Possible CD diagnosis

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chevgirl23
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/27/2008 6:34 PM (GMT -7)   
My name is Heidi and have been having severe abdominal pain for almost two weeks now. I have been through just about every test imaginable in the medical world. Right now my doctor's have me on Anexsia for the pain, which is only giving me temporarly relief. My digestive disease doctor mentioned Crohn's Disease and from what I have read, it sure sounds like that this is what I have. I have done a lot of reading and looking at treatments, and am a little scared about everything. With the symptoms and pain that I get I am afraid that I will not be able to or have to cut back on some of my activities. I have not found any information relating to working or activity resrictions or anything of that nature. I am looking for anyone that is willing to share their life's activities with me. I just want to be prepared if the diagnosis is CD to know what I can expect in the future. I do realize that everyone is different but anything is better than what I have now. Thank you.

broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 3/27/2008 7:15 PM (GMT -7)   
Hi Heidi, Welcome to HW...sorry you are sick enough to be here. Sounds as though if your diagnosis is CD that your inflamation is not under control at the moment and that is what is causing you to be in so much pain. Once you reach this level of pain it is harder for pain meds to do their job. Hopefully you will get a definite answer from your tests soon. Meanwhile, if you run any high fever or notice any stools that are dark and look like coffee grounds let your Dr. know immediately. Hopefully you'll get to decide on a course of treatment with your Dr. soon and the inflamation will start to subside. It's a tough disease but I wouldn't worry to much about activity levels just yet. You need to concentrate on the inflamation and learn what trigger foods give you the most trouble. Unfortunately for most of us this is trial and error. Keep reading here and you'll learn a bunch. There is also a book out that is free and the title is something like 100 questions for those newly diagnosed with Crohns. I'm sorry I don't remember how I got this book but maybe someone else will jump in with the information for you.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


Matthew
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Date Joined Oct 2004
Total Posts : 3932
   Posted 3/27/2008 7:29 PM (GMT -7)   
Welcome to HealingWell! Sorry you have to be here, though.
What are your symptoms, aside from pain, if I may ask?
You may not have to cut much activities out at all, if you get into remission without complications. Of course, let the docs find out if this IS CD first!
Let us know what you find out, ok?

Matthew

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/27/2008 8:45 PM (GMT -7)   
I self-diagnosed as well, so I remember the overwhelming feeling that you're having right now waiting for a doc to confirm it... but don't freak out.

First of all, you don't have a concrete diagnosis yet. There are a couple of other posts floating around about the efficacy of different tests for determining crohns diagnosis... the only test that confirmed mine was the full-on colonoscopy. If you've been through everything else and NOT that - it might be time.

Secondly, I was 23 when I was diagnosed with severe crohns. I got it under control - and most people wouldn't know I had it now if I didn't tell them! I have a boyfriend, I'm getting married, I go out with our friends, I work retail part-time, I drink wine occasionally, I eat dinner at restaurants without having to "special" order something, I want to have kids, I over-eat at holiday dinners... I live a pretty darn normal life. Sure, I might stake out the bathrooms in every public place I go - but I don't usually have to use them. I just need to know that they are there. And I might have to forget about that wickedly sinful looking piece of cheesecake on the dessert platter - but it's not the end of the world. The biggest adjustment and conclusion that I, personally, had to come to - was the commitment to keep my life as simple as possible and as stress free as possible. I found early on that my full-time stressful job made my crohns quite literally 4x worse than it had to be. Once I took that first step to downsizing my life - the rest was easy. I found a part time job, applied for SSI, found a slightly smaller living space for cheap... and what do ya know? My medication costs (remicade) went from $4000 a month, to $4000 every 4 months (before insurance, of course), and I feel like a million bucks compared to how I felt when I was diagnosed. Like you said, every one is different. That's just my story.

I know you're in pain right now, but you'll get through it. The board is an awesome resource. Never hesitate to ask ANYTHING or say ANYTHING - because chances are - we've all said the same at one point or another ourselves! Best of luck to you!
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


chevgirl23
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/28/2008 6:15 AM (GMT -7)   
My symptoms have been off and on for about a year now. I had severe abdominal pain almost two weeks ago and spent a week in the hospital. Along with the pain, I am nauseaus (sp?), have diarehha, very moody, headaches, low grade fevers, highly fatigued, problems concentrating and my memory has gone to crap, my shoulders and back hurt, chills, rashes, and eczema. I hope this helps anyone that may have been wondering. Well, I have a doctor's appointment in about an hour, if there is any update I will let you all know.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/28/2008 12:08 PM (GMT -7)   
I have lived with Crohns for all but 18 years of my life. I have gotten married, had 3 children and have worked in the same job for 18 years. Crohns is not a death sentence. Once you get the disease under control you can have a very normal life. You will just need to take your meds and and watch your diet a little more than others.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Landmoor
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/28/2008 2:57 PM (GMT -7)   
Heidi - sorry to hear you aren't feeling well & may have Crohn's.  First of all, there is nothing to be afraid of - everyone has issues to deal with; ours - Crohns' - just happens to different than everyone else's.   You can live a full & very active life with Crohn's - do not let Crohn's take that away from you.  I have had Crohn's as long as I can remember; I remember symptoms at age 4, starting going through a battery of tests at 12, was finally diagnosed at 15 - I am now 48.  After diagnosis at 15 my mother wanted me to not go to college, stay home & be taken care of because I had a disease; she even talked of me going on disability.  I chose a different route in life.  I went to college, got married, had kids, & have worked my entire adult life.  I am active, I go on vacations, I go out to dinner with friends, I even played semi-pro volleyball in my younger days.  Sure I need more rest & sleep than the average person & I spend way too much time in bathrooms, doctor's offices, & hospitals but I keep a positive attitude & live my life; in fact I'm not sure my life would have been all that different without Crohn's.  I have had multiple surgeries, hospitalizations, etc; in fact a month ago I ended up in the emergency room & hospital for one week.  I just look at all of that as part of who I am; just something I have to do from time to time.  I believe my experiences have made me a stronger person.  So, don't despair.  There is a great & active life to be lived after a Crohn's diagnosis.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 3/28/2008 4:29 PM (GMT -7)   
Hang in there Heidi, I don't see anything in that symptom list that would drastically change your life ( Once the pain & the Big D is under control!). We'll be praying for you..

