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Crohn's Disease
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Posted 5/18/2008 7:39 AM (GMT 0)
So I'm leaving on Tuesday to go study abroad in London for two months. I'm excited, but have recently been having what I feel is a flare. My GI doctor did a colonoscopy yesterday to check on things before I go (it was my third in a little over a year).

Before I had the colonoscopy though, my doctor told me my blood work had shown an increase in my C Reactive Protein levels from 12 to 16. I thought this was a marker for inflammation. But then after my colonoscopy yesterday he told me that he saw much less inflammation than he has before. But because this was pretty soon after I had woken up from the anesthesia, I didn't remember to ask him about it. If my C Reactive Protein levels are going up, then why is there less inflammation that he's seeing? He thinks that the pain I've been feeling - I've been having really bad abdominal pain - is probably a combination of the Crohn's and IBS. He also thinks it might be from scar tissue from when my appendix got removed last April during a laparoscopy which was for my endometriosis.

I guess I'm just somewhat confused and now a bit nervous for my trip. I was thinking he might see what was going on during the colonoscopy and be able to shift my meds around. I'm currently taking Entocort, Imipramine, Bentyl, birth control (for the endometriosis) and Tetracycline (for acne). I had been on 6 MP for a while but it made me really nauseous and overly exhausted. So I've been off of that. It kind of feels like I'm back to the whole "it's all in your head" aspect with him not seeing any large amounts of inflammation. And then today my stomach was feeling super strange. It was gurgling but nothing was really happening. And then I started having loose stools, and some of them had blood and lots of mucus. This never really happens for me. My mom thought maybe it was just because of the colonoscopy yesterday. And every time I've been eating today my stomach does the gurgly thing and feels like I'm going to have another episode of D - and at least half of the time I have.

When I come back at the end of July I have appointments set up to have another capsule endoscopy done. My fear is that something really is going on to cause my abdominal pain, but it is just higher up than the colonoscopy scope could show. But then I keep thinking that maybe it is just in my head and I'm stressing myself out.

I'm not really sure what my question is. I just kind of wanted to vent because I don't know what's going on. I want to be relaxed on my time abroad, but I keep thinking that there has to be some sort of explanation for this. At least I have a GI doctor set up in London for in case of emergency, and also to give me my monthly B 12 injection.

Thanks for listening/reading though.
Posted 5/18/2008 3:23 PM (GMT 0)
You've got the GI in London set up and that's great. You're also very aware of your disease. Sounds like you're being really poractive and living with the disease. Maybe make a check-in appt with the London GI for a few weeks into the trip to ease your mind and to really make sure things are ok. I hope all goes well for you. Have a great time.
Posted 5/18/2008 4:20 PM (GMT 0)
One reason could be that the inflammation could now be in your small intestine. A colonoscopy can only see the large intestine up to the ilium.
Posted 5/18/2008 4:37 PM (GMT 0)
You don't mention how long you've been on the entocort or if you're tapering.

C-reactive protein is a marker for inflammation, but it is not necessarily specific to Crohn's inflammation. If you were fighting off a cold, for example, your C-RP could elevate. Maybe even the endometriosis could affect it. It may be that the difference between 12 and 16 is not significant enough for your GI to be concerned. If you are having D with blood and mucus--and that's a new development--that may change things, you should talk to your GI again. But a day or two of minimal blood is possible after a colonsocopy with biopsies.

You already have a doctor set up for your trip... Try to relax and enjoy it. Maybe plan get labs done halfway through if you are concerned you might be worsening. But stress will aggravate the IBS and possibly the IBD as well, so focus on having fun but maybe be careful what you eat.
Posted 5/20/2008 6:50 AM (GMT 0)
Illini, I've been on Entocort on and off since March of 2007. I was on at least 6 or 9 mg until November of last year, when I began to taper off. I was completely off Entocort from January until the end of February. I then started again. I'm at 9 mg right now for another month, and then I go down to 6 mg.

I wasn't aware that the C-reactive proteing was a marker for just any type of inflammation. I wasn't sick then, but it is definitely possible it was my endometriosis acting up.

I got a call today from the Surgery Center that I had my colonoscopy at and told them about what happened on Saturday. They told me I should definitely let my doctor's office know, but not to be too worried since it only happened once this weekend. So I left them a message letting them know what happened. They know I leave tomorrow evening so if they really want to get back to me if they think it's bad then they will. I guess my fear is that the bleeding is from something other than just the scope or whatnot. But because it was pretty bright red blood, I'm guessing it wouldn't be coming from higher up than a colonoscopy scope can see. Would that be a fairly accurate assessment? I've heard that the higher up the bleeding source is the darker the color of the blood is.

I actually have an appointment set up with the GI doctor on June 2. It's basically just to give him my prescription for the B 12 injections. But I might mention what happened as well.

Thank you guys for listening! I know I should just relax and have a good time. But I keep mentally freaking out. I'm working on trying to stop that. It's just that this is the first time I've really gone away for a while since being diagnosed with Crohn's. I'm just a bit nervous. I know I'll be fine, but it's that whole unknown factor that's making me nervous. But I know I have you all to hear me freak out when I need too, and that is definitely helping me get calmer.
Posted 5/20/2008 12:41 PM (GMT 0)

Illini said...
You don't mention how long you've been on the entocort or if you're tapering.

C-reactive protein is a marker for inflammation, but it is not necessarily specific to Crohn's inflammation. If you were fighting off a cold, for example, your C-RP could elevate. Maybe even the endometriosis could affect it. It may be that the difference between 12 and 16 is not significant enough for your GI to be concerned. If you are having D with blood and mucus--and that's a new development--that may change things, you should talk to your GI again. But a day or two of minimal blood is possible after a colonsocopy with biopsies.

You already have a doctor set up for your trip... Try to relax and enjoy it. Maybe plan get labs done halfway through if you are concerned you might be worsening. But stress will aggravate the IBS and possibly the IBD as well, so focus on having fun but maybe be careful what you eat.

I have to agree with Ilini your CRP is a marker used for me disorders to include cancer and asthma.  I have both and when it flares the first thing they check are my lungs.  Then my CD.  Then my cancer.   They rule out the simpler disorder first then the largest one last so that make sure that they are treating the right one.  The strange thing is the prednisone is used for all three when inflamed. 

Shoshanna

Posted 5/20/2008 1:28 PM (GMT 0)
Is there a particular broad in London you are going to study or will any broad you meet do ?
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