just a vent...why is it so hard to get things addressed?

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Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 3/27/2009 8:11 AM (GMT -7)   
So after two blood transfusions and fighting some massive infections, I am not doing so hot.    But if I want see a GI then I have to wait until Monday.  I know it is the VA and the hosipitalist is an ok doc, but I just feel like I am fighting an uphill battle here.
I feel like I am so far behind.

Complete lack of family support and understanding is driving me nuts.

Forum Co-moderator - Crohn's Disease:_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…

Post Edited (MMMNAVY) : 3/31/2009 10:19:58 PM (GMT-6)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/27/2009 8:23 AM (GMT -7)   
Navy I am so sorry that you are having such a hard time finding and getting some relief. I can only imagine that your spirits must be pretty battered at this point and then not having any family support just adds to it. I wish we lived closer, I would be there for you! I am sure its not just the VA with crappy docs either and having to hurry up and wait for any tests, I know even with my insurance I still have to constantly battle for help.

Please know that I will definetly keep you in my prayers. I sure hope things start looking up for you soon. And come here and vent all you like, thats what we are here for.

Giant Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 3/27/2009 9:02 AM (GMT -7)   
Hi Navy!

I am so sorry you are so sick! The stress of having to deal with hospitals and doctors must not help your healing. Are the infections under control?? On the positive side, maybe more time in the hospital will help ensure the infection is totally gone. The last thing you want to do is have to come back to the hospital! Just take it as easy as you can and Monday will be here soon.

Sometime VAs are excellent and sometimes you just wonder if they could any more bureacratic. Is yours' a modern VA? Are the nurses skilled and attentive? How is the food? Are you all going to get the wicked weather this weekend??

Praying for your healing, and for skilled and compasionate doctors. Take care!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 3/27/2009 9:38 AM (GMT -7)   

Sorry to hear about your down and out condition these days. Not sure if it helps, but I remember feeling completely beaten down by this disease, for months on end before my last surgery. Finally, I am doing great these days. Please keep up hope that things can get better.

I have had a lot of challenges in my work these days, and a few weeks ago, I felt like I might have to give up and find something else to do. I got this fortune in my fortune cookie that said, "If you maintain your present course, you will attain your goal." it really struck me, and I held onto it. This week was a lot better than the previous few.

Hope you get feeling better soon. You are so helpful to others, you certainly deserve a little help yourself!

- Nat
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?

Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 3/27/2009 9:38 AM (GMT -7)   
*HUGE* hugs Navy! I had no idea you were in the hospital. I wish I was near so I could help you. I'm so sorry your family is not more supportive. I have a family members that think I somehow *enjoy* missing work so I can sit at home in pain or in the hospital.

KUP on when you get out. Did the Humira instigate the infections?
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 3/27/2009 4:50 PM (GMT -7)   
Oh, Navy. I'm so sorry you're struggling and so sick right now. I hope you know that we are here and care and will listen.

I'm sorry, too, about your family. Would it help to talk about it?
Co-Moderator Crohn's Forum.

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 3/27/2009 5:49 PM (GMT -7)   
Navy, I'm thinking about you hon...

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 3/27/2009 6:27 PM (GMT -7)   
(((((((((((( Navy )))))))))))))

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jan 2003
Total Posts : 6117
   Posted 3/27/2009 7:34 PM (GMT -7)   
me too! what did i miss? what the heck is up with blood and infections?


Miss J
Regular Member

Date Joined Mar 2009
Total Posts : 27
   Posted 3/27/2009 7:50 PM (GMT -7)   
*hugs* To have come this far without 100% total support and understanding from family is a testament to your inner strength...but hopefully things will start going better very soon. :-)

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 3/27/2009 8:03 PM (GMT -7)   
I know how exhausting it is to be sick and then to have to deal with the system and all that garbage too. Stay strong navy.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 3/28/2009 12:57 AM (GMT -7)   
Wow I am so sorry to hear things aren't better for you. I know families and friends do "get this disease and how hard it is. I do and will keep you in my prayers. "They" (who ever that is) say most hard battles make us stronger so hope you can win the war and find a good Dr. (I've decided they are priceless.)

RifaxCrohn where did you learn about all this. I thought "I would like to try that". Is this your meds and have you been on it 9 months? Would be interestedto hear the results.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 3/28/2009 5:30 AM (GMT -7)   
I hope you feel better soon!
Sorry to hear about your family not caring. At least you have us Crohnies for support.

Get well soon!!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Veteran Member

Date Joined Apr 2004
Total Posts : 1200
   Posted 3/28/2009 6:34 AM (GMT -7)   
Navy, sorry to hear your in the hospital and no support from family. I'll keep you in my prayers and hope your drs. get to the bottom of things.(((((Navy)))))

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 3/28/2009 10:51 AM (GMT -7)   
Hey, your not spoze to be in da horsepistol.....Hope you get to feeling better and get out in the fresh air soon. I know you and old VV trust the VA to help you but I gave up on them long ago. Yes I pay through the nose for it but I feel like I get better care. Hope things are better with the VA than when I needed them. Take care of yourself and let us know whats going on. Your in my prayers....(((((Navy))))
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.

Regular Member

Date Joined Aug 2008
Total Posts : 467
   Posted 3/30/2009 7:14 PM (GMT -7)   
Hope this finds you feeling better and getting some answers. Sorry I haven't been around, It's inventory time. I'll keep you in my prayers. Please take care. It's hard for me to imagine the lack of family support for someone who is so loving and supportive for us here on the forum.
  Never go faster than your guardian angel can fly! I get by with a lotta help from my friends!Be Patient And Tough, Someday This Pain Will Be Useful To You.     
 Crohn's DG 2003 , symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Followed SCD Strictly 2003-06, then modified by adding new things 10-12 days apart to avoid delayed reactions in the form of arthritis symptoms. Scope on 2-5-09 was great! Doc says no symptoms,No scope for 10 years!!!

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