New and really at my wits end

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/19/2010 11:35 AM (GMT -7)   
Hi.. I am new to this board and really need some support...

Short back story... I have a family history of all sorts of bowel problems..and I have had issues with everything.. this past April, I was feeling really sick with migraines,dizziness..and went to a nutritionist who said i should avoid gluten.. which I did and all of my symptoms disappeared. Even my stomach issues cleared up.

Forward to Christmas when all of a sudden I was having diarrhea...thought I had gluten.. shrugged it off.. on Jan 7 I started having 15 movements a day.. urgent.. alot of mucus and diarrhea..thought I had a bug... went to the drs the next week, she sent me to a gi dr...they did a xray for an obstruction - negative.. they scheduled a colonoscopy and found ulcers, erosion but couldn't pinpoint crohns. I had a barium test and was told it was normal. I had a ct scan... normal...I had a breakdown with the doctor because at this point I am out of work, still sick, have tried 6 different medications .. she said she thinks it crohns but needs to keep looking. I had a pill cam scheduled , did that on tuesday. Today the dr called and told me that the pill got stuck in my stomach, they have 8 hours of footage from my stomach. I have to go in for an xray and than they want to schedule an endoscopy.

All of this seems crazy.. if they think its crohns , why not just treat it? what else are they looking for? I truly don't understand what is going on. Does any of this sound like Crohn's? My cousin had it but I was young when he was diagnosed.. I know he was in the hospital for a long time.

I just don't know where else to go..what to do..

Thank you.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/19/2010 12:27 PM (GMT -7)   
It could be Crohns, but it could also be other gi issues. Celiac is the first to come to mind. Please hang in there, Crohns sometimes is very hard to diagnose. I was hopeful the pill cam would provide answers, but now it got stuck:( Hang in there, we do understand what you are going thru. 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"*

jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 2/19/2010 6:08 PM (GMT -7)   
I hope that they find something soon, it sounds like you are really suffering. Good luck and try to keep your chin up!
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 2/19/2010 10:10 PM (GMT -7)   
Been there done that. I did not think they would ever DX me but the pill cam did. Though it took a long time and lots of other test that showed nothing wrong. Hope they find what wrong with you soon . Like the other have said, it could be crohns,,,but,,,maybe something else. Keep us up to date on you ...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 2/20/2010 6:16 AM (GMT -7)   
Oh my gosh i can so relate, the not Knowing and seeing all the doctors and being so tired at the same time. I dont know much about the camera. I just remember the xray screen where my intestine looked like string compared to the healthy part. There are so many other diseases that can mimic crohns it just sucks. But hang in there. Make sure you get copies of all tests that are done. And if there is a doctor your not sure about get a second or third opionion. never give up you are in my prayers. :

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/20/2010 8:11 AM (GMT -7)   
I am so thankful I found this forum... I have been feeling so lost. Thank you all for your support....had a rough night. Got really sick to my stomach.. I have such pain in my body.. my joints.. this sucks.. I have never been sick this long and not known what it is. The doctor never called me back.. I will try on Monday. I am thinking about the second opinion...

thank you again.. so much.

Christine

pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 2/20/2010 8:40 AM (GMT -7)   
Not knowing,out of work,the tests,the Dr.'s,the drugs,the pain,the D,the worrying...
We all know it will be o.k. for you soon,hang in there,I know they'll figure this out!
B-12injections,Pentasa,Loperamide,Entocort,6mp,8 week Remicade,Vitamin-D,Fluconazole,more over the counter Vitamin-D.
6-year remission after resection,and maintenance drugs.
.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/20/2010 10:15 AM (GMT -7)   
What medications have you tried? Are you still staying away from gluten? Did they test you for celiac or could they not test because you have been gluten free? Many of us have a hard time getting diagnosed because the symptoms can be so many other things, even with strong family histories. My mom had CD but when I showed signs I was told I was lactose intolerant for 10 years. The main thing to keep in mind is that you know something is wrong and keep pushing until you get help and start to feel better.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/20/2010 10:30 AM (GMT -7)   
They have had me on flagyl, bentyl, lomdil, xifaxan, there were two others.. can't remember... I am still staying away from gluten, my whole family had gone gluten free last year. They could not test .. you are right. I have a strong family history of crohn's, colitis, and bowel cancer but when I think about how sick my family always was, especially my dad.. I wonder about gluten issues. I had an independent test done for gluten and it showed celiac...but don't know how reliable.. it was a nutritionist that saw the gluten, my reg dr at the time wouldn't listen.

getting sidetracked.. sorry... really feel awful today.
I will keep pushing...thank you.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/20/2010 12:00 PM (GMT -7)   
June,
I hope they are doing the 18 foot EGD rather then just the regular 3 foot one. Especially since they got nothing of your small intestine on the pill cam, for that is where my crohns was hiding out.
Take Care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/20/2010 12:15 PM (GMT -7)   
Some people have celiac and crohn's so it could be a combo, or celiac and some other tummy thing, since you are still staying away from gluten, or gluten may just have been a coincidence. None of the meds you listed are strictly Crohn's so if it is CD and they can get you on the right medication maybe you can get feeling better. Then again, it they can just figure it out, maybe you can get feeling better. I know its hard to tough it out, but we will be here to listen and answer questions. (((hugs)))
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/20/2010 3:02 PM (GMT -7)   
Navy, I will write that down and ask them ..that is a great point. thank you.

Suzanne, the doctor said that she thought it was crohn's but she keeps wavering on making the diagnosis, I think thats what confuses me.

Thanks so much, it feels nice to have support... I kinda was feeling lost and I guess I don't understand what is happening.. thank you again.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/20/2010 5:10 PM (GMT -7)   
June,
Alot of us struggled with getting a dx, so I hope you know that you are definately not alone.
Take Care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 2/20/2010 5:24 PM (GMT -7)   
I got frustrated with my first gastroenterologist while she did several colonoscopies, CT scans, barium tests, etc. And would only give me Cipro and Flagyl. She kept telling me I have something but she wasn't sure what it was and would only give me medicines that would treat an infection. She thought I had a very resistant infectious colitis for 4 months. I got a second opinion, turns out I had C-diff and crohn's colitis. He diagnosed me after 1 colonoscopy and stool tests. Within a month I got the proper treatment. He is very aggressive in treatment. So if you are not satisfied with the results seek a second opinion- it can't hurt and you can always go back to the original dr. Good luck!
Current meds:  Remicade and Imuran 50mgs
Tried:  Prednisone, sulfasalzine, lialda, antibiotics
28 yr old female w/ crohn's colitis
NOLA, GO SAINTS!
 


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 2/24/2010 8:52 AM (GMT -7)   
Just wanted to let you all know that I had an appointment yesterday. She did an xray to make sure I passed the pill since I could not verify. I did. She then took an IBD panel and scheduled yet another test, a gi endoscopy with capsule, she is going to push the pill through my stomach. She was waffling all over the place and said she still thinks its crohns, but maybe its gastroperesis(?) because the pill didn't leave my stomach. Then she decided she wanted me to take a daily laxative which floored me since I am back to go to the bathroom about 10x a day..I am beyond frustrated. I really don't know what to do. I am scared to start over but this is not working.

thank you for all your support..

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 2/24/2010 12:54 PM (GMT -7)   
Hi, you have already been given excellent advise so I would just like to say welcome aboard this great site, it has been a godsend for me. Bev x smilewinkgrin
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."

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