Inflammation in the Small Intestine only

[Charlotte.]

Hi,

really need your personal experience of those who are diagnosed with Crohn's in the small intestine only or having had episodes of Crohn's active in the small intestine only::sign0085:

What does it feel like for you?
My nutritionist thinks my gastritis that I'm dealing with currently could be the result of very slow digestion in my small intestine due to inflammation.
Does that make sense to you?

Symptom-wise I feel very nauseous, severe stomach pain after eating (bad stomach pain before having a meal, that definitely comes from the stomach region itself from my chronic and now active antral gastritis again), cramping pain, have to curl up in bed on my left side preferably, feel full for about 3-4 hours so can't get in the calories that I need, no appetite at all for sure during all of this, some more inflammation in my joints currently (so probably something is going on there, no idea).
Feel that way for about 5 days now, stomach pain started approximately 3 weeks ago getting worse slowly but suddenly getting more intense one week ago, so it's getting increasingly worse which - for me - is merely a sign that it might not be “just“ gastritis by itself (as I'm eating gastritis-friendly but it's getting worse despite of that).

 

[eleanor_rigby]

I have Crohn's in my small intestine only. For five years prior to surgery (and diagnosis) my only symptoms were cramping. These cramps were what I imagine labour feels like. I would be unable to move, just writhing in pain. For me they were last several days or even a week before letting up. Sometimes I would vomit with them. Once they let up I generally felt completely normal.

My surgery was 4 and a half years ago and I am currently in a flare. It's different though - I got the cramps again initially but since January I have had constant pain on my right side (where the inflammation is) and have this constant feeling that I am full of wind that isn't being expelled from my body.

BMs are generally normal, and appetite is OK. I could probably survive off 2 meals a day and not mind but I generally try and make myself eat 3 as I am underweight and struggle to put the weight on. BMI is about 18, but was usually 17 but I am on weight supplements since April.

I also have pain in the joints.

How I understand it - cramping pain is usually indicative of food backing up due to small bowel narrowing.

 

[Charlotte.]

Thank you so much, Eleanor! Sounds pretty similar to what I am experiencing currently. Quite gassy in addition, BMs normal and could go with breakfast and dinner only, as it takes ages until I feel better after a meal or can imagine having a meal again. Can only deal with the pain when I eat too small portion sizes... (Same BMI as you currently btw, don't want it to drop any lower again, felt so weak back then).

Was your small intestine checked by MRI when you had symptoms back then or was ultrasound enough to detect the inflammation?

 

[eleanor_rigby]

Hi Charlotte,

I have had fecal proctectin levels checked in August 2015 (65), March 2016 (70), and June 2016 (60).
I had a CT scan in November 2015 - entirely normal!!
I had a colonoscopy and upper endoscopy in December 2015 - ulcers and inflammation seen at my terminal ileum, and inflammation since in my duodenum.

My GI has not done an MRI scan - much to my disgust as I have been in pain throughout treatment so wondering if I have scar tissue etc as the colonoscopy could not get into my small intestine properly.

 

[Charlotte.]

Thank you for summing up, Eleanor. If I understand it correctly, the inflammation in the small intestine (apart from inflamed terminal ileum) was visible via upper endoscopy, wasn't it?

Last time I had this kind of gastritis flare with the exact same symptoms my duodenum looked fine, so I would not assume that my doctor would see anything abnormal this time, but have to see what they suggest (maybe MRI?) if it doesn't get better in the next few days.

 

[hcrum87hc]

My inflammation was mostly located in my ileum before my surgery. I had several moderate to severe strictures, which caused a lot of similar symptoms to what you described: cramping, lack of appetite, and feelings of fullness. My strictures and inflammation could be seen during my MREs.

 

[jcashen87]

I have Crohn's in my small intestine only. For five years prior to surgery (and diagnosis) my only symptoms were cramping. These cramps were what I imagine labour feels like. I would be unable to move, just writhing in pain. For me they were last several days or even a week before letting up. Sometimes I would vomit with them. Once they let up I generally felt completely normal.

