No Diagnosis...Yet

[bigsky]

Hi everyone,

For the past two months I've been experiencing constant right mid-quadrant abdominal pain :voodoo: , dyspepsia and hyperactive bowel sounds and which are worsened after eating. The pain is always there though sometimes it can be a '1' but other times it can be around a '7 or 8'. I've also been experiencing what feels like bouts of fever (fatigue, cold hands, chills, aches) yet my temp never rises. I'm able to consume liquids and some soft foods with limited pain and bowel sounds. My bowel movements appear normal nor have I vomited. I have lost twenty pounds over eight weeks.

Before this issue, I was eating mostly organic whole foods with limited junk. I was about twenty pounds overweight but very active.

I've been to the ER four times with what feels like severe flare-ups of this abdominal pain. Luckily I've been able to work from home during this time. The pain and general malaise has kept me from going out and enjoying life.

I've had the following imaging tests, all normal: Abdominal CT, EKG, Chest X-ray, Abdominal US, Upper GI, HIDA Scan, Meckel's Scan, Upper Endoscopy (showed antral/fundic gastritis, otherwise unrevealing), Upper Endoscopic Ultrasound, Capsule Endoscopy.

Blood Tests and Urinalysis, all normal: Routine chemistry, Routine blood counts, cardiac, Tumor markers (Chromogranin A, Calcitonin) A1C, Cortisol, Vit D, CRP, H. Pylori, Lyme, OVA and Parasites

I'm currently taking Prilosec 1x/day.

Since my capsule endoscopy was normal my GI doc thinks it may be IBS and has scheduled a gastric emptying test. He hasn't ruled out IBD but isn't leaning in this direction. He also just prescribed Bentyl. I keep asking for a colonoscopy but he doesn't think this shouldn't be next on the "to do" list since I had one three years ago (lower GI bleeding turned out to be hemmi's) and I don't have any other typical(?) IBD or colon cancer symptoms.

I'm extremely proactive with my medical care and always research every angle possible.

Has anyone experienced anything such as this? With all of your experiences, do you think I'm heading in the right direction? Also, I'm wondering if you've taken Bentyl and if so, how well does it work and what side affects, if any, have you experienced? I just received my prescription today but have yet to take it.

Sorry for the long post!

Thanks all!

 

[StarGirrrrl]

Have you thought about seeing a Rheumatologist? Lots of auto immune diseases such as Lupus can cause bowel issues. I didn't spot any typical AI blood tests on your lists, such as ANA.

 

[Crohn's 35]

Hi Bigsky :welcome: to the forum! You have indeed had alot of the common tests, and there is a chance you have a spastic colon too. I have taken Bentyl but honestly I dont think it works but it may for you. I would try at the very least. Take it as directed but I usually take it when the spasms start or 4 hours later. EVeryone is different.

Colonscopies clear what isnt there, cancer takes years but Crohns can be random times and one person on here was told not to have a scope didnt need it , turns out she was full of polyps! In my 20 years plus I have a colonoscopy once a year or at least every 2. Diagnosis took me a year of testing... is it possible to have a second opinion? I would think about it. Glad you found us.

 

[bigsky]

Hi and thanks for the prompt replies!

I haven't thought about a visit to a rheumatologist but I'll be sure ask my PCP and GI about the possibility.

This is my second GI doc. The first doc is the one I've been seeing since my colonoscopy three years ago. He was referred locally by my PCP. He and his office seemed to be dragging their feet so I decided to head to Beth Israel in Boston. I am somewhat impressed with the new doc considering I was able to make in appointment within three days. He had the capsule endoscopy, EUS and lots of blood/stool/urine tests ordered and scheduled within five days. He promptly returns my email and phone calls as well.

I think I'll go with his recommendation for the gastric emptying test. If that is unremarkable, I'll push for the colonoscopy....

Thanks again!

 

[Amanda.Lynne]

Hey Bigsky,
I haven't been taking medicine for much more than a year. But before I was diagnosed with Crohn's I had a lot of the symptoms you say you're having. I lost a lot of weight very quickly, which honestly I didn't mind :ytongue: I also got chills, fatigue and my stomach always hurt when I ate.
When I had my Upper GI scan they didn't find anything out of the ordinary, but when i had a colonoscopy they did. If you can get one I would go for it, just to make sure.

