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Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 4/20/2011 3:23 PM (GMT -6)   
ElddiReMsihT is in surgery right now - 2nd of 3 step at Cleveland Clinic. She's getting her j-pouch now! Think good thoughts everyone!!
 
Also, thanks so much to all who participate in this wonderful forum - it has been so helpful to both Rachel and me. We appreciate all the kind support and we're constantly amazed by how strong, determined, and encouraging you all are.

Post Edited (Rachel's Mom) : 4/20/2011 2:51:45 PM (GMT-6)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/20/2011 3:43 PM (GMT -6)   
You are both in my thoughts smurf
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!

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 4/20/2011 4:50 PM (GMT -6)   
 
  Good luck today,  You are in my thoughts.  Please let me know how she is doing.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/20/2011 4:55 PM (GMT -6)   
Thinking good thoughts, hope the surgery goes well.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. 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

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 4/20/2011 6:58 PM (GMT -6)   
Go, Rachel! As a fellow three stepper, she is like my trail blazer as she is going through things before I do. I hope everything goes as well as possible for her and she recovers quickly and easily.
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 4/21/2011 7:34 AM (GMT -6)   
Thanks all. It was a long day yesterday. Her surgery started almost four hours late and she wasn't up to her room until nearly midnight. I think she was most surprised by how much more painful this surgery was than her first. We can't quite imagine having a two-step! Her incision, which was maybe 2 1/2 inches for the first surgery is larger and extends above her belly button now. Surgeon was apologetic but said he needed to in order to construct the j-pouch exactly as he wanted. He was happy with how things went. She has a large drain in the bottom of her incision (bigger than a jp pump - not sure I have the right name for that) which irrigates and suctions the wound. She had some awful spasming in the recovery room and they responded with valium and some extra on-demand meds which helped the pain and made her incredibly loopy! Hope I'm not sharing too much, run4pancakes - and btw, your blog is wonderful and we have both been visiting it!

Anyway, heading out to see her in just a bit. Right now she's on the 7th floor which was very disappointing to us but we got word from her this morning that she'll be moved to H5 Colorectal. Will keep you posted. Keep those good thoughts coming!!

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 4/21/2011 7:55 AM (GMT -6)   
Glad it's over - hopefully her pain and discomfort they will stay ahead of it for her even if it makes her a bit "loopy" While in the hospital and they can monitor the pain level it never makes any sense to me to be in pain unnecessarily.

Give Rachel a hug from all of us and here's one for you too Mom! {{{HUG}}}
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.

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 4/21/2011 8:17 AM (GMT -6)   
Sending healing thoughts Rachel's way. Hopefully those pain meds will continue to help. I think the first day or two after surgery is always the worst and then things get a little better.
-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

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 4/21/2011 8:20 AM (GMT -6)   
No, not sharing too much at all. My surgery will be open again, so I know I'm in for a big wound. I had those spasms after my first and the valium helped a ton. Hopefully they get her down to H5 quickly as everyone there is amazing. I think I would cry if they put me on a different floor!

Definitely make sure they stay in front of the pain for her. Keep us posted on how she is doing. Tell her I said hi!
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 4/21/2011 9:40 AM (GMT -6)   
Rachel's mom

Glad she is doing so well. My daughter had hers in two step believe it or not she really did great. She thought her takedown was much worse then the first one. Maybe cause she didn't know exactly what he was going to do.
(lol). Make sure she asks for pain meds before the pain gets to out of control. As a mom gone through this I know how you are feeling. Believe me after all this is done, Rachel will be back to old self again. I have seen it first hand. Keeping you in my thoughts she recovers as well as mine did.

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 4/21/2011 10:54 AM (GMT -6)   
Thanks for the good thoughts and the hugs everyone - it's so helpful to know there are other people out there who've gone through or are going through what we are, because unless you've been there you have NO idea. All of you who've dealt with IBD have my utmost respect - this is not for sissies. Rachel is a tiny little girl - 93 pounds before surgery at 5'4". She would get down to 74 during her awful flares, has been on TPN, has gotten sepsis, and has had a dozen blood transfusions, but yet she is the strongest person I know. She's definitely stronger than her mom, that's for sure. I hope these surgeries give her back her life because she's missed out on so much. She was diagnosed in her freshman year of high school at age 14 and missed a lot of school and a lot of fun times. She'll get mad at me for saying this but she somehow managed to be valedictorian of her class. That took determination - she didn't let the disease get in the way of her passion for learning. College was a recipe for flare - she got sick right away and we took her out on medical leave after the first term ended at 7 weeks. We realized then that moving forward with UC was not going to happen. My prayer is that come September she is back at school and moving toward her adult life. And yeah, maybe drinking a beer every now and then!

Thanks again for the support. It's precious to us.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 4/21/2011 11:24 AM (GMT -6)   
She has been through so much. I hope she is out of the hospital soon and doing better. Boy, H5 must be busy! When I was there a few weeks ago, there were many beds open. I was lucky to only have a roommate for 1 night. I hope she gets down there soon.

You both are in my thoughts and prayers for a speedy recovery.
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
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 4/21/2011 4:13 PM (GMT -6)   
Yeah - H50 is still full much to our dismay. They said they'll have a room for her by tomorrow for sure and possibly tonight. Turns out her surgery was done open instead of laproscopically like the last one. We got our first look and the incision is pretty long - Rachel wasn't quit prepared for that. The surgeon needed to do it that way in order to create the j-pouch exactly how he wanted it. There were no complications, the pouch was tested and there are no twists in it and he was happy with how it looks.
Rachel got up and took a short walk and did really well, better than after her first surgery.

