Does anyone have a leg bag for their ileostomy?

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lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 10/24/2009 4:44 PM (GMT -6)   
I had an ileostomy surgery on May 28, but my bowels never woke up.  On June 12, I had emergency surgery and the doc closed up my ileostomy and gave me a tube leading to a leg bag that is velcroed to by leg.  I have limited foods that I can eat, because the tubing isn't very big around and I get obstructions in it easily.  My husband helps me flush it out with a syringe.
 
I have an appointment to see my doc on Monday afternoon.  My husband and I are hoping that I'll be ready to have surgery again and this time end up with a traditional ileostomy bag.  Right now, I wear mostly longer dresses or loose pants, because it otherwise pulls on my tubing.
 
My question is, have any of you gone thru this, like me?
 
Butterfly

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/24/2009 5:56 PM (GMT -6)   
Im sorry i have not, but i really hope you get things fixed!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 10/24/2009 9:07 PM (GMT -6)   

I have never heard of this arrangement for an ostomy.  Typically this style of bag is more for urostomys.  I'd be curious to know why your surgeon set you up this way, do you have any other conditions that made the typical ostomy impossible?  If that's not the case I would seek a 2nd opinion from another CR surgeon.

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


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 10/26/2009 6:16 PM (GMT -6)   
I saw my surgeon today and he said that I probably wouldn't find anyone on the internet like me.  He originally tried the traditional ostomy, but it wouldn't work and I had to go to surgery again.  Everyhing was so inflamed when he went back in me, he couldn't tell what was what and I tore and had fistulas; hence the drainage tubes afterwards.
 
It's been over 4 months, but he's unsure if I've healed enough to complete my last surgery, to a traditional ileostomy.  He's going to be in contact with Cleveland Clinic in Weston this week and see what they have to say.  My nerves are shot and I'm scared of whatever the answer is.

Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 10/27/2009 7:52 AM (GMT -6)   
Lori,
 
Just want you to know I've thought of you often, and hope this is just a temporary glitch.  Will you have your next surgery at CC or will your doctor just consult?  Good luck, please let us know what happens.  I can only imagine how nervous you are about being able to have another surgery to correct this.  I hope and pray you get good news.
Hugs,
Janie

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 10/27/2009 1:44 PM (GMT -6)   
Janie, thank you for thinking about me. I have thought about you often too, and everybody having to go thru so much. I'm not sure yet if my next surgery will be here at home or at Cleveland Clinic. My surgeon here at home is getting a consult this week, but I may or may not have to travel to Cleveland Clinic. I am willing to go anywhere that will help. My surgeon sounded like it is very difficult to tell how long it takes for me to recover inside before another surgery. He just doesn't want to say, it's been 3 months, let's go into surgery again. He says that an mri, ct scan, petscan, or dye won't be able to tell him anything revelant. So, since I had my colectomy at Cleveland Clinic, I think that he'll probably be speaking with Drs. Wexner and/or Weiss. Until I hear something, I just need to hang on. It's been a long and scary ride.

butterfly

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/27/2009 1:55 PM (GMT -6)   
I'm sure it has been long and scary. I remember when we spoke you were doing so well. Was it your small intestine or rectum that caused the problems? They came on very suddenly, didn't they?

I'm still with my surgeon in Orlando, but depending on my appt. on Thursday, may be going to CC myself. I called and they told me they would set me up with Dr. Weiss. Did you meet him, and if so, what did you think of him?

Please let me know what you find out. I know it must be terrible to have the leg bag, but you don't want to rush things just to have to start over, you know? If they say to wait a little longer, just know it's most likely the safest thing to do. I'll keep you in my prayers:)

Janie

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 10/27/2009 2:16 PM (GMT -6)   
My small intestine and rectum was working by the tests that they did prior to surgery. I had a sigmoidoscopy at Cleveland Clinic and they determined it was constipation. Since laxatives weren't working, again, they told me that an ileostomy would be best. I decided to have my ileostomy done at home, since it was a more commonly done procedure than the colectomy.

I haven't met Dr. Weiss. I've just heard of him. I've met Dr. Seo, Dr. Wexner, and Dr. Nogueras. I liked Dr. Wexner, then Dr. Seo best. They're very good and I'd trust both.

You're right. My leg bag has been terrible. It's difficult living in Florida and not being able to wear shorts. The worst is that I get obstructions at least weekly. My surgeon says that I'm doing fine and to keep using my syringe and water to clear my tubing. I have limited foods that I can eat, because the tubing is so small.

How are you doing and what is your appointment on Thursday for?

butterfly

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/28/2009 2:21 PM (GMT -6)   
Lori,
I had surgery in March for CI. I went about 20 x a day for the first 2 months, then month 3 I started taking metamucil at night, and started going about 5-6 times a day, but quite a bit and it was formed. Life was great. Then around the middle of June things just started slowing down. the metamucil made things worse, and all of a sudden I started getting this horrible pressure in my rectum (and often pain) within 2 hours of eating. I went from going 6 X a day really well, to hardly going at all, even though I would go and sit and tiny drops would come out about 20 x a day. It's gotten to the point that I drink prune juice at night to clean me out, and then if I'm working, I don't at again until I get home from work the next day. Just the last few days the prune juice isn't working like it did.

My surgeon ordered another sitz marker test and defocogram for me and I get the results tomorrow. I'm expecting to hear I need an ileostomy and if I don't, I'll b pleasantly surprised. I just can hardly stand this pain and pressure in the rectum, though!

Janie
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