Newly diagnosed.... and lost!

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New Member

Date Joined Aug 2009
Total Posts : 4
   Posted 8/22/2009 7:16 PM (GMT -7)   
Hi all,

Glad i found this forum. I was diagnosed with Chron's ( terminal ilium) in April 2009 and put on 9 mg of Entocort and 4000 mg of Pentasa.
Had small bowl follow through and CT- and found narrowing in small intestine too. However i am going to seek another opinion, as i am not convinced i really have chron's as my only complaint has been right side pain... and to date i do not have any of the classical sympthoms. In fact, i had less frequent right side pain when was not taking any medication, so doctor agreed to wean me off Pentasa. Feel okay. now trying to wean off Entocort too, as my goal is to not be on any medication and try getting pregnant.

went from 9 mg entocort to 6 and have really bad headache. its been 3 days and haven't let doctor know i am doing this.

any advice or tips? did anyone else start off like this, with out all the symptoms, maybe i am just in denial. i just want to make sure i have not been over diagnosed, although the endoscopy, colonscopy, ct and sbft support cd according to my gi...... thanks in advance for any guidance.

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 8/22/2009 7:30 PM (GMT -7)   
I've had crohn's (no doubt about it, have the perianal crohn's skin tags as proof) for 18 yrs now and have virtually never had right or left or mid-section pain, I only ever had pain in my lower back during my most severe degree of flaring...are you thinking that because of your pain location you don't have CD?

There are varying degrees of symptoms for each IBDer and even for each flare.

My bum is broken....there's a big crack down the middle of it! LOL :)

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 8/22/2009 7:40 PM (GMT -7)   
Were you diagnosed from a biopsy from your scope or by visual ID of inflammation, etc? A biopsy is hard to argue with, from my understanding. Anything short of a diagnoses from a positive biopsy... there might be some room for argument...

If your instinct is to get a second opinion - DO IT. There's no reason not to if you're willing to go through the process. It sounds to me like you need a second opinion, as much for YOUR piece of mind as anything official. Make some calls, and see if you can find a specialist that has a lot of experience with crohn's. Some GI's only have a handful of crohnie patients, so they are relatively clueless.

Also, tapering steroids can be a wickedly tricky thing. I get headaches with as small as a 2mg decrease, and the headaches can last for a week or so. I always get prednisone though, so I'm not experienced in how it might be different... I'm sure another Entocort person will come along.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 8/22/2009 7:46 PM (GMT -7)   
the right flank pain suggests the ascending colon is getting the result of the problems of the end of the small intestine (terminal illeum) and likely inflammed. You also say the small intestine is narrowed so this might causing problems where the terminal illeum is, as it connects to the ascending colon. "Classic" is where the disease shows intermitant areas of inflammation, and your description implies there are areas of healthy bowel, so yes this is likely crohns not ulcerative colitis.
My advice is keep something consistent, the medications, your diet, such as small meals throughout the day, etc. preferably both. I am guilty of taking the meds into my own regimen and it is not so wise. The entocort is a synthetic corticosteriod and affects your electrolytes so you get a headache(such as being dehydrated). You should keep this drug consistent as it affects your electrolytes (salt and potassium) and you want them consistent. It is this entocort you should be careful about changing.

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 8/22/2009 10:43 PM (GMT -7)   
It generally takes a couple of weeks for your adrenal glands to make up the shortage of cortisol caused by reducing your synthetic corticosteroids (endocort here). Endocort is supposed to act more locally and thus cause fewer side effects, but tapering off it takes time - up to a month for each step.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/23/2009 6:14 AM (GMT -7)   
Well in my opinion the narrowing is telling you something by itself. But I would suggest get a colonoscopy or maybe even a pill cam to get a more conclusive diagnosis. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 8/23/2009 11:04 AM (GMT -7)   

My daughter's only symptom for two years was extremely mild lower right quadrant pain. She could feel it ONLY if she pressed really hard. And never had D.

I hate to say it, but the results of the SBFT and CT, showing narrowing, plus the location of the pain do sound like Crohn's. If you still had pain while on Pentasa and Entocort you were not in remission.

Why are you tapering off all meds if you are not in remission?

Regular Member

Date Joined Jan 2006
Total Posts : 135
   Posted 8/23/2009 12:49 PM (GMT -7)   
My opinion.   keep a diary of your diet.  i had pain on my right side that sent me to Mayo.  had partial blockage in small intestine.  Us chrohnies, or should i say myself cannot have any dairy,nuts,anything with small seeds, heck anything with fiber could plug you up.   Also i do agree with seeing another Professional GI with lots of chriohns knowledge yeah    Good luck.   

Veteran Member

Date Joined May 2003
Total Posts : 1671
   Posted 8/23/2009 1:09 PM (GMT -7)   

I did not have classic symptoms either. RUQ pain was pretty much it, and some iritis in my eyes. It is not that way now unfortunately. After several years I am struggling with daily diarrhea for the past few months. Scope is tomorrow and I'm hoping it will prove helpful

New Member

Date Joined Aug 2009
Total Posts : 4
   Posted 8/23/2009 11:06 PM (GMT -7)   
Heatmiser, good luck with the scope tomorrow.
Thanks to all for the responses. I have a second opinion appointment lined up for next month at Cedar Sainai in Los Angeles. We'll see what happens. I'd really like to get pregnant soon, and if i have really do have cd, i guess it is better to do it now vs later when the disease is full blown. i understand that entocort is a category "c" med and not ideal to be on while pregnant. since i had a pretty easy time getting off the pentasa, i figured why not get off the entocort too. i really did have very little dull pain on my right side before the diagnosis and starting the meds....and since i started i have had almost daily pain, and not so dull anymore.

