newly diagnosed and frustrated

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Regular Member

Date Joined Jan 2010
Total Posts : 20
   Posted 1/11/2010 7:43 PM (GMT -7)   
I was diagnosed with Crohn's in August 2009 after a frustrating and painful 5 month ordeal waiting to see a surgeon.  I lost 30 pounds in 5 months and am just now able to eat small meals without curling up in a ball and wanting to be put out of my misery.  I did 6 weeks of Entocort and then 6 weeks of Prednisone.  The Pred gave me horrible headaches; swelling of the feet, legs, arms and hands; made me fly into almost uncontrollable rages; my bones ached and of course, the signature moon face.  After the Prednisone didn't really help my pain, the surgeon was going to send me to see a gastroenterologist but has since decided against it.  I have no information other than what I am finding on the internet and finding this site was SUCH a relief.  I believe that I have it pretty easy after some of the stories that I have seen on here and feel that I need to be more proactive instead of sitting around waiting for the doctor. 
Does anyone have any tips for diet and exercise and other tricks to controlling this disease?
Am I supposed to be in pain every day or should I be having pain-free days?
I requested that my B12 be checked but are there any other tests that my family doctor should be running on a regular basis?
Are there vitamin/mineral supplements that I should be taking?
I have always been lactose intolerant and have trouble digesting some calcium pills, any recommendation on a good brand?
ANY tips that anyone has to living with CD and things to watch for would be great.  I am trying to stay positive because I know that it could be worse (and may get worse) but sometimes I just need someone to talk to who understands.  I look foward to chatting with some of you and am excited to get real advice from people who deal with this every day, not just people who know someone who knows someone with CD.

Regular Member

Date Joined Jan 2010
Total Posts : 20
   Posted 1/11/2010 7:48 PM (GMT -7)   
Also, does anyone else get swelling of the hands/fingers, feet/ankles/legs when they are not on any meds. Mine have been coming and going and it is very uncomfortable and I wasn't sure if this was part of CD (because there are so many little surprises) or if I have a new problem. I watch my sodium intake and drink a lot of water.
I have also been experiencing a lot of pain in my knees and hips lately. I understand that you can develop arthritis with CD but isn't this a little soon?!

Regular Member

Date Joined Sep 2009
Total Posts : 212
   Posted 1/11/2010 9:57 PM (GMT -7)   
Biebs77, my daughter is only 9 and was just diagnosed with Crohn's this past March. We have yet to get her into remission, even tho she did see about 8-10 weeks of relief from prednisone (which puffed her up just as you describe.)  Hang in there is all I can tell you so far.  We are off to the GI Doc tomorrow to see what else can be done for her. From what I've read her on this board, it may take a long time before you find your source of relief be it medicine, diet, supplements, enteral nutrition, etc.  Keep reading, learning, trying. And NO, you should not be in pain all the time.  Talk to your doc about this, and if he's not listening, find another doc.  ((hugs))

  • teddybearweiser
    Veteran Member

    Date Joined Oct 2004
    Total Posts : 3042
       Posted 1/12/2010 2:29 AM (GMT -7)   
    Hi Biebs77, I disagree with your surgeon I think you need to see a GI doctor. They are the ones
    whom can help you with your CD.
    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.

    Veteran Member

    Date Joined Mar 2006
    Total Posts : 1169
       Posted 1/12/2010 6:22 AM (GMT -7)   
    Teddy is right. A gastroenterologist is a specialist in diseases of the digestive tract. GIs have more experience in treating Crohns than anyone. Just as yuo should see a urologist for kidney stones or a cardiologist for chest pain, a GI is who should be treating your Crohns. General surgeons are only involved in Crohns treatment when surgery is needed.

    Regular Member

    Date Joined Oct 2009
    Total Posts : 41
       Posted 1/16/2010 9:49 PM (GMT -7)   
    Yes you need to see a GI, also there is an arthritis associated with CD & have them check your vit. D.  My bones hurt worse when my vit. D is def.  Don't eat red meat its the hardest thing for your body to digest.  Good luck

    New Member

    Date Joined Jan 2010
    Total Posts : 5
       Posted 1/17/2010 12:27 AM (GMT -7)   
    hi Biebs 77,
    i am 47 year old female (Australia) diagnosed 19 years ago with crohns disease. have spent many years in agony whilst
    trying to find the right medication. have endure 3 bowel resections and developed fistulas last year. have recently been on Remicade infustions
    which worked really well but i developed antibodies. am now on Humira self injections every 2 weeks so far so good. here in Australia Remicade and Humira
    are government funded if you meet the criteria thank god or i would be up the creek! hang in there till you find the right medication for you and try
    to stay postive.

