Me again.... I know I was dx'd with IBS, but....

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Regular Member

Date Joined Jan 2008
Total Posts : 491
   Posted 5/27/2008 1:30 PM (GMT -7)   
I know y'all are probably really tired of me & I tried to stay away from the board, I even went & posted on the IBS board. Something just keeps bringing me back here....

I went back to the GI a week or so ago & she said she felt since my last c-scope (while on pred & azulfidine) was all clear, she is thinking that I just had infectious colitis that caused me to have IBS now. So I am off all drugs (been about 2 weeks now) except my Lortab for my pain (another story altogether). I was not sure about that dx, but I sure was really hopeful that's all it was. Problem is, I am getting worse & worse again. I don't want to go back to being as sick as I was & I am just not sure what to do. I did switch my primary care physician as everyone said I should. (I think my new one who I have seen for muscle-skeletal issues feels I have crohn's. He told me at my last appt. that IBD can cause pain & issues & arthritis & such just like I am having. I told him that my GI thinks it's just IBS and he didn't say much, but is sending me to another D.O.) That is a definite positive, my doctor being someone who is understanding of my situation (he has crohn's, I believe) & searching for the answers for me.

Anyway, here's what's going on with me now. I am having lots of BM issues. Today I have went 7 times so far. I haven't went this much since January. It has me worried a bit. But, it's not D, so I am not worried too much. What has me concerned is the digesting part. I am having lots of pieces of foods in my stool again. Nothing like this happened when on prednisone, so it's worrying me. Along with the blood. I didn't have any on pred, but now I have it pretty much every day. I told the GI about it but she just said it was probably due to the internal hemmy's I have. But how come I didn't see any blood for months, then once I get off pred, then there it is? I have lost a couple pounds as well. I know this is normal when you get off prednisone, so I am wondering how much is normal? I have lost 9 lbs so far in 2 weeks. Is that normal? I also have been having a lot of mucus. A LOT! Sometimes all that comes out is mucus. And sometimes it's like the bright green color, snot color. Most other times it's yellow. I have heard that mucus is normal with IBS, so that may mean nothing.

I asked the GI about the small bowel series which showed inflammation, but she said that must've been a mistake in the test. (I remember it quite clearly & both the tech & radiologist thought something was wrong-some type of IBD.) They kept using the paddle, but the clumping of contrast was still there. I don't think that could have been a mistake....

I just have been so tired. I kinda expected this since the prednisone really kept me up, and helped a lot with my fatigue, but I thought since the infectious colitis was gone, then this fatigue would be gone as well. I just am so exhausted. I slept so much this past long weekend trying to get me prepared & back to normal for this work week, but I am still having problems. I just don't know what to do. I want my life & body back & can't understand why I feel this way if it's just IBS & the colitis is gone.

The dizziness & headaches I attribute to my ear problem. I hope I will get a date for that surgery soon (I am getting a tube in my left ear). I just wish I could fix my bowels, but they are now telling me nothing is wrong. So, when should I worry? I am supposed to call the GI if I get sick again, but I still feel sick & don't know at what point I should call her....
Live for today, for tomorrow you might just get hit by a semi.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 5/27/2008 2:00 PM (GMT -7)   
Hi Huckberrie I did not have green or yellow mucus when I had IBS it was white or just a dark glob of stinky looking stuff in my D. If your not better which you say your not call the GI. lol gail

Regular Member

Date Joined Mar 2008
Total Posts : 110
   Posted 5/27/2008 2:36 PM (GMT -7)   
huckleberry...I have crohns/colitis and the symptoms you have sound like you have more than just an infection. If that were true..then your symptoms should not continue after a round of meds. Get a second opinion! blood in the stool should not be taken lightly.
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD. Started Humira March 2007

Regular Member

Date Joined Dec 2007
Total Posts : 122
   Posted 5/27/2008 3:28 PM (GMT -7)   
Have you tried probiotics, they are helping me.
Asacol x2 two to three times aday
Probiotics once aday
neupogen  twice aweek (causes bone pain and flu like symt's)
 Was using tyl4 for bone pain. dr. who started me said I stopped...but it was also helping the colitis for some unknown reason
 Prostate Cancer 2003
 Left bicep ripped of from forearm 2004
lung cancer 2007
THe rest of the crap in line for me can take a number 'cause I'm busy!

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 5/27/2008 3:50 PM (GMT -7)   
I was diagnosed with IBS at first too. Took them about 7 years to finally get it right and say it was Crohn's. These diseases can be tricky to diagnose. Seems like they jump to the IBS diagnosis when they simply don't know. That was my experience anyway, they used IBS as kind of a "catch all" diagnosis.

If your not happy with what they told you, I'd ask for a second opinion. We have to advocates for ourselves! Good luck to you!
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).

Regular Member

Date Joined Jan 2008
Total Posts : 491
   Posted 5/27/2008 4:25 PM (GMT -7)   
Thanks for your help. I forgot to mention the first c-scope did show inflammation & ulcers, mild crypt distortion came back as well that caused the GI to think IBD. She was pretty sure of it until the second c-scope came back clear, I guess. (I am waiting to receive the actual copy for the wording.) So I don't know.

There's really no other GIs for miles & miles. I am stuck. And I think she is great, and she seemed to really be thinking of IBD in the beginning. Now all the other docs I have seen (ER & elsewhere) think it's IBD by the small bowel series results. But now she says that's a mistake. It's so confusing.

I have not tried probiotics, besides activia, which I know doesn't count. That is my next step.

I have never been treated for the infectious colitis, I don't think. Unless azulfidine is the treatment. I as on that for a months & months. I was on prednisone for 2+ months. I am wondering if that is what I still have? How can you tell?
Live for today, for tomorrow you might just get hit by a semi.

Veteran Member

Date Joined Nov 2007
Total Posts : 4392
   Posted 5/27/2008 5:28 PM (GMT -7)   
Hi Huckleberry,
I'm sorry you are going through all of this. I have had IBS all my life, Crohn's disease in the last year or so, but this past winter I also had Salmonella. When I had the Salmonella, I had all of your symptoms....tons of mucus, blood, undigested food, weight loss. I, along with my GI thought it was a major Crohn's flare, and it took over two months before they finally tested my stool and found the Salmonella. Cipro helped, but I needed a few rounds. It then took several more months for my abdominal pains to get under control and my doc labeled those symptoms as post-infectious IBS. Please make sure they test your stools, and because it is sometimes hard to detect infection, a round of Cipro may be useful. I do believe your symptoms DO NOT sound like just IBS. I think you may need to consider a second opinion from another GI, even if it means travelling a long distance to do it. Trust yourself and keep demanding answers, and keep writing. I hope you figure this out soon!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics

Regular Member

Date Joined May 2008
Total Posts : 117
   Posted 5/27/2008 6:05 PM (GMT -7)   
I agree with gumby44.  what you have sounds out of the ordinary.  definitely get a stool test.  in the meantime, make sure you take extra iron or eat liver because all that blood loss will make you anemic down the road.

Regular Member

Date Joined Jan 2008
Total Posts : 491
   Posted 5/27/2008 6:14 PM (GMT -7)   
Oh, it's not much blood. Like before. Not lots, just enough to notice, that's all.

I was on Cipro when this all started last year. I had a kidney infection so I was on Cipro for 3 weeks. The weight loss went crazy at first. I can't imagine that I would need to be on Cipro again....
Live for today, for tomorrow you might just get hit by a semi.

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