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Biopsy doesn't confirm Crohn?

Hi All,

Since November of 2016, I have been having on and off lower right side pain, feeling bloated and gassy.

I did a colonoscopy and upper endoscopy on Jan 31. My GI saw a single 5mm ulcer in the terminal ileum and biopsy was taken. I went back two weeks later for the results, GI said pathologist said it was inflammation but cannot confirmed that it was crohn. My GI wants me to do the pill cam procedure to get more information.

My questions: doesn't biopsy alone could confirm it is crohn? And if it is not crohn, what other things could cause ulcer or inflammation in the ileum?

thank you. :sign0085:
 
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Scipio

Well-known member
Location
San Diego
Other things could be NSAIDs or Celiac disease. But IMO the doc is wise to try the capsule camera to get a fuller look at the small bowel.

The fact that biopsy of the sole ulcer known so far doesn't look like Crohn's is good news for as far as it goes, but it may not be the full story. Crohn's is very discontinuous and patchy in its extent. There may be more or worse lesions farther up in the small bowel. Also, the biopsy when collected may have simply missed taking the portions of the ulcer that are diagnostic of Crohn's - such as granulomas. So the news is good so far, but a wider look is probably warranted.
 
I'm in the same boat as you. I have biopsies of 4 different patches and all came back chronic ulcerated colitis. But still I am scheduled for a pill camera in a few weeks. I have periods of intense pains (none at the moment...woohoo) and always have bleeding. I'm hoping for a diagnosis and treatment plan after this next test. Sure would be nice to see an improvement. I did a celiac blood test also and it came back negative but I'm still on no gluten anyway as it seems to decrease symptoms.

Im also curious to see what my stomach looks like as I almost always have nausea. Uggh
 
are you on any medication? I am currently taking pentasa 500mg two pills two times a day. I was still having pain so my doctor said I can increase the dosage to two pills three times a day. My pill cam procedure is scheduled for 3/13. nervous....hate going to the doctors in general. My doc pretty much already suspect that I have crohn's in the ileum but mild....but I am hoping for the best.

It's good that we get these tests done so we know what's going on so we can have treatment and live normal. It's weird because my stomach always felt normal until last year November when I started having the right side pain. But I was also taking ibuprofen a lot during that month so maybe it triggered it? sucks......:frown:
 

cmack

Moderator
Staff member
Hi luckysparks,

A biopsy is not always going to show Crohn's. I say my biopsy proved diddley squat! There is a disease affecting my insides. and you are not alone in these "negative biopsies". Crohn's loves to hide inside you where most tests almost always miss it. It can manifest its ugly head anywhere from the mouth to the anus.

I'm scared of the pill cam for fear it might get stuck. I don't want to meet another surgeon to get it out. There is a test pill that dissolves if it gets stuck but it is very expensive. :shifty-t:

Just my thoughts,


I wish you all the very best,

cmack
 
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cmack

Moderator
Staff member
Hi luckysparks,


Avoid NSAID's they can contribute to the problem. This group of drugs are aspirin, ibuprofen and naproxen, all available over the counter in most countries. Tylenol (acetaminophen) is generally not considered an NSAID because it has only little anti-inflammatory activity.


I hope this helps,

cmack
 

my little penguin

Moderator
Staff member
A lot of pathologist will not check the Crohns box unless they find a granuloma
Unfortunately only 30% have granulomas found on biopsy .
 
Hi luckysparks,


Avoid NSAID's they can contribute to the problem. This group of drugs are aspirin, ibuprofen and naproxen, all available over the counter in most countries. Tylenol (acetaminophen) is generally not considered an NSAID because it has only little anti-inflammatory activity.


I hope this helps,

cmack

Thanks for the tip! Yeah, I avoid taking any nsaid from now on. I think my crohn didn't have much symptoms all these years until that one month when I started taking a lot of ibuprofen then it triggered the right lower side pain and everything else. Went to ER and they thought it was maybe appenditis but utrasound didn't show anything. Took a few months to finally sort it out and have answers to my problem.
 
Hey just to add my biopsies of ulcers in my ileum were also ruled not to show Crohn's by a pathologist but my GI was still able to diagnose me with Crohn's anyway based on my history.
Thanks for the info. Does crohn usually target the ileum first? Are you on any medication right now?
 
A lot of pathologist will not check the Crohns box unless they find a granuloma
Unfortunately only 30% have granulomas found on biopsy .
Interesting to know. I was just confused because I seen many posts online where people were like "biopsy ruled out crohn" so I thought biopsy alone would confirm whether you have crohn or not. It's good to know and learn more about it since I'm totally new to this. Thank you for replying to my post.
 

cmack

Moderator
Staff member
lucky,

Keep researching. You are your own best advocate. Bring a family member if you need to, it goes a long way towards your credibility. I have had dismissive doctors before.

All the very best,

cmack
 
are you on any medication? I am currently taking pentasa 500mg two pills two times a day. I was still having pain so my doctor said I can increase the dosage to two pills three times a day. My pill cam procedure is scheduled for 3/13. nervous....hate going to the doctors in general. My doc pretty much already suspect that I have crohn's in the ileum but mild....but I am hoping for the best.

