I need a few opinions :(

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Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 1/19/2010 10:44 PM (GMT -7)   
Hi everyone

I am usually on the Ulcerative Colitis board, but feel that I need to ask for any opinions..

I was diagnosed with U/C (proctitis) in 2005, did ok with the typical meds, canasa, rowasa, lialda, now Apriso.. I eventually got to the point where pretty much nothing would keep me in remission, not even Prednisone... So I tried Remicade and wouldn't you know.. the next day I stopped bleeding...

Well, 3 weeks after the Remi, I developed some neurological symptoms and had to quit the Remicade.. I was tapering off the Pred during that time and once I got down to 2.5mg, I started getting this pain in the lower right side of my abdomen... I thought it was appendicitis and went to my Dr after a few days because it was bothering me so bad. They did a CT scan with contrast and found nothing wrong with my appendix then sent me home..

Well here it is almost 4 weeks later and I still have this right sided pain, and now in addition to that, I get this rumbly, sore kind of feeling in my guts every now and then.... I've lost 10lbs in 3 weeks and my appetite is not that good.. Sometimes I feel a bit nauseaus when I get the gurgling sore feeling but not bad enough to throw up.. I do get some relief if I lay down flat when I feel like that.. The only time I feel halfway normal is in the AM after not eating all night or if I don't eat at all... I am wondering if this sounds like it could be Crohn's? My GI has me scheduled for a small bowel follow through test this Friday and then if it shows no obstruction, he wants me to swallow that pill cam to get a look at my small intestine..

I feel desperate.. I'm so sick of feeling sick and starting to get depressed where I don't feel like doing anything.. not even the important things I need to take care of like paying bills, etc...
 Diagnosed with Ulcerative Colitis January 31st, 2005

Remicade, One infusion October 22nd, developed symptoms of MS 3 weeks later, Brain MRI showed multiple lesions.. eek!

MEDS: No more Prednisone as of 1/06/10!!!!! Started my taper as of 10/23/09..woo hoo!!!
Apriso 1.5gm once a day, Nexium 40mg once a day, Wellbutrin 150mg once a day. 
 
        http://www.myspace.com/77016897  

Post Edited (Susiebuddy) : 1/19/2010 10:48:30 PM (GMT-7)


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 1/20/2010 1:04 AM (GMT -7)   
Hi Susiebuddy and welcome. It sounds like it could be Crohn's, but then it could be other things too. You're doing the right things to find out. about the depression, if you're not taking antidepressants yet then I think it's time to start. Most people with a long term disease wind up taking them as you probably know. If you're already taking them then you need serious support from family, friends or councilors, and/or perhaps an increase in dosage. If you're not doing things like paying bills, that's bad depression and shouldn't be ignored. These boards offer a lot of support but I don't think it's sufficient for serious depression.

I hope you get diagnosed soon and they fix you up good without it being another disease. ((((hugs))))
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/20/2010 2:41 AM (GMT -7)   
Crohn's does sound like a possibility. But before I jumped on the antidepressant meds I'd find myself a GOOD case social worker w/experience providing psychotherapy for those w/a chronic illness. They can be a WONDERFUL source of support and assistance in dealing w/this DD.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/20/2010 3:02 AM (GMT -7)   
Hi I agree it sounds like it maybe Crohn's. Let us now how your test went.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on and Humira. B-12 injection once a month.
Also diagnosed with Rheumatoid Arthritis.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/20/2010 7:09 AM (GMT -7)   
We have had many folks be diagnosed with UC when in reality they had Crohns. And it does sound like it could be a possibility with you. I am looking forward to hear what the tests say, so do keep us posted. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/20/2010 11:20 AM (GMT -7)   
Hi susibuddy, I'm sorry to see you here on the CD forum...as the others have mentioned, the tests will hopeflly lead you to a concrete DX...as you know, the symptoms of UC and CD practically mirror each other, especially pain, frequency, D and such.

Be sure to update and let us know how your tests go (((((HUGS))))) and feel better soon!

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 1/20/2010 8:13 PM (GMT -7)   
Thank you everyone :)

In lieu of my small bowel test on Friday, my GI is going to start me on Pentasa tomorrow. 500mg pills, 4 pills twice a day. He said I could even split it up more than that, but I just need to take 8 pills a day. I have a question? about how long should I expect to see any results from the Pentasa if it's going to work for me? I'm so tired of feeling bad and I'm getting desperate.. Thank you again for your replies :)
 Diagnosed with Ulcerative Colitis January 31st, 2005

Remicade, One infusion October 22nd, developed symptoms of MS 3 weeks later, Brain MRI showed multiple lesions.. eek!

MEDS: No more Prednisone as of 1/06/10!!!!! Started my taper as of 10/23/09..woo hoo!!!
Apriso 1.5gm once a day, Nexium 40mg once a day, Wellbutrin 150mg once a day. 
 
        http://www.myspace.com/77016897  

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