Elddi is being sprung today - on her birthday!!

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Rachel's Mom
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Date Joined Feb 2011
Total Posts : 92
   Posted 4/25/2011 8:19 AM (GMT -6)   
ElddieMsihT is getting out of the Cleveland Clinic today - on her 19th birthday! I didn't think it was going to happen because she had a rough day yesterday and a bit of a fever but she's better today and the doc feels like she'd do just as well recovering at home. Not sure if we'll drive the 5 1/2 hours today or go to our hotel - playing that one by ear. So ready to go home!!! Thanks for all the support this week.
 
~Lynn

Disneynut66
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Date Joined Apr 2009
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   Posted 4/25/2011 9:09 AM (GMT -6)   
Yea!!!! Take it easy. I hope the ride home isn't too bad. Glad her fever is gone.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step April 4, 2011. So done with this disease.

Disneynut66
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Date Joined Apr 2009
Total Posts : 587
   Posted 4/25/2011 9:09 AM (GMT -6)   
Ooohhh, I forgot---tell her happy birthday!
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step April 4, 2011. So done with this disease.

Rachel's Mom
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Date Joined Feb 2011
Total Posts : 92
   Posted 4/25/2011 9:16 AM (GMT -6)   
Thanks, Disney - will do! My guess is it will take a while to get the heck out of here so may stay over at our hotel. We have the same distance to travel that you did only in the opposite direction! We will probably make lots of stops along the way once we do start for home. It was a bit painful in January when we traveled back after her colectomy and she was also having nausea. Fingers are crossed for an easy trip.

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 4/25/2011 9:44 AM (GMT -6)   
Yay! I am so glad she didn't have to spend her birthday in the hospital. Sounds like a stay at the hotel might be better than making such a long trip immediately after being released. That would be tough.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

blueglass
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Date Joined Dec 2010
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   Posted 4/25/2011 10:44 AM (GMT -6)   
Awesome, congratulations and happy birthday!

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 4/25/2011 2:33 PM (GMT -6)   
Great news and Happy Birthday.

We stayed at the hotel that was connected to the Mayo Clinic for 3 full days afterwards as it was a 3+ hr ride away and felt I needed to be nearby in case anything happened that might require their care. Definitely over the top but it allowed him to heal more and the ride home was uneventful. For him (probably our age factors into this moreso) he agreed any sooner would have been too soon for him. The younger set bounce back a lot faster so you probably only need a day.

Good luck on the commute home!
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 4/25/2011 3:52 PM (GMT -6)   
Yay! Congrats to her and a very happy birthday! :)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 4/25/2011 3:56 PM (GMT -6)   
congrats for getting to go home. HAPPYBIRTHDAY!!!! Have a safe trip back home. One more surgery to go.

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 4/26/2011 1:21 AM (GMT -6)   
YAY congrats and happy BD!!!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Rachel's Mom
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Date Joined Feb 2011
Total Posts : 92
   Posted 4/26/2011 8:48 AM (GMT -6)   
Well, we made the drive home yesterday. Home just sounded too good. Drive went pretty well though Rachel got very nauseated and threw up about an hour and a half from home - not fun. She felt much better afterwards. Still no appetite. Did anyone else have nausea after the surgery? She had a little with the first surgery but her appetite came back quicker. Today she's had a couple of bites of toast and a bit of Ensure. Going to take it slow and easy. She needs to get a bit of food in her stomach so she can take her vicodin. Getting her to walk a bit when she starts feeling queasy - that helped in the hospital.

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 4/26/2011 9:30 AM (GMT -6)   
Thanks so much for thinking of me, everybody!! Overall I really can't complain about my experience with this surgery - the pain hasn't been too extreme, the nausea has been a little troublesome, but if those are the worst of my troubles then I'm in pretty great shape! 2 down, 1 to go.
Gotta give a big shout out to Equestrian Mom - thanks for stopping by my room, that was awesome!!
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/26/2011 11:18 AM (GMT -6)   
I had nausea from the pain meds after my surgery. I spent my first night home throwing up all night; it might have been the worst part of the entire surgery/recovery experience so far.

I was on dilaudid and then they switched me to vicodin, but I never took the vicodin, wasn't that painful and I stuck to tylenol. They wouldn't give me zofran or another anti nausea drug, because they wanted to know what was going on, didn't want to mask it at that point.

