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I could really use some advice, support or suggestions please!

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Crohn's Disease
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Posted 8/11/2012 2:31 AM (GMT 0)
Hi everyone.... I am new to this forum and Crohn's Disease in general and would really appreciate some advice and suggestions on my situation...

History: I am a 27yr female who was just diagnosed with Crohn's in March of this year.  It is located in my terminal ileum and it is said to be quite severe.  I have tried Entocort, Prednisone (allergic reaction) and now I am on Humira (once a week) and Imuran (150mg).  My Crohn's effects my joints to the point I can't walk along with 20+ trips to the bathroom and horrible stomach cramping.  In the last 3 months I have been hospitalized and my GI and surgeon were talking about a resection (with possible stoma) in my terminal ileum and removal of 2/3's of my colon.  It has now been 2.5 months since getting out of the hospital and starting Imuran / Humira and my symptoms seem to go up and down every couple of days.  I just had another colonoscopy to confirm previous findings from 2 months ago of inflammed colon and ileum and it has shown things appear to be close to remission ... so my question is why do I still feel like garbage? My joints are in horrible shape, I cramp after I eat most food and still lots of trips to the 'loo ? Has anyone else experienced ongoing symptoms but had good colonoscopy results?  The humira must be working to be able to heal my guts but I feel like my GI won't believe what I am saying about my symptoms. I just want to feel better so I can live my life the way I am supposed to and be the mom to my 3 year old she deserves... thanks for taking the time to read this :)

Posted 8/11/2012 2:47 AM (GMT 0)
Hi and welcome! I am sorry you are having such a tough time. With a colonoscopy, I don't think they can see the whole ileum. Has you doc also ordered a CT scan or the Pill cam test? Maybe your colon looks good, but you still have ongoing inflammation in your small intestine. Did you get blood tests for inflammation like sed rates or c-reactive protein? You also may have some IBS, meaning you may have an irritable colon without actual disease progression. My Crohn's is only in my ileum, but I have IBS and have ongoing struggles with that. If you are still having 20t trips to poop, then your doc should be able to give you some medicine to slow things down. If your GI doesn't believe you when you tell him/her about your symptoms, then you need a different doctor. That being said, your doc may not always have easy answers for you. It is a trial and error process with meds and diet. I've just recently started having significant joint pain, but my gut is doing ok...not sure what to do about it yet. I hope things settle down for you soon.
Posted 8/11/2012 2:55 AM (GMT 0)
Hi Gumby! Thanks for the reply! I just had a CT 2 months ago (while in hosp) and they said my colon and TI looked pretty nasty and TI was close to a blockage... When I was in the hosp. my CRP was at 240 (should be below 20 I think) and I just had another CRP done today and it was 198... I just don't understand why I have such bad inflammation and other symptoms when it appears the humira is doing somewhat of a job on my TI and colon? Is this something I will have to accept as the way my life will be (as good as it gets) or should i keep looking for solutions?
Posted 8/11/2012 4:31 AM (GMT 0)
I think what gumby was saying is that the scope cannot see beyond a few centimeters into the terminal ileum, so the scope results you have from the most recent one, showing great improvement - that's good news, but it's not the whole story.

Clearly, your GI should understand that if your CRP is still 198 it's kind of wacky to say you're near remission. You are not near remission. And the fact that you still feel like garbage is another good indicator that you are not near remission.

However, it is really good news that there is a reduction of inflammation in the colon. I think you should talk to your GI about expectations - how much longer on the the imuran and humira should it take to get your CRP and other symtoms much better? Should the imuran dose be increased? Should the humira dose be increased? What is the criteria for deciding whether a resection is a good idea?

I also suffer from joint pain due to my Crohn's, and I found that bringing a rheumatologist onto my team was a good idea. You should realize that your joint pain is very likely due to the Crohn's - and if so, it is true that this kind of inflammation in your joints is not damaging like it would be if you had rheumatoid arthritis. But it would be better if a rheumatologist was able to examine you and help figure out what's really going on with your joints.

I'm glad you found this forum and I hope you will feel better soon.
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