Newly Diagnosed, So...Hi! (And Some Questions)

Hello, everyone. Holo100 here. I've been something of a regular on the UC board, but today I was diagnosed with Crohn's Disease, so...here I am. I hope you don't mind if I ask a few questions from those in the know.

First, a quick history. I first dealt with colitis (that I know of) in 2016, after taking clindamycin. At first, the GI docs thought it was c-diff (it wasn't), then non-cdiff antibiotic-caused colitis (maybe). The only symptoms I had was blood in the stool and diarrhea...though the latter was only 2-3 times a day. Then all of it disappeared on its own about two months after the initial problems began.

Everything was fine until January of this year, when I first came down with gastroentreitis and then ended up in the hospital with acute colitis. Massive amounts of flagyl and bowel rest, and I was good to go after two days. Felt great until March, when the blood started showing up in BMs again, though only occasionally, though BMs increased from the usual 1-2 per day to 3-4 per day and I had off-on abdominal pain and nausea. Blood tests showed inflammation, so another colonscopy a month ago. The GI doc was sure that it was UC, but the biopsies show Crohn's, so he's going with the latter now.

When he thought it was UC, he put me on flagyl and Pentasa. The flagyl he stopped after two days, since it was making me feel worse. The Pentasa (500mg/3xday) is working great. No blood, no pain, BMs back to normal. I've been eating it with a lot of yogurt, too, and eliminated soda from my diet, as my blood sugar was veering close to diabetic. (It's since come down, even before I stopped drinking two Dr. Peppers a day.)

After I got the diagnosis, I went on the interwebz and learned that Pentasa isn't supposed to work for Crohn's, though it does for UC. Now I may still have the inflammation (won't get those tests back until next week), but I have no symptoms--aside from the occasional nausea, which seems to be more stress than anything else. My GI doc says it's a good sign that I'm responding well to the Pentasa, though he might throw some Imuran at me too if the inflammation hasn't gone down.

So my questions are: if the Pentasa doesn't work for Crohn's, why is it working and why did my doc prescribe it? Can you have "moderate to severe" inflammation and have mild symptoms? Is it true that I'm likely going to need surgery at some point for this? Should I have a panic attack now or wait until, say, 3 AM?

Thanks in advance!

Holo, I have read some of your journey in getting dx'd with a couple of different things. If I am reading from the UC forum correctly, the dr saw the skip pattern in your colon & that is where your activity is located. Therefore, with you having a good response to Pentasa perhaps this is why. Usually crohns is in the small bowel more so than the colon. And yes, as a result Pentasa is useless for us. Regardless, if Pentasa is working for you, stay with it. I don't think rocking the boat is a good idea at all.

Get the surgery thought out of your mind. Because its crohns does not mean you will need surgery. As another member said there are much better medications available now to treat crohns.

You mentioned reading on the net about crohns. Just be careful what & where you read. There is a lot of garbage out there that is not true. The best site to read about any IBD is CCFA.org.

Take care.

What did they find in the biopsies that makes them think it's Crohn's disease as opposed to UC?

Also, did the doc get into the terminal ileum during the colonoscopy? If so, did he/she find anything there?

If Crohn's is suspected, it might make sense to get an MRI or CT scan of the small bowel to determine whether or not it is affected, and if so, how much so.

How long were you on the Pentasa before having this latest scope? Or did you just start it after the latest scope?

Given that you've already had a couple of years of symptoms coming and going, even before you started Pentasa, it's a bit of a stretch to say that Pentasa is working because your symptoms have improved since starting it. Remember, your symptoms improved even before you started it too, only to relapse again. Symptoms are important, yes, but the goal is to clear the inflammation that causes the symptoms, not just remove the symptoms. If it's Crohn's you're dealing with, Pentasa is very unlikely to heal the underlying inflammation.

People worry about imuran causing a lowered immune response, thus leading to catching more illnesses, but common viral illnesses really aren't the issue or risk with these kinds of medications. If you're exposed to a cold or flu virus, you're gonna get it whether or not you're on one of those medications. It's things like lung infections, pneumonia, sinus infections, things that happen on top of common illnesses that you have to worry about.

Holo, wait until you find out your biopsy report. You should also request a copy of the testing for your own personal file to keep at home. In the meantime, try not to get worked up, whether it's crohns or UC, both are treatable. Some people are lucky enough to not have bad flare-ups as long as they stay on maintenance medications.

Again, check out CCFA.org & do some reading there. They have a section about medications & it is an excellent site with accurate info. As patients, we need to be knowledgeable about the disease & how to manage it. We do not rely solely on the drs to tell us everything.

Holo, nothing surprises me when it comes to medical facilities!! I am guessing your gi works out of a clinic with other drs maybe? I have had to fax papers too. Fortunately where I live not far from my house is a little shop that has a copy machine, fax & a mini post office. These little shops are all over the city.

Do you have a PCP that is local? If so, you could print the form off & take it to your PCP's office, I bet they would fax it for you. Just a thought.