Community Forum

I found out I had Crohns b/c during yrly physical I mentioned tht my stomach hurt in the morning at times. I wldn't have called my Dr. b/c it didn't seem tht bad. From there blood work and "Other" samples came back w/red flags. I have been on Methotrexate for a year when I first started it my Sed Rate & C-Reactive Protein were high. Over time thy hve gone almst back down to norm and fluctuated down and up again. Because of the metho I get blood taken every 4 weeks. I had a colonoscopy last month and whn I got out of the procedure my Dr. told me I was in "Complete Remission" but to continue on the 1ML Metho until the appt to discuss where we wld go from here. At my appt I am tld that the pathology results frm biopsies show tht my Crohns is still active. I was upset I wish that the Dr sd "Things look good lets wait for everything before I tell my opinion". So on Monday I got blood taken and while the SED RATE is almost norm but C-REACTIVE protein has gone from .05 to 1.3. Conveniently enough my PCP is the wife of my Gastroenterologist which is great. When things are off a bit my PCP says she is not very concerned. Since it jumped up so much she is now concerned. The worst thing abouyt evrything is tht I have never had many symptoms (I know I am lucky for tht I have read what some of u go thru)-At the same time its hard I feel fine I go to the bathroom once sometimes twice and it is formed not diarrhea. I dont get it. My Dr is amazed tht I am not in pain and having symptoms b/c the way things look when he 1st looked it was bad. "Moderate/Slightly severe". I am  so frustrated why has everything been OK and now the C-Reactive has gone up showing that something more may be going on. I know other ppl have it worse. I am just getting so upset with this. Can anyone relate to this?  Any insight?

 Reply posted for April08.

There is nothing to feel guilty about. Your feelings are real. Any of us can say there is someone worse off than us but we still feel the pain and it's ok to acknowledge it. We all feel sorry for ourselves at one time or another. It's normal and probably healthy.

 Reply posted for April08.

Folks have difference sensitivities to different levels of inflammation.  If you feel fine and you are not have very severe inflammmation or ulcers, that's great.  Your doctor might have said that you are in complete remission because he/she didn't visualize any inflammation.  (Of course you could have inflammation elsewhere.  A colonoscopy views only the bottom of the small intesting to your anus.  There's a lot more to your intestinal trac.)  Biopsies can pick up inflammation that your doctor can't see.  Finally, no need to feel guilty for discussing these issues on the forum.  We're trying to share our knowledge and help each other.

 Reply posted for April08.

If it helps, I'm kind of in your situation. I've had Crohn's for almost 30 years, and it's been on-and-off as to how bad it's been. But for the last few years I've been on Remicade, and made some changes in my lifestyle to reduce stress. It seemed to be working, and I've been doing well--much better than many who've posted in this forum. I feel almost guilty, too, complaining about my little aches and pains. I know I'm very lucky, being able to work a regular job (with good insurance!), and function almost normally. But as many people have said here, everyone's different.

Even now, after my last colonoscopy on the 11th, my doctor's said there's more Crohn's activity and either I switch to Humira, or get surgery (gee, which one do you think I picked?). Still, I don't feel that bad, though my doctor wants me back on the low-residue diet (I call it the Oliver Twist all gruel diet). My energy level's pretty good, and so is my weight. I figure it's just best to be thankful, and still watch what's going on with your body, just in case. I'd rather feel guilty for feeling good, than feel rotten.

I hope you continue to stay feeling well.

 Reply posted for April08.

I do just have one thing to say.  I always read all of the other posts and I feel guilty for complaining I am sorry.  I have just not come across one person who has somewhat of the same situation.  I am frustrated about my situation because I don't like talking to people about my troubles with this that are in constant pain and nothing works and you are going to the bathroom countless times a day. 

Please know that I feel for all of you and I know that I have been lucky and that this disease could change how it affects me any day.