New Member -- Currently admitted to hospital

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a_recent_mrs
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 6/9/2010 2:32 PM (GMT -7)   
Hi everyone,

New user here! I'm a 23 y/o female with Crohn's disease. A little about me: Within the past year, I graduated from graduate school with my Master's in Occupational Therapy, started working, got married, bought a house, and a new car... Its been a whirl-wind year! As one can imagine, the stress of learning how to balance all of my new roles has been difficult, and my CD has been creeping back into the picture ever since.

I was diagnosed with CD in 2007, after months of mis-diagnosis and misery. Immediately, I had a small bowel resection (18") secondary to semi-complete obstruction. Appendectomy at that time as well. Was treated with 6MP for one year, and upon follow up scope, active Crohn's had not only returned but had spread to large intestines as well. Switched to Remicade infusions, every 8 weeks, at that time, and have been on them since. At scope in August, '09, I was given wonderful news - - there was NO signs of active CD at all! Symptoms were pretty well controlled, and diet was starting to be able to be expanded. Symptoms began increasing in frequency, most noticeable around the time I was due for next infusion. Bumped frequency to every 7 weeks for infusions.

Just got back from vacation in Napa Valley... and found myself in the ER Monday afternoon. I was admitted for what I thought was my first 'real' flare.

Currently, CT w/contrast showed active inflammation at prior resection site, as well as in proximal large intestines. Had a enteroscopy and colonoscopy today -- both showed no active inflammation of CD. For the first time, I will be having a capsule-endoscomy (picture/video capsule that I swallow, and takes pictures throughout GI tract till I pass it). This test is scheduled for tomorrow a.m.! I'm nervous - but they are unable to see the inflammation from the upper or lower scope equipment. GI is thinking I am having a partial obstruction, stricture, active inflammation, or adhesions separating from abdominal wall -- in any case, doesn't sound overtly surgical.

I've never used forums, so bare with me please as I "learn the ropes". My husband uses forums for everything - from deciding between brands of tvs, to models of cars, to self-help, so I thought...why not try it, too!

I'm looking for support now more than ever, as I am nervous for what these tests results might show, and for a possible second surgery... Nervous to be told perhaps Remicade isn't "the" answer... Nervous that my CD may begin to get out of my control again, and begin controlling me...

Thanks to all who are reading this, and I look forward to getting into this network of support!
~ Diagnosed with Crohn's disease in 2007; 18" small bowel removed in 2007; appendix removed in 2007; 6MP 2007-2008 with no help; Remicade 2008-present with moderate help; Prednisone with flares -- Chronic migraines diagnosed in 2009; currently moderately controlled w/Gabapentin, Co-Q-10, and no aspertame or caffeine -- Fibromyalgia diagnosed in 2010; currently mildly controlled w/Gabapentin and exercise ~


mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 6/9/2010 2:41 PM (GMT -7)   
hang in there. This board will be a great support network for you.

Mirowpl
47 yrs old male married 2 teenage boys. 
  • Dianosed with CD 13 yrs ago-probably had it for a lot longer 
  • tried Asacol, Pentasa, Cimzia, Remicade, Predisone
  • Had blockage in 2009-hospitalized for 6 days. 
  • Had surgery in Jan, 2010 to remove terminal illium-13 inches total of small and large. found 3 strictures.
  • had  nasty bleed out from surgery requiring another hospital stay 
  • Tried 6MP after surgery lost more weight. 
  • Had follow up colonoscopy- Crohn's is back already
  • Now restarting Remicade.

Are we having fun yet?


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 6/9/2010 4:25 PM (GMT -7)   
Good luck - hope it's non surgical and you find the right treatment plan.

I was also diagnosed in 2007 but very unwisely left this forum and my CD treatment for several years. In the middle of a very uncomfortable flare right now. Having learning my lesson will stay with the program this time. (My current post is on the board now -- "Flaring after 2 years...."

You sound like you have a good support system and a good attitude -- welcome, and I wish you all the best.
Official dx September 2007.
Medications: in the midst of changing - now on Prilosec, Pentasa, Prednisone - have used 6MP in past
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/9/2010 6:04 PM (GMT -7)   
Welcome a_recent_mrs to the best Crohns support forum out there. We have alot of wonderful, loving and supportive group here that will surely have an answer to any questions you might have. Ask any and all questions you might have, even if you think they are embarrassing, as we have heard it all. Sure hope your test results come out well, and they get you feeling better soon. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 6/9/2010 8:35 PM (GMT -7)   
Just try to wait until you find out what's going on, then deal with it then. I know it sounds easy, and I know it's really hard to not worry, but stress isn't good for any of us, and you can't do anything until you find out the results. Hopefully it doesn't mean surgery, and maybe it just means you have to have infusions a little closer together. Please let us know how the test goes and what they find.