My surgeon thought it was good that I ONLY threw up for 6 hours.... sigh.

That was a permanent ileo surgery though.

Welcome home!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/26/2011 10:35 PM (GMT -6)   
Welcome home...hope each day is easier and easier for you.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 4/27/2011 6:03 AM (GMT -6)   
I hope you are feeling better today. I had a lot of nausea after my second surgery, but that was take down. Luckily I had zofran from my 6mp days and took that. I also had crackers next to my bed at all times. After about 4 days at home it got better.

Get well soon!
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step April 4, 2011. So done with this disease.

Rachel's Mom
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Date Joined Feb 2011
Total Posts : 92
   Posted 4/28/2011 2:31 PM (GMT -6)   
Rachel had a rough day yesterday - a lot of nausea and some vomiting and last night spiked a temperature of 101.4 which scared me. She hadn't been able to take any pain meds because she was afraid that was what was causing the nausea. Called Cleveland Clinic CORS doc on call and he told me to watch her. This morning her temp was down and she managed some food and got some pain meds in her. Her appetite has been much better today - getting little tiny bits of food into her throughout the day, pluse and temp normal. Her surgeon called us today and liked what he was hearing so said we were going to "chill" for now. He did order up blood work at our local hospital. He said if things were to backslide they would want us to travel back to Cleveland rather than take care of things locally. I'm hopeful now that things are settling down. It has been just over a week since the surgery and today was really the first day she got some substantial nutrition into her. Hoping this is the trend!! Could use your continued good thoughts!

Disneynut66
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Date Joined Apr 2009
Total Posts : 587
   Posted 4/28/2011 7:06 PM (GMT -6)   
Just said a prayer for her. Glad she is doing better today. Any idea why she was having the temps? Hopefully thngs will continue to get better and you don't have to make that long drive back.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step April 4, 2011. So done with this disease.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/29/2011 5:42 AM (GMT -6)   
Thinking of Rachel, and of you.... I hope things continue to get better.

You are right to be scared by the fever... if it's an infection, does need to be treated. Good that you got the blood work, hope it was just a blip...
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 4/29/2011 3:24 PM (GMT -6)   
Happy Belated Birthday smurf

I hope today is better...sending LOTS of good vibes your way!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 4/29/2011 4:05 PM (GMT -6)   
Equestrian Mom - so sorry I didn't get a chance to meet you! Rachel was so amazed that you stopped by her room!

Fever is down today - don't know what was causing it. Appetite is still pretty poor but improving. Rachel is pretty exhausted. All vitals signs were good this morning when the WOC nurse came. This surgery has been so much tougher than the first. I can't imagine having both steps done at the same time like most people!

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 5/2/2011 7:08 PM (GMT -6)   
Please keep us posted on how Rachel is doing. I'm sorry to hear progress has been slow. The second step is usually the hardest one of the three...do they think it's and Ileus or is she still running a fever?
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/2/2011 8:04 PM (GMT -6)   
Hope Rachel is a lot better today. {{{Hugs}}}
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 5/3/2011 6:07 AM (GMT -6)   
Wondering how Miss Rachel is doing. I hope she is improving and is able to stay at home. :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 5/3/2011 12:22 PM (GMT -6)   
Thanks all. Unfortunately, we're back at the Cleveland Clinic. Yesterday she was so nauseous and by evening she was spiking another fever. We drove out this morning and they did a direct admission and had a bed waiting. She's on IV fluid now and they will try anti-nausea meds and want her to eat by mouth. She's pretty turned off of food right now and the thought of eating is intimidating but it is so much better than getting another PICC line and doing TPN (she got sepsis in 2009 through her PICC) or a naso-gastric tube. Hoping once we have the tummy settled she'll be able to start eating again - it's been two weeks since she's had a decent amount of food in her. We're not happy to be back but we're relieved to be here and not home. I was getting scared by her weakness. This is the place to be until she's on her feet. Pancakes (do you mind if I call you that?) - she's in room 21. Hope we aren't still here by Monday but, if so, please stop by! Equestrian Mom - I love to meet you, too.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 5/3/2011 2:56 PM (GMT -6)   
Sorry to hear about this setback, I hope things get better soon. It is a drag, but at a certain point, as you say, you do want to be in the hospital. Thinking of you.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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