I'm Home and Healing

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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/12/2009 6:13 AM (GMT -7)   
Hi!
 
I just wanted to say 'hey' and let you all know that I came home this past Monday and am working on getting better. 
 
Monday I was super hyper and excited to be out of the hospital...be UC free...and actually feel rested and semi-normal!  Needless to say I over did it a bit and wasn't well Tuesday.  In addition to that I learned my surgeon is an ass, and I have a tolerance to vicadin.  So, to make a long story short my pain management has been neglected until my GI nurse took care my needs yesterday...again, my surgeon sucks...and I am finally able to get some relief.
 
My surgery was a proctocolectomy with a permanent ileostomy done laparscopically.  It is definitely an adjustment having the bag...but really it's fully welcomed b/c the UC is gone. 
 
Our son is staying with my in-laws and I'm ready for him to be home...I miss him so much.  He is here during the days, and tonight we will keep all night for the first time in a week.  I'm very excited.  : )  I really just need his presence and though I cannot fully care for him my husband and mom are always here to help.  My mom has been AMAZING!  She's here in the morning and leaves normally when my son does...my husband and her have been doing LOTS of projects around our house, so that's why they're both needed to help care for my son...they can continue working and help me with him when needed.
 
Today we're all just going to chill and hang out...my 4 month old nephew is going to be here today and it's going to be so much fun.  The boys adore one another and they coo and smile with one another constantly.  It's definitely one tear jerking moment after another.
 
Anyway, I apologize it's taken me so long to post.  The adjustment and acceptance of my new situation is a little overwhelming at times and I'm just taking it minute by minute.
 
Thanks for all your support and words of encouragement prior to my surgery...everything you said and suggested I absorbed and it really has helped my coping process!!!
 
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/12/2009 8:12 AM (GMT -7)   
Hello Robin,

It is just so GOOD to hear from you. I have been thinking about you all week. I know how terrified you were before surgery and how scary it can be. Been there, done that. But, I have a question for you --- can you tell, even this early after your surgery, that the pain you are having (now that it is being somewhat controlled), is just different than it was before you had your surgery?

Please keep in touch with us and keep us posted... again, good to hear from you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/12/2009 8:15 AM (GMT -7)   
So happy to hear from you! You have been in my thoughts and prayers. Please take it easy and keep us posted. You are my "leader" right now. I'm on for 2/24--the same surgery. So scared! But so happy you are doing well!!!!
24+ years with Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08;codeine for D; sometimes supplements: MSM, e, selenium, C, B complex, multi, iron; recent meds to get through til surgery include propranolol and xanax


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/12/2009 9:37 AM (GMT -7)   
Robin,
It's great to hear from you! I've been thinking about you and praying for you, too. Sorry to hear your doctor was such a jerk, but I'm glad you spoke up and got some pain medicine that works for you.
 
That's great that you get to see your son today! I'm so happy for you. Don't forget to get lots of rest, because that's when your body does the most healing. Congratulations on being UC free!!
 
:-) Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 2/12/2009 10:15 AM (GMT -7)   
Hey Robyn, glad to hear the surgery went well and you are at home recuping. Just wanted to pop in to say hi, and wish you the best recovery.

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/12/2009 11:14 AM (GMT -7)   
Robin! Great news...laproscopic surgeries are sooooooo much easier! Just remember you don't want to lift too much too soon...keep us posted:)

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/12/2009 8:58 PM (GMT -7)   
Hey I forgot to mention to you about the vicodin.
I also have a tolerance to it, so they gave me percocet- It works much better. Have you tried that?
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/13/2009 6:10 AM (GMT -7)   
I LOVE the right medications! Pain meds that is. : ) I'm on a super high dose of vicodin and alternate that with occicodine (sp.) every two hours until I'm healed a little more. I went down to half doses of each through the night, and am playing it by ear regarding my needs through the day.

My son came home yesterday and is here for good! I did do the care through the evening, as he just started cutting his stomach teeth and along with it comes a runny nose and cough...so the night was full of loves, Vicks, Mucinex and Tylenol. : ) But he's HOME!!!!

As for the pain I feel...it's muscular around my belly button and to the left...the area of my stoma isn't horribly sore at all. My UC allowed me to feel almost every inch of my colon...when anything went through me I felt it and I always had some sort of pain or discomfort. So, now that it's gone I definitely notice and love that it's no longer there. I'm on a prednisone taper, so hopefully I'll be back to me in no time!
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/13/2009 12:57 PM (GMT -7)   
RobinByrd said...
My UC allowed me to feel almost every inch of my colon...when anything went through me I felt it and I always had some sort of pain or discomfort. So, now that it's gone I definitely notice and love that it's no longer there.
 