My surgery was 4 and a half years ago and I am currently in a flare. It's different though - I got the cramps again initially but since January I have had constant pain on my right side (where the inflammation is) and have this constant feeling that I am full of wind that isn't being expelled from my body.

BMs are generally normal, and appetite is OK. I could probably survive off 2 meals a day and not mind but I generally try and make myself eat 3 as I am underweight and struggle to put the weight on. BMI is about 18, but was usually 17 but I am on weight supplements since April.

I also have pain in the joints.

How I understand it - cramping pain is usually indicative of food backing up due to small bowel narrowing.

I am undiagnosed with my upper and lower scope procedures in 6 days. But what you described is exactly how I have felt for the past 5 years. I also struggle to put weight on. I am hoping they can find the source of my inflammation as my inflammation markers show me high. I don't want to have to do pill cam or anything else, I want to find it in one shot during this scoping, fingers crossed.

 

[Charlotte.]

Thank you, hcrum!

Fingers crossed for you, jcashen!

 

[DustyKat]

Hi Charlotte, :hug:

What the nutritionist said makes perfect sense. Unfortunately due to narrower size of the small bowel compared to the large bowel it doesn’t take a lot of inflammation to cause symptoms higher up the GI tract. A bit like a partially or fully blocked sink, what can’t get past the narrowing backs up causing symptoms like pain, nausea, vomiting, reflux, loss of appetite and so on.

My daughter has only ileal disease and leading up to her diagnosis all of her GI symptoms were upper abdominal/stomach, nothing was manifesting where her Crohn’s was actually located in the terminal ileum.

I see you also mention joint pain. I imagine you are talking about larger joints like knees, ankles, etc? If so bear in mind that this type of extra intestinal manifestation of IBD runs parallel to active intestinal inflammation.

I hope you get answers soon and wishing them to be easy to treat ones! Good luck! :heart:

 

[Charlotte.]

Thank you so much DustyKat! Really makes sense to me now, thank you.

I have enteropathic arthritis from Crohn's as extra intestinal manifestation, diagnosed 2 months after being diagnosed with Crohn's about two years ago (should be in my signature if it is working?).

 

[DustyKat]

Well now that I look back…yes it is in your signature. :lol:

 

[Charlotte.]

Well now that I look back…yes it is in your signature. :lol:

No worries, that's all right. Was just wondering if there is a problem with my signature. ;-)

 

[eleanor_rigby]

Hi Charlotte, an upper endoscopy can see the beginning of the small intestine (dudeneum) but that is all. For inflammation in the jejunum, that could only be detected in imaging (CT scan / MRI), or a pill can I believe.

 

[Charlotte.]

Hi Charlotte, an upper endoscopy can see the beginning of the small intestine (dudeneum) but that is all. For inflammation in the jejunum, that could only be detected in imaging (CT scan / MRI), or a pill can I believe.

Oh sorry, yes, of course! I mixed up the terminology of jejunum and duodenum.:facepalm: All right, I see, tank you!

 

[DEmberton]

I had some upper GI symptoms, like belching and feeling bile in my throat a lot and generally feeling sick after eating. The gastroscopy did show some mild gastritis, but it was the stricture in my Ileum that was the real problem. I'd get (sometimes intense) lower right pain. In the end my lower right abdomen would visibly well up for a few seconds and then go down with a big gurgle.

Good luck.

 

[eleanor_rigby]

I had some upper GI symptoms, like belching and feeling bile in my throat a lot and generally feeling sick after eating. The gastroscopy did show some mild gastritis, but it was the stricture in my Ileum that was the real problem. I'd get (sometimes intense) lower right pain. In the end my lower right abdomen would visibly well up for a few seconds and then go down with a big gurgle.

Good luck.

Yes I similarly have had upper GI pain, which completely disappeared after ileal resection.