tbraz..or others with loop ileos....

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sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 2/11/2008 11:57 AM (GMT -6)   
Hi there!
 
I just got the go-ahead from my GI to meet with my surgeon about moving on to the next step for a j-pouch. Most liekly this will be the forming of the pouch and the loop ileo. Right now I have an end ileo. Can anyone help me know what to expect with this second surgery? What is the healing like? Is it like the colectomy? Worse? Better? I have heard many horror stories about the loop ileostomy. What are the challenges I should prepare for?
 
Thanks for any info and /or advice!
 
Joann
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/11/2008 2:40 PM (GMT -6)   
Joann,
I will not lie to you, the second surgery was more painful for me than the first, but maybe it was just me. It seemed to hurt more at the surgical site (maybe because they are cutting open the muscles that were trying to heal). I didn't have an epidural and that might have helped. That said I still got up and walked the second day and didn't have the gas pains that I had after the first surgery. With the loop, I was told that I should eat something like crackers or pretzels everytime I drink because there is a greater risk of getting dehydrated. They kept me 2 days longer in the hospital because they wanted to make sure that the output is not all watery. I argued with them because they had just started me on solids and I wasn't taking anything to slow things down. The key is to get the stool thicker and it's a challenge because the stoma is now from the upper part of the intestines and food comes out faster. I now eat a banana and take 2 Imodium first thing in the morning and that really seems to work, we can take up to 8 a day and I probably average about 4 or 5. Rice, applesauce, pretzels, and pastas are all known to thicken as well. Dehydration worried me a lot when I first got home, so trying to manage the drinking and eating was so important to me.

It's also harder when it comes time to change my appliance, for the first 2 weeks they have a plastic tube stitched to it so it won't retract underneath your skin (the loop is also more flush with your skin). It's hard to cut your appliance because you have to try and get it over the tube and my first stoma was perfectly round and this one is shaped more like a mushroom. They usually remove the tube it at your 2 week check-up and it doesn't hurt as bad as the staples did. A trick I learned before changing my appliance is to eat a couple small marshmallows and it seems to stop the output long enough for me to take off the old wafer, jump in the shower and put on my new one. I also have to change the appliance after 3 days, whereas I could go 5-6 days before, and I had my first leak at night when I tried to go longer.

I still have the mucous discharge and at times, it soaked me at night as I had no feeling that it was coming. I am starting to feel fullness down there and am working on expelling in on the toilet, but wear a pad to bed and keep a thick folded up sheet on my bed in case of an accident.

I am 4 weeks out from the surgery and I have had to cut my hair because of the hair loss from this surgery and the first, but that doesn't seem to happen to everyone. So needless to say I have been kind of depressed about it all. Yet, all and all, I am still glad that I had the surgery and am hoping that they can do the takedown in April, and I also know there are more challenges that will come with that as well. If you have any other questions, feel free to ask. Let us know when your next surgery is scheduled. Hopefully I can help you since I'm a step ahead.

Theresa
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/11/2008 5:41 PM (GMT -6)   

JoAnn,

I don't have a Loop Ileo, but I have had several feet of my small intestine removed due to CD (as well as all of the large and the rectum).  So I can speak a bit about the dehydration issues.  Sorry I can't help a lot with the other questions tho.  

I have taken up to 9 immodium a day - 3 with each main meal.  BUT I am now down to only 3 a day - first thing in the morning.  That seems to be my busiest time!  Anyway, here are some of the alterations I have made to my diet in the last couple of years that has seemed to really help slow my output. 

First off, I don't drink caffeine.  No regular coffee, but I do drink a large, homemade decaf latte in the mornings, along with a fuit grain bar and a banana.

I no longer drink carbonated sodas...  I switched to Cranberry/Black Cherry Juice or Cranberry/Peach juice cut with 2/3 water and 1/3 juice.  I mixe them in my water bottles.  That means I get about 8 water bottles per gallon of juice.  I still get some of the sugar, but none of the carbonation.  I got tired of gatorade and this is working for me for now.

I also have really tightened up on the amount of spicy foods and fried foods I eat. 

I tend to eat lots of rice and baked potatoes.  Also applesauce works well.  I don't totally concentrate on what my diet is, but it is a way of life.  I can eat about anything, except some of the more fibery foods.  I'm more fearful of blockages than anything - I've had several partial blockages in my past.

I hope this addresses some of the output issues.  Oh yea, they say increasing your sodium, ie pretzels, crackers, etc, will also help the dehydration issues.  I tend to automatically eat more salty stuff anyway.

Good luck JoAnn.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


JWC
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/13/2008 1:40 AM (GMT -6)   
All,

I am looking for answers as well, however, I am in a position to advise on some steps of your procedures. I am home now after the final surgery last week to take-down. I went 4 months with the stoma and leaned a great deal quickly! When they say do not eat sesame seeds - Heed that warning!

Please ask whatever you want about prep for the take-down, the surgery itself, post...
Do you all know anyone who is at least 1 week out from the take-down surgery? I am feeling extremely strong uncontrollable urges to go (bm). The incontinence was expected (I wear Depends), but the painful 10-20 second urges to go are scary. I'm going to contact my doc, but it anyone knows if this is normal for the time-being - then I may be able to better mentally prepare.

Thank you!
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