Small Bowel Crohns?

[mxschick]

Does anyone have Crohns in the Jejunoileitis? I can't seem to find much information on the internet about this type of Crohns.
I"m struggling with daily pain, not consistantly all day, mostly associated with food, 2-3 hours later, epigastric from the middle slightly to the right but mostly to the left and under my breast bone and ribs.radiating to my back at times, some nausea but not too bad, no appetite and weight loss. The EGD was normal, I had a high CRP and Sed rate but they have since normalized, elevated lipase and amylase (treated for "pancreatitis" after that) and the levels never changed and the doctor now doesn't think it is really pancreatitis but a crohns flair causing the pancrease to produce higher levels. However! just had a colonoscopy and it was normal and a CT scan, it was normal and a ultrasound of my gallbladder and it was normal!! I"m scheduled for a capsule endoscopy on Monday with the hope they will find something in my small intestines? How common is this. My doctor doesn't seem hopeful he will find anything. I was diagnosed with Crohns about five years ago and it has always been in the tranverse and decending colon. Any ideas?
michelle

 

[David]

Hi Michelle and welcome to the community

I'm so sorry to hear of your troubles You poor thing.

Please take no offense to my correcting you, I just want you to be able to search for information in a manner that helps you find what you need. The correct statement would be, "Does anyone have Crohn's in the jejunum". If people have Crohn's in the jejunum, then it would be Jejunoileitis.

A few things:

1. What medications are you on?
2. Did they do a liver function test as well? If so, was that all normal?
3. Crohn's disease in the duodenum (the part of the small intestines before the jejunum) can lead to pancreatitis as well.

I'm glad they're doing a capsule endoscopy. I think that's a great next step. While I'm not familiar with small intestine bacterial overgrowth causing increase lipase or amylase, I wonder if it might be contributing to yours symptoms. It's common in people with Crohn's Disease and some describe some of the symptoms you're mentioning. It can definitely be present in the duodenum and jejunum.

 

[mxschick]

Hi David
Thanks for responding.
No offense you right if I phrased it differently I may get better results. I have been on a multitude of mere all of which have been ineffective. Prednisone. Levaquin. Flagyl Prilosec. ASACOL entecort. Being tapered down on prednidone. No longer taking the others. Doctor is trying an antispamotic but doubtscthat will help. They have not done any liver testing. U think that would be beneficial? I will look some of ur suggestions up. Thanks!!

 

[David]

Most of those meds can cause pancreatitis, including the prednisone you're tapering. I assume they considered that?

I think a liver function might be a good idea, see what your doctor says. Some associated conditions people with Crohn's disease get that cause elevated liver function test results can also lead to symptoms of pancreatitis.

 

[DustyKat]

Hi Michelle,

It's good to hear that they are going to look at your small bowel. I was going to suggest that as I was reading through post and then bingo! :lol:

Chronic pancreatitis is an Extra Intestinal Manifestation (EIM) that can affect between 3-15% of Crohn's sufferers and studies seem to suggest that there is a link between pancreatitis and Ileal disease.

This was certainly the situation in my daughters case and the type of symptoms you are describing are what she suffered too. I know it is hard to not become frustrated with normal test results but unfortunately they aren't that uncommon here. I know all about that too!

I hope the pill cam is able to provide you with solid answers and relief! Perhaps your doc is on the right track!

Good luck!

Dusty. xxx

 

[mxschick]

Wow so you had a similar experience with ur daughter. Glad I'm not alone.
The pain is also positional. I can go from a pain number of 8 to a 2 just by standing up or moving my position. Last night east a good example.

 

[wcv947]

A relative started having severe headaches about 4 years ago, 16 yr old, and was diagnosed with ulcerative jejunoileitis 2 years ago. He is having all the symptoms listed by others with jejunal colitis but also has continuous headaches and now, migraines also. Are headaches common with this disease? He is looking for a second opinion in the Columbia, Maryland area. Any recommendations?

 

[emilyt804]

See if you can switch your diet to mostly easy things for your body to digest: ice cream, milkshakes, soups, oatmeal, brown rice, applesauce...until you get your results back from your capsule endoscopy.

I know it stinks, but it really and truly is not worth causing yourself a bowel perforation.

I perfed my bowel in November 2009, and I didn't realize it until I read my pathology report from after surgery this year (2017!) so you can totally perf yourself and not know.

I was sick...elevated temp and threw up a lot...but my temp was only like 99.5. I just thought I was a little obstructed, I didn't know I'd blown part of the side of my small intestine wide open. But I had.