update~ back in hospital

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 6/30/2010 4:12 PM (GMT -7)   
really not much else to say. I went to my gi today... he didn't like that i was still in pain... sent me to get my labs done and than all of a sudden I am being admitted again. I have a picc line this time... nothing by mouth for the next couple of days. he is not sure why the pancreatitis came back. They did run an mri to rule out any bile disorders of the pancreas, or gallstones.. but everything there looks good. Just my numbers look bad.

i cried..i hate hospitals.. but just wanted you guys to know where I am at. round two.

thank you. hugs.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 6/30/2010 4:14 PM (GMT -7)   
So sorry to hear this. Hang in there!

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/30/2010 5:17 PM (GMT -7)   
I am sending hugs your way. Hopefully this hospital stay will enable the doctors to get you back on track and finally pain free. Keep us updated.

Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 6/30/2010 5:40 PM (GMT -7)   
Hope things work out for you.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8546
   Posted 6/30/2010 6:05 PM (GMT -7)   
Good luck, june.

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/30/2010 6:46 PM (GMT -7)   
Junerainbow:  I'm glad your getting better pain management and hopefully this will start you on the road to feeling better.  Take care, thanks for keeping us posted. 

newby


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 6/30/2010 6:54 PM (GMT -7)   
Deep breaths -- THIS TOO WILL PASS. Try to use the time to rest and allow the hospital to take care of you (hard to do I know). Be well... sending ((hugs)))
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
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.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/30/2010 7:41 PM (GMT -7)   
I'm so sorry June. I know what you're going through. Thinking of you (((hugs)))
Vicky

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...


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 6/30/2010 8:31 PM (GMT -7)   
Awww, I'm sorry June. I hope your stay is very brief and you and your numbers get better ASAP. SB
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Ileocolectomy 4/08. Back on Pentasa as maintenance.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/30/2010 8:57 PM (GMT -7)   
sorry you're felling so bad! hope you get better soon!! thoughts are with you!
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/30/2010 8:59 PM (GMT -7)   

Optatif
New Member


Date Joined Jun 2010
Total Posts : 5
   Posted 6/30/2010 9:51 PM (GMT -7)   
So sorry for hearing that. Hope you could get better.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/30/2010 10:19 PM (GMT -7)   
Sorry to hear sad. Have your doctors checked for Sphincter of Oddi Dysfunction ( http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Disease_id=7AB086B0-AB01-446E-B011-2E67CAFEF96D&GDL_DC_id=320F4EDD-0021-4952-83D7-8B0C67B47BFF )? I know of someone that has this, and since it's not exactly common, doctors sometimes don't think to look for it.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/1/2010 6:14 AM (GMT -7)   
June sorry to hear you are back in the hospital.  But my personal opinion is that is the best place for you right now.  Just try to relax and let them help you to feel better.  Good luck!

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"*

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 7/1/2010 7:14 AM (GMT -7)   
Sorry to hear you are back in hospital Iknow its not very nice but, you are in the right place. hope the docs soon get you sorted out and you are soon feeling better. Bev x
Diagnosed with crohns at 13 now 43
Still battling with Doc's to get me on maintenance Meds only taking
Lomotil, 20mg citalopram,VSL#3 at the moment.

“I may not be where I need to be but,
I thank God I’m not where I use to be “


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/1/2010 12:21 PM (GMT -7)   
thank you .. dr is leaving me here .. he is in no rush to release me or allow me to eat. so just taking one day at a time..

love to all
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Pmkrier
Regular Member


Date Joined Apr 2010
Total Posts : 69
   Posted 7/1/2010 6:26 PM (GMT -7)   
Get better!!!!!
Crohn's Disease. Diagnosed in 1997 at the age of 10.
Currently on: Monthly B-12 injections Purienithol (6MP), Calcium, Multi-Vitamin, Prilosec, just starting Humira
Was on: Prednisone, Remicade ( Allergic Reaction 2nd time around)


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/1/2010 7:08 PM (GMT -7)   
Ummmmm any suggestions on the crohn's... dr talked to me tonight and he next move is humira or remicade.. are they my only options? do i ask about LDN? He keeps pointing out the mild inflammation but severe symptoms , ie, diarrhea and joint pain. I am scared to death to go to the big guns after what happened with Imuran. I am wondering if it would be worth trying entocort and colestipol together. I just don't know what to do and costs involved. any advice?
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 7/1/2010 8:32 PM (GMT -7)   
June, wish I could come visit in person.

