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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/13/2008 9:36 AM (GMT -7)   
I'll post more details later, but my Crohn's is NOT good. The GI ordered up a CT which showed it was definitely active, and he attempted a sigmoid colonoscopy and he didn't want to go too far because it was pretty bad. This all started after I was rushed by ambulance 3am Friday from being in severe pain. The drug of choice has been dilaudid, which is an opiate 10x stronger than morphine! It took my pain level to around a 6....

They admitted me for at least 3-4 days. I'm an all clear liquid diet and bowel rest, so I assume he'll want me eating AND passing it before I even think about leaving. I've been on a host of drugs: Flagyl, Cipro, Steroids, Lovenox, Fluids, Phernergan, Dilaudid, Tylenol (for a fever now), and I'm on my 7th IV this week, 4th today and they are considering getting me a port. Has anyone had one? Do you recommend this? Pros? con? My 7th IV is on it's last leg!

I hate being away from my daugther, that seems to be the worst of it...

Not to mention, I ate just a LITTLE jello this morning and then my stomach made an awful gargle and I had a watery BM and back came the pain. I had gone about 18 or so hours without drugs, and back to it we went.... frustrating...

Back to resting....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
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 - 11 months old


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 7/13/2008 9:40 AM (GMT -7)   
OMG girl, I'm so sorry to hear this! What a freakin' nightmare! If your veins are shot, it might be worth getting a port if you're in such bad shape physically...I've never had to contend with that but I know plenty of others have on this board. Sweetie, take care of yourself and get plenty of rest. We are thinking about you.
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/13/2008 9:42 AM (GMT -7)   
This flare TOTALLY caught me off guard. I knew I was ill, but had no clue I was THIS sick.. I can't believe my pain levels yesterday... I really can't...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
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 - 11 months old


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/13/2008 10:00 AM (GMT -7)   
I have the worst veins ever. I would go for the port for sure. Otherwise you are going to be stuck and stuck and stuck. I almost always have to get either picc lines or mid line IV lines as my veins are so bad. Sure hope the doctors get you feeling better soon. Good luck and God Bless!!
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.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 7/13/2008 10:37 AM (GMT -7)   
My husband was in a very similar position to yours in March and April this year. He had a very rough time being sick, and was in the hospital for over 6 weeks, and is still recovering. They also had difficultly finding veins to stick him in, though he didn't get a picc line. Instead, we had folks from the emergency room or the lab come and change his IV. They were so much more efficient and capable at finding viable veins, and when they did it, they didn't seem to have much trouble at all. His regular nurses had a lot of trouble finding veins. I've heard that picc lines can be the source of infections, and we wanted to avoid it if at all possible. And thanks to the emergency room nurses and the lab techs being so kind to us, we did avoid the picc line successfully.

My husband had both c-diff and a crohn's flare together, and the doc said his colon inflammation was the worst he'd ever seen. Even at 120mgs of solumedrol, my husband got little to no relief, and was in pain, and on dilaudid constantly. He was definitely headed towards surgery to remove about 1/2 of his colon, and come back home with a bag. Remicade was tried as a last ditch effort, and it helped him get out of the hospital. He's now on remicade every 8 weeks, and is doing much better than he was at the hospital and rebuilding his strength. He's not fully back to normal, but he is much much better.

If you haven't tried remicade yet, give it a shot, if you are don't have other concerns that preclude you from trying remicade. I was and still am very worried about side effects from remicade, but as far the crohn's is concerned, it really helped my husband avoid surgery and get out of the hospital. Also, Ensure drinks helped my husband's nutritional status (even though in the end he had lost 35 lbs, and was very weak).

I hope you start feeling better very soon.

Hugs,
Preetha

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 7/13/2008 10:50 AM (GMT -7)   
Gee, I'm sorry, your signature shows you are already on Remicade. Sorry, I guess there's only a couple of other things you can do right now - up the steroids and hope that works, or see if your doc can find you some clinical trial dugs like prochymal (I've heard it helps pretty fast). Get plenty of rest, and I hope you get back on your feet real soon.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Home now after being in hospital for 45 days
Canasa, Lialda, Vancomycin, Flagyl, Colestipol, Pred 80 mgs, Remicade (3rd infusion due 5/22/08), VSL#3, FloraStor
Still having problems, hoping for a remicade miracle
Need to get off the pred ASAP


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/13/2008 11:13 AM (GMT -7)   
Thanks Nanners & PV - My 7th IV is failing.... They can't get the electrolytes in without it burning...

