# Terminal Ileum



## pewpewlasers (Nov 12, 2009)

How many of you have Crohn's located in your terminal ileum?
What are the treatments? Have you seen it through the scope and what does it look like? What are your main complaints with having your Crohn's located there?
Has it spread to your lower and large intestine?

I've read that Crohn's is more common in the terminal ileum than anywhere else. My Aunt who has CD said hers started there and spread. 

I'm trying to be my own advocate and educate myself as much as possible.

What else would cause inflammation and overall diseased look of the terminal ileum? 

I'm afraid my biopsy from my colonoscopy will come up negative for Crohn's and they will be like, "Oh well" and let me suffer more.


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## farm (Nov 12, 2009)

Mine was in the terminal illieum but surgery cut all that out and now it is further up in the illieum.


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## imisspopcorn (Nov 12, 2009)

Hello Pewpew.....Whenever I had colonoscopies done prior to my recent surgery, the doctor could never advance the scope into my ileum because it was too inflamed. I always had normal colonoscopies. My CT scan and barium swallows always show narrowing of the ileum. At my scope this past July, the doctor was able to advance the scope into my ileum and could see active disease.( That's the area that was removed during the resection) Wasn't your ileum inflamed with one of your results, or am I confusing you with someone else?


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## beth (Nov 13, 2009)

I believe the last bit of my Crohn's is in the terminal ilium. The slight complication being that I'm otherwise asymptomatic so we can't tell how I am without more 'oscoping. 
Hence the drugs.


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## pewpewlasers (Nov 13, 2009)

imisspopcorn said:
			
		

> Hello Pewpew.....Whenever I had colonoscopies done prior to my recent surgery, the doctor could never advance the scope into my ileum because it was too inflamed. I always had normal colonoscopies. My CT scan and barium swallows always show narrowing of the ileum. At my scope this past July, the doctor was able to advance the scope into my ileum and could see active disease.( That's the area that was removed during the resection) Wasn't your ileum inflamed with one of your results, or am I confusing you with someone else?


Yes. The doctor said my terminal ileum was "red". He didn't go into much detail or I just only remember the "red" part. The picture of it looks pretty nasty and looks far from normal.
I've been doing a lot of research and all though it doesn't look as bad as some pics I've seen, mine doesn't have ulcers and whatnot. Overall, it doesn't look healthy.
When I had the scope done I was getting over being really ill with the whole not being able to eat and drink thing so I think it is safe to assume my terminal ileum was getting over being inflammed or whatever.


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## imisspopcorn (Nov 13, 2009)

Hmmm, to me that is very suspicious...I hope you don't have this disease. I hope you miraculously heal...


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## shazamataz (Nov 13, 2009)

Well apparanty a person CAN be misdiagnosed with Crohns! I just heard from one of the girls I was PMing a while back who has now been told that she doesn't have Crohns but has had a nasty virus that mimicks it. She was told by the doc that people have sometimes had bits removed with this to find they don't have the disease after all!


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## D Bergy (Nov 13, 2009)

I had some inflammation in this area.  It was not bad but I did not like having it at all.

I can actually feel it a bit if it is inflamed.  It has been good now for a while.  I am going to get a scope in January sometime to see how things look.  Only way to know for sure.

Dan


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## fenway1971 (Nov 13, 2009)

I have it in the terminal illeum as well as my entire colon.  I don't know if it's spread because when I was first diagnosed that was where it was.  My small intestine elsewhere is disease free (knocks on wood).

BTW, welcome Pewpew.  Great name.


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## katiesue1506 (Nov 13, 2009)

You know, no one's ever told me exactly where mine is... I've just heard "all over" Kinda frustrating.


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## BWS1982 (Nov 13, 2009)

The T.I. is the last bit of the small intestine right before the cecum, and yes, empirically it's the most common area of inflammation with Crohn's Disease....and I have had nothing breach into that segment or higher up, it's always been at the ascending colon and all the way to the end (rectum). I don't have anything but "normal terminal ilieum" come up on the annotations on colonoscopies, which I think is good and bad, as my disease is at least restricted to the entire colon, rectum and sigmoid areas..started as splotchy but had since grown into severe Crohn's Colitis and now virtually blankets the entire colon and rectum, with recent findings indicating the rectum is severely inflamed, whilst the colon is only mildly inflamed.

From what I've gathered, the TI being inflamed will cause great pain and possibly nausea, as does most inflammation in the small bowel. Not that large bowel afflictions can't result in significant pain as well (I'm familiar with this), but from all my reading on this forum and to appease my obsessive need for information on this disease, the small intestine being inflamed seems to result in more dominance of the pain factor than colon-specific inflammation. As to why it's so common with the disease, and why it's the most common as far as area of inflammation, I don't think I have the answer, nor does science, I presume, because there are many blanks in the knowledge base with IBD.

To rule out what else it could be, and not Crohn's, I know you can rule out Ulcerative Colitis, because that specifically and uniquely affects the colon. Once you have inflammation in the small bowel, that possibility is off the table. You're still left with some, but at least that's not one. I only mention this because between Crohn's and UC, my GI team (all 6 in 3 years) has always had to decide between the two. I'm pretty certain I have Crohn's because it started out as patchy and then covered the whole area, I also had note of granulomas, which are another clue. Crohn's Disease has deeper ulcerations and digs in deeper into the tissue than most other diseases.