Glad you found this forum. It is helpful and more supportive than anything else I've found. There's nothing like having input from people who have been where you are.

Good luck tomorrow! :)
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


beca123
Regular Member


Date Joined Jan 2003
Total Posts : 224
   Posted 6/9/2010 8:54 PM (GMT -7)   
Welcome to the forum a_recent_mrs. I hope they find out what is going on with the Capsule test. I had it done when I was in highschool (im 20 now). My doctor had me swallow whole grapes to practice but it really wasnt that hard for me. I hope everything goes well and you will get some answers about what is going on.
 
hugs.
20 yr old female. dxd 2002. previously on 6-mp,Entocort, Prednisone, Flagyl, Cipro, Fiber, and Remicade. Currently on Humira and Elavil. Had first resection in Oct. 2009. (half of colon and some of small intestine)
 
 
 


a_recent_mrs
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 6/10/2010 4:25 PM (GMT -7)   
Thanks everyone! Its great to hear the support already! The capsule swallowing went okay - they doctors will read the results in the morning. There was a little scare that it got stuck, but the xray looked like it was where it should be... no passing of the capsule yet, but just had food and water for the first time since Monday morning! Hopefully that will get things moving along. Here's hoping for no surgery.... and that I can be discharged tomorrow with prednisone and pain meds. I'm allergic or intolerant to so many pain meds... so any good recommendations for meds that help with pain that I'd be able to take? I can't take: asprin, ib profen, tylenol, percocet, dilaudid, or toradol. To my knowledge, that pretty much leaves vicodin, but i'd prefer not to have a narcotic... thoughts?
~ Diagnosed with Crohn's disease in 2007; 18" small bowel removed in 2007; appendix removed in 2007; 6MP 2007-2008 with no help; Remicade 2008-present with moderate help; Prednisone with flares -- Chronic migraines diagnosed in 2009; currently moderately controlled w/Gabapentin, Co-Q-10, and no aspertame or caffeine -- Fibromyalgia diagnosed in 2010; currently mildly controlled w/Gabapentin and exercise ~


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/11/2010 6:22 AM (GMT -7)   
What not Tylenol?
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…


JAB
Regular Member


Date Joined Nov 2003
Total Posts : 351
   Posted 6/11/2010 7:52 AM (GMT -7)   

Welcome to the site. This site is great for support and any type of questions you may have. You will find alot of experience here when it comes to Crohns. Hope you feel better and find resolution to what you are going thru now.

JAB


a_recent_mrs
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 6/11/2010 12:02 PM (GMT -7)   
Can't do tylenol because of chronic migraines - my neuro feels it makes migraines cyclical, by not allowing your body to maintain a proper level of seratonin...
~ Diagnosed with Crohn's disease in 2007; 18" small bowel removed in 2007; appendix removed in 2007; 6MP 2007-2008 with no help; Remicade 2008-present with moderate help; Prednisone with flares -- Chronic migraines diagnosed in 2009; currently moderately controlled w/Gabapentin, Co-Q-10, and no aspertame or caffeine -- Fibromyalgia diagnosed in 2010; currently mildly controlled w/Gabapentin and exercise ~


Jonny Five
Regular Member


Date Joined Sep 2009
Total Posts : 107
   Posted 6/11/2010 12:33 PM (GMT -7)   
I have always wondered - what happens to the pill cam after the test? Do they reuse it? Does it get flushed down the toilet? Or is it disposed of as medical waste? Seems like an expensive thing to not reuse, but I'd want some pretty thorough sterilization procedures if I'm about to swallow a used pill cam...

a_recent_mrs
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 6/11/2010 12:39 PM (GMT -7)   
Believe it or not, they just let you flush it down the toilet! But its an expensive test, so I can't imagine the insurance companies are happy about that. You typically don't even know you pass it.
~ Diagnosed with Crohn's disease in 2007; 18" small bowel removed in 2007; appendix removed in 2007; 6MP 2007-2008 with no help; Remicade 2008-present with moderate help; Prednisone with flares -- Chronic migraines diagnosed in 2009; currently moderately controlled w/Gabapentin, Co-Q-10, and no aspertame or caffeine -- Fibromyalgia diagnosed in 2010; currently mildly controlled w/Gabapentin and exercise ~


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 6/11/2010 1:01 PM (GMT -7)   
LOL Jonny. Hey, when I had the camera pill, it NEVER came out. I was terrified 'cause I never managed a bm. What eventually happened was that during surgery, they removed what didn't fall apart from the constant medicine at that time. But that was my case. It went into a fistula and got caught.
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin

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