It's good that we get these tests done so we know what's going on so we can have treatment and live normal. It's weird because my stomach always felt normal until last year November when I started having the right side pain. But I was also taking ibuprofen a lot during that month so maybe it triggered it? sucks......:frown:
Unfortunately I am not on any medication at the moment. I was prescribed Pentasa enemas which gave me violent headaches and what seemed like a lot more bleeding. I think my doctor suspects crohns also but since I don't have daily diarrhea and haven't lost any weight. (I have gained. :/) He thinks I don't fit the criteria. Thus the additional testing. I also really hope I can get on some medication to help as the fever and fatigue can be very debilitating. And of course the swollen belly and never knowing what's going to set off the pain.
 
are you on any medication? I am currently taking pentasa 500mg two pills two times a day. I was still having pain so my doctor said I can increase the dosage to two pills three times a day. My pill cam procedure is scheduled for 3/13. nervous....hate going to the doctors in general. My doc pretty much already suspect that I have crohn's in the ileum but mild....but I am hoping for the best.

It's good that we get these tests done so we know what's going on so we can have treatment and live normal. It's weird because my stomach always felt normal until last year November when I started having the right side pain. But I was also taking ibuprofen a lot during that month so maybe it triggered it? sucks......:frown:
My pill camera test is also on March 13th at 7 am. Ill think about you while im doing my prep the day before...and swallowing that huge egg sized camera. I just found out though that I have to take 3 bisacodyl tablets along with the normal prep. When reading about these tablet (as I have never had to do this step before) it says do not take if you have IBD. Uggh
 
My pill camera test is also on March 13th at 7 am. Ill think about you while im doing my prep the day before...and swallowing that huge egg sized camera. I just found out though that I have to take 3 bisacodyl tablets along with the normal prep. When reading about these tablet (as I have never had to do this step before) it says do not take if you have IBD. Uggh
mine is at 8:30am. I m not too worry about the prep since I know how it is when I did the colonoscopy and upper endoscopy. Is the bisacodyl to help to clean out your system?

I am still experiencing some on and off pain. and upset stomach after I eat. Do you ever feel scare to eat because you worry about how you will feel afterward?? I keep having that feeling but I am forcing myself to eat since I lost like 7 lbs since november. I contacted my GI via email today since I was also having acid reflex in the morning....will see what he will say.

Good luck on your pill cam procedure!!
 
mine is at 8:30am. I m not too worry about the prep since I know how it is when I did the colonoscopy and upper endoscopy. Is the bisacodyl to help to clean out your system?

I am still experiencing some on and off pain. and upset stomach after I eat. Do you ever feel scare to eat because you worry about how you will feel afterward?? I keep having that feeling but I am forcing myself to eat since I lost like 7 lbs since november. I contacted my GI via email today since I was also having acid reflex in the morning....will see what he will say.

Good luck on your pill cam procedure!!
Yes. Good luck.
 
i wasn't feeling nervous about it until i started googling and reading in the forum about how the pill cam might get stuck.......now i'm shaking and freaking out thinking about it. it is rare that it will get stuck??
 

cmack

Moderator
Staff member
I understand your anxiety. I get like that before all of my procedures. I wish I had an answer, I have always wondered the same thing about the pill cam. Someone told me one time there is a test capsule the same size that you can take first that dissolves if it gets stuck. Maybe ask about that.
 
i heard about that test pill but my procedure is on monday. dont know if i should just go along with it. the doc should know if i have a high chance of pill retention right?
i don't know...still having lower right pain and stomach feeling weird after eating. i just want to be in bed and not face it........but at work right now not concentrating at all and been googling and freaking myself out the whole morning...need to stop.
 
mine is at 8:30am. I m not too worry about the prep since I know how it is when I did the colonoscopy and upper endoscopy. Is the bisacodyl to help to clean out your system?

I am still experiencing some on and off pain. and upset stomach after I eat. Do you ever feel scare to eat because you worry about how you will feel afterward?? I keep having that feeling but I am forcing myself to eat since I lost like 7 lbs since november. I contacted my GI via email today since I was also having acid reflex in the morning....will see what he will say.

Good luck on your pill cam procedure!!
Yes the bisacodyl is part of the prep they had recommended BUT I have chosen to use the pico salax as I find that so much better. I have three packets on hand and I will use all of them if necessary rather than the other prep. The pharmacist said it would be fine as I wont have electrolyte imbalances which are more likely in the aging population.

