Confused - Do I really have Crohns and IBS

[Maddy2013]

Hello, I'm new to the crohn's forum.

I was diagnosed a year ago Aug 2013 with crohns. Prior to being diagnosed I was not feeling well. Running to the bathroom often. It got to the point where I would not eat all day at work, afraid of what would happen. In the beginning I would feel the urge to go, run to the bathroom but at times I couldn't. I lost 8 pounds in about 2 month or so. I had blood and mucus in stool. depending on what I ate I would get bad cramping.

I finally went to my general MD. She discovered I had an under active thyroid. With an under active thyroid I should have been gaining weight, however I lost the 8 pounds. We discussed my issues.. she sent me to a Gastroenterologist.

My gastroenterologist preformed a colonoscopy where it was undetermined crohns or colitis.
The dr began treating me with Lialda. It seem to work for a while but then I started to have the opposite issue of not going. My dr then determined it was Crohn's and IBS. We tried other things like probiotics and miralax along with Lialda.

A few months later I still was not feeling 100% plus I was having episodes of being extremely tired. Thinking it was my thyroid I was retested. Thyroid came back completely fine with meds I was taking. My dr then decided to try a different medication for crohn's. I am now on Pentasa 500mg 4 x's a day. Pentasa is a controlled release capsule. I have been on this for 3-4 months.

I still have times when I do not feel 100%. I sometimes question my dr and if what I truly have is crohns. Doe anyone have days like this?

Please help with my confusion. when I speak to my dr and tell her certain things I don't feel like she is listening 100% and I feel like she is all over the place. I have been on steroids 2-3x's in between. They did not help at all.
I know I am all over the place but this is how I feel right now with what I have!!

 

[DJW]

Hi and welcome.

I understand your confusion. Their are people on this forum who have both. Are you able to get a second opinion?

 

[Clash]

If you have had to be on steroids several times for flares while on Lialda or Pentasa then they probably aren't strong enough meds for you. You should speak with your doctor about having blood work and a fecal calprotectin stool test. Some times the inflammation won't show up in blood work but a fecal calprotectin shows inflammation in the bowels. IBS would not cause an elevated FC.

5ASAs(lialda, pentasa, etc) are approved for UC but are often not enough for Crohn's. UC affects only the top layer of the bowel while Crohn's can affect the full wall of the bowel and 5ASAs treat the top layer.

A second opinion may be in order as well as further testing to determine what state your CD is in. From you explanation it sounds as if you have not yet reached remission. My son's first told us my son had IBS as well as CD but when the CD went away the "IBS symptoms" were completely gone. The second GI said it wasn't IBS but simmering inflammation from CD that hadn't been quelled.

Good luck.

 

[Maddy2013]

Thank you for your response. I have my next colonoscopy scheduled for this Wednesday.. I think the best thing to do is go for a second opinion.
I truly believe the inflammation is still the problem. It has gotten a little better but still not 100%. I wasn't sure why the steroids did not help. but you could be right. Maybe I do need a stronger medication!

 

[my little penguin]

Second the second opinon.
DS was put in pentasa by itself -
It did absolutely nothing.
When he still had symptoms while on 6-mp we were told to try Ibs meds with the crohn's meds.
Only after he was put on remicade did all the Ibd stuff go away.

Not saying you can't have both but if the crohn's isn't under control then you won't really know.

 

[Maddy2013]

I'm so glad I posted my concerns. I'm starting to feel like I'm not crazy about how I feel!
I have my colonoscopy tomorrow and in the meantime I believe I will look around for another dr and get a second opinion.
Thank you to everyone who answered, I truly appreciate your help.

 

[Maddy2013]

ok, I'm back. Had my 2nd colonoscopy last week. Not sure why but the preps are normally the worst for me. Anyway it's over and done with and I'm glad.

The colonoscopy showed inflammation in the lower rectum.. I have to give my self an enema every night before bed for the next 2 weeks. I feel a lot of discomfort but manageable. I'm hoping this is the reason I'm having issues of not going to the bathroom. or should I say only seeing mucus and some blood. Has any one dealt with this?