Crohn's Diagnosis Question

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indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 6/8/2008 12:50 AM (GMT -7)   
I saw a different GI on Friday, to get a second opinion regarding my symptoms and scopes back in November.  Anyhow, he said it's Crohn's in my large intestine and he wants to do the small capsule to see if I also have small bowel disease, because the treatment depends on where it is located.  Is it common to have it in both the small and large intestines?
 
I have mixed feelings...I have waited for the diagnosis for what seems like a long time and I feel both relieved and sad.  I guess that is normal?  Part of me knew because my Internist was positive it was Crohn's but for some reason hearing it made it seem more real.  I guess I had the hope that it really wasn't.  Anyone feel that way?

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/8/2008 1:01 AM (GMT -7)   
I was really hoping that I had just had appendicitis... I mean... You can just imagine my surprise when the doctor told me he didn't take my appendix out because my colon was inflammed and that I'd have to see such and such doctor to find out what's going on...

//@.@\\'... And then, when I had a colonoscopy and my GI doctor told me I had Crohn's... I had no idea what it was and he didn't tell me what it was and he just sent me home with some medicine that I had no idea what it was for...

Anyway... Your feelings sound pretty normal to me. Though, I think it probably hits everyone kind of different... Some people still don't quite believe it after the doctor has said something to them. Then, one day... it just kind of sinks in...

'My God, I have a disease that I'm going to have my whole life.'

And all the other things that are associated with it... or could be associated with it...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 6/8/2008 4:00 AM (GMT -7)   
It sounds normal to me I've had 2 capsule and 3 colonoscopy, on the third colonoscopy was when they finely said it was crohn's, but the second capsule their checking to see if its worse. Its very common to have these test to keep up with how your doing, and if there is changes. With crohn's it can get worse,or better depending on you and what you do. I haven't had it for very long but I'm learning its not something that you take a pill and it goes away, or it fixes it. Good luck I know how you feel with it being mixed feelings I'm right with you there, you know your not nuts and someone believes you but crohn's was the last thing you could have thought it could be. keep coming here its a good place to be and there are a lot of good understanding people to help you.


Dawn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/8/2008 6:23 AM (GMT -7)   
Celey said...
I was really hoping that I had just had appendicitis... I mean... You can just imagine my surprise when the doctor told me he didn't take my appendix out because my colon was inflammed and that I'd have to see such and such doctor to find out what's going on...

//@.@\\'... And then, when I had a colonoscopy and my GI doctor told me I had Crohn's... I had no idea what it was and he didn't tell me what it was and he just sent me home with some medicine that I had no idea what it was for...

Anyway... Your feelings sound pretty normal to me. Though, I think it probably hits everyone kind of different... Some people still don't quite believe it after the doctor has said something to them. Then, one day... it just kind of sinks in...

'My God, I have a disease that I'm going to have my whole life.'

And all the other things that are associated with it... or could be associated with it...

Hi all, and Celey, I felt exactly as you did 15 years ago and it took 8 months of testing and hell, only to find out I had a thing called Crohns.  There was no computer back then at least not PC's.  I had to read up and I was on 27 different pills a day!  I had the bid D on and off  since I was 17, so I have had crohns for 30 years now.  I am on Humira, my 10th week, and it is paying off, it is starting to work!!!!!!!!!! Had my first semi-normal bm this morning!  I was on Remicade, but became highly allergic, and now just Humira and Flagyl and cipro one every other day. I am also volunteering when I can, I am trying to help find the cure!  By the way it is okay to think and say "why me" and feel sorry for yourself, but try to do what you can to stay out of pain.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 6/8/2008 6:56 AM (GMT -7)   
Crhn 's forever says" "By the way it is okay to think and say "why me" and feel sorry for yourself,"



Instead of asking, "why me?", I have always turned the question around and asked, "Why not me?" I mean, if I ask "why me?" it assumes that it would be just for someone else to have it, but not for me to suffer. Everyone experiences challenges in life. Everyone. Is it possible to feel sad, angry even, without falling into self-pity? I have felt sad many times through the course of living with this disease, but I have always been able to use that sadness to find acceptance.
Belleenstein:

30+ years living with Crohn's.

Post Edited (belleenstein) : 6/8/2008 7:00:46 PM (GMT-6)


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 6/8/2008 6:53 PM (GMT -7)   

Hi Indigosunrise,

 

The way you describe your feelings (both relieved and sad) is very normal, and also describes how I felt when diagnosed.  I actually started with symptoms in 2000, however, I didn’t totally accept the Crohn’s diagnosis until earlier this year (Feb. 2008).  For a few years, I tried to convince my gastroenterologist that my small intestine inflammation could be from taking too many NSAIDS.  At that time, the IBD blood test wasn’t as sensitive or accurate, and the results said I was negative for Crohn’s.  Many tests later (including Colonoscopies and biopsies), and years later, after abstaining from all NSAIDS, I was finally convinced that I have Crohn’s.  The results from a blood test called IBD Serology 7 (Prometheus Labs) also showed I have Crohn's.  I am no longer in denial.  At first I was sad, and a bit depressed, but I am now in “acceptance” mode.

 

One of the things that has helped me is this Healingwell forum---it can be a great support system so you don’t feel so alone.  Something else that has helped me is the organization CCFA (Crohn’s & Colitis Foundation of America).  They have extremely helpful information about the two diseases; what research is currently being done; information about the various medication treatments; support groups etc.

