Inconsistant illiostomy output

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7gunner7
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 6/17/2009 6:42 PM (GMT -6)   
Hi, Thanks for reading my post, and any advice you can give. I had ulcerative colitis for 30 years. This past January precancer cells were found during my annual colonoscopy. Had my whole colon and rectum remover April 17th. The plan is/was for a reversal to a 'J' pouch in three months from surgery. Was out in 4 days, but the day after I got home I came down with a massive infection in my abdomen and was back in the hospital for 2 more weeks. Got out and shortly thereafter developed an absess at the 'J' pouch site. I've had a drain from that area for 3 weeks but it's clearing up now.
I'm on 2 different antibiotics, take 6-8 lomotil each day to try and slow things down. I'm taking Oxycodone for pain as needed. I take Citricel before each main meal to try and glue food together. I lost 23 pounds during my stay in the hospital, and over the past few weeks have lost another 10.  I'm really getting desperate, I cannot figure out how to slow down the food and get nourishment. I'm tired and lacking energy almost all the time. My surgeon had predicted about 4-6 weeks and my small intestine would change over and start absorbing water. I'm at 8 weeks and it seems nothing is changing. Last week I went like 5 days and every output was pastey and thick like is hoped for. Then all of a sudden I get these days when water is just running through me. I've read some of the responses about eating bananas, peanut butter, marshmellows, pasta. I'm trying liquid suppliments like ensure but they seem to run right through too. I read where someone had found some menu's on a web site for people like us. Can anybody make some suggestions.
 
7gunner7

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/17/2009 7:39 PM (GMT -6)   
Welcome to Healing Well! I'm glad you found us.
 
I'm going through something similar right now. I have a temporary ileostomy that is high up in my small intestine, so the output is watery, and I've lost 30 pounds since my surgery 8 weeks ago.
 
Ensure flies right through me, too. It acts like a laxative, so I stopped drinking it. So does caffeinated coffee, tea, and soda. It's best to drink water. I like Smart Water, since it has electrolytes.
 
Antibiotics are notorious for causing diarrhea, so you'll probably notice an improvement soon after you stop taking them.
 
Potatoes (baked, mashed, or soup) help thicken the output, and so do bread, oatmeal, and rice. Baked chicken is good, too. Try to stay away from fatty and sugary foods. 
 
Lomotil never seemed to work for me, so I just take a couple of over the counter Imodium 20 minutes before eating.
 
Liquid vitamins and sublingual B12 vitamins absorb quickly and might help give you an energy boost. It has taken me longer to get my energy back with the fluid loss and weight loss after this surgery.
 
You had a big surgery, and your energy will return. Your output will thicken, too. It all just takes time.
 
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2009 8:53 PM (GMT -6)   
i second what cece said about the vitamins, chewables are good also.
And the antibiotics are probably part of the problem, try addng some probiotics
hope you get this under control!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 6/17/2009 9:16 PM (GMT -6)   
Welcome to HW.com!!! I think you have found a good site to give you suggestions from people who are or have experienced what you are going thru right now.

I have a fairly quick output and have for 25 years. Flchurchlady gave you really great recommendations.

If the lomotil doesn't work at all, I would talk with your dr. about try Imodium. You can get your dr to write a RX for it as it does come in RX form as well (esp. if that is cheaper for you than OTC). It also can be found as an OTC drug.

I know that you have to "push" fluids so that you don't get dehydrated but be very careful what sweeteners they have in them - even if they are diet drinks. Also you may want to decrease the amount of fluid intake just Before and During your meals. That will decrease my output naturally w/o taking the Imodium. I do however take 3 imodium with breakfast and sometimes 3 w/ lunch, supper. It depends on what I am eating.

High fat content foods and pastries/sweets go right thru me. Esp. Ensure, Boost and the like. Even most ice cream. Does that mean that I totally quit eating them? NO!!!! I just choose when to eat them, but my output is pretty much under control. Yours will get there. Try to keep a food journal for a little while and test different combinations. I bet that you will find what helps and what doesn't.

Let us know how you do. By posting your experience, you may help someone else.

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


7gunner7
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 6/18/2009 11:54 AM (GMT -6)   
Thank you flchurchlady, summerstorm,and peggy113. I'm very grateful. I'm going to try some of the things suggested and I'll get back to you. I'll have to check with my gastroenterologist about the lomotil. I have some liver issues to deal with too. Thank you all again, it's a blessing to have someone else who understands. The encouragement is a gift from God.

Thanks,

7gunner7
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