Its official, I now have an ileostomy!

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andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 3/16/2009 7:37 AM (GMT -6)   
Hi all,
Well I have just spent the past 4 weeks in hospital very sick and ended up with an ileostomy. As a lot of you are aware I have been battling this DD for a long long time and trying pretty much every drug there was on the market to avoid this from happening. I was at the point where I was running to the toilet in excess of around 25 times a day and was falling apart both physically and mentally. I was totally confined to the home and had faecal incontinence on a daily basis, until that one day 4 weeks ago I made a desperate drive to my doctors office for some kind of pain relief and she took one look at me and called for the ambulance to get me in ICU at my local hospital, I was seriously malnourished and was then transferred to a larger city hospital where I spent a lot of time while they were trying to get me well enough to be able to cope with surgery. Finally it happened after 2 weeks they figured I was strong enough for surgery and went ahead and did the ileostomy. I went into surgery on wednesday the 4th of march at 2.30pm that afternoon and was done by 8pm that night, I woke at about 7am the next morning with the physio therapist asking if i wanted to try and sit up, I felt the best I had felt in years and followed her directions to the point I even had a sit down shower that day, I barely had any pain at all, my surgeon came in to see me and said my large bowel was horrible it was so badly diseased and said that was probably why I felt so good so fast was that all that toxic bowel had now gone. But of course I knew it had to be short lived because 4 days after the surgery I started to run temps around  39 and 40 degrees c, and was in the worst pain ever so they then rushed me off for a ct scan to discover a collection in my abdomen that required going back to surgery that day, at that point the pain was so bad I was begging them to knock me out. So finally had the second surgery to remove some blood and infection build up and have a drain in my abdomen and dealing with an ileostomy has all been extremely overwelming. I have had a lot of tears but look forward to having some quality of life. Im sure I will have a lot of good and bad days to come but Im alive and have hope that things can only get better from here on. I have a lot to learn still as I am so new at this so I hope you all dont mind if I bombard u with questions smilewinkgrin . Thanks all, for your help, its nice to know your all there and are willing to offer advice. Oh in case your wondering i have the colorplast one piece bag, it seems to suit me pretty well. take care and hope u are all well

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/16/2009 8:25 AM (GMT -6)   
YAY i am so glad you are finally feeling better! its awful that you had to go through SOOO much to get there though.

You will have great quality of life now, and ask us all the questions you want.

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/16/2009 3:00 PM (GMT -6)   
WOW! what a month you have had--- recovery will take a while, but you will be the better for it. I just had my ileostomy done March 13th- still in
hospital.

I was also so sick they kept me in the hospital prior to surgery to get my strength up- but you surely are lucky you went to the doctor when you did.

I guess we will both be posting here - I also have a ton of questions esp. about this darned bag.


take care and rest-----
Jackie
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 3/16/2009 4:13 PM (GMT -6)   
At first you may ask yourself, "Why did I agree to do this?" Especially when you are in so much pain and agony. But this to will pass--the pain that is. Then you will want to hug your doctor-at least I did. Most of the time I just forget that I have an ileostomy because there is no pain or urgency anymore. And that is a big change in my life!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/16/2009 5:39 PM (GMT -6)   
We are here...and you are healthy...there is nothing you won't be able to get through now!!!

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 3/16/2009 5:51 PM (GMT -6)   
Thanks guys for being there. Hope u get out of hospital soon jackie and have a speedy recovery. take care

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/16/2009 6:42 PM (GMT -6)   
Welcome to the "club"! We will await your questions. Be sure to scan the other topics as we have posted a lot of good stuff on here... now that you will be resting, you can catch up.... and you too, Jackie! Rest, walk, eat --- repeat. That will get you on the mend the quickest. Good to hear that you are doing well and on your way to being the healthiest you have been in a long time. Be Patient with yourself. Look how long you suffered with that diseased colon. Now that it is gone, the small has to learn what it is supposed to be doing now that the large isn't around any longer. The output is nasty at first; at least mine was, and a lot of watery stuff. That will ease up in time. Drink lots of fluids. Keep us updated on your recovery.
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 3/16/2009 7:02 PM (GMT -6)   

Isn't it the most amazing feeling to have the feeling of being disease free?!  smilewinkgrin    I love to just sit and feeling the nothingness!!!  IT'S AWESOME!!! 