 

[bigsky]

Well my Gastric emptying scan has been scheduled for Friday, November 4th. In the mean time I've left an email for my GI doc to get his thoughts on possible auto-immune Lupus type issues. I'm planning on giving the Bentyl a shot starting tomorrow.

Have a great weekend everyone!

 

[Crohn's 35]

Thanks for the update, let us know how it goes. Have a good one back at ya!

 

[bigsky]

http://www.crohnsforum.com/images/smilies/stinks.gif

Well I just had my gastric emptying test today and as expected, it was normal. In addition, my doc ordered some other blood tests including ANA, B12, Ferritin, Iron, Albumin, Calcium and a few others. I should have the results tomorrow.

Today I convinced my doc to schedule a colonoscopy. He decided to do the "2 for 1" deal, colonoscopy and endoscopy. This will be my third endoscopy in ten weeks (one UGD and one EUS). He wants to look and biopsy for Crohn's and Whipple's disease. This is scheduled for December 6th.

Anyway, has anyone out there ever heard of mold exposure causing Crohn's type symptoms? The reason I ask is due to the fact that I've been experiencing a musty smell in my living room and it began just a couple weeks before my GI symptoms started. Two weeks ago we had a snowstorm up here in New England that knocked out power to my house for a week. During that time I stayed at a friend's house and noticed my chronic abdominal pain and hyperactive bowel noises were reduced to almost nil (the fatigue, aches and pains continued). Since I've been home, my symptoms have returned with a vengeance....I know I may be reaching but desperate times....

 

[Mayflower537]

I hope your doctor find something soon. I don't know about the mold exposure thing. That is interesting that your symptoms cleared up while you were away from home. ((shrug)) Who knows? Hope your scopes go well and/or the blood tests yield some answers.

Take care.

 

[Crohn's 35]

Good idea on the Endoscopy, and colonoscopy. Sucks to go through all this but you gotta find the answers!

 

[dannysmom]

Hi - I wish you luck and hope you get answers. Have you been tested to see if you are allergic to mold? When my son first got sick we also thought about possible environmental triggers ... (and I still wonder about the heavy metals that leeched from his dental braces because his saliva is more salty than normal. We had them removed and he did improve a lot, but not back to normal) Can you try staying out of your house again to see if you feel better?

 

[bigsky]

Thanks for the replies! I'm glad I found this site. I find it difficult to discuss my woes with my family and friends. Although they've been very supportive they really don't know what it's like to go through this on a daily basis.

My labs are normal though the ANA is pending.

I found this little mold tidbit on a website. I guess the only way to know for sure is to live away from home for a week or so and then see what the results are of the colonoscopy/endoscopy on 12/6.

"The following are a list of the most common symptoms of fungal exposure (bear in mind, people never fit all of below criteria). Most people with some forms of Mycotoxicosis meet at least 8 (recent symptoms) of the following criteria:
Irritable bowel syndrome, nausea, diarrhea, sharp abdominal pains"

Have a great weekend all!

 

[bigsky]

Well yesterday I had my upper endoscopy and colonoscopy. Even though they sedated me, I was awake and somewhat alert so I was able to watch the procedure on the screen and ask my doc all sorts of questions along the way. I was clear all the way to the terminal ileum. They even gave me pictures to prove it.

Endoscopy was clear as well. With the exception of some reflux, most of my GI symptoms have subsided. Funny thing is I've been living away from my house for the past three weeks which just happened to test positive for elevated mold. Even though there's no "proof" mold exposure and/or allergies to mold will cause GI symptoms, I'm thinking there's definitely a connection. I think it caused a stress reaction in my body resulting in IBS...but what do I know?

Anyway, unless my GI symptoms return, I'm going to accept mold exposure as the culprit and not CD.

Good luck to everyone and happy holidays!

 

[Mayflower537]

Glad that things were clear. Hope your GI symptoms stay away. Can you remediate the mold? Or is it more trouble than it's worth?

 

[bigsky]

I'm renting the house so it's more trouble than it's worth. Much easier to move out.

Thanks!

 

[Mayflower537]

So in any case you can get away from it. Great!