It seems like your choices in meds should be discussed with your DR at a time when you're not hospitalized, in pain, and being fed through a tube. Is there any way to get you back on prednisone to address the short term crisis and then come back to the long term solution at a time when you're not in the middle of this mess?

BTW, I'm so tempted to ask you about that b(*&tch nutritionist ... and your TPN ... but I'll hold back!

Is your DH following all this with you? Is he keeping up with the options and discussing the issue with your DRs? I find having my DH talk this out with me is very helpful - he asks different questions than I do and he frankly keeps me honest about my pain level.

My main Crohn's complaint for the past 5 years has been joint pain. It is a tricky thing to solve. But it only became my biggest complaint AFTER I'd addressed the bloody diarrhea and mucous. It seems like you might want to put the joint pain aside for now and focus on the bowel dysfunction (and pancreatitis!). Plus one theory is that your joint pain will subside if the bowel inflammation is kept in check, although I've recently discovered that my joint pain is the beginning of my bowel flare, not the other way around.

If your DR insists on discussing all the different medicines with you now, have him write it down. Name/type of med (like immune modulator, anti-inflammatory, etc)/potential side effects/cost/length of time to see results. Whatever issues concern you, have your DR put in on paper so you can review it clearly.

I'm facing this decision, too, and I am worried about all the same things. I hope you feel better soon and we can all learn about this together.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 7/2/2010 1:25 AM (GMT -7)   
 I hope they're treating you well and giving you nexium so your at least not nauseated. Now make sure your getting proper pain relief which means NO pain, be insistant if it's not, sometimes being insistant is needed. Understand that in hospitals often the Dr.s depend on the nurses to help evaluate their patients comfort. I've found that if somethings not being treated right, tell all the nurses who are attending you. If  one of them listens well and realizes somethings not right she will be sure to bring it to the Dr.s attention. Stay as long as it takes to understand exactly what is wrong and how to treat it properly. :-)


Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.

Post Edited (Grandpato2) : 7/2/2010 2:39:33 AM (GMT-6)


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/2/2010 6:48 PM (GMT -7)   
thank you all.. its been a very bad day.. the pancreas pain subsided but my crohn's was pissed. I was curled up in a ball. GI said I was constipated and ordered an enema and gave me a laxative. I have had the worse pain ever since this all began. I was sicker than I have ever been. He ordered a second fleet and I said no ... I was crying so hard... so cold and in so much pain. Me and my iv lived in the bathroom for hours. He gave me demoral to help me out but my body wouldn't cooperate. I am at a loss as to what to do now.

I have been sharing with nurses... I am in pain tonight.. I think the enema hurt.. I am bleeding now.. dr said that is to be expected because of how violently i reacted to laxative and fleet. I have so much cramping but don't want pain meds because i don't want to be constipated again.

he was talking about releasing me tomorrow but I am scared to go home.. I don't want to be readmitted... i am confused.. in pain and today sucked.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Not2Spunky
Regular Member


Date Joined Feb 2008
Total Posts : 165
   Posted 7/2/2010 6:56 PM (GMT -7)   
Sooooooo sorry hope you are better and free of your pain soon....KayC
 RIP my beloved Chihuahua: Roxy
DX with CD of the TI in 2004 by colonoscpy biopsy, with partical obstructions x 3. Anemic, constant elevated ESR & WBC. Constant abd. pain and fatique.    
Meds: Vit B-12 shots monthly, zinc, multi vit, Vit E, Pentasa.    


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 7/3/2010 3:09 AM (GMT -7)   
June - I'm so sorry about all this. Is someone there with you to advocate for better pain control? It will make such a difference to your ability to cope, sleep and understand your options. And, it's so hard to do yourself when you're actually feeling unwell.

Keep us posted -- hope you get some rest and maybe a little more time in hospital if that's what you need.

((hugs))
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
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.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/3/2010 8:50 AM (GMT -7)   
Well the beast inside is upset.. my crohn's is flaring big time. GI is keeping me until tomorrow .. will keep me on prednsione for now and than wants me to decide what is next. He discussed remicade and humira but is wanting the remicade. My pain is controlled today which is good. And yes.. my hubby has been trying to advocate for me. I apparently am a difficult case and overreact to medications and treatments. Good news is that the pancreas numbers are stable so yay.

When I go home , I will be on a liquid diet for another week just to rest the pancreas.

thank you all for the love and support...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/3/2010 10:46 AM (GMT -7)   
Hey for the constipation issue, either ask for stool softners nightly or maybe even some milk of magnesia so that you don't get so backed up. Good luck!
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"*
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