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New here and confused

Greetings all,
I was just diagnosed with Terminal Ileitis after multiple hospitalizations and dealing with symptoms off and on for years. It seems like the Gastroenterologist refuses to call it Crohns, even though I had positive Lactoferrin tests, thickening of the terminal ileum wall, inflammation of the T.I., etc. My regular doctor thinks I have early stage Crohns and can't understand why the Gastro won't diagnose it. Has anyone experienced this? Any advice? I want to start doing something about this before it gets worse...my doctor suggested Entocort, but I still don't have a formal diagnosis of Crohns. Do they like to wait until you're shi**ng blood before they call it Crohns?? Any advice is appreciated!
 
Greetings all,
I was just diagnosed with Terminal Ileitis after multiple hospitalizations and dealing with symptoms off and on for years. It seems like the Gastroenterologist refuses to call it Crohns, even though I had positive Lactoferrin tests, thickening of the terminal ileum wall, inflammation of the T.I., etc. My regular doctor thinks I have early stage Crohns and can't understand why the Gastro won't diagnose it. Has anyone experienced this? Any advice? I want to start doing something about this before it gets worse...my doctor suggested Entocort, but I still don't have a formal diagnosis of Crohns. Do they like to wait until you're shi**ng blood before they call it Crohns?? Any advice is appreciated!
Hey! When I was first diagnosed with Crohn's a lot of doctors wouldn't confirm if had it. I had early Crohn's as well initially.
Have you done a biopsy of the area? That will definitely confirm it for your doctors.

My first year was really confusing for me. However after I relapsed after 9 months and it was definitely worse and I was put on steroids finally and haven't been off them since. I never stopped trying to figure out what was wrong with me and neither should you.

Try changing doctors. Do whatever test it takes to get the diagnosis. Please let me know if you get a confirmed diagnosis. I really hope you don't have Crohn's and if you do we are all here for you. Tc.
 
Thanks for the reply! I will be going to OHSU in Oregon (u.s) in July, hopefully I will know more then---happy I found this message board, doctors are making me feel crazy and medical bills keep rolling in...
 
Thanks for the reply! I will be going to OHSU in Oregon (u.s) in July, hopefully I will know more then---happy I found this message board, doctors are making me feel crazy and medical bills keep rolling in...
The medical bills are never ending:((((( I wish you lots of luck for your appointment. Let me know how it goes. I pray you find your answers. Good luck.
 
The top hospitals for crohns in the US are the mayor clinic in Minnesota, University of Chicago, and the Cleveland clinic. If you can I suggest getting an appointment at the mayo clinic in MN. They are very thorough there and will run all sorts of tests and may be able to help you on a diagnosis.

I hope it all works out and stay strong
 

valleysangel92

Moderator
Staff member
Hello and welcome to the forum

I think a lot of doctors these days are reluctant to stick a label on people without being 100% sure of the diagnosis. Crohn's is a lifelong condition that has no known cure and can have a massive effect on people's lives, so you can understand doctors not wanting to tell someone they have it if they aren't sure. You mention that you have inflammation of the T.I but don't say whether you have ever had biopsies taken? If not, this may be why the gastro is reluctant to formally diagnose you. There are a number of possible causes for intestinal inflammation and the treatments for Crohn's can be aggressive so many doctors don't like handing them out if they aren't sure for fear of making things worse.

Having said that things can't be left untreated and some of the lower grade medications are pretty low risk, so may be worth enquiring about. Entocort is a good low level steroid that doesn't tend to have a lot of side effects so it's a good starting place, and pentasa is a good start for healing some of the inflammation and is low risk (but not always effective). It may be that your gastro wants to wait to start treatment because it can mess up test results (which has happened to me before) but this is something that should be discussed.

Before your next appointment try keeping a food and symptom diary. Write down what your eating and when and keep a record of how you feel. Write down how many bowel movements you have and what they are like (normal, hard, soft, runny, mucous etc). Use a scale of 1-10 (1 being nothing 10 being extreme) to keep a record of any pain you have and if you have any nausea or vomiting then record that too. You can also keep a record of your stress levels (1-10 scale again) as stress is a known trigger for many conditions. All of this will help to see if there are any patterns in your symptoms or if they are triggered by a particular food which will in turn help the doctors decide what best fits your symptoms.
 
It took awhile for me to get a diagnosis too. I had to have 3 definitive tests that showed crohns before they would diagnose me. The meds to relieve crohns are pretty major drugs.. So they definitely want to be sure.
 
Thank you all for the valuable info! I did get a biopsy and it showed inflammation but not "Crohns"---what else could cause inflammation and thickening of the T.I. with positive fecal lactoferrin? The report said "consider Crohns" but no diagnosis (except non-specific terminal ileitis and chronic gastritis). The pain and bowel issue are unrelenting, I've been surviving on oatmeal, chicken and eggs for the past 9 months and have lost 53 lbs. I've had all the pathology tests done, etc. Looking forward to getting more answers, thanks again to all of you who responded!
 
A lot of things can cause inflammation in the bowel. If you have had Cdiff it can cause Inflammation I know.. Some people get gastritis or gastroenteritis from different stomach bugs..
 
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