Mary Beth, sounds like lily is having a tough time.  The sleep really concerns me.  When Jeff first had his take down, he was doing the same thing.  He was up all night.  It always seemed worse at night.  I wonder why.  I would not give the Valium.  If she takes that, she might have accidents In her sleep because she was not able to get up.  And that would be worse for her.

 Jeff was up all night last night throwing up I heard.  Apparently he ate too much breaded chicken.  And more than likely he spiced it up.  I left for Washington D C yestear day afternoon, so I have no idea what he did.  He was cooking!  But he was saying his belly was hurting today as well.  I think a lot of it is the withdrawl.  He is having a really difficult time with that, poor kid.

regarding Lilly, what does her doctor say? Mare you in the U.S.?  Maybe take to gastro rather than the surgeon.  When Jeff was having all that pain in the fall, and we were not getting any answers from the surgeon, that's what we did, went back to gastro.  And that's where we got our answers, as bad as they were.  But give that a shot.  It might help.  Good luck.  Keep me posted on her progress.

dianne

Sorry Jeff is having a rough time. I know what you mean, it´s hard when we´re not with them making sure they´re eating what they´re suppose to but we cant be there always, they gotta learn the hard way I guess.  I´m thinking food is PART of Lilys problem, she thinks she can eat whatever she wants. She went to Applebees with friends after school yesterday and didn´t see the problem in eating nachos!  Of course it was a rough night. She promised to go back to a bland diet but she complains about everything I make cuz its too bland!

We live in Michigan. We don´t have an appt with GI til June but I´ll see if I can move it up. To be honest, I don´t feel very confident in him, he´s really young. The GI I liked no longer sees patients, he is doing research now so he sent us to this young guy.  I´m actually thinking of making an appt at Cleveland. I´ve heard of Shen, Remzi there but thats it. Do you have an idea what dr there would be best for Lilys issue of frequency?  I´m afraid she´s getting malnurished as well but going to her normal dr today (a functional med dr) for a vitamin IV which I think helps.

Thanks and good luck you guys. 

My surgeon has the attitude that no food should be off limits.  Just be prepared for the results!  So, that's what I've been doing for over ten years.  I eat and drink whatever I want.  If I "suffer" the results of eating or drinking something my new plumbing finds disturbing, I use a lot of Calmoseptine to help deal with butt burn and eat gently for a day until the culprit food is out of me.  It doesn't take long.  I can understand kids or younger adults having a problem limiting their diet to only eating pouch friendly foods.  Sometimes it is just worth "going for it" no matter what!

I like that attitude CEM and a good way to look at it!  It doesn´t seem like a big deal if you know you´ll be home or if you´re prepared for what comes with eating food that doesn´t agree with you, I don´t think it´s realistic to avoid all problem foods, sometimes you gotta induldge!  Really, same applys to us who still have their colons!  I hope my daughter gets to the point where she only once in a while has high frequency from induldging but at this point we are trying to figure out what works and what doesnt. It´s not like she just occasionally has issues, it´s a daily, 24 hour thing and it´s really taking a toll on her. I hope and pray things slow down for her so she can get back to her life. Thanks, it´s nice to hear from someone who has a good attitude in a difficult situation!

Mary Beth, I sent you a private note.  Check dialogs, top right corner.

dianne

Is your daughter taking fiber? My son takes 100% acacia clear fiber made by renew. I put it in capsules for him since he doesn't like to drink it. He takes 5 capsules 3 times a day.That solidifies his stool so less loose - and thus I think less trips to the bathroom. He also does have a pretty strict diet and the reason he stays on it ( he is 14 yrs boy - not easy) is because it works well for him. Maybe try a restricted diet for a few weeks and she could see some impact. 

Hi (boys mom).  Thank you I will give that a try!  I had bought acacia fiber in powder form but someone told me it was a lot harsher than phyillum so I was scared to try it. I´ll go get the liquid form and give it a shot!  Yes its very difficult keeping them on a restricted diet. She is out with friends quite a bit so who knows what she eats and doesnt tell me. But I think she is finallly realizing the importance. I cant expect she wont cheat here and there, not realistic for anyone!  But hopefully for the most part she will stay on track.  The problem is everyone reacts differently so its trial and error.  Its really frustrating and so sad to see our babies struggle!  Thanks for the reply.

I just re-read your first post and see your daughter is only 6 weeks post take down. There is a huge adjustment period - I think for some people a year...But I wanted to clarify acacia comes in powder form. It can be mixed with water to drink it. My son won't. That is why I put it in (size 00) capsules.

Thank you, I have the powder (different brand) and will give it try!  Yes shes only 6 weeks out but it seems like forever. Im thankful I have this site for info, advice and support but I have to admit, it can be discouraging because most people who post are having problems. The surgeons and GI made it sound like no big deal having your colon out, its only to absorb water. Fact is it´s a major deal and I wonder if my baby will have a normal life. I know I need to have patience but it is so hard, she´s just not the same energetic goofy girl she was a few months ago and its heart breaking.  I know deep down she will get there and something good will come from this nightmare. Shes a fighter and has a lot of faith.  How is your son doing, well hope. Hes so young too. Thank you for your reply, I´ll let you know how it works. That is if she ever comes home!  I guess its a good thing shes gone so much being with her friends after missing out on so much but I worry constantly. Take care!