor. Despite the improvements to my abdominal issues I continued having periodic fatigue and brain fog. Also the white coating on my tongue was still preset, though wasn’t getting worse.
- Asked specifically for blood work for vitamin and/or iron deficiencies.
- Results showed insufficient Vitamin D levels.
- Started supplementing additional Vitamin D every day (on top of my multivitamin).
- ANA also still showed positive.
- Weighed in at 169.6 lbs
Present
- I continue to have periodic fatigue, lack of energy and moments of brain fog where it’s difficult to concentrate but generally feel better than I did in late September. However, even on the days I do feel energized my energy depletes pretty fast. These issues may be getting better ever so slowly but it’s hard to tell when I still have particularly bad days on occasion.
- I still experience minor abdominal pains/cramping/bloating every few days but usually no where near the level it was before taking the antibiotics. Although I fear it might be relapsing slowly.
- My heartburn has been mostly under control mostly through diet. I mostly only start to experience minor burning/tingling later in the day before I take my daily dose of 75 mg of Ranitidine.
- Bowl movements continue to be formed but on the softer side. The only diarrhea I’ve had in over a month was after some spicy Mexican food for lunch (wont be doing that again). I do, however, notice chunks of food in my stool or on the toilet paper rather frequently.
- My weight is up and down a little bit every day but seems to have been hovering around the same point for the last week or two. I’d love to see some weight gain but am glad I’m not losing much anymore.
- Minor groin pain occurs and had a few days with some leg pains.
- Other general body/muscle pains
Next Steps
- Will be seeing the new gastroenterologist tomorrow and plan on discussing the possibilities of and testing for crohn’s or other IBD, parasites or even an intestinal bacterial or fungal overgrowth. Will ask about getting an abdominal CT scan and plan on scheduling a colonoscopy and/or endoscopy.
- Depending on the outcome from the gastroenterologist I’m considering a full body CT scan or MRI to look for something worse (like cancer
).
If you read all that you deserve a medal or something. Anyway, I just wanted to get this all out there. Also, a big thanks to this community for giving people like me a place to vent like this.