They think the new dose of Remicade will kick in in a few days, so we're "coasting." I typically drink boost when sick, but I'm on a CLEAR liquid diet now, so I get jello, icees, sprite, things of that nature....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
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 - 11 months old


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 7/13/2008 12:06 PM (GMT -7)   
So sorry you're having to go through this Kaycie! I don't know anything about getting a port, but it sounds like you may not have very many choices there, if your on your 7th IV! When I was hospitalized I had to be on a clear liquid diet as well. Those are no fun, by the 4th day I was so ready for some serious food! Even though my body may not have been ready for it.

I hope they can get you some relief real soon, and you'll be home with your daughter before you know it! Take care! (((HUGS)))
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 5 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 7/13/2008 2:03 PM (GMT -7)   
No advice here...I'm new to the whole crohns thing, but I just wanted to wish you well and send some hugs and support. Hopefully you'll be back home soon! Thinking of you...*hugs*
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, and in the process of being diagnosed with crohns. Too many meds to list!


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/13/2008 2:37 PM (GMT -7)   
Thanks for all the support!

They placed a PICC line, IV #7 did indeed fail. I'm on just the same thing until tomorrow, clear liquid diet. I've got to simply rest the bowel. I'm thinking I'll be here a week. I have an 11 month old at home..and the doctor knows I'll rest better here.... so we wait!

Guess this is what a "tune-up" truly is!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
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 - 11 months old


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 7/13/2008 6:34 PM (GMT -7)   
Sending get well hugs your way,please take it easy and feel better soon. :-)

potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 7/13/2008 7:04 PM (GMT -7)   
So sorry you are going through this. It is so hard to be away from your child and experiencing such pain. I had my first surgery when my twins were 10 months old, and I was so upset at having to be away from them.

Hoping you will feel better real soon and go home to your child. Sending you hugs and prayers.

ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 7/13/2008 7:16 PM (GMT -7)   
Kaycie, I hope you feel better soon. Take the time to rest, both you and your bowel and let the IV fluids provide what nourishment they can. I'm sure it must be really hard to be away from your baby. I hope you'll be reunited at home soon. Take care. 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.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/14/2008 5:40 PM (GMT -7)   
Hi Kaycie See you ended up in the hospital. Hope you get to feeling better soon and I had some problems with the IV's too .I just got back from a few days of enjoying a get away so was surprised to read your post, will be thinking of you and get better soon. lol gail

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/14/2008 6:07 PM (GMT -7)   
Hope you start feeling better soon and get lots of rest in the hospital!!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 7/14/2008 6:15 PM (GMT -7)   
Sorry to hear of your troubles get well soon take care..
Crohns for 13 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


BELLA40
Regular Member


Date Joined Jan 2007
Total Posts : 22
   Posted 7/14/2008 6:55 PM (GMT -7)   
yeah

 I am so sorry you have been through this.  I was in the hospital two weeks ago for 6 days with my Crohn's, and my veins are shot too.  Two years ago, when I was diagnosed, on the 7th day in the hospital, they finally put in a PIC line.  That saved my arms.  I have to go on Remacade after I get off this flippin Prednisone, so hopefully they will put a port or pic line in me.  LET THEM PUT THE PORT!  You will not regret it.  It is one less pain you will have to inure.  I hope you the best, and God Bless!



 


SallyC
Regular Member


Date Joined Nov 2004
Total Posts : 158
   Posted 7/15/2008 1:22 AM (GMT -7)   
I hope you feel well soon! I was in the hospital for 2 weeks when my first son was only 6 weeks old so I know how you feel. I never knew that about dilaudid. No wonder I loved it so much when they gave it to me. The pain is always the worst part for me.

I am so sorry you have to go through all of this and wishing you get home soon.
Sally
Sally
 
Diagnosed with UC in July of 2003 then diagnosed with Crohns in August of 2006.

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