Reversal partial fail

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Tigergirl10
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 3/20/2011 10:48 AM (GMT -6)   
Been having a colostomy since sep 13th 2010. Due to severe endometriosis that got in my colon. Went in the hospital on march 16th to get it reversed. Couldn't wait for the bag to be gone. It made my life hell. Except what was supposed to be a 2 hour operation turned into 4. And was horrified to wake up with the bag still attached to me. Now I have an illeostomy. Dr said he was able to connect me but with so much scar tissue in the rectum it was difficult. He had to use over 50 stitches. So he didn't want waste passing through hevwanted the join to heal. Reason for the temp illeo. So have to wait 8 to 12 more weeks to again get a reversal. Cutting right into summer. Feel so depressed and alone. Illeos are constant drainage so always having to empty. Posting this from hospital. Still haven't been released yet.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/20/2011 1:00 PM (GMT -6)   
     Sorry to hear this Tigergirl.   Hope things improve for you.  It must be very depressing but try and think positive thoughts..saying..and this too shall pass.  It worked for me.  Things will get better.
     I'll keep you in my prayers.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/20/2011 7:32 PM (GMT -6)   
Sorry to hear this...it's tough when you hope and expect a different outcome only to find another obstacle and delay.  But keep focusing on the end result.
 
Hubby was hoping not to have a permanent ileostomy but the j-pouch was not meant to be so I can relate to disappointment. 
 
But stay positive on the fact this is a temporary set back and I hope it passes quickly for you.

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 3/20/2011 8:02 PM (GMT -6)   
I'm so sorry for your setback. It's temporary, so just try to see the relief that will be when everything is said and done. I too, will have my reversal soon, probably in June, wanted it sooner. I hope that my reversal will work out without any complications, but have been trying to mentally prepare myself if there are some. My TC was a nightmare and have even debated keeping my ileostomy due to the fear of another surgery and the "what if's". Your not alone and stay positive, hang in there!!!

Tigergirl10
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 3/20/2011 8:10 PM (GMT -6)   
I am only 34. Guess I am having a hard time coping because I am young. Just had a breakdown in bathroom. Went to empty and Velcro clip came off. Had to sit on toilet waiting for a nurse to bring me another bag. While green liquid continued to erupt like a volcano. I am getting married dec 2nd. It took a great toll on our intimate life. I have yet to get my wedding dress. Didn't want to try on dresses while wearing a bag. Tired of my life being pushed back.

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 3/20/2011 8:41 PM (GMT -6)   
Sweetie - hang in there.  Reading your last post I can certainly relate and totally understand your emotional state over all of this (having had some major disappointments myself during my lifetime).  I am a very sensitive and emotional person and I know it can be maddening sometimes to keep hearing the cliches.  But you really do have an upside to look forward to and I truly hope you can somehow make a temporary peace with this and focus on the pot of gold at the end of your rainbow.
 
I hope tomorrow is a better day and the day after and so on.  I truly am sorry for your disappointment.
 
{{{HUGS}}}

Tigergirl10
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 3/21/2011 7:34 AM (GMT -6)   
Going home from hospital today. Barium enema in 6 weeks. Hopefully only 8 weeks to deal with this darn bag once more. Then full reversal
In hopefully 8 weeks. 8 weeks should go by fast.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/21/2011 7:50 AM (GMT -6)   
Having my first cup of coffee and checked in here to see if you posted.
 
Good -- 8 weeks is better than 12..get home and rest up.  Take Care.

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 301
   Posted 3/21/2011 8:33 AM (GMT -6)   
Eight weeks does go by fast. Just make sure to stay hydrated, as I think the ileostomy doesn't allow you to retain as much fluid as the colostomy did. I didn't drink enough the first few days I was home with my ileostomy and I ended up back in the hospital with dehydration.

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 3/22/2011 12:26 PM (GMT -6)   
Hey Tiger
 
I know it is so upsetting but they should have warned you you may need an ileo because of the previous scar tissue - if they connectd you before knowing it was completely healed you could have ended up in a much more worse condition and more... cheer up you will be ok at the end of it all - and you can stil try on wedding dresses - the bag hardly shows really - and you will get used to when it fills up so you can have an empty bag for when you try on those dresses. turn   There is light at the end of your tunnel!! smilewinkgrin
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR procedure - mucosal prolapse/ODS/diagnosed slow transit constipation
2007: Sigmoid resection (MRI showed twist) - made colonic inertia worse (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal - not going well

puddney
New Member


Date Joined Mar 2011
Total Posts : 13
   Posted 3/22/2011 1:25 PM (GMT -6)   
hi tigergirl

i know where your coming from im 41 and just had ileo done ...6 weeks ago ,hang on in there ,8 weeks aint that long i know its nerve racking but it will come good in the end ,

and its good to let it all out ,i cryed lots to start with but im a happy bunnie now

good luck with everything

take care
puddney

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/22/2011 1:42 PM (GMT -6)   
Trigirl10,

Take heart. The output slows over time. Use Convatec with the velcro closures. Those clip deals are nasty and uncomfortable.

