Carlow - how are you?

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 3/9/2008 5:09 PM (GMT -7)   
Carlow - I just saw your fiance's post about the elevated heart rate, ICU, etc.... how are you? are you still in the hospital?

Please let us know how you are. I am keeping you in my thoughts.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Cortfoam in AM, Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 3/9/2008 5:38 PM (GMT -7)   
Hey UCinNC, yeah I'm still in the flippin hospital, http://www.healingwell.com/community/posticons/icon8.gif. I just want to go home! After hanging out here for a week, letting this clot and abscess heal, the docs have decided that I need yet another procedure to increase the drainage from my abscess (which was previously not being flushed and causing ungodly amounts of pain and pressure on my j-pouch by making my body want to force out healed blood clots to soon.) Soooo tomorrow morning (hopefully) they'll do this procedure and I can get back to walking and healing, again. I've gained about 30 pounds of water/fluid weight since last friday (the 29th) so getting up out bed and doing simple stuff is extremely frustrating. Thank god my fiance and family visit almost constantly, however the nights are the worst. I'm so sick of sleeping on my back, not being able to turn, move...feeling nothing but agony, shortness of breath etc, when I do get up to use the restroom. about the only positive feeling I have to go on right now is that they can't keep me forever (even though pushing 10 days now is enough for me) and they aren't supposed to open me up anymore, just move the j-pick drain and make it bigger. <sigh>, any thoughts or encouragement guys?
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (10mg taper)


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 3/9/2008 6:57 PM (GMT -7)   
hey. I know you are having a rough time of it right now, but the good news is that this will get better. You are done with the surgery, so that's great, and you WILL heal and get back to a normal life, even if it doesn't feel like it right now.

This may sound kind-of strange since we don't know eachother, but I actually am going to be at the UNC hospital later this week visiting a friend in there right now with complications due to crohns surgery, so if you or your family need anything I can swing by and drop stuff off. She too was in the ICU, only a few days before you, and I visited her there too, so I guess I just missed you. Do you need anything???? how has Koruda been about handling the complications? do you feel like he is responsive and communicative?

us UC-ers have to stick together, so even though it is a bit odd, I am sincere that I can swing by with supplies if you need anything.... my friend is in anderson. she was on the 4th floor, the GI floor, but I think she got moved....

just let me know. -Loren
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Cortfoam in AM, Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


lbw
Regular Member


Date Joined Apr 2007
Total Posts : 24
   Posted 3/9/2008 8:38 PM (GMT -7)   

Hi Carlow,

Good luck with the procedure tomorrow. Have they given you any diuretics or anything to help with the fluid retention. I hope you get out of there soon. Keep fighting the good fight.

Peace Out

Luke


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/9/2008 8:43 PM (GMT -7)   
Hi carlow,

just wanted u to know ur in my prayers. ur strength is admirable. Keep ur since of humor, keep smiling, and keep the faith. It will get better! Keep us posted!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 3/10/2008 10:28 PM (GMT -7)   
This is Carlow's fiancee again. Unfortunately, he doesn't have constant computer access. He just has it when I bring my computer, like I did when I stayed with him this weekend. He's in Anderson too. You may have seen him/ us wandering the halls.

Today, he had two procedures. One enlarged the tube to his abscess, I believe, and the other to drain 1,000 mL of fluid from his lungs. No wonder he couldn't breathe very well. sad But phoned me twice this afternoon and sounded more like his old self than he has in a long time. It was wonderful. I'll ask him when I see him later this morning if he would like visitors. Hmm... Actually, I'll just bring my computer and he can answer himself. Regardless of what he decides, thank you very much for the generous offer. I'm sure he'll be as touched by it as I am.

As for me, time to get some sleep.

-Ness
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (10mg taper)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/11/2008 8:36 AM (GMT -7)   
Carlow & Ness,

Just wanted to let you know that I am thinking about you (both).

Carlow -- Take Loren up on the visit... what a neat way to meet a fellow forum member!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 3/11/2008 8:41 AM (GMT -7)   
Hey guys,

Sooo, much improved after a hellish day yesterday! So after a night of no sleep (no breathing equals hard to you know, sleep) and a no liquid/food diet for over 12 hours...they came for me (radiological procedures) at 8 in the morning. They tried to lay me on my side for surgery and when my BP bottomed out combined with a bout of constant wheezing and air gulping (even with 4L of O2 coming down the pipes) they decided they couldn't give me sedatives...so they kicked me out of the OR! AUGH! Taking me back to my room, one of the physicians on my surgeon's team vows to get me back in their before the end of the day. They take a chest x-ray to see if/how much fluid has made its way there and redo my bloodwork. Two hours later, turns out I've got normal blood levels, but "some" fluid in my chest. Alright, so they set me up with another appt in the OR for later in the afternoon (they can never tell me when exactly). Keep in mind I've been supposed to be eating or drinking anything in case they come in to get me for the procedure at any moment. <rolls eyes>, I had one my nurses sneak me some ice chips and had my pops sneak me small cups of ice water when no one was looking....terrible crimes eh?