Sincerely,
Matthew

chevgirl23
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/28/2008 7:55 PM (GMT -7)   
Thanks to all of you that have shared stories and/or support. I am very frustrated right now, as I went to the doctor today and all of my tests have come back with little signs of CD. I am about 90% sure that this is what my problem is and no doctor can tell me for sure. The doctor today told me to just keep taking the Anexsia and try to deal with the pain. Most of my family (including my fiance) just shrugs off what the doctor told me today as oh everything is fine then, but my sister is ready to take me to Mayo Clinic so we can get this figured out. I am just very frustrated and in so much pain that I don't know what to do.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 3/29/2008 7:35 AM (GMT -7)   
Mayo may be a good choice for you & your situation...
BTW, many of us ride the DX merry-go-round for years. I had problems from my junior year in college on. Of course, being the alarmist I was in those days ( & because I had never EVEN heard of Crohn's disease) I often worried about cancer. Diagnosis is as much art & interpetation as it is science, even if you DO have our DD you may not get a 100% diagnosis. And for some reason, docs lately are hesitant to make the call..
Not trying to bum you out, but its justy a fact of life for us.

Take care,
Matthew

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 3/29/2008 10:09 AM (GMT -7)   
What tests have they done for you so far chevgirl? Have you had a colonoscopy or small-bowel follow-through yet?

I hope you get some answers soon.

Keep us updated,

Bev

chevgirl23
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/29/2008 11:08 AM (GMT -7)   
I have had two CT scans, colonoscopy, upper GI, and Barium X-Rays done. On the colonoscopy, they found that my colon had inflammation and some fluid. I also had a diagnostic laproscopy done, which the doctor said everything lookd fine. I am just really getting frustrated and am at the point where I don't care anymore. I am supposed to be having a pill cam done on Wednesday, but from what the doctor's say it should come back fine, since the biopsies have been all fine. The only relief I have is when I am on the Anexsia and I can't stay on them forever. I haven't taken any pills toady (I am home alone, trying to clean house, and taking care of the kids) and the pain is so horrible. The more I do the worse it gets. Sorry to be pouring everything out on here, but it seems like since yesterday you all the only ones that seem to have anything reassuring to say to me. Thanks so much to all.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 3/30/2008 7:31 AM (GMT -7)   
I am sorry you are going through this. as others have mentioned, for some of us a DX is a bumpy journey. I was diagnosed immediately through tests, then possibly undiagnosed, now we just don't know and I might never know. take what you need now for your symptoms and don't worry about whether you can take them "forever" because things will change. just get through the next week and keep asking questions.
by the way, have you had any abdominal or pelvic surgeries? my symptoms might have come on due to adhesions from previous surgeries. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


chevgirl23
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/30/2008 8:57 AM (GMT -7)   
I have had two endometriosis surgeries, my gall bladder removed a C-Section, and tubal ligation all done. But I had a diagnostic lap done last week while in the hospital and the ruled out any adhesions from previous surgeries. My digestive disease doctor was the one who said he was leaning towards CD or Lupus. I spoke with one of his colleagues (while he was out of town) and he seems to think that there is nothing wrong and that I will just have to deal with the pain. I however just found out that this doc I spoke with just finished his residency in July, so he probably isn't very familiar with many diseases or not comfortable. Right now I am on meds for the pain, the D and some GI stuff. If I don't take the pain meds, then I just hurt for the whole day. But I don't want to have to take them all the time either.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 3/30/2008 11:41 AM (GMT -7)   
wow, girl, you have been through a lot! keep us posted about the pill cam. many people here found good answers with it. it is an easy test and kinda fun cuz you get to walk around all day looking like the unibomber. I teach college and my students were amused by the box I had to wear for it. take care and keep asking questions and reading posts here. there are good people and great info. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 3/30/2008 10:31 PM (GMT -7)   
Did I miss that you haven't had a small bowel follow through? What about your bloodwork? Is your white count elevated? How's your C-reactive Protein? Just some further questions to throw out to your GI. I pray you find some answers soon. If this is CD, we've all been where you are now...hang in there and take the pain killers for goodness sake...no need to continue to suffer if they don't constipate you!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


chevgirl23
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/31/2008 8:02 AM (GMT -7)   
I did have the small bowel follow through. I go Wednesday for pill cam. As far as my blood work went, my white count was high, red count was really low and my protein levels were really low.

Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/31/2008 4:26 PM (GMT -7)   
Hi Chevgrl, I was diagnosed with Ulcerative colitis 4 years ago..had the fevers, hi white blood count, bklood in the stool, mucus in the stool. I became anemic. If u don,t have inflammation in the small bowel, which is more related to Crohns, you may lean more to Ulc colitis. I have a 'mutt' version of both diseases...my gastro doc said in over 20 yrs he hasn't had a case like mine. Each person is different. Make sure you push the matter with your doc..a fever and abdominal pain are not normal. Good luck!
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.

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