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LadyHawk701
Regular Member


Date Joined Nov 2007
Total Posts : 49
   Posted 7/17/2008 8:14 AM (GMT -7)   
Hey everybody, I just wanted to introduce myself.  I in the past have posted on the UC forum and everybody was so helpfull.  The support was great especially last summer when I was hospitalized twice with pan colitis.  Anyways, I'm due to have surgery the 1st of August.  I was in remission for awhile after my "new" doctor (my husband was relocated last winter) doubled the dose and frequency of my remicade.  But it has stopped being affective, so before I get totally sick again I've decided to have my colon removed.  It's a 2 step surgery.  I'm a little freaked out about dealing, changing and cleaning the bag and stoma area and I'm very nervous about the surgery.  I'm a mom of a 6 yr old little girl and a 2 1/2 little boy.  My mind wanders to "what ifs" and I think of the worst when it comes to the surgery.  What if I dont wake up, what if I have a stroke during it, etc. 
 
I also wonder what recovery will really be like.  In my head I think it will be life as usual other than my new appliance and not lift over 10 lbs.  Am I going to be able to take care of my kids.  I'm supposed to be having the surgery laproscopically, but the surgeon says it's possible once he gets in there that it turns into an open incision.
 
Anyways thanks for listening.  I've learned a lot by all of you already.  thank you

32 yrs old, Mama to my darling daughter (6yrs) and my little boy (2 1/2yrs)
Diagnosed with UP in Feb 2005 Developed into UC by Jan 2006
Rowasa, Asacol, Colazal, Entorcort
Hospitalized July-Aug 2007 Pancolitis Contracted C Diff.
Salumedrol, Flagyl, Remicade, Demerol, Prednisone, Antibiotics
Prednisone tapering currently down to 5mg
Imuran 100mg
Double dose of Remicade every 4 wks HAS STOPPED BEING EFFECTIVE
Prednisone 40mg, Zoloft 100mg, Phenergen
Having a total colectomy Aug 1st 2008
 
 


mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 7/17/2008 8:47 AM (GMT -7)   
i felt like you did also. but i am a christian and i believe that God gave me the peace about my surgery. I have 5 children so i know how you feel totaly how you feel. But honestly God gave me peace. Lots of prayer helped me thru the healing time. It will be 4 weeks tomorrow since my surgery. I didnt have the bag. i had 5 feet of colon removed though and my dr left me with 10 inches but mine was for CI. so we are different in that way.
I will say a Prayer for you.

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/17/2008 9:18 AM (GMT -7)   
would you say a prayer for me too??  sad  - to be completely honest i have near enough lost my faith in God after all my suffering over the last 11 years.  i wish my consultnat would leave me some bowel, but he won't as he says i wont get any better.  i dont have any peace about surgery - my worse fear is that i either become incontinent (requiring an ileostomy) or my small bowel is totally screwed now and wont work after surgery (i got CI after a sigmoid colectomy for volvulus and have abused laxative intake for the last year).
 thanks so much.



1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


LadyHawk701
Regular Member


Date Joined Nov 2007
Total Posts : 49
   Posted 7/17/2008 9:22 AM (GMT -7)   
Thank you for the prayers.  I'm not worried about my fate, I know if the unspeakable were to happen I know where I would be spending eternity.  I just worry about what would happen to my husband and kids.
32 yrs old, Mama to my darling daughter (6yrs) and my little boy (2 1/2yrs)
Diagnosed with UP in Feb 2005 Developed into UC by Jan 2006
Rowasa, Asacol, Colazal, Entorcort
Hospitalized July-Aug 2007 Pancolitis Contracted C Diff.
Salumedrol, Flagyl, Remicade, Demerol, Prednisone, Antibiotics
Prednisone tapering currently down to 5mg
Imuran 100mg
Double dose of Remicade every 4 wks HAS STOPPED BEING EFFECTIVE
Prednisone 40mg, Zoloft 100mg, Phenergen
Having a total colectomy Aug 1st 2008
 
