Permanent Ileo on 1/29

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Spindy
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 1/23/2009 12:57 PM (GMT -6)   
Hi all.  I had posted here and in the Crohn's forum a couple of months ago when I was researching what started with seven options, surgery being one of them.  We'll, after all the research, investigation and additional testing, all paths lked to one solution:  Surgery.  So after 17 years of crohns and painful suffering, plus three previous resctions in the last 7 years, I go in for a permanent Ileostomy next week, Jan 29th.  Everything goes, colon, rectum, anus.  Anyhow, just thought I would update folks as many asked me to do so once I knew what was happening.  After lots of initial anxiety, I am somewhat happy now and looking forward to an improved future post-surgery and better quality of life.  Thanks again to everyone for their help on my previous posts.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/23/2009 2:33 PM (GMT -6)   

Spindy,

Welcome! I suffered with Crohn's for 7 years before surgery, so I can't imagine what you've been through after 17 years with it. sad

There's a thread on here from RobynByrd called "Soon Getting Permanent Ileo!" that has a lot of good information about what to bring to the hospital, etc. You might want to check it out.

Good luck on the 29th. You'll be amazed at how much better life is going to be once you're healthy!

If you have any questions, please feel free to ask.

:-)  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 :)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/23/2009 7:36 PM (GMT -6)   
Spindy--You definately sound okay with your decision! I want to wish you a speedy recovery and don't forget to check in with us to let us know how you are doing. You'll have plenty of questions after you meet your new friend...I wish I had had this forum for my first one...so don't be shy, ask away.

Are you counting the minutes yet?

LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 1/24/2009 8:53 AM (GMT -6)   
Spindy,

I dealt with severe Crohn's for 12 years before having ileostomy surgery in May 2008 at age 27. I too had everything removed--colon, rectum, anus.

Truthfully, I was horrified at first that I was going to have to wear a bag (that collected poo!), and I started lurking on this forum for information. I am a female, and was concerned what my fiance would think, and how I would look, etc.

Now, 9 months after surgery, I can tell you that I am happier and healthier now than ever before. I can do whatever I want; my stomach NEVER hurts! And having to wear a bag is NO big deal at all (for me at least)! I never thought I would feel that way. Half the time I forget that it is even there.

You sound like you are much more okay with the decision to have surgery that I was, so you seem like you are off to a great start in this transition. :)

If you have any questions, this forum really helped me know what to expect after surgery!

-E

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/24/2009 11:34 AM (GMT -6)   
Little E,

Did you ever think that you would be saying this:

""And having to wear a bag is NO big deal at all (for me at least)! I never thought I would feel that way. Half the time I forget that it is even there.""

And here you are, telling others just what we told you before you had surgery. It is so good to see you passing on this information to others. Isn't it nice to feel well again?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/24/2009 3:05 PM (GMT -6)   
I am very happy that you've accepted the surgery option! I will be receiving my permanent ileo 02/06. : )

Are you having a super nummy no-no dinner before your prep day?! I am!!! We're making a huge Mexican lunch/dinner...lots of spicy foods, cheeses, greasy taco salad bowls, lettuce, SOUR CREAM!!! MMMmmmm!!!

I'm only doing this b/c I start the prep at noon on 02/05, so it's not like one night of torture is going to matter b/c I am going to be done with this all together!!!

I so wish you the very best!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/24/2009 8:09 PM (GMT -6)   
Good Luck Spindy!
I'll be thinking and praying for you on the 29th (and b4 and after too...)
Update us as soon as you feel up to it.
Chassity
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; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, 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."


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 1/25/2009 8:50 AM (GMT -6)   
Peggy,

You are so right--I really never did think I would feel this way. Even though pretty much everyone here (you and Cecilia in particular, as fellow Crohnies) told me that they felt great and happy with their bag, I only hoped I could deal with things as well as you all did!

I try to be as honest about my pre-surgery feelings to those who are faced with getting an ileostomy (I was NOT okay with it at that time!! :) because I also want them to know that it is possible to hate the idea of having a bag before you actually have it, and end up liking it!

Thank goodness for people like you, who were there when I needed to hear your perspectives! :)

-E

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/25/2009 1:45 PM (GMT -6)   
I wish I could be half as positive as Robinbyrd. I'm a mess about this! Just getting rid of the r-v fistulas will be good and all this constant running to the bathroom in the middle of the night. Intellectually, I know it's such a good thing and my husband keeps assuring me that my quality of life will improve drastically. However, my best distraction has been my job and as of today I'm home on a very generous leave ---I'm "off" through the surgery which is scheduled for the end of February (see the surgeon Tuesday and may move up). While they assure me I had done nothing wrong and let no one down, my administration says they were watching me suffer and hurt myself more and more everyday and couldn't allow me to continue. I am so so so sad today. Mostly just b/c it got this bad that someone had to step in. I feel like I really failed.