Your surgeon has your best interest at heart; he did the right thing in giving you the ileo.

Mine is permanent due to an irreversible colon and rectal injury sustained during a surgery. Had to look for 13 months for someone to do the ileo. I have been on many vacations since and took up ballroom dancing. You should be fine. I realize it does not seem it at the time, but know this is survivable.

All my best, Rosemary

Tigergirl10
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 3/22/2011 5:12 PM (GMT -6)   
yes, he warned me about the possibility of the illeo before going into surgery.  but he said it was extremly slim.  guess I got the short end of the stick.  I am already connected. but a 2 hour surgery turned into 4.  it was very difficult to hook my large intestine back up to the rectum.  it took over 50 stitches.  only reason for the illeo was to let me heal and so there wouldn't be an infection from waste passing through it.  I called the bridal shop and there are giving me an extension til June.  by then bag should def be gone unless I get even more bad luck!  my heart is just not into trying on dresses right now.  I don't feel beautiful or sexy with this bag.  I dealt with the colostomy for 6 months, I should be able to deal with an illeo right?  it isn't that much different, right?  yes and no. I actually get more grossed out sometimes with the illeostomy because the output is constant.  it is like a volcano erupting tons of greenish/brown slime all the time.  and I get grossed out everytime I have to empty and clean the tail.  to the point of gagging and find the smell is more.  waiting for my prescription to come in at the drug store so I won't have to wear these clear bags any longer.  ordered the flesh covered ones.  maybe I wouldn't be so grossed out if I didn't have to see the contents all the time. and I do wear the closed in velcro ones.  in the hospital when I went to empty, the velcro part came off.  luckily my mom was with me.  I had to sit on toilet until a nurse came to get my new bag to do a complete bag change. and the output was going crazy at the time.  I was in tears. also can't stand the loud farting noises it makes constantly.  it is humilating.  so I avoid social situations and don't like being around people.  I feel I have to keep my hand on my side the whole entire time. 

Post Edited (Tigergirl10) : 3/22/2011 4:16:59 PM (GMT-6)


blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/22/2011 6:58 PM (GMT -6)   
I just got my ileo three weeks ago and some of the things that are bothering you have subsided -- it makes less noise now, the poop isn't green and slimy any more, and the output is thicker.

Definitely get the M9 drops, they really help with the smell -- that was what was grossing me out the most at first. The coloplast bags are a lot easier to clean than the others I've tried so far.

And having the opaque bags helps a lot.

My situation was different because I was really sick w/Crohn's colitis and was glad to get the ileo so I could have a good shot at better health, whereas you were not expecting this. Give yourself some space to grieve and rage that you got the short end of the stick..... then hopefully it'll burn itself out and you can deal with what you have to deal with....

For what it's worth, I think the noises are funny, and I can't wait to show my nephews, because they're elementary school aged boys who will think it's very cool that I can fart from my belly. It's a health issue, not a social faux pax, and besides others probably can't hear it like you can. In your thirties, you're old enough that if others in your life can't accept you with a health issue then that's a red flag about their maturity.....

And who feels beautiful and wants to try on fancy clothes a week after major surgery? Give yourself some time to heal -- physically and emotionally. You don't have to be beautiful this moment..... just recover from the surgery first.

Hang in.

Tigergirl10
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 3/27/2011 9:28 AM (GMT -6)   
Been having tons of nausea since I got home from hospital. Making it hard for me to eat or drink. Tried every nausea meds and they are not working. Ended up in er back on Ivs for dehydration.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/27/2011 9:40 AM (GMT -6)   
So very sorry you are having such a tough time of it...is the nausea because you are already dehydrated. I guess once you get dehydrated it's next to impossible to "catch up" on your own. I truly hope things turn around really fast for you as this is so upsetting to deal with.

Hugs and prayers still going out to you from me!
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.
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