 


rocky road
Regular Member


Date Joined May 2008
Total Posts : 32
   Posted 7/17/2008 8:52 PM (GMT -7)   
Hi. I am also a mom of 3 boys, 9 yrs 6 yrs and 3 yrs old. I totally understand what you are going through. I am a post op for 2 months now and recovering well. Before sx I even dig all our insurances, making notes and telling my husband what i want to be done if something bad happens during the sx. And honestly I keep on crying every night always asking why do I have to be in this situation, I'm young and still full of ambitions and I have children to take care of. But I didn't blame God giving me this faith because I always believe there's always a reason why. I keep my prayers and stay strong for the sake of my children and husband. I have really ask God for an extension. Do the same thing just hold on and everything will be alright.
You will really need assistance after surgery especially on the first month.Follow all the drs advices and take time. Give yourself a time to heal, don't speed up and you can take care of your children again. Your life will be back. I am not there yet but I believe I will. Each day I am feeling stronger and stronger.
I am not on the same case as yours . I am dx FAP(familial adenomatous polyposis)and a stage I colon cancer out from few on those polyps so I have to undergo Total Colectomy. My total colon was out, my small
intestine was connected to my rectum. I am now free of cancer ,hoping it won't go back.
My thoughts and prayers for your recovery. God bless ahead!

rocky road
Regular Member


Date Joined May 2008
Total Posts : 32
   Posted 7/17/2008 8:56 PM (GMT -7)   
Hi. I am also a mom of 3 boys, 9 yrs 6 yrs and 3 yrs old. I totally understand what you are going through. I am a post op for 2 months now and recovering well. Before sx I even dig all our insurances, making notes and telling my husband what i want to be done if something bad happens during the sx. And honestly I keep on crying every night always asking why do I have to be in this situation, I'm young and still full of ambitions and I have children to take care of. But I didn't blame God giving me this fate because I always believe there's always a reason why. I keep my prayers and stay strong for the sake of my children and husband. I have really ask God for an extension. Do the same thing just hold on and everything will be alright.
You will really need assistance after surgery especially on the first month.Follow all the drs advices and take time. Give yourself a time to heal, don't speed up and you can take care of your children again. Your life will be back. I am not there yet but I believe I will. Each day I am feeling stronger and stronger.
I am not on the same case as yours . I am dx FAP(familial adenomatous polyposis)and a stage I colon cancer out from few on those polyps so I have to undergo Total Colectomy. My total colon was out, my small
intestine was connected to my rectum. I am now free of cancer ,hoping it won't go back.
My thoughts and prayers for your recovery. God bless ahead!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/17/2008 9:05 PM (GMT -7)   
i was really scared too and that is totally normal, like you i went through every single awful thing that could happen! and some of them were so stupid, like what if they miss and cut my eye out? or what if i fall off the table? i mean dumb stuff, it's just your nerves though!
at the time my son was almost two, and it was really really hard for me, they told me not to lift over 20lbs and he was more than that. So he lived with my grandma for the first five weeks, then came home and a friend stayed over when my husband was at work. That was the hardest part for me. I could have taken care of him after the first two weeks, but i couldnt lift him. With the 6 year old i would think you would be ok, however you won't be getting around too good at first. I hope i didnt' freak you out just now. If you have someone who can stay with you while your husband isn't home, or can keep the kids then that would be for the best.
good luck!

lolaleigh
Regular Member


Date Joined Jun 2008
Total Posts : 37
   Posted 7/18/2008 8:19 PM (GMT -7)   

I can understand too...I had my gall bladder out and a hernia fixed in May and didn't prepare myself for hard recovery.  I went into it very dehydrated and weak from stomach issues..Through the experience of tests, I found out my colon didn't work and having a total colectomy on Aug 11.  I have two children..7 and 11.  I know God gives us these experiences to test us.  I have to have faith it is all for a good reason. 