    Veteran Member

    Date Joined Mar 2009
    Total Posts : 1118
       Posted 1/17/2010 3:33 AM (GMT -7)   
    Hi i also think you need to see a gastroenterologist they will know what meds you need to be on and be able to keep an eye on things Bev x
    Diagnosed at 13 now 43
    Reversal of temp stoma scheduled 27th Jan 10 :-)
    Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

    Never be afraid to try something new;
    remember amateurs built the ark, professionals built the Titanic.

    Regular Member

    Date Joined Jan 2010
    Total Posts : 20
       Posted 1/17/2010 8:21 PM (GMT -7)   
    I will definitely get my vitamin D checked. I went into my family doc the other day and demanded to have my B12 checked. He looked at me like I had 3 heads but the results came back on Friday and it is so low I thought the receptionist was going to fall out of her chair. I have to wait until tomorrow to find out what he plans on doing about it but at least I know I'm not crazy. My appointment with the surgeon just got pushed back another week. So frustrating. I won't be leaving his office without a referral to a gastroenterologist. Even if I am feeling better, I think it would be wise to get all the information I need to achieve remission and try to avoid future flare ups if I can.
    You are ALL lifesavers and I wish I would have found you all earlier!

    Regular Member

    Date Joined Jan 2010
    Total Posts : 193
       Posted 1/17/2010 9:53 PM (GMT -7)   
    You are on the right track now. Only a gastroenterologist can diagnose crohn's in consultation with the radiologist who evaluates your upper and lower GI tract x-rays. Surgeons never cut into people without proof. I understand about the B-12. I lost my terminal ileum in 1980 and for 15 years my gastro refused b-12 shots because the blood test was not evaluating ferritin, just iron. I now have balance problems because of it. You have taken charge before something like that happens for you. You know your body better than anyone.
    58 years old;
    Crohn's since age 21
    3 bowel resections, 1980,88,95
    1 fistula repair, 2005
    digestive enzymes
    L-glutamine powder 3 times a day
    sublingual B-12 and B complex
    2 T. cod liver oil
    2 tsp. tart cherry juice concentrate
    Multiple vitamin, 2,500mg vit. C, 1,000mg calcium mag.

    artist guy
    Veteran Member

    Date Joined Jan 2010
    Total Posts : 1373
       Posted 1/22/2010 11:32 AM (GMT -7)   

    hey 77 inspiration read my short story

    crohns since1970

    artist guy

    Regular Member

    Date Joined Jan 2010
    Total Posts : 20
       Posted 1/22/2010 7:14 PM (GMT -7)   
    Thanks Artist Guy. Not sure how to do that. Too new to all this chat stuff. Can use as much inspiration as I can get. Was feeling great for the past week and now going downhill again. Grrrrr. Seems like the only time that things are good, I am popping T3's at night like they were candy. That can't be right. When I don't take them for a week or so, I find myself slipping backwards. Do NOT want to go back on the Pred because i am just now losing the moon face and the ab fat and I am going on a tropical holiday with my husband to celebrate our 15th anniversary in 3 months. Vanity, vanity, vanity. It's really the only thing I have left. Had to give up eating, smoking and running.
    But new mantra: It could be worse! Let me know how to read your story, let me know how.

    artist guy
    Veteran Member

    Date Joined Jan 2010
    Total Posts : 1373
       Posted 1/22/2010 7:44 PM (GMT -7)   
    hey 77, I was really sick in 1970 vomiting then dia then constipatioon, I at that time was just starting in my profession which was a horse jockey and just starting to win races make money and then  it started. My mom decided she wanted to go to the races one day with me and told I didn't feel real good, we kissed goodbye at the jockey's room she told good luck and I got changed into riding gear, first race I rode I finished 2nd and was walking back to jockeys room for next race and everything looked like I was underwater with my eyes open, blurry. I got the track dr. to take my temp. 106 they paged my mom she took me home 3 days later I had an obstuction and emergency surgery at 1 in the morning just to see what the hell I forward 1 year 3 surgeries later 2 resections and I was back at the track. were I rode for 16 years until I broke my neck in racing spill. I now do my art for my living but am still fighting the fight . my cd has moved to my throat and mouth and blisters on my tongue so pred. seems the only med that helps my throat area. but I'm super scare of the moon face so diet is very critical to me. it is possible you might need surgery to remove disease area, if it can be. my last resection was 1989, see a good gi person. today I am very active semi-pro mountain biker, so exercise is really important. please seek help. I want to chat more let know
    artist guy

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