My guess is that the cause for the greater incidence of pain in the TI and small intestine in general is that it's a narrow bit of the GI tract as it is, and inflammation only makes it more narrow. If you narrow an already tight space designated for the commute of food/waste, pain would theoretically ensue more than if you start to narrow a larger, thicker space. This is just a hypothesis, and could be wrong, but it makes sense to me. 

I hope we're helping Pew Pew.


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## pewpewlasers (Nov 14, 2009)

Thanks for that info. 
It really seems to me that when the terminal ileum gets inflammed, everything backs up and causes pain, bloating, and nausea. I imagine it's like an iv drip when I'm trying to eat. Everything is sitting there waiting to move on but it's only coming out one drip at a time.


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## Jennjenn (Nov 14, 2009)

I have it in the ileum also, it is the area in which I have had most of my problems. Surgeries, abcess, blockage, and inflamation. It is where I have most of my abdominal pain also. Bloating!! I look like I am pregnant right now with how much I am bloated. My dog is using my stomach as a pillow  My tummy is flat besides when I have the reoccuring bloating that is very uncomfortable. 
I hope that you do not have Crohns pewpew ....I do hope that you find answers though


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## pewpewlasers (Nov 14, 2009)

Do you get joint aches?
I ate a little bit yesterday and then of course, I got painfully bloated and started to feel like crap. Then shortly after eating my ankles, hip, and back started to ache. They still ache and it's driving me crazy. 
Since I ate I feel like I have to go to the bathroom, cramps and everything, but then nothing happens.
Think I need to stick to a liquid diet for now.


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## Jennjenn (Nov 14, 2009)

I do get joint and bone aches....lately it has been getting worse. Last night was pretty bad because throughout yesterday I felt like I was in a lot of pain. I went to a concert that I won tickets off a radio station to and I didnt think it would be in a small area packed standing room only with 200 people ontop of eachother....I had aches and pains and then started to worry that I would have a possible emergency and there was no way of getting out till it was over. Luckily nothing happened besides the aches and pain. Worst of all the concert was horrible!!


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## Guestly (Nov 14, 2009)

My scope showed crohns of the terminal ileum, but now they think that was just the tip of the ice berg.  I did see it on the scope though, and it looked just like acne.  Now I am having tests on the small bowel, barium swallow, CT of pelvis and CT of abdomen - it seems to be a pretty long journey...

Good luck with yours!

Lishyloo


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## pewpewlasers (Nov 14, 2009)

Lishyloo said:
			
		

> My scope showed crohns of the terminal ileum, but now they think that was just the tip of the ice berg.  I did see it on the scope though, and it looked just like acne.  Now I am having tests on the small bowel, barium swallow, CT of pelvis and CT of abdomen - it seems to be a pretty long journey...
> 
> Good luck with yours!
> 
> Lishyloo


My scope showed bumps on my terminal ileum. They looked kind of black and some were red.


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## Pirate (Nov 14, 2009)

pewpewlasers said:
			
		

> Do you get joint aches?
> I ate a little bit yesterday and then of course, I got painfully bloated and started to feel like crap. Then shortly after eating my ankles, hip, and back started to ache. They still ache and it's driving me crazy.
> Since I ate I feel like I have to go to the bathroom, cramps and everything, but then nothing happens.
> Think I need to stick to a liquid diet for now.


No wonder you ache, after eating your ankles, hips and back. I'd hurt to if I ate that much at one time:ylol2: . I can usually only eat a couple of ribs at one sitting.:lol:


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## shazamataz (Nov 14, 2009)

Pirate


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## BWS1982 (Nov 15, 2009)

:ylol2:


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## cheeky (Nov 21, 2009)

i have it in my terminal ileum and cecum.. and a either ascending or descending colon.. i forget but definitely in the terminal ileum and cecum... all down my right side.


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## DanSJVDavis (Nov 21, 2009)

My terminal ileum is gone because that's where the worst of my Crohn's was located.  You may have noticed I've posted a lot around her about B12 and other things (bile salts, etc) that are absorbed in the terminal ileum.  I've got it in other places, like the rectum and higher in the small bowel, but not as bad as was in the ileum.


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## tek254 (Jun 25, 2011)

Mine is in the TI and I also have the joint pain. From the lower back down is a war zone. You may also hear acute Ileitis. This was my first diagnosis which led to the rest. Headaches are also common if one suffers from joint pain. I hope your case is viral and goes away on its own. I had two cases of sever joint pain and swelling with no definitive diagnosis years ago. I feel this was the start of Crohns. best of luck and welcome to the forum. Lots of answers here, lots of Friends, and lots of postings that make your stomach hurt from laughing (nice change).


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## Mel78 (Aug 25, 2013)

My Crohn's was in my terminal ileum.  I didn't think that I had many problems until recently when i developed a bowel obstruction and required a resection of a small part of my small bowel, terminal ileum, ileocecal valve, cecum, and appendix.  I'm waiting to see where it will return although I hope it won't for a long time!


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## kiny (Aug 26, 2013)

pewpewlasers said:


> Has it spread to your lower and large intestine?


It never has, on biopsies they could sometimes see a tiny bit of very mild patchy inflammation in the colon, but it never "spread" from the ileum to my colon. It has remained focused on my terminal ileum.

edit-I just noticed this is a really old topic


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