Thanks again for all the good thoughts and encouraging words. They really help us - we don't feel so all alone in all of this because we know you all understand.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/21/2011 5:42 PM (GMT -6)   
I remember that wait like it was yesterday:( Hang in there...the docs don't like it anymore than the patients!
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!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/21/2011 8:39 PM (GMT -6)   
My first surgery was open and that incision is a beast. It's worth it in the long run though if it's what was needed to construct the best pouch possible. Hope she gets moved soon! Tell her to hang in there. :-)
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 4/22/2011 11:59 AM (GMT -6)   
No way!! I go down to lunch for a half hour and Rachel gets a visit from Equestrian Mom!! I didn't realize you did volunteer work at the CC, Equestrian Mom - thank you so much for stopping by to see Rachel! What a total surprise!

Still waiting on that room in H50. There are going to be some vacancies sometime today though we don't know if any of the beds available will be for females. Fingers crossed.

Rachel did two big laps around the hospital floor with ease - yay! Having all kinds of allergic skin reactions to adhesives and alcohol preps that they've used in surgery - all of that stuff developed after the first surgery and in reaction to the ostomy products. They've got her on some allergy meds and have requested a dermatologist to take a look. Isn't it enough to be dealing with surgery without being itchy and rashy? Come on, now!

In all, everything is going well. Our goal is to get Rachel sprung from here on Monday, which is also her 19th birthday. Not sure we'll make it but it's a good goal to set. We're out of here when she's ready.

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 4/23/2011 10:41 AM (GMT -6)   
Still haven't gotten a bed in H50 - at this point I guess it isn't a big deal. Rachel's getting good care and we have the window side of a room which is nice. Room mate has been in some incredible pain and spends a lot of time crying so that's hard.

Rachel ended up walking 10 laps yesterday, getting her catheter out, and today she is starting on soft foods and will probably get the pain pump removed and vicodin started. Would love to see her get a shower since it's been since Monday. She is having allergic skin reactions so two dermatologists saw her yesterday. Her face is rashy and swollen from the tape that was put over the oxygen tubing during surgery. Other than that, things are good - her stoma is outputting and all looks well. They are talking Monday or Tuesday for discharge if all continues on this course.

Stoma nurses at the Cleveland Clinic are amazing. Three of them have stomas themselves. We saw one this week who was in a horrible car wreck years ago, was in a coma for three months, and woke to find she had a permanent ileostomy. She was so kind and compassionate to Rachel. This woman said that when she got home for the first time after her accident she was in the bathroom really checking out her stoma and crying when a knock came on the door. It was one of her six children saying, "Mommy, I'm hungry!" I guess at that point she realized that life goes on no matter what and she needed to get on with it.

We're looking forward to getting on with it! Hope everyone's doing well out there and that you are enjoying your weekend.

~Lynn

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 4/23/2011 6:06 PM (GMT -6)   
I am very happy for your family that it went so well. All my best to Rachel and her speedy recover!
SZm

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/23/2011 8:37 PM (GMT -6)   
Lynn: I had that same stoma nurse! She was really great to work with. :-) I'm glad Rachel is doing well. I guess at this point it's neither here nor there if she gets moved or not since she'll hopefully be out of there in a couple of days. I hope they get her skin issues under control quickly! She definitely doesn't need anything extra to deal with. Do you guys know yet when her Step 3 will take place?
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 4/24/2011 1:55 PM (GMT -6)   
Step three is supposed to take place end of June/early July. Hoping for the earliest possible time since she wants to head back to college at the end of August.

We finally got moved last night - we're on H51, not H50 but good enough. Today has been a harder day. Rachel's been pretty nauseous and has not had much to eat since lunch yesterday. She really has no appetite at all. Because she's not eating there's no vicodin but she's doing okay painwise with the toradol. We're hoping to get her off the floor in a wheelchair like we did yesterday - it seems to help mentally to get a change of scene. Got a shower today for the first time since before surgery - and that definitely helps!

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 4/24/2011 6:13 PM (GMT -6)   
Sorry today has been rough. Tell her that is really normal to have good and bad days. I didn't know I could have been taken by wheelchair elsewhere. That would have been nice. I am glad she can do this. Does it still look like she might get out tomorrow?

Both of you, hang in there!
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
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 4/24/2011 9:05 PM (GMT -6)   
Thanks Disneynut66. No - I don't think she'll get out tomorrow. We were hoping because it's her 19th birthday but she's running a bit of a fever and not eating very well. We want to make sure everything is pretty stable before we get her out of here. We have a 5-6 hour drive home. Hopefully we'll get her out in the next day or two. They told us a typical stay without any complications was 5 to 7 days and today was day 4. How long were you in?

Today we took her down to the lobby and she played the Steinway grand piano for a bit and then we took her to the rooftop pavillion. They are more than happy to accomodate leaving the floor - it is mentally a good thing to do.

How are you doing this week? I hope every day is a bit better.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 4/24/2011 9:35 PM (GMT -6)   
Sorry to hear about her fever and not feeling well. I got there on Monday and left Saturday. My parents took me to their hotel and we stayed there that night before making our 5-1/2 hour drive home.

I am doing great. I did sleep a lot today, but I took an allergy pill so that might have been it. As long as I don't get too wild with my diet, I feel good. Nights are harder because that's when I eat my biggest meal. I try not to eat after six. If I do this, I can sleep through the night. Even before the surgeries I usually had to get up to go, so this has been great. I wish your daughter was where I am now, but it will go by fast.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step April 4, 2011. So done with this disease.
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