Ok, so I go in at 3, they drain my right side chest (did I mention I was awake for both of these procedures, which was actually kinda cool, kinda) and then I somehow groan and roll my way onto the actual table for the drain. Anyhoo, lets just say I am a very sore, but very happy boy. Overnight (in which I drank probably over 2 liters of water...I drained almost over a liter from my chest!) Hooray, I can breathe and sleep, and drink...etc! My fluid retention has also really taken off...as my fiance pointed out this morning :). So the surgeon came by and said I should be out by the end of this week things look that well. I'm trying not to get my hopes up but its the first time I've felt this good in a while.

UCinNC hey, I'm in Anderson 4 North! Just walk down the halls and look for a skinny short haired kid, or I can email you my room # if you want, just send an email to southernmemphis@hotmail.com. I'd love to have a visitor! Thanks for the offer.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (10mg taper)


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 3/11/2008 2:48 PM (GMT -7)   
hey Carlow - I just emailed you at your email address, from my hotmail account. please reply to that. so glad to hear you're on the mend. wonderful news. -Loren
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Cortfoam in AM, Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 3/15/2008 12:02 PM (GMT -7)   
Hey Loren,

As my fiancee has pointed out, I am an idiot. I'm just now getting access to a comp again...so much for visiting eh? Crikey. I'm supposed to be discharged tomorrow after two more drains were added to my abdomen yesterday. I'm feeling and looking almost normal, despite the incision pain and looking like I lost 20 pounds. I can't express how excited I am about getting out of here. Its been over two weeks now and I just want to see the outside world! lol. Its been a long time coming, and at times very painful and frustrating...but I think I'm starting to understand how its all going to be worth it in the end.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (10mg taper)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/15/2008 12:22 PM (GMT -7)   
carlow glad ur doing well!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 3/18/2008 5:54 AM (GMT -7)   
Hey guys. It's Ness again. Carlow's still in the hospital. His white count was elevated for two days, so they decided to keep him in longer. He had a CT scan yesterday and the docs found the original abscess wasn't draining properly and there's still a ton of stuff in there. So, today they're going to either move the drain so the stuff can get out better or they will put in a larger tube (again). He said he thinks he'll be in there until Thursday or Friday.

Despite all that, he's doing much better. He's acting like his old self again, albeit a bit weaker and much skinnier. The nurses keep telling him he looks like Billy Zane (of Titanic fame).

A bit of an update there. But I'm off to see him and then to work.

-Ness
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (10mg taper)


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 3/19/2008 8:24 AM (GMT -7)   
Hey all!

I'm back home! The procedure my fiance posted recently about went well and my j/p drain was moved to a more drainable position. So when I got back to my room my surgeon came in a little while later with his team and examined me. He then asked "when would you like to go home?". I was caught completely off-guard....but managed to say today in a timely fashion. Hehe. So the discharge process began, it took over 4 hours but finally I got all my post-stay instructions, prescriptions, and paperwork. We had to book it home to make it to my pharmacy in time but we got there. So now here I am, back where I was almost 3 weeks ago. Its kind of strange to be back. I feel much more cautious now, especially with the extra care steps I have to go through (empyting, flushing, and recording my drain(s) contents) oh and the self-injections those are fun. I'm secretly terrified that I'm going to do something wrong or something beyond my control is going to happen again and I'm going to have to endure an awful amount of pain (again) and/or be sent back for another hospital stay. <sigh>, life's been tough these past couple of weeks, but progress is steady if not a little slow for my liking. Ness is out getting me cereal b/c I'm pretty weak without all those hospital fluids running through me. After that maybe I'll challenge the stairs with my Dad's help and go outside for a walk. Hope all is well with everyone else. I really appreciate the well wishes and support from you guys, its really hard for people to understand what I'm going through.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (10mg taper)


jennatoga
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 3/21/2008 4:34 PM (GMT -7)   

Carlow!! My surgery buddy!!  Wow! I guess I've missed a ton! I had some complications as well, just got home myself a week ago, but nothing like you, my dear! POOR THING! You're in my prayers. Please get well, we have people to encourage! :-)   Sending good thoughts your way!

 

Jenna

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