I'm just wondering to anyone...how have people reacted to you when you tell them you are having your colon removed due to CI?  Most people are not very supportive...I've only dealt with two or three who feel relief for me.  Everyone else acts as though I got this to happen somehow.  I had serious stomach problems for five years and ci my whole life without even knowing.  I guess they are sick of me!

Good luck everyone

Jennifer yeah


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 7/18/2008 8:53 PM (GMT -7)   
Well, I'm obviously not a mom, but my son was 3 years old when I had my ostomy surgery in '89. I remember one time in particular, before my surgery,  when my son wanted me to play with him in the backyard and I couldn't because I was in so much pain from Crohn's. Though I was a 28 year old man at the time, I cried like a little girl over it. I remember thinking to myself "what's the point of living if I can't even throw a ball around with my little boy"? On a side note.....my father died of a brain tumor when I was quite young. As a result I hardly ever really knew him. I remember when my son was born I was overjoyed. But, this @#$%ing disease was preventing me from being the father I wanted to be. Thanks to ostomy surgery I was the coach for his softball, soccer, and basketball teams. He's away at school now, but he is my best friend......umm....tied with my wife, of course.
 
The moral to my story is this:
 
Not only does ostomy surgery enrich your life, it also enriches the lives of those around you!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/19/2008 5:59 AM (GMT -7)   
Ditto Vette Guy...I went from zero involvement in my daughter's life to total involvement (and now that she is a teenager, I am sure she is thrilled!).

I don't tell everyone that I have an ileostomy. I usually just say I have Crohn's...if they are genuinely interested I'll elaborate, but you definately don't have to share your history/situation with everyone...just live your life!

LadyHawk701
Regular Member


Date Joined Nov 2007
Total Posts : 49
   Posted 7/19/2008 3:25 PM (GMT -7)   
I think I've been over optimistic on how well I'll feel after surgery.  When I got out of the hospital last summer after a really bad UC flare I could barely walk or even get out of a chair without help.  Forget about lifting my baby into his highchair or crib.  I couldn't do anything I was so weak.  We ended up flying my mother in law in from the east coast (we are west coast) to help for 3 weeks b/c I couldn't do anything.  I'm not anticipating being so weak this time around, I'm in fairly good condition now and am hoping to maintain it until surgery.  Less than 2 weeks to go!  Anyways were any of you bed ridden afterwards without having complications?  Am I going to be able to simple things like cook dinner and bathe my kids? Thanks for all your input and help.  You guys rock!
32 yrs old, Mama to my darling daughter (6yrs) and my little boy (2 1/2yrs)
Diagnosed with UP in Feb 2005 Developed into UC by Jan 2006
Rowasa, Asacol, Colazal, Entorcort
Hospitalized July-Aug 2007 Pancolitis Contracted C Diff.
Salumedrol, Flagyl, Remicade, Demerol, Prednisone, Antibiotics
Prednisone tapering currently down to 5mg
Imuran 100mg
Double dose of Remicade every 4 wks HAS STOPPED BEING EFFECTIVE
Prednisone 40mg, Zoloft 100mg, Phenergen
Having a total colectomy Aug 1st 2008
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/19/2008 4:36 PM (GMT -7)   

I was fairly healthy when I had surgery and was able to care for myself without help at home.  However, I did not have children.  I hope you have planned for all day childcare because I don't think you will be able to manage that.  I was able to feed myself, do laundry, and take care of my pets but I would not have been able to take care of a husband or children.  This is major surgery.  That being said, my recovery was fairly swift; I was back to work within 3 weeks at a desk job.  Everyone's recovery is different so plan for the worse but expect the best.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/19/2008 7:34 PM (GMT -7)   
i wouldnt' have tried to bathe my child, not only because of the lifting thing, but also because you tire very very easily and that would be hard on you. I think it would be best if you had someone stay with you for a while, or keep the children
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