I too am sorry you've had such a bumpy road...we all have had a nasty little experience prior to the surgery...it's not like we just woke up one morning and though, 'you know...I think I'll have my colon removed!'  tongue    I was not hospitalized prior to surgery, so I can only imagine how ill you must have gotten.  I was miserable, do not get me wrong, and I was in the bathroom 30 plus times a day off and on for 7 months...not fun!  However, now that I have my ileo I go to the bathroom when I feel the urge to pee...such a wonderful feeling! 

You will get used to the ileo.  My first week was a little dreamish...it was a lot to take in.  However, after suffering for as long as I did, I really did welcome the ileo and my new lifesyle.  That's just my take on it.  I was very grateful to have the UC pain gone and my surgery pain was excruciating, but nothing compared to the pain I had prior to the surgery.  I am just so thankful every moment of every day that I have my life back.  It's been five and a half weeks since my surgery and I love my life!  When I public I do ask my husband or family periodically if my pouch (I call it my accessory) is noticeable, as I've started to wear tighter fitting clothes and emptying it after longer spurts of time. 

Also just an FYI...I tried the Adapt lubricating deotorizer and it's crap.  Do not waste your money or time trying that and the Hollister M9...just go with the M9.  I'm not sure if there's another brand that works better, but I am SO happy with the M9...it's great! 

I also use Coloplast, but I'm hooked on the 2-piece click system.  I may try the one piece...now that I'm thinking about it...hmmm...  idea

Anyway, yes...WELCOME TO OUR COOL CLUB!!!  scool

smurf  


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


yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 3/17/2009 3:21 PM (GMT -6)   
Ive had mine for 15 years now. Geez!!! but its just a part of me now. I rarely think about it. Back when I thought I was a stud I wore bicycle shorts under my clothes and they worked like a girdle. I could wear tight jeans and a polo shirt and still no-one knew I had an ostomy. I used to wear the 2-piece system because I had alot of gas after surgery but once that subsided I started with the one piece. Being a guy, my friends gave me alot of ostomy related nicknames but I won't shock you with the details. Lol. Enjoy your new start. Just remeber this, your ostomy won't prevent you from doing any of the things you did before. I even swam at the pool after my surgery. I had to hike my trunks alittle higher and I looked like Steve Erkle but I did it anyway! Best wishes, Tony
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 6 months ago. Now on Remicade and iron. Feeling like a champ!
God Bless. Tony


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/18/2009 7:39 PM (GMT -6)   
andorable -
how are you doing? The home health nurse is coming tomorrow to help with the ileostomy. I had a rough day today- very down. Crying and panicking. Tomorrow I am calling my primary to get some Xanax. So much to deal with and still trying to heal.
Do you have help at home? My sister in law is with me now and my sister is coming next week. Then, my husband is taking a week off. I have three solid weeks of help. That is sooo important.
How are you doing with the ileostomy?



Peggy- thanks for reminding me to take it easy. I have to slow down more and call in all of those people who offered to help me.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 3/18/2009 7:48 PM (GMT -6)   
nene205 said...
At first you may ask yourself, "Why did I agree to do this?" Especially when you are in so much pain and agony. But this to will pass--the pain that is. Then you will want to hug your doctor-at least I did. Most of the time I just forget that I have an ileostomy because there is no pain or urgency anymore. And that is a big change in my life!
Nene-You nailed it perfectly!!! An ostomy,  like just about anything else, will drive you nuts if you let it. It's when you can no longer remember the pain you were in before surgery when you realize it is actually a blessing to have an ostomy! Rather than allowing myself to feel victimized, I'm greatful for the liberation from pain and medication that having an ostomy has given me.

lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 3/19/2009 5:35 AM (GMT -6)   
hi,you've been thru so much and i know exactly how u feel, i too had my ileostomy on24/01/08 like u i was feeling great and exactly one week later i had fluid gather in me i was in so much pain first they had to drain it out, it was so painful i can't say, then they decided to do surgery and clean me out, after being in theatre for two hours my family were told i wouln't make it, then i was in ICU for 24hrs and woke after 17 hrs, i was then put in HDU, and had a drain in my back for all the fluid to drain, it was so painful my back was numb with pain.
anyway i was out after 4 weeks and made a full recovery, there were tymes when i thought y did i hav the surgery, but once at home i was happy,in december i had my reversal and it's the best thing in the world. i'm so glad i did it, always think how bad the illness was, i would go thru all this again to be UC free.(dignosed UC in 2001)

good luck and keep us posted

samie xxx
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