New Here

Hello everyone, this is my first time posting here. I had a colonoscopy a few weeks ago with a biopsy because of ulcers present. The biopsy can back positive for Crohn's but the blood test came back negative. How is this possible? She said there were some mutations but nothing for Crohn's. I've been researching but this is still new and a little shocking.

Post Edited (mrs06chris) : 3/18/2013 11:34:02 AM (GMT-6)

Thanks Kazbern.

Entocort is a corticosteroid and while it does not usually lead to the terrible side effects people can get with prednisone, you should limit your time on this med. Most DRs will keep you on it for ~3 months and then wean you off.

You should have few or no side effects from Pentasa.

You should have bloodwork to check for anemia and vitamin D levels to make sure you are doing alright there. People with inflammation in the terminal ileum (both treated by entocort and pentasa) may have poor nutritional absorption. You might need to take vitamin D and/or iron.

I had a lot of pelvic pain before my diagnosis. It seemed related to my cycle but it wasn't that clear. I even got to the point of having a diagnostic lap, and the OB/Gyn was surprised to see I had no endometriosis (that was what he expected). I'm pretty sure it was bowel inflammation causing that pain.

Welcome, but sorry about the diagnosis. Hope you will be feeling a lot better shortly. If you are going to do any kind of steroid, (entocort included), you might want to consider getting a bone density scan if you haven't done that yet. Then you will have a baseline to look at to see if steroids are hurting your bones after you've been on them for awhile.
The good news is that there are new crohns drugs in the works and lots of research going on as well : )

Don't stop taking your maintenance meds. Keep a food journal to figure out if there are any dietary changes that might help. Keep the communication channels open between you and your GI.

If the headache is terrible, your DR is wrong, and you should stop taking the Pentasa. If your headache is mild then that is normal.

mrs06chris said...
I was wondering if any ladies have had issues with what feels like uterine cramping? I've suffered with this for years with no real answers except a few ovarian cysts. My doc has me on Enticort and Pentasa. Any bad side effects with these drugs?

Hi! This is also my first post as I just joined the forum this evening as well. I was diagnosed in 04 with UC and then in 07 with Endometriosis. Short of visible blood or mucus when moving my bowels it is nearly impossible for me to tell the difference between symptoms. I have recently found that there is a very large connection between the two diseases. Currently i'm experiencing my first UC flare in several years. My Dr. has suggested I have another colonoscopy to ensure that i'm experiencing UC and not endometriosis. While this seem drastic to me, i'd rather know for sure before starting asacol or some other medication again. I have treated both diseases with diet and lifestyle. I eat an 80% gluten, red meat, hormone treated, dairy free diet. This has had a tremendous effect on my pain levels but unfortunately has not eliminated all symptoms. Unfortunately, I have no insight on the medications you listed. Good Luck!

Pentasa at the normal dose of 8 x 500 gives joint pain and headaches. However I can take it at 4 x 500 withou any side effects. Perhaps you could try a lower dose for a while, then as you get used to it, increase if and as required.
I know that there is little evidence of it being effective a this dose, but with the LDN and diet it seems to keep me in pretty good health.

Ironically I have the same pain evnthough I had a hysterctomy in 2006.  Even now, I have pain low in the middle of my pelvic area and no one seems to know what's causing it my guess.....the crohns.  I deal with it the best I can from day to day then chat with my Dr when something changes or seems out of the normal.  My right ovary was removed because I was having a lot of pain in that area.....little did I know at the time I had Crohn's.  It wasn't until 3 years later I finally got a diagnose.  The crohn's symptoms hit me full force about 6 months after the hysterectomy which caused me to visit a GI DR.  Good Luck and keep your head up!!