Flare? Need a bit of advice?!

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lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/15/2008 4:14 PM (GMT -7)   
OK so been a little while since I updated my situation....my arthritis has settled down loads, still not 100% now just a bit of pain but no swelling.
Since that flared up I have been struggling a bit with my stomach, with cramps and diarhea especially after eating, when my stools are actually solid they're about the width of a biro. I've lost over a stone in weight in the last couple of months as well. I saw my gastroentirologist and bloodtests showed barely any inflammation (CRP less than 5, when I've had Crohn's flares in the past its been 80+) he also said he could feel swelling in my lower right abdomen. He was keen to either give me another infliximab (even though commented not a good idea as its been 3 years and I may have lots of antibodies by now) or start me on Humira as well as methotrexate but I'm not willing to do this yet as I'm not convinced that I'm in a flare up. I feel OK in myself generally the only problems I've got are the cramps and diarrhea which I can control a bit with codeine, whereas in past flares I felt horrifically ill inside and out and I do not feel ill I just have those two symptoms. I just don't want to be putting more strong powerful drugs in my body if it is unnecessary, I asked him if it was possible that the swelling and symptoms could be caused by scar tissue and not inflammation and he said it is possible but he said he thinks its unlikely even though my bloodwork came back OK. He gave me a course of Flagyl to make sure its not a stomach bug either but it just seemed to me like he was keen to push drugs on me but I'm not happy to add another drug without some evidence this is the right thing to do.
 
So basically I was just wondering if theres anyway to find out if its scarring and not inflammation? If anyones had a similar experience and what sort of things should I be doing to try and reduce these symptoms? And what should I say to or is there anything I should suggest to my GI when I go back in a few weeks? What could it be if its not a Crohn's flare up? At the moment I'm trying a liquid/low residue diet to give my bowel some rest but at the same time I'm concerned that lack of fibre may make diarrhea worse. Any input would be much appreciated thanks!
20 yr old female. Diagnosed with Crohn's Disease 2002
Crohn's arthritis in fingers, wrists, jaw and sacroiliitis
4 1/2 years remission with methotrexate and occasional infliximab!
 


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 2/16/2008 3:34 AM (GMT -7)   
my two cents...

Whenever I have one or two symptoms of a flare, but I don't yet feel like I'm totally flaring = it's usually because my body is tactfully trying to tell me to change something about my eating habits. For example, the last time I had nausea and D after eating, without any other symptoms - I stopped drinking coffee at my doc's suggestion, and the symptoms stopped immediately. I had tolerated coffee just fine for years previous - but for some reason my ticket to tasty coffee had expired. Even a single cup in the morning will screw me up for an entire day...but ONLY after meals. Weird, I know.

As far as scar tissue being the issue rather than inflammation, I think that is a reasonable theory. Unfortunately, I don't think there's any very good way to tell for sure one way or the other. The digestive enzymes that I take are supposed to help digest scar tissue. This both fascinates and horrifies me - as sometimes it seems like scar tissue might be the only thing holding my guts together! I have been on these enzymes for 6 weeks, and have noticed less cramping and more tolerable gas. Perhaps investigating enzymes would be an option for you.

As far as the width of your stools - when mine get skinny like that - that's when I know I'm overdue for an Infliximab treatment. I have been on it consistently since I started the treatments, but I completely understand your apprehension at getting a treatment if there has been a few years since your last one... I call those stools my "pencil poops" because they're never any wider... obnoxious!

I completely understand not wanting to go the major RX route without exhausting all other possibilities... but don't let yourself lose any more weight or put up with any other symptoms that creep so gradually you might not notice how bad you really are... That's probably the hardest lesson that I've learned over the last few years... sometimes the decline in your quality of life is so gradual that you don't even notice... then one day you realize that you're afraid to eat anywhere not in range of a restroom, what to most people is a ridiculous amount of cramping is normal to YOU, and so on... keep your treatment options open, but also know when to call in "the big guns".
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

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