Newbie looking for answers

I am looking for some real information from those that are dealing with Crohns. I first was told a year ago during a hospital stay that I most likely have Crohns due to the severity of the inflammation in the distal portion of my small bowel (on CT scan). The doctor's were surprised I was not here much earlier I was nearly occluded. I had been sick with what I thought was a stomach virus a week before that left me 6 lbs less in a week. I had never had such incredible abdominal pain before. I would have preferred natural childbirth for the third time over this. I thought I was better and returned to work for a few days but the diarrhea returned and the pain hit tilt. I was put on high doses of prednisone and Pentasa 1000mg four times daily. I was unable to have a colonoscopy until inflammation till swelling decreased 7 wks later. My lab work was normal during hospitalization. The colonoscopy (while still on prednisone) was normal and I then was told it was most likely gastroenteritis. All meds were stopped. I continued to have episodes of severe abdominal pain lowest part of my abdomen center to right side, diarrhea and nausea. I started to notice flare ups with my menstrual cycle (but pain starts 2-3 days after period starts and gets worse as the cycle ends lasting about week longer). Monthly it stopped me in my tracks and my lower abdomen hurt so bad you can't touch it or roll in bed.

By this October it was so bad I landed back in the ER. Once again the CT showed swelling in the distal small bowel and possible partial obstruction. Back on prednisone and Pentasa. Went to a new specialist and upon history taking he also felt it was Crohns or possibly Celiacs. Upper Endo done came back with mild inflammation and blood work good accept "weakly positive" on one marker. Colonoscopy done this past Saturday with nothing showing. I have a follow up with him mid December. I just want to know because if I don't have to take meds like Pentasa I want off.
It is possible that the prednisone takes away the obivious signs and swelling? Can it also mask lab results?

What does "weakly positive" really mean? Can this be just the beginning of Chrons? I have several family members with autoimmune diseases like my mom with Multiple Sclerosis and 2 first cousins with Lupus. Very confused and stressed!

Hi Miss Mel, and welcome to the forum...Pentasa really is a hard pill to swallow, but relatively mild compared to the side effects of Prednisone. It really sounds like Crohn's since you seem to respond to steroids..I am not a doctor, so I can't make a diagnosis. My colonoscopies have always been normal colon wise...I have the disease in the terminal ileum, which is the most common place to have this disease. That's where your problems are too? Look around this forum, and read other people's stories. You will get alot of info. If you have anymore questions please ask.

Hi MissMel and welcome

I was thinking as I read your post that it does sound like Crohns is likely. The 'distal portion of the small bowel' otherwise known as the terminal ileum is the prime spot for Crohns to develop and narrowing can occur there (due to inflammation) which would show up on a scan and cause pain/blockage.

It is unusual but not impossible for a person with a Crohn's flare to not show up anything in bloodwork - mine was off the charts but others have said their blood is usually normal.

I agree also with MissP that if the prednisone helps then it also may indicate Crohns as Pred gets rid of inflammation - you didn;t really say if you felt better on the pred?

Lastly, the colonoscopy won't be much use to you if the problem is in the ileum. I hear that the procedure usually sees problems i the large bowel but can have problems getting into the small bowel and many people say it never reaches there, especially with narrowing. I was lucky in the sense that they DID make it through to my ileum and confirmed what the scans already showed.

Sounds like you need to really push to get some answers. I'd keep taking the sterioids in the meantime if they are helping, but they aren;t a long term solution.

Hope this helps

Shaz

Thanks for the warm welcome. Without a doubt the pred has worked, but I feel that is also masks the symptoms for the doctors. Having CT scans done during the episodes both showing swelling of the terminal ileum, makes me wonder if the pred decreased the inflammation. Now the upper GI showed mild inflammation while on pred. I have not had a follow up yet and still waiting for colonoscopy results (not expecting anything). Still wondering what weakly positive really means (could it be possible I have just caught it really early?)

I cannot imagine what a severe case must be like if the pain and discomfort at a mild level is like this! Bless you all and may you have strength everyday!!!!

MissMel said:

Thanks for the warm welcome. Without a doubt the pred has worked, but I feel that is also masks the symptoms for the doctors. Having CT scans done during the episodes both showing swelling of the terminal ileum, makes me wonder if the pred decreased the inflammation. Now the upper GI showed mild inflammation while on pred. I have not had a follow up yet and still waiting for colonoscopy results (not expecting anything). Still wondering what weakly positive really means (could it be possible I have just caught it really early?)

I cannot imagine what a severe case must be like if the pain and discomfort at a mild level is like this! Bless you all and may you have strength everyday!!!!

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I think the test you are referring to that indicates weakly positive is done through the Prometheus labs....Here is an old thread. I don't know how accurate it is for actually diagnosing IBD. There are others here who have had it done as well. You can google the lab name and find info re: it;s accuracy. I hope this helps.
http://www.crohnsforum.com/showthread.php?t=4915&highlight=promethius+labs