Isn't it amazing when the pain you've felt for so long is really gone for good? It's something that's hard to explain, but once you've experienced it, you want everyone who has suffered with UC or Crohn's to experience, too. I'm really happy you're doing so well.  :-)


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/13/2009 9:55 PM (GMT -7)   
Glad it's over and you are on the mend, try to rest as much as possible, don't over do it again. Your son will only know a healthy & happy mommy! smilewinkgrin
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 2/13/2009 11:03 PM (GMT -7)   
It is so good to hear that you are home and doing well. I had UC for a long time too. The surgery cured all the UC misery. I echo what everyone else has said about going slowly and resting as much as possible. That will pay off in the long run even though you are going to feel so good that you might be tempted to over do it in a few weeks. Someone on here said it takes as many months to really heal as it took to do the surgery??? Where that came from I don't know, but it seemed to be true.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/14/2009 8:57 AM (GMT -7)   
I am trying to stay sitting and not push too much...it really is just so hard b/c I do not like being still. However, my tummy is sore most of the time and it's a reminder that I do not want it get worse. : )

I do have a question...or a couple really...

1) for those of you with total colectomy, did your bootie bleed? Mine seems to have a constant discharge but it seems as though my body is ridding itself of the nastiness inside...is that normal?

2) my stoma was bleeding this morning...around the outside...it seems to be shedding gross little layer of yuckiness...is that normal too?

My medical care regarding the surgery was not the best...my ostomy nurse was great about the bag and follow through, but no one really told me what to expect or what to do regarding future bleeding issues.

Thanks!
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/14/2009 12:16 PM (GMT -7)   
Hi Robin,

Just checking in to see how you are doing? Guess I'll have to come and visit you on this board now:)
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(

Post Edited (mjw82704) : 2/14/2009 12:27:12 PM (GMT-7)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/14/2009 1:44 PM (GMT -7)   
YAY so glad you are home and doing better!!!

If they closed you up at the bottom it will be all icky for a while.
As for the stoma having blood around the outside, that's normal, the stuff you are calling sheddign stuff if probably just poo that got stuck. sometimes the poo is white and mucousy and it looks weird if it gets on there.

moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 2/15/2009 9:44 AM (GMT -7)   
Robin, Thank you so much for being so candid about your journey. You have asked the questions I have been thinking. The responses you have received from the veterans here have been awesome. I am glad your surgery went well, and am impressed by how soon you came home from the hospital! Each day I look forward to hearing about your progress with healing and adjusting to the new you. I will soon be where you are.
scheduled for permanent ileostomy surgery 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs. prednisone
51 years young


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/18/2009 8:04 PM (GMT -7)   
moreglorydays...

I see that your surgery is tomorrow...so at this moment you are probably ucky from the prep and nervous about the following day. The few days following your surgery will be a blur...I thought I was coherant but after I was home a couple days realized that most of my conversations/interactions were easily forgotten. : )

I wish you the best of luck and please let us know how you are doing once you're able. Also, if you have any questions this is the best place to ask them! I have learned so much and gained so much from the wonderful people here!
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/18/2009 9:02 PM (GMT -7)   
Robin-
Now you'll be one giving advice!!!! So cool.
"It's the circle of life..........."(sing the lion king song-you know you know the words)
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 2/19/2009 3:39 PM (GMT -7)   

You are inspiring me and giving me the confidence I need.  My surgery is scheduled for the 18 of March  -  and is not laprescopic, but open.  But my surgeon has me meeting with the senior laproscopic surgeon at the hospital. 

I pray your healing continues..and thank you for sharing your experiences.  Would you have been in more pain with the open surgery - do you know?

best to your family

bob

 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/19/2009 6:50 PM (GMT -7)   
Bob...

I would think that my pain would be worse with the open surgery, as the body receives much more trauma and damage to the muscles an organs. If I compared the pain and recovery time to my c-section I would take this surgery over the c-section any day. Some have great success with their c-sections, but I was super sore for a good 4 weeks or more, and my proctocolectomy was two weeks ago and I'm able to do so much! Lifting of course is a big no-no...but just my attitude and energy level has greatly improved.

I was just telling my husband this evening that it's amazing how my emotional side has just been revamped since I've been UC free. We're making dinner plans and family gatherings for the next many weeks in a row and it's awesome! Prior to the surgery we didn't do any of that b/c just trying to plan something away from a bathroom or that took any kind of planning on my part would be too stressful and draining. But no anymore!!! I LOVE being able to go to other people's home for dinner and not stress...I LOVE being able to go out of town for dinner and not worry about cramping and the pain I felt and having to put on a good face while I silently suffered. I will never again be in those situations.

Chassity...

I'm actually going to do consultations with my GI's clients when they need help deciding on surgery or are having issues with accepting the disease and their situation. It'll be free counseling until I'm licensed then I can start charging. : ) And I won't be able to call it counseling until then...so I'm just a volunteer consult. : ) I spoke with my GI nurse about it more today and I am really excited! So hopefully I'll be getting more people involved with our little support group family!
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 2/19/2009 8:06 PM (GMT -7)   
Robin I'm glad your surgery went so well, it sounds like you are doing great! I remember how worried you were, we were all there. Just remember to take it easy and not do too much to fast. No matter how you look at it your body has gone through major trauma so you have to let it rest. The pain meds are great when they work but they make you feel like you can do more than you should. Just be careful sweetheart and don't overdo it.

So glad you are home, happy, and healthy!!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
 
The whole world is at your feet; so paint your toenails Red!
 

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