Here's what I DO know

[Sixyearsandcounting]

Hi all it's been six long years and I've had almost every test except for pill cam. All tests have been normal with the exception of the following findings:

Prometheus crohns genes: mutations noted
Ct showed sclerosing of the sacroiliac joints
I have HS hydradentitis suppurativa
I've had a ct show colitis once a few years ago that was deemed infectious and temporary
I have only had one family member with crohns- uncle
Anal skin tags
Multiple loose bowel movements per day sometimes firmer sometimes softer
Digestive problems: attacks of upper belly pain in waves randomly but especially leading up to my period and ovulation. This pain can radiate to my upper back in between shoulder blades, back of head, jaw heart is good had it checked thrice. I haven't been able to eat eggs or banana for six years which is when this all started because I'll get severe cramps in entire belly and lower back for six hours or more. Lately, I feel full quickly and have almost constant dull yet painful stomach aches. My pain is never low always high or mid belly. I feel like gas gets trapped and then I get bloated. Loud belly sounds. Basically miserable. I've had one crp come out slightly elevated. I swear I feel pain when stool and food move through certain parts of my tract. I'm just so done with all of this. I know something is wrong and they just aren't finding it. Had my gallbladder removed three years ago, not a single stone and did nothing for my symptoms.

What are your thoughts? Should I try a pill cam? Maybe there's something in the areas an endoscopy and colonoscopy can't reach?

 

[Brenden]

I defiantly think you should try a pill cam. It may provide you with the answers you are looking for. I have read good things about it;

The value of video capsule endoscopy is that it can identify the early, mild abnormalities of Crohn's disease. Video capsule endoscopy may be particularly useful when there is a strong suspicion of Crohn's disease but the barium X-rays are normal. (Barium X-rays are not as good at identifying early, mild Crohn's disease.) In a prospective blinded evaluation, video capsule endoscopy was demonstrated to be superior in its ability to detect small bowel pathology missed on small bowel radiographic studies and CT exams.

 

[StarGirrrrl]

A pill cam can't take biopsies, but it can see the entire digestive tract, scopes can only see the GI tract and large intestine, peek into either end of the small intestine, which is very very long.

 

[Clash]

A pill cam may be a good idea just to check the entirety of the small bowel. Also have you had a fecal calprotectin stool test? It won't dx CD but does show if there is inflammation in the bowels and give you more information on which direction to go next.

When they did the endoscopy did they biopsy for h. pylori? It can cause some similar symptoms and did so in me. It is my son that has CD, they assumed with his dx that I may have it too since I was having a lot of the symptoms you are. Once I was treated for the h pylori my symptoms subsided.

Also an MRE(magnetic resonance ethnography) may be another test you could look into. The imaging is better than that of a ct or mri plus no radiation.

I hope you find some relief and answers soon!

 

[Sixyearsandcounting]

Thanks for the replies all!
Here is a list of the tests I've had over the last six years:

Numerous celiac blood panels-neg
Three upper endoscopies- first one esophagitis
Two colonoscopies- biopsies for microscopic colitis and one for celiac sprue neg
CT Enterography- only showed sclerosing of the sacroiliac joints
HIDA scan- no stones but gallbladder ejection fraction of 2%
Prometheus IBD blood test- neg for IBD but gene mutations for three crohns related genes
Abdominal ultrasounds- neg

Never had pillcam, never had MRI

Would an MRI or pillcam be superior to the CT enterography? I cannot have another CT due to a reaction to the dye (shock like reaction with plummeting BP skyrocketing HR and uncontrollable shaking and chills)

I am about to graduate nursing school next week and really want to start my career in the right direction without all of this continuing to bring me down. I should mention I'm not a whimp and have a pretty good pain tolerance however this is killer stuff here. I also have four daughters that need me to function!

Thanks for all of the insight.

 

[Ihurt]

Hey there,

I just wanted to say, sorry you are going through all this. I also have been having issues for over 2 and half years. I have had a lot of tests and no real answers. My doctor just scoffs it off at being IBS. But my symptoms do not fit the IBS criteria really.

One thing I was going to mention is, you say a lot of your pain and bloat is in the upper gut? I dealt with this years ago and would get severely bloated after only eating a small amount. I also would get this like pressure like pain in my upper gut. I tried all kinds of stuff until one day I just decided to go Gluten Free on the advice of a natural doc I was seeing. I had tried going Gluten free before for like 3 weeks and it did not help. She told me that I had to adhere to it for at least 4 months to see if it was going to really help. I stuck it through and at month 3 I felt 90% better!! I have been Gluten free for over 6 years now. My issues right now are in my lower gut( severe pain and crampiness). All this started after I got a bout of stomach flu three years ago.

Oh, also, have you ever had a Gastric Emptying scan to rule out Gastroparesis? Gastroparesis can cause the upper gut issues as well. Sometimes going Gluten Free can help that as well in some people.

Hope you get some relief soon...