Newly diagnosed.... and lost!

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.


:)

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.

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!

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    Good luck.   

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.

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!!

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!