OK--so back to getting informed. Can you tell me about the whole showering after the surgery? How long until allowed to take a shower?

Also, I'm hesitant to move the surgery up b/c I don't know how much care I'll need after surgery? Did you all need someone with you at all times? If so, for how long? I'll ask the surgeon but what type of care should I line up at home?

I am thankful for all of you. THANK YOU!!!
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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 2:37 PM (GMT -6)   
i took an actual shower about 8 days (i know ick!) after surgery. But i REFUSE to get in teh showers in hopstials, unless i can clean them myself first, i know go ahead laugh. i dont like getting in ones at hotels either *shudders*
but the first time i took a shower i was in there like 3 minutes and i was sooo tired i didnt' think i was gonna make it. But it felt so good tobe clean!
 
the first few days, after you come home when you are still on pain pills you should have someone to stay with you at least the majority of the time. cause you know it's hard to function sometimes on those. 
you wont be able to lift things so you will need help with that too.
i quit takign the pain pills two days after i got home and the 3rd day i wasleft alone for about an hour while my husband went to get me some ravoli, lol. 
it would just be best if you  had someone nearby who could come check up on you, or just call someone like every 2 hours or something just to make sure people know you aer ok, i am a bit paranoid abotu stuff liek that though,lol.

Post Edited (summerstorm) : 1/25/2009 1:40:46 PM (GMT-7)


Spindy
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 1/25/2009 5:33 PM (GMT -6)   
Thanks for all the responses, I do appreciate it. And yes, I'm planning to have a 'no-no' meal the day before the prep. Actually we are planning Mexican too. But I've been doing it all weekend too (Chicken Wings, Pepperoni Pizza, Steaks, even Ice Cream) because I know it's going to be some time before I get to eat good stuff again. Even though some of it doesn't agree with the crohns, it sure does taste good.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/26/2009 6:56 PM (GMT -6)   

Sammies, please don't be so hard on yourself. You have a bowel disease that you have no control over, because if you did, you wouldn't have it, right? Your co-workers care about you and just want you to be able to relax before having surgery.

(((HUGS)))
 
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 :)


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/26/2009 7:28 PM (GMT -6)   
Sammies,

I took a shower about 4 days post-op. But it wasn't a real shower. I was in the hospital with one of their removable shower heads. They don't want you to get your incisions wet. My first real shower was 7 days later. It felt so good. You get greasy and you can wash off with a wash cloth, but I find I don't get stinky when I go longer without a shower (not that I make it regular to shower once a week or anything), but I think b/c I don't have a stinky butt, I'm just not as stinky. Man I'm sharing TMI lately!!!
I had help daily. But the nursing staff could've filled that void (if you can wait 30 min. when you call them). I just liked having stay-in help and my family was happy to do it. How long you need it is probably individual too. Depends on how good you feel-how quickly you recover. Do you have kids? You'll definitely want help for a few weeks after if you do. If not, maybe a week, or less....?

I totally agree with LittleE about not wanting it an ostomy and then liking it after all.

Good luck. Of course you're scared! Normal. If you want a laugh, go back a few weeks and look at my pre-surgery PARANOIA! these poor people had to listen to my rambling for weeks. :-)

Chassity
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; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, 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."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/26/2009 10:06 PM (GMT -6)   
lol they listened to me too, and i had the absolute stupidest things i worried about. I was (this is true) terrified i would never be able to do a cartwheel again. i hadn't done a cartwheel in 15 years and saw no reason that i would ever do one again! but i was in a tizzy about it! but you can do a cartwheel, i tried, lol.
so just worry away!

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/26/2009 11:25 PM (GMT -6)   
You crack me up Summer!!! Now I have a mental image of you (whom I've never seen) doing a cartwheel in a pudding pool wearing a bra and shorts. Ha Ha Ha Ha Ha!
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; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, 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."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/27/2009 11:45 AM (GMT -6)   
OMG i am sooo gonna do that, that sounds like so much fun. Oh wait, no this is what i am gonna do. we are gonna build a zip line in the back yard and i am gonna put the pool of pudding (or maybe mud, i love mud) at the end and jump off into it, thanks for the idea!

You can see us on the photobucket page.
user name crohnsdisease
password 6mp3asa

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/27/2009 12:03 PM (GMT -6)   
be SURE to put THAT on photobucket!!!!
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; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, 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."

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