my daughter had the 1 step j pouch almost one month ago. about 6 days after surgery we were sent home, only to reurn to the hospital later that day, when they had to insert an ng tube (this was horrible for her - she cried for 3 days while it was in) Anyway, we were sent home again...that was 3 weeks ago. Now, she's started with pain and fever. Her surgeon called in a prescription for Flagyl, saying it could be pouchitis, but he said it's unusual so soon after surgery. I'm terrified that she'll have to have that ng tube again!! She is eating, drinking and stooling (a lot) so I don't think it's an obstruction. She's also tapering down on her prednisone, going down 5 mg every 5 days, currently on 25. Any thoughts, please, I'm so worried. How long for the Flagyl to work?

If it is pouchitis the flagyl should start work pretty quickly. When I have taken I have felt MUCH better after only a day (3 pills). If things don't get better I would take her in to ensure there isn't a small leak in the pouch.

Hope she is feeling better soon.

I wonder if it could be the prednisone taper. When did she start the Flagyl? I think that if she does have pouchitis, it should kick in pretty rapidly. Is there any possibility that she picked up a bug somewhere? Another possibility is that she might have an abscess. Where is her pain located? Is it all over pain or specific?

I wouldn't think that she'd have to have the NG tube if she's eating, drinking and producing stool. I would think they'd inserted before because she'd stopped producing stool.

She may be miserable right now. But it should get better as the days pass. I'm sure she's wondering why she ever had the damn surgery....

If you feel that something is really wrong, then take her to the doctor.

I hope things turn around for your daughter soon. It's torture to watch your child suffer. Welcome to the site (even though I wish you didn't have to be here).

kathy

Welcome to the site. There is a wealth of informatiom on this site that will be very helpful to your daughter's recovery and health.
How old is your daughter? Where did she have her surgery? How long was she suffering with UC?
Her fever most likely represents an infection. Where is the pain? She could be brewing an abscess. I had one a month after my 2nd step that crippled me with pain on my tailbone. The doctor had to drain it to relieve the pain.

Was she in the hospital with the NG tube for an obstruction? I know that obstructions are extemely painful. I had several over 14 years. All have been from bulky foods I ate. I have never had an NG tube, though. It sounds like it is also very painful. Your daughter should be on a low residue/low fiber diet, if she had an obstruction. Everything should be smooth. Her body is still healing. Small frequent meals are best. Keep things more liquid and low acidic. Lots of water and electrolytes, like Gatorade's new G2 with less sugar. Slim Fast is better than Ensure.

Look thru this site for any questions you might have. Click on the "Find" tab and search for anything, just uncheck the "Search current forum only" box.

http://www.j-pouch.org/diet.html#anchor1925465

This message has been edited. Last edited by: BarbieG,

My daughter is 14 and has HAD it. She first got uc in Feb. 07. Lots of steroids, remicade worked for about 6 months, then she developed the antibodies. Tried Humira, nothing. Her pain is below her navel. Started Flagyl yesterday (Tues. 3/4) You guys are so nice...I feel like I have people to talk to who understand...it's so horrible to feel so helpless.

I feel so bad for your very young daughter. It sounds like she has been thru a lifetime of illness in one year!

I would bet she has pouchitis. The Flagyl should start working soon. Some doctors put patients on 2 anti-biotics at once, if they don't respond to a single one. Levaquin always works for me with no side effects.

There is always someone here to answer your questions or just talk, too. I wish I had this site 14 years ago when I had my surgeries.

Oh, I forgot...she had her surgery at Children's Hospital of Philadelphia.

Sounds like you did your homework and found the best hospital for her. You are a good mom. I'm sure she appreciates you even if she doesn't say it.

Probably not an abscess with the location of her pain (usually deep in the pelvis/tailbone area). However, they still can occur pretty much anywhere. The prednisone, with or without the taper, can make her more prone to infection.

I am not sure that this far out that she needs to be on a very restricted diet. I know that with my 1-step, I was told to take Metamucil three times a day, to help add form to the stool and absorb the bile acids. Most of the healing from the resection of the intestines take place in a matter of a few days in most people, more prolonged in those on steroids. Mainly, she should eat what appeals to her and what agrees with her. If her diet is too restricted, it can just add to depression and malnutrition through disinterest. But, supplementing with drinks such as Ensure can be a good idea.

Based on the location of her pain, something to consider is a stricture at the pouch inlet. This could create trapped gas or back pressure, but it shouldn't cause fever. A fever this far out is troubling. If it is a very low grade fever, it could just be from dehydration, so make sure she is urinating several times a day.

Jan

Thanks to all who responded. It's so wonderful to be able to tap into your collective knowledge and support. I'm taking my daughter to see the surgeon Friday (for a scheduled follow-up) so we'll see...thanks again for your help!!!

I truly feel so sad inside when it involves a child who isn`t well and is suffering.I will say a prayer for your beautiful girl that God protects her and keeps her well and that He take all her pain away.If I could I would switch places with her in an instant so that she doesn`t have to go through this.We as adults I feel can handle this nightmarish disease but I get so angry inside when it happens to a child.They are all innocent souls and do not deserve to suffer like this.I can go on and on but I`ll just leave it at this.I pray she gets well very very soon and starts to enjoy her life like any child should.Take care and give your daughter a big hug for me!

Turns out it was an abcess! We came back to the Children's Hosp. of Phila yesterday, they did a ct scan and found it...had it drained today (Fri) so hopefully the two weeks of iv antibiotics will do the trick. They put a piccline in when they drained it...took something like 6 ounces of pus out. Now she has a drain that really hurts her leg and makes it hard to walk. Please pray for her recovery, she's been thru so much.

That's actually good news! An abscess - at least they found the source of her problems. Hopefully this just completely turns everything around. Thanks for the update.

kathy