Reversals for Crohns and fistuals??

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praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/17/2009 10:27 AM (GMT -6)   
Hey all,
 
i know its been a long time since iv written, but i check in often. just finally working with my career( teaching) and the long hours and everything has kept me extremely busy.  N e way, the bag hasn't given me many problems and i havent been to my surgeon or my g.i. since september. but i have some questions.
 
While the bag hasnt given me any really serious problems, being only 26 and unmarried, it is really starting to effect me emotionally. in most cases im fine, but i always seem to sabotage any type of relationships that are possible b/c i am just too insecure, physically and emotionally.
 
So i'm wondering, how may of u had ur bags due to crohns and fistuals? and have had it reversed? is the recovery worse? is the chance of getting really sick again really high? will i loose my quality of life again i think im ready to get rid of it? and since i have summers off, i was considering asking for it.
 
Also, if i got it reversed and couldnt handle it, would i still be able to get another temporary one?
 
N e experiences would be greatly appreciated. thanx guys for all ur support. i hope everyone is doing well!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Juls1981
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 1/20/2009 1:14 PM (GMT -6)   
Hello,

How long have you had the ileo for? How much of your intestines were removed - did they tell you you'd be able to reverse it? I have had crohns since 2000 - and have my ileo from March08 until Nov08. So I've been ileo free for about 2 months now. I didn't have mine due to fistulas (although I did have fistulas for a couple years at the very beginning). Mine was due to a blockage that was so bad it actually ruptured and I had to have emergency surgery. Woke up with the ostomy. not cool. Anyways - the ostomy never gave me any major problems either. just a nussance of course - but nothing more than that. I always knew I'd get the reversal though - since I still had enough of my colon left. I would have regretted not at least trying it - even if it didn't work and I had to get the ostomy back again. I'm 27 so I understand where you're coming from. I am married - but it still effected me emotionally....was hard to feel beautiful and confident with it, and that was hard. I am doing pretty good post op - and can actually eat some things I couldn't eat while I had the ileo (and even some things I couldn't eat before the ileo due to my narrow intestine!). I can't say if it's the right thing for you or not - you'd have to discuss with your surgeon. I know I am VERY happy I decided to go ahead with the surgery...but everyone's different. Let me know if you want more info on my recovery, etc....I'd be happy to share whatever I can.

Julie

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/20/2009 5:48 PM (GMT -6)   

P4H--nice to hear from you...well, I don't really want to give you my story because we are all different!  Needless to say, yes, you can give it a try and if it doesn't work for you, you can have another stoma.  I did!! 

The only thing I can say about the dating thing is this...the "right one" wouldn't be bothered by any thing you could tell them about yourself.  They'd be happy that you are healthy and living the life you want...you are the same person you were before surgery, just healthy!

Glad to hear teaching is going well!

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/25/2009 3:21 PM (GMT -6)   

thanks jules and ohio

 

jules, itll b a year on the 29th, i havent had n e intestines removed at all. i do have a stricture like right b4 my anus or right at the end of my intestines somewhere. the fistulas havent healed up which was the purpose for my ileo, they thought id give my bowels a rest and hopefully heal the fistulas. thank you for sharing and i would like to hear more about ur recovery. i know the best bet is to talk to my surgeon, but i just dont want to go in nad have him dissappoint me.

ohio, u mentioned it didnt work out and u got another stoma...did it have to be permanent? was it the same? ileo or did u have to get a colostomy the second time around? did u have options when it came time for the second surgery?


25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/25/2009 6:25 PM (GMT -6)   

ohio, u mentioned it didnt work out and u got another stoma...did it have to be permanent? was it the same? ileo or did u have to get a colostomy the second time around? did u have options when it came time for the second surgery?

It wasn't permanent at that time.  My surgeon did another Loop Ileo and luckily he could use the same spot so I didn't have another scar...He wouldn't do a permanent one at that time.  One of the reasons I love him so much is he is really conservative. 

Because my diagnosis is Crohn's a J-pouch was never an option.  We also tried the "flap" (I forget the technical term!) surgery once but my body was just too diseased.  I'm not sure if that is possible with a r/v fistula...

With the second Ileo, I was able to get the drainage under control for a short period of time.  The combination of Cipro and Imuran helped that, but for me, it didn't last more than a year. 

I also had three setons which had been there for years.  They'd been removed once, while I was on Remicade, and they started to close nicely, but that too failed:(  Just last year I went for a proctocolectomy and it's been a year and it is better than I could imagine. 

I hope you get the answers you need to make your decision.  It is a really tough personal one...always remember you're the one that has to be happy/comfortable with the outcome and sometimes that takes time.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/28/2009 8:18 PM (GMT -6)   
ohio...u sound like me lol
i can't take imuran b/c they found a spot on my liver or something
my bottom is really diseased too, i have 4 or 5 setons now, i lost count
(btw the strings are soo long, is this normal? were urs really long?)

remicad stopped working for me years ago after i ended up with a staph infection and was hospitalized for a couple of weeks


so am if i understand ur story correctly...u had to temp's and now u have a permanent? and u got ur entire colon removed? thanks for the answers, let me know if im being too invasive
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/28/2009 10:09 PM (GMT -6)   
Praying,
I had Crohn's in the colon and rectum with r-v fistulas and seton drains and was told that because of the disease in the rectum, I was not a candidate for a j-pouch or a reversal after getting a temp ileostomy, like you have. I had my colon and rectum removed and have been very happy with the results. No more disease, fistulas, setons, abscesses, pain, etc.  :-)
 
I don't mind having a permanent ostomy, because I'm healthy now and would never trade it to go back to the way things were before surgery. I know you're concerned about body image, so was I, but you have to do what is best for your health. The pouch is always covered by clothing and can be covered by sexy lingerie during intimate times, too. smilewinkgrin


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 1/29/2009 6:45 AM (GMT -6)   
Ask all the questions you want!!!

Yes, colon and rectum were removed 2/8/08!!! Almost a year now:) Its permanent now and I wouldn't change anything. The recovery isn't the easiest, but well worth it, and I am a little older than you (im 40) so that didn't help! I actually love being with my husband now...in that way...NO PAIN!!

the ends of my setons were tied down so they didn't go all over the place...but they were short. My surgeon was very-for lack of a better word-anal, and did a few little things that made living with all the apparatuses (is that a word?!) of this disease bearable.
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