 

You probably already know this, but Crohn’s can occur anywhere from the mouth to the anus, and can have areas in between that are not diseased  (called “skip lesions”).  Am not sure of the frequency, though, of it occurring in both the large and small intestine.  The most common area for Crohn’s to appear is in the terminal ileum, where the small intestine joins the large intestine.

 

Good luck, and I hope you find lots of support along the way.


53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic to Pentasa and Entocort.  Will go on 6-MP in a few months.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 6/12/2008 8:24 PM (GMT -7)   
Hi Tsitodawg,

My new GI is over at the Granger Clinic--is it ok to mention Dr. names on here?

Anyhow, he seems to be really good, from what I can tell.

I hope your new GI is great as well!

Allison_82
Regular Member


Date Joined Jul 2005
Total Posts : 47
   Posted 6/12/2008 9:06 PM (GMT -7)   
Hey indigosunrise:

I was initially dx'ed with Crohn's three years ago-- first they ran some sort of blood test that was positive for Crohn's, and then a colonscopy with biopsies confirmed it. And still, I cried when I got the "actual" results after colonoscopy-- having the doctor say to me with certainty, "You have Crohn's disease" just hit home, even though I was relieved that I didn't have the lymphoma that doctors had initially suspected.

Last week, I had a follow-up colonoscopy, knowing full-well what they would find. And when the doctor came to tell me that I have Crohn's disease (duh!), I cried again. I realize that the Versed that they give you for scopes makes many people emotional, but also, having to hear about this in a very official way again kind of snaps me out of my comfy denial. I feel a little bit like I'm starting through my grieving process all over again. (And by the way...going through this can be lot like grieving. Mourning your former "disease-free self" or however you think of it.)

Basically, I identify with what you're going through. I would say relief and sadness is a normal, and completely justified, reaction to this diagnosis. Good for you for being able to identify all of those emotions. As a therapist (almost a psychologist now!) who really believes in feeling freely instead of squelching and denying our pain, I would encourage you to continue to explore all of your emotions, even the negative ones, and know that it's okay to feel sad sometimes. If you find yourself getting wrapped up in completely sadness and despair, however, I would encourage you to seek help from a mental health professional.

Best,
Allison
Allison
25 year-old female, Dx in 7/2005 with CD and Crohn's colitis
Rx: Asacol 4.8 gms/day (12 tablets!), Imuran 100 mg/day, Canasa suppositories. About to start Remicade due to spreading and continuously active disease.
Had a beautiful baby girl via c-section 11/21/07!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/12/2008 10:04 PM (GMT -7)   
indigosunrise said...
I saw a different GI on Friday, to get a second opinion regarding my symptoms and scopes back in November.  Anyhow, he said it's Crohn's in my large intestine and he wants to do the small capsule to see if I also have small bowel disease, because the treatment depends on where it is located.  Is it common to have it in both the small and large intestines?
 
I have mixed feelings...I have waited for the diagnosis for what seems like a long time and I feel both relieved and sad.  I guess that is normal?  Part of me knew because my Internist was positive it was Crohn's but for some reason hearing it made it seem more real.  I guess I had the hope that it really wasn't.  Anyone feel that way?
It may or may not be common to have it in both the large and small at the same time, I did, and infact, all the same time I had it affecting my colon, rectom, anus and small intestine, so it's not unheard of for it to affect more that one area at a time...and it's true, different meds reach different areas...when it's affecting your colon (referred commonly as crohns-colitis) and/or your rectom (referred to as proctitis) then meds like asacol, imuran and such are used because they target the colon, especially asacol and rectal meds are used in the case of proctitis and pred can be used regardless where the inflammation is.
 
You'll ajust to the confirmation of having CD, many end up more relieved then anything because they've gone so many yrs without a conclusive DX, as some cases are very hard to confirm a DX of either CD or UC...you'll come to terms with it at some point, what you're feeling is natural.
 
:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 6/13/2008 1:21 PM (GMT -7)   
Thanks everyone!

Pb4, with having it in so many different areas, were you put on many different medicines for it? I am worried about the cost of medicines for this disease...I have health insurance, and I am very thankful for that, but the thought of having $50 copays for perhaps 1 or more medicines each month scares me!

Pancoaifo
New Member


Date Joined Apr 2008
Total Posts : 19
   Posted 6/13/2008 4:24 PM (GMT -7)   
indigo,

I felt a little relieved myself, just because I finally knew for sure what was wrong. Then the flipside of it hit (my crohn's cost me my career - I was military until that dx - and a significant other who decided not to risk having little crohnie's running around the house.)

Anyhow, I don't know how common it is, but mine starts in the small and goes all the way out the back door. Which definitely makes my doctors happy as they get to throw the full tray of drug options at me...

Scott

29 years old, Dx April 2007, no surgeries, multiple fistulae
Taking Asacol, Canasa, Flagyl, Cipro, Relafen, 6-mp, Remicade

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 6/13/2008 5:19 PM (GMT -7)   
Actually, I think she has the right to grieve for lost health. Its not unhealthy as long as isn't doesn't become a habit of self-pity. Once you accept your feelings, you can move on..

Matthew

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 6/13/2008 6:24 PM (GMT -7)   
It is common to have Crohn's both in the large and small intestine (ileocolic). Wikipedia, quoting the American Gastro. Association, says that 50% of people with Crohn's have ileocolic disease while 20% have inflammation in the colon alone.

I think it is normal to be both relieved and sad. I know that's how I felt. It was good to finally know what was wrong, but at the same time I had been hoping to be diagnosed with something easily curable with antibiotics. So I was also very disappointed.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E

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