I haven't lost any weight, I have gained but I have only been eating eggs, avocados, fish, bananas and potatoes. Pretty much for the last 8 months. If I try to add anything else in I get much more bloating, pain and bleeding. I think those items are high in calories so I guess that's why I gain. Plus I just sleep or lay on the couch so that isn't helping. Cant wait to get this camera test over and get into see the specialist. Hoping I don't have to wait another 6 weeks for that though. uggh
 

cmack

Moderator
Staff member
i heard about that test pill but my procedure is on monday. dont know if i should just go along with it. the doc should know if i have a high chance of pill retention right?
i don't know...still having lower right pain and stomach feeling weird after eating. i just want to be in bed and not face it........but at work right now not concentrating at all and been googling and freaking myself out the whole morning...need to stop.
Just try to chill. You should mention your concerns to the doctor. I think Google will just drive you around the bend. The people who make the most comments on any given subject are usually the unhappy ones. The people who had a good/normal experience tend to be far less vocal.

Just my thoughts, hope all goes well,

cmack
 
Just try to chill. You should mention your concerns to the doctor. I think Google will just drive you around the bend. The people who make the most comments on any given subject are usually the unhappy ones. The people who had a good/normal experience tend to be far less vocal.

Just my thoughts, hope all goes well,

cmack
that's so true. yeah, i kind of calm down a little bit and just came back from lunch, didn't felt like eating but i down my lunch. was chatting with my co workers and didn't think much about my pain although stomach making weird noise now.

thank you, cmack. your comments really help me.
 
Yes the bisacodyl is part of the prep they had recommended BUT I have chosen to use the pico salax as I find that so much better. I have three packets on hand and I will use all of them if necessary rather than the other prep. The pharmacist said it would be fine as I wont have electrolyte imbalances which are more likely in the aging population.

I haven't lost any weight, I have gained but I have only been eating eggs, avocados, fish, bananas and potatoes. Pretty much for the last 8 months. If I try to add anything else in I get much more bloating, pain and bleeding. I think those items are high in calories so I guess that's why I gain. Plus I just sleep or lay on the couch so that isn't helping. Cant wait to get this camera test over and get into see the specialist. Hoping I don't have to wait another 6 weeks for that though. uggh
my GI said i only need to drink one of the prep starting at 5-6pm. but no food after 1pm. don't have to take anything else.

maybe i should add potatoes into my diet. i dont want to lose anymore weight.

i just want to hurry up with the test too and be better already. i hate to think back few months ago, i was eating whatever i want and not having much stress but now i feel sad all the time especially in the morning when i have to get up for work.

it sucks waiting that long for appointments! when i first got my appt with the GI, it was like 3-4 weeks and that felt like forever already
 
my GI said i only need to drink one of the prep starting at 5-6pm. but no food after 1pm. don't have to take anything else.

maybe i should add potatoes into my diet. i dont want to lose anymore weight.

i just want to hurry up with the test too and be better already. i hate to think back few months ago, i was eating whatever i want and not having much stress but now i feel sad all the time especially in the morning when i have to get up for work.

it sucks waiting that long for appointments! when i first got my appt with the GI, it was like 3-4 weeks and that felt like forever already
As far as not losing any more weight, have you tried nutrition shakes?
 
Hey guys,

So I went back for my follow up appointment with my GI and he told me that my pill cam result was normal. The inflammation cleared up and I don't have crohn. I was a bit shock because I was kind of prepared the worst. He said the inflammation was most likely caused by taken ibuprofen and the pentasa probably helped clear it. I was still having like on and off mild lower right abdominial pain. He said I could take bentyl as needed for pain. On the report online I saw that he diagnosed me with enteritis of small intestine. When I googled that it seem to show that crohn could be a cause of it. I'm a bit confused. Any one have idea about it?
 

cmack

Moderator
Staff member
Hi luckysparks,

I would be confused as well. I hope the doctor is right and you get back to normal. I guess you will soon find out. Keep in touch bud.


Finest wishes,

cmack
 

Scipio

Well-known member
Location
San Diego
On the report online I saw that he diagnosed me with enteritis of small intestine. When I googled that it seem to show that crohn could be a cause of it. I'm a bit confused. Any one have idea about it?

This is quite good news. "Entertitis" is a non-specific term that just means there was inflammation in your gut. And that certainly could have been caused by the ibuprofen and not necessarily a case of Crohn's.

Right now I'd be inclined to accept what your doc is saying and assume you don't have Crohn's. Just go easy on the ibuprofen and other NSAIDs and be very happy that you may well have dodged the Crohn's bullet.
 
This is quite good news. "Entertitis" is a non-specific term that just means there was inflammation in your gut. And that certainly could have been caused by the ibuprofen and not necessarily a case of Crohn's.

Right now I'd be inclined to accept what your doc is saying and assume you don't have Crohn's. Just go easy on the ibuprofen and other NSAIDs and be very happy that you may well have dodged the Crohn's bullet.

Thanks Scipio. Yes, when my GI said your pill cam result came back normal. I was like "what...?....so I don't have crohn??" I was very relief. But the thing is I am still having the same lower right side pain as I did five months ago until now. I thought it kind of went away but during the weekend, I felt it again. Do you think that the inflammation is still healing and it takes time to completely get better? I took bentyl yesterday night and this morning i think i feel better. but woke up with back pain. I feel like whenever I have slight pain, i get so paranoid. Maybe I am getting old, I just turned 30 last month. hehe....:D:ysmile:
 
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