Where is your crohns located

Crohn's Disease Forum

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Where is your crohn's located (you can choose multiple locations)

  • Small intestine

    Votes: 66 42.3%

  • Upper large intestine

    Votes: 42 26.9%

  • Lower large intestine

    Votes: 50 32.1%

  • Ileum

    Votes: 99 63.5%

  • Esophagus

    Votes: 7 4.5%

  • Mouth

    Votes: 10 6.4%
  • Total voters
    156
D

donna martinez

Joined
Jun 10, 2010
Messages
88
When I was diagnosed my crohns was located in my ileum, small intestine, and colon. But does it really make a difference because crohns could spread anywhere right. so does that mean if you have it in one place when you are diagnosed then it could spread to other locations?
 
All in my colon...soon to be removed :)

And yes, it can spread to other areas...
 
Mine is located mainly in my ileum (last part of small intestine where it connects to large intestine) and there were slight signs of colitis in the upper portion of my large intestine.
 
Mostly my ileum but I have some areas with inflamation at the moment in my large intestine. For my ileum there is more narrowing and inflamation which I found out today the remicade is not working for me.
 
According to GI: Large intestine (specifics not yet known)
According to radiologist: large intestine + 2 places in ileum
 
Been told quite severe in colon, waiting for barium x-ray to see where else it's lurking, have constipation so maybe in ileum too? ....
 
Hi.
My Crohn's is in my small bowel. which i am having it resected on 20th August !!!!

I do get it in my mouth too ... small round ulcers but not like a ordinary mouth ulcer !! if you know what i mean... it actually looks like a baked bean!! and its hard to not soft ...am i decribng it ok !!!! but they go with a few weeks....

Take care
Try and keep well
Marie
( massa)
 
Crohn's was in the ileum. which was removed in May. In the process of the surgery, they found a malignant tumor, with a lymph node affected. I am undergoing chemotherapy now

I'm on Pentasa and Endocort in the meantime, until chemo is complete (6 months)... then the GI doc will take over with other meds. D (from the Crohn's and chemo) is under control somewhat with Citrucel, Align and Questran.
It's a challenge trying to balance all the meds!
 
Oh Ann, I'm so sorry to hear that. Welcome to the forum; I hope we can be a good support to you as you are going through such grueling treatments.

ps: Penny (Jetta Lady) would probably pipe in at this point and welcome you to introduce yourself on the My Story thread, so I'll do that, too. :)
 
Terminal Ileum and duodenum (both since removed).

Now a bit of Crohn's activity where the small and large colons meet.
 
annholaz said:
Crohn's was in the ileum. which was removed in May. In the process of the surgery, they found a malignant tumor, with a lymph node affected. I am undergoing chemotherapy now

I'm on Pentasa and Endocort in the meantime, until chemo is complete (6 months)... then the GI doc will take over with other meds. D (from the Crohn's and chemo) is under control somewhat with Citrucel, Align and Questran.
It's a challenge trying to balance all the meds!
Click to expand...

Hi Ann and :welcome:

I'm so sorry that you find yourself in this situation, how very difficult for you both mentally and physically. I'm glad you found your way here 'cause we are a friendly bunch and there are many members on here that are very knowledgeable and experienced.

Do you think you would like to post in the Your Story forum so you receive the welcome you deserve?

Welcome aboard!

All the best, :)
Dusty
 
Was it TI or is it Colon???

:ymad::ymad:Well, Dougie Howser (My GI Doc..... gawd he looks like he's an escapee from pre school! LOL!.... says it is worse in the turns from the ascending to the trans and then the trans to the descending.... but until I started the entocort and the other one..... (gawd d*** IT! I am having more and more blank outs..... not black outs..... just my mind goes blank..... WTH????.. )anyway the large brown pill..... I was having problems with constipation which sounds like the TI .... but now it is more DH with a lot of blood... is the entocort causing this????
 
My entire colon and is now in the process of spreading into my small intestine. IT'S ALIVE!!! lol, sorry.
 
I was told at diagnosis total colon

don't know if its gone anywhere else though-but *touch wood* nothing to indicate its anywhere else
 
Do any of those of you have more constipation than d ever use Metamucil or something like that? Does it help?
 