so i am thinking it could be;
1. my smpthoms were not as bad before i started meds, and it just so happens they've gotten worse,
2. the meds are causing the pain?

during my colonsocopy they did do a biopsy, and ultimately the diagnosis was 'favors cd'.... could that mean its more likely cd vs. uc or that it could be cd, but we're not sure, and are going to guess cd?

again, thanks for all the info guys, this is a very confusing and scary time for me, so any and all feedback is greatly appreciated.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/24/2009 6:16 AM (GMT -7)   
Miss_Melissa, it does sound like you do have Crohns. One thing I will tell you is we have had many women on this forum have pregnancies and they have taken meds such as steroids, Pentasa, Imuran/6mp, Remicade and Humira and all had healthy babies. The thought is a healthy mom produces a healthy baby. Lots of time when women are pregant and who have Cronhs they will feel great while pregnant, but as soon as they deliver because of all the hormonal changes they will flare badly. So its better to stay on medication and stay healthy. JMHO

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Apr 2009
Total Posts : 33
   Posted 8/24/2009 7:27 AM (GMT -7)   

Miss Melissa,

If you have doubts absolutely get a second opinion.  I had a diagnoses reversed by a second opinion.

I was diagnosed with Crohns in February after right lower quadrant pain.  The doctors thought I had appendicitis and sent me for a CT.  No problems with appendix but CT showed narrowing in TI and radiologist suggested CD.  GI performed a colonoscopy, endoscopy, and small bowl fallow thru.  I had several lesions and inflammation both visible and in biopsy.  GI said although labs where negative and biopsy were not 100% conclusive he was pretty sure it was Crohns.

I started Flaygl, prednisone, and pentansa.  3 months later I had no perceived improvement and in fact felt much worse; more pain, more problems with bowel movements, and side effects from all the meds.  So I was then referred to a Crohn’s specialist at UNC.  He questioned the diagnoses and repeated the colonoscopy and a camera-pill small bowl fallow thru.  Results showed no signs of active disease visually or with biopsy.

The crohn’s specialist believed I had NSIADs induced IBD/IBS and now I’m being treated for IBS only.  I had been taking neproxin for back pain in January which he believed caused my problems.   He thinks eventually the IBS will go away completely as long as I stay away from NSAIDs.  My current pain is very similar to what it has always been…lower right and left mid.  Additionally, I do have all the classic signs of IBS from time to time.

Obviously, I like this diagnoses better and I’m hopeful that it is accurate but I’m afraid that maybe I have more than IBS.  I have never heard of NSAIDs induced IBD/IBS, despite knowing the fact that NSAIDs cause problems, especially for people with CD.  I worry that maybe I have CD and it is just in remission after the 3 months of pred & pentansa.  Maybe I just have IBS in addition to CD.  Both are a possibility but my GI (crohns specialist) is pretty confident I don’t have CD.  I guess time will tell.    Good luck and please post results!!

Regular Member

Date Joined Jul 2009
Total Posts : 61
   Posted 8/24/2009 1:34 PM (GMT -7)   
I also did not have the "classic" symptoms. I had a fissure that would not go away. After surgery to correct and it came back the doctor suspected CD. I didn't want to believe the first doctor and went for the 2nd opinion. After diagnosis I began having right side pain.

I had mild CD for 4 years (asacol only) and then moderate for 4 years (asacol + immuran/pred/etc) Last year it got so bad that I had to miss work. Currently on Remicade and off all other medicines! Yea!
Definitely get a second opinion. It helps to know/believe what you have when you are suffering. There are always ups and downs, so rejoice when you are having an up day. I agree with the others about self dosing your meds (although I am guilty of trying to) it usually doesn't work out so well.
Diagnosed with Crohns in 1998. Been on and off pred, entocort, immuran, asacol. Currently on Remicade every 8 weeks and gotten off all other medications!! *currently in remission*

New Member

Date Joined Aug 2009
Total Posts : 4
   Posted 8/24/2009 6:50 PM (GMT -7)   
I have my story here on the "over 60" discussion, but I am 41 and was just diagnosed 2 weeks ago, after ending up in the hospital, although it was my second trip to the ER in less than a year.

I had five different doctors tell me Crohn's--the GI doctor, the surgeon, the radiologist, the on-call GI doctor in the hospital and the ER doctor (after my scan said not my appendix). I had severe pain and bloating (like I was 6 month pregnant) and had an upper lower GI barium study that (apparently helped to)caused an obstruction by the rigid area they saw when they were doing the study! I was in big trouble by the time I went to the ER--I had been to the doc the previous week and he ordered all kind of tests--but then I ended up in the hospital anyway. I had to have a blood transfusion too.

Really, after learning my diagnosis, it made sense--the fatigue, the right lower quadrant pain (which is classic) and my "normal" (tome anyway) frequent morning bathroom trips.

What I am having a harder time accepting is the meds they seem to think I will be on for ever. I refuse to do that. The side effects stink. I have been to healthy all my life and active, to quit now.

I am keeping a food journal, although I am on a very restricted diet right now anyway, after my hospital stay. But I am determined to get this under control and into remission.

Miss Melissa, get a second opinion if you feel the need--that is your right. But also, know that you are not the only one having a hard time with your diagnosis. I have been very sad and depressed.

I think therapy could also help a lot of people here, and the knowledge that all these drugs are not always necessary...the drug companies want everyone to take 6 or 8 or 12 pills a day. For their whole lives. i know they help people (us), but it becomes a vicious cycle too!

Okay, maybe I am in denial, but I really can't bear the thought of a life like this! There had got to be an alternative!
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