How do they judge/track a Crohn's flare without diarrhea as a symptom?

[suschex]

I have been told that to track/judge/manage a Crohn's flare the doctor looks at number of bathroom visits per day as well as bloodwork. However, I have no diarrhea and my blood work doesn't show anything at all, ever. I know that my colonoscopy/biopsies 7 weeks ago showed sever Crohn's with extensive damage to my colong but how do I know going forward if it is getting better. I don't feel much better but without the concrete things like bloods and potty visits who knows...anyone else in this situation?

So my question is how do they track the flare and determine the effectiveness of treatment when the person with Crohn's doesn't have diarrhea or bloods to go by?

 

[hawkeye]

Past times they have done abdominal x-rays to check for narrowing in the lower intestine and to see if any intestinal contents are geting "backlogged".

I was having some flare like symptons recently (C no D), my blood work on a the visit to the GP was fine, but following a GI visit a week later I was sent for x-rays that showed some narrowing.

In my experience after prednisone was prescribed for a flare its been a matter of tracking severiy / existence cramping and frequency of BMs.
However I don't think the x-ray can determine if the narrowing is from active inflammation, scarring or a combination of both.

 

[suschex]

Can there be narrowing in the colon? My CD is only in my colon, the entire colon but only the colon...guess I am pretty thankful for that part of it all!

 

[hawkeye]

Yes, with CD there can be inflammation or narrowing in both the small or large intestine.

When I was first diagnosed it was in both the small and large intesine but lately it seems the large intestine is causing the issues, not sure if it is inflammation that is active or past inflammation that has led to scarring.

 

[suschex]

Good to know. All I know about mine so far is that the colonoscopy/biopsies showed "sever pancolonic crohn's disease with extensive scarring and damage"...I'm still letting those words sink into my brain...LOL!

 

[Grumbletum]

I'm in the same position. Don't normally get D and docs said drugs can affect blood counts. I thought I could go by my pain levels but it seems that can be deceptive too.
I had my first colonoscopy a month ago, after 5 months of Pred and Mesalazine and 2 of Aza. I thought I'd turned a corner as a bowel to bladder fistula had healed and my stomach pains were massively reduced. But the test showed severe inflammation at the ileocaecal valve. I saw it myself on the screen cos I woke up. Kind of solved my denial problems!
Have had 3 lots of Remi and they want to do another scope to check progress.

 

[Sybil Vane]

Before I had my last surgery, my main symptom was not frequent BMs, but abdominal pain, nausea, bloating, fatigue, and arthritis. My CD is higher up, so the only way to check is to swallow a pill camera. I have done that about 6 times successfully, and the last one caused an obstruction and I had to have surgery to remove it. Now that I've had a good chunk of my bowel removed, diarrhea is frequent, but I still rely on the soul-sucking fatigue and pain to determine whether or not my flare is serious. Has the general feeling of being "unwell" gone away? I would probably use the fact of how I felt overall to determine whether or not the treatment is working.

How did they determine that your CD is only in your colon? I've had small bowel follow-throughs that come out clean, but the pill camera will show ulcers throughout my small bowel.

 

[ekay03]

use you pain as a guide. Are you feeling better? Too often doctors seem to want to ignore the symptom of pain. How can they ignore that. Pain is a huge symptom, when its you in pain.

 

[suschex]

Helen, your woke up?!?!?! How unpleasant that has to have been...sorry that happend!

Sybil -- No, the general feeling of unwell is so severe it's crazy. Some days the prednisone masks it pretty well and I can function but others it is just debilitating. Then there is the bloating, aches, nausea and constipation. Not so much pain anymore but then again the tramadol masks that pretty well also. The used an MRI with a barium-like contrast as well as IV dye contrast...not sure if that is good enough or not now that you mention it. There is one mean learning curve to this Crohn's thing!

ekay - Isn't that so very true...I think they don't trust us to self-report pain levels but how many of them have the kind of pain we have with all of this...you can only learn so much in medical school but if you don't have the disease then you can't "know" what the pain is like!

 

[Sybil Vane]

I've never had an MRI, only a million CT scans, so I should be glowing any minute now. I would tell your GI that you feel sick. That, for me, is always a clear sign my disease is active. I always tell my husband that I feel like I'm walking through water and that every step is a struggle.

 

[suschex]

Not sure why I said MRI...it was a CT....yes, glowing for sure!

 

[Sybil Vane]

I honestly think the pill camera is the way to go. You can even swallow a fake one called a patency capsule to see if the real one will get stuck. If the patency capsule gets stuck, it dissolves in a few days. I was diagnosed with mild Crohn's after a colonoscopy, but when I didn't get better on Pentasa, I switched GIs and he immediately had me swallow a pill cam. I was then diagnosed with severe CD. Fun times.

 

[suschex]

I will ask my GI about that option. I know that my CD is sever and I am now 7 weeks on 40mg Pred. with very little change, started humira a week ago tonight. Originally, after 3 weeks on pred. with no change he said at 8 weeks he wanted to go back in and look with another colonoscopy....I actually hope he still will consider dong that next week. I know I must be patient with the Humira but it's getting hard especially with the pred. side effects. Just wish I could keep some of the energy level that it gives me w/o all the rest

 

[Sybil Vane]

I really hate prednisone and I'm sorry you have to take it. The last course of steroids didn't work for me, either. I'm in the same boat--I'm waiting for a drug to work before moving on to the next drug. I will keep my fingers crossed that the Humira kicks in soon!

 

[Jennifer]

They go by tests (they can be done once a month/year/couple of years): Colonoscopy, endoscopy, Barium x-ray, CT scan, MRI or even an ultrasound. They also go by a full blood panel and check for vitamin deficiencies along with blood count, inflammation levels etc. (bloods can be done everyday/week/couple of weeks/month/couple of months etc.) and lastly they go by your symptoms: bloating, constipation, diarrhea, abdominal pain (constant, only during bathroom visits, when pressed on etc.), gas (belching and farting), joint pain, feeling sick with flu like symptoms or general malaise that wont go away, nausea, vomiting, blood in stool, mucus in stool, fatigue etc. etc. Our symptoms often change so be sure to tell them if there has been a change for better or worse and never wait until your next appointment if things have gotten worse. Leave them a message by phone and if you hear nothing within a day then keep calling.

 

[kllyeve]

I alos suffer from C not D, blood work completely normal although mod-sever disease as per colonscopy of termial ileum.

I monitor my condition by the amount of pain - I also track how many tramacet I am taking - and my general sense of fatigue. I often feel like a truck ran me over - achy and sore like I am an arthirtic 80 yr old.

Another big clue is how well I am eating - if I don't feel like eating or everything upsets my system, then I know things are not good. I sometimes exist on a liquid diet(boost, ensure, smoothies) for a few days until things "right" themselves.

Also I know I am not doing well, when being in a moving vehicle causes pain when I go over the bumps. Sometimes on a particularly bad day, even my SO turning over in bed will jostle my tummy and cause pain inside. I often sleep with a heating pad on my abdomen so I can ignore the pain and get some sleep.

When my intimate life with my partner goes out the window because my abdomen won't handle the jostling - then I know I am in really bad shape.

And I am currently experiencing ALL these issues as I am waiting to go on Remicade!!

So listen to your body!! All those seemingly unrelated to Crohn's symptoms, could be escalating indications of problems even if you don't get the D.