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Need post surgery advice. Help!

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Posted 11/19/2009 6:45 PM (GMT 0)
Hi all,

I am new here, and need advice. My 12 year old daughter was diagnosed Nov 08 with Ulcerative Colitis. Biopsy and clinical picture of colonoscopy showed results typical of U.C. A second colonoscopy showed some evidence of cobblestoning and the G.I's then spoke of Indeterminate Colitis.After much blood loss (8 transfusions of blood in two months)and many meds that failed (even Remicade) a Colectomy was performed July 09. Biopsy on large intestine post surgery showed results consistent with U.C. Straight  Ileoanal Anastomosis performed 4th Nov. 09. My questions are: Is blood with stool normal (not like before though) after this surgery,how can we decrease the number of bowel movements (are 12 in the day, none  at night, 2 weeks post op) normal? When does the anal bleeding stop? Could the diagnosis change to Crohn's? How can she gain weight? Foods to avoid? Any help would be appreciated. Thanks :-)

Posted 11/19/2009 8:46 PM (GMT 0)
Hi UC mom. I had the two step surgery with the second surgery on the 2 of Nov. so I am almost 3 weeks post op. I too have intermittent bleeding which my surgeon said is normal given the fact that the pouch is still healing, expanding and getting used to it's new function.
I was able to decrease bowel movements with Immodium (going 10 + times/ day also). I take one at lunch and the other at night before I go to sleep. Now I am down to about 6 and I was told by my surgeon that this too will decrease once the pouch has a chance to stretch and adapt.
As for food to gain weight with and or to avoid, everyone is different I was told by my surgeon that I should be able to enjoy a lot of foods that I was not able to enjoy before. So far I have found this to be untrue. I still avoid food that are heavy in seeds, nuts, or excessive roughage because they do cause some irritation. Trial and error.
Even though I have shared with you what works best for me, please talk to your daughter's surgeon to get his thoughts and recommendations.
Best of luck to your daughter.
Posted 11/25/2009 1:58 PM (GMT 0)
Thankyou Jinglebell for your reply. I hope all goes well with you too. On Friday my daughter will be scoped to rule out the possibility for any strictures,as the surgeons were concerned that she brings out small amounts each time and feels a constant need to defecate.
Thanks again, and all the best
Posted 11/26/2009 1:48 PM (GMT 0)

Yes, she is normal for where she is at post surgery.  Expect improvements in 6 week increments for the first year.  Food will be trial and error but at 6 months I was eating everything and today I enjoy all foods and have no limitations.  A bit of bleeding is normal on an ocassional basis but if it's daily she should be checked.  You might want to add some bulking fibers to her diet; I think you must be in the UK so I am not sure if Metamucil is available there but it is a popular fiber in the US.  A stricture is a common complication but easily repaired.

Sue

Posted 11/26/2009 5:28 PM (GMT 0)
Suebear I can't thank you enough for your replies! Yesterday my daughter had an anal examination which wasn't pleasant, but showed that her antomosis had no stricture. They wanted to scope her tomorrow to look higher up, but her bm's were much better today, and she had a much better night, so the surgeon said to wait. We also stopped a liquid food supplement she was on for the u.c as it seemed to cause diarrhea, and she is better. I will look for the metamucil. I am an Aussie of Greek descent who recently moved to Greece, and yes I have actually seen Metamucil somewhere here... wish I could find some good aussie Vegemite (Promite or Marmite would do!). I noticed that you are med free. The number of meds my daughter was on concerned me, and it is one of the many things I see that make surgery worthwhile. She is basically med free aside from the enema's. Thanks again for your inspiring posts yeah   
Posted 11/26/2009 6:37 PM (GMT 0)
Hah! You could probably order vegemite or marmite online!!!

If you find the metamucil many prefer the wafers over the powder. If you can't find them email me and I will mail you a box of them. Your daughter will return to full health and activities. I'm a long distance 100-200 mile hiker and have no problems engaging in physical activity. Just be patient with the recovery process.

Sue
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