YogaGirl said:
Do any of those of you have more constipation than d ever use Metamucil or something like that? Does it help?
Click to expand...

I use Miralax and 2 citrucel tablets daily; one doesn't work without the other. Without the citrucel, the food softens up in my intestines but doesn't move. Without the Miralax, the food dries up in my intestines. Then again, my symptoms are a bit unusual. I've never had any pain except from the constipation; with that taken care, the worst I get is a bit of a bloated feeling and discomfort.
 
At the moment I can feel it in my LLQ (area where my resection was) and URQ, but when I was diagnosed I was riddled with it from the tip of my tongue all the way down to my anus.

The doctors where I live suck, since first they thought it was aids (which was very improbable since I practice abstinence), then cancer, then an infectious disease, then something else I don't remember, and after consulting 4 different doctors in different fields they finally decide to bring in a GI, who couldn't even diagnose me. A pathology lab in San Antonio diagnosed me after doing tissue tests on the foot of colon they took out of me. Which is why it took so long for me to get diagnosed after the surgery.
 
Zalanicht said:
Oh and what's an appendix?
Click to expand...
That's just the thing, no one knows what it's meant for. They say it's an evolutionary left over. :ywow:

But really here's the real definition for the appendix:
Your appendix is a small, closed tube that is about the size of your finger. It attaches to the beginning of your large intestine, where the small and large intestines meet. It is open at the end that connects to the large intestine and closed at the other end, so material can move into and out of the appendix but it has nowhere to go. The appendix can contract like the small intestine, and it also has a secreting lining like the small intestine.
Click to expand...
 
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I get constipated more than the D and my gi suggested I either eat prunes, drink prune juice or if all else fails take miralax. Drink alot of water and try to eat things that won't get you constipated, if you know what that is.
 
Hmm well last i heard most effected in ileum and rectum also now moving up the ascending colon and now my mouth as well. So weird how some people get d and others constpiated from the same disease. Im definately on the d side of things there.
 
I get constipation and d. I take a heaping TBSP of wal marts metamucil (sugarless) and quit eating at 2pm. I get up 4hrs earlier than my work and have 5or so bmz. Then I dont have to worry about the emergency bathroom trips (a whole lot) the rest of the day. There are days that are not routine , but it seems to work best for me.
 
My Crohn's is located in the bottom third of my colon. I have an appointment with the surgeon on the 26th to discuss when I can have it removed. Then I won't have any :) Just me and Oscar!! lol
 
I have patches in the ileum, colon, and jujenum (spelling?). I get a lot of nausea because I have areas that are higher up in the small intestine.
 
YogaGirl said:
Do any of those of you have more constipation than d ever use Metamucil or something like that? Does it help?
Click to expand...
As my Doctor (My infamous Doogie Howser! LOL!) says I am a "Small Subset" of Crohns patients that have constipation..... a totally different "PITA"! LOL! My first line of treatment is a LOT of water... 4 bottles a day at least... then if that doesn't work I use Ducolax.. though Doogie says that isn't the best.. it irritates the colon supposedly... or I use the Mirolax powder....... I also have to use Preparation H suppositories to counter the swelling internally which gives me the constant "gotta go" feeling with no "action" .... if it gets bad enough then I use a prescription suppository... for what it's worth... Good luck!
 
Mine is primarily in the Descending and Sigmoid Colon. Additionally, some activity in the Rectum (No one can say for sure how much rectum though), and a skip 'spot' in the Cecum.

Mine doesn't seem to want to move, as it has been the same spots since since my first scope about 10 years ago.

I have had a CT scan, Pill cam and one GI got the scope about 20cm into ileum. All came back 'negative' for small bowel.
 
I think maybe the ileum is the winner here, but mine is in my Sigmoid area of the colon. When mine is bothering me I tell my husband "good ole' Sig is bothering me today!"
 
Both kids have ileitis with the fistulising and abscessing complications but never had diarrhoea...........



The five types of Crohn's disease with their symptoms are:

*Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.

*Ileitis: This type of Crohn's disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.

*Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn's disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.

*Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhea, and abdominal pain that can become intense.

*Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.

Dusty. :)
 
i had it in my terminal illeum which was removed than came back as crohn's colitis near my rectum, which was also recently removed. I'm very interested to see where it comes back next! I'm hoping my pinky toe.
 
hi mine is in small intestine, may have to have another colonoscopy as still losing weight now 8st 8lbs from 10st in 12months
was diagnose in july 2010, also got to have a detox scan
 
Parts of my colon.

If I were to have surgery now and removed the currently affected area (Doc mentioned this as a possibility in the future) sooner rather than later, would that make it less likely to have problems later on? Or does that not really have anything to do with how Crohns affects me? Just wondering..
 
mines is in the small intestine but near where the large and the small joins.. atleast thats what the nurse said.. my doctor is playing a spy these days and only pop up to give me my meds and now i cant get on to him again.. so we will see what happens next week..
 
flavrphil said:
i had it in my terminal illeum which was removed than came back as crohn's colitis near my rectum, which was also recently removed. I'm very interested to see where it comes back next! I'm hoping my pinky toe.
Click to expand...

did u find the surgery bad as i may be getting mine removed soon also.
 
@Billie- I suffer with the same thing.. Instead of having diarrhea, I have constipation... I have to eat everything that have fiber and in bulk.. That's what took them so long to send me to my Gastro... The emergency room doctors were saying crohns doesn't give you constipation.. Pfft yeah guess what, I prove it does it does..
 
hi i was just diagnosed with crohns the first week of october 2010 i was told mine is located in the ileum and i have multiple perennial fistulas which i just cam out of surgery to start getting those drained...which consist of 5 bright strings used to drain the infection...all this is soo new to me and im shocked to see that crohns affects so many people in different ways
 
Combatting Crohns

I was diagnosed with crohn's in my illeum... with the next step being surgical intervention but after sheer determination and diet changing I have been in remission for over 7 years now... this is why I have opened a blog to try and help people out.. I value all kinds of forums because I joined and read a lot from people's opinions, views, and what each of person has been trying to do to combat the disease. Feel free to visit my blog which I have just started joebonfante.com/myblogaboutcrohns and hope to contribute here also as much as I can. Thanks to forums like this one I gained lots of information and adapted it to myself.
 
I've added a proper multiple choice poll tot his thread, so feel free to vote away. If you want additional choices added, let me know. Anatomy isn't my strong point.
 
David, you might add "Stomach" since my Doc "Doogie" says that I have involvement there too...
 
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Mine's in the terminal ileum. I think I am so jealous of all those who have had theirs out surgically - the thought of not having LRQ pain everyday is so appealing!!!

I am also in the "constipation" subset - My sister has Crohn's and she presented with D like most. I have nausea and vomiting as well because I have strictures.
 
Mine is in the ileium, where the small and large meet. Could not get through with the colonoscopy, had to go for small bowel x-ray. 2ft stricture, having alot of constipation, which I think is due to stricture. Doctor baffled because D is what people with crohn usually have. Having the 2ft removed along with appendix Aug 5. as the symptoms mimic each other. Wish me luck and good luck to all with this disease.

Diagnosed: 1999(Undiagnosed for many yrs)
Currently: on Cimzia
 
I recently had a resection to have all diseased sections removed as I had a stricture and two fistulas. So, right now I'm in remission; although I know it will mostly likely come back at some point. I'm just excited to hopefully be in remission for a while and get back to living life a bit more normally than I've been able to in a while! :)
 
Mine is definitely in the last part of my colon. I have never had a small intestine scope and my colon is loopy so it could be further up too I guess!
 
sdbook said:
Sigmoid colon - anyone else???
Click to expand...

brand new to the forum! i just had my most recent scope done at the end of april. Based on the very shot conversation i had with the Doc after the procdeure he seemed to think it was UC. However when his nurse called me a few weeks later she said it was Chorns Colitis? I do recall him saying my inflammation was about 12 inches in, I have an appointment the 30th of this month and i'll keep you updated!
 
Started in duodenum and stomach (and have had more mild recurrence there), then have had bouts in the terminal ileum a couple of times, and have had low-level confirmed in lower colon as well. So all over haha!
 

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