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07-17-2013, 09:10 PM   #1
QueenGothel
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Rowan's Pouchitis

Of course just days after posting a success story.... The symptoms start.

Rowan started having frequent BMs, pain and low grade fever. (Sigh). Called the clinic they called in some Flagyl. (Assuming pouchitis) Today is day two taking it and she is very distended and has a hard belly but she is still having BMs... 4 today but I haven't heard any gas. I feel like it is starting all over again. Totally freaking and psyching myself out. Gosh I don't understand why whenever this kid takes an antibiotic she gets soo constipated. I wish we could just avoid the hospital for 6 months, all I am asking for is 6 months. Is that too much to ask? I am going to try to self treat it here at home tomorrow with the liquid diet... Water, Gatorade, Grape Juice, and Popsicles.

Will keep you all posted.
07-17-2013, 09:16 PM   #2
Crohn's Mom
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6 months is definitely NOT too much to ask !

Goodness Mary, I am so sorry to hear that Rowan (and you) are going through this again ~ you so deserve a much longer break than 6 months !
:hug

Best of luck with the home/mom treatment ~ I wish my kids would listen to me when I want to try out things like that !
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07-17-2013, 10:50 PM   #3
Mehita
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Awww... poor sweetie. I hope she feels better soon.
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07-18-2013, 05:20 AM   #4
Dexky
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I was hoping to not read anything else about Rowan on here for a great long time!

Other than a quick search, I don't know anything about pouchitis, or j-pouches for that matter, but I wonder if the colon targeting budesonides might be effective in treating it? Has it been tried? I hope your holistic approach works Mary!!
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07-18-2013, 07:14 AM   #5
DustyKat
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Oh no Mary, , I am so, so sorry to be reading this!

It is little wonder you are so heartbroken and beside yourself hun. I so hope the meds can pull things back into line and fast.

Good luck and sending tons of wishes and healing thoughts that you can stay at home!

In my thoughts.

Dusty. xxx
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07-18-2013, 08:05 AM   #6
Tesscorm
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So upset for you!!! You and Rowan truly deserve a long, long break for all this!

Hoping too that that all turns better for her soon and this is just a very small blip!

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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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07-18-2013, 08:21 AM   #7
crohnsinct
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Oh Man Mary! I so feel for you. Just when you allow yourself to relax and post the good news this happens. It is no wonder you live life looking around every corner. Poor Rowan. I really hope this passes quickly and is easily treated.
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Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
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07-18-2013, 08:33 AM   #8
Johnnysmom
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Oh Mary...

You must be beside yourself to see this cycle starting again for poor Rowan. I pray it passes quickly, the Flagyl does the trick, and she can start school with all of this behind her.

(((((Hugs)))))))
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07-18-2013, 09:06 AM   #9
QueenGothel
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She seems a bit better. I say that but I have said it many times before. She seemed to get a lot of the gas out during the night when she uses the toilet. Skinny again (but still has obvious gas) by morning but if the trend ends up the same I will know tonight. I hope it doesn't happen again with the evening distention again. That is exactly what happened for a month in December before her other two surgeries. I hope adhesion have not run amuck again. Thanks everyone for the support.
07-18-2013, 10:19 AM   #10
QueenGothel
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I was hoping to not read anything else about Rowan on here for a great long time!

Other than a quick search, I don't know anything about pouchitis, or j-pouches for that matter, but I wonder if the colon targeting budesonides might be effective in treating it? Has it been tried? I hope your holistic approach works Mary!!
Not really a holistic approach just the typical partial blockage steps most j-pouchers do. Avoiding food for 24 hours. She is taking the Flagyl for the pouchitis. I do know they use budesonides for pouchitis but only when the anti-biotics don't help anymore. I was so bummed because she was taking 450 Billion probiotics daily to avoid the anti-biotics. Hoping my fears don't come true.
07-18-2013, 11:16 AM   #11
my little penguin
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What about the higher probiotics next time?
DS takes the vsl#3 DS version (900 per packet )
X2 a day for a month then is going down to one packet . He has lots of rectal issues
It is prescription only.

Hope the liquids plus abx do the trick
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07-18-2013, 12:16 PM   #12
QueenGothel
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She is distended and hard again. I know this sounds crazy but could swollen intestines or excessive gas be a side effect of the Flagyl? I can't find anything on the Internet. Just seems weird that after one day of being on the a flagyl this happens. Today she has only had two glasses of grape juice, water and yogurt and she is already getting huge again.
07-18-2013, 12:21 PM   #13
QueenGothel
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Or can Flagyl cause an ileus? Gosh I cannot believe I am freaking doing this again. Waiting for the clinic nurse to call me back.
07-18-2013, 04:38 PM   #14
my little penguin
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can she go back on all peptamen or other formula for just a bit?
07-18-2013, 05:05 PM   #15
xmdmom
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So sorry you guys are dealing with this again! I really hope that this is a minor bump in the road and that Rowan is feeling well soon!

The prescribing info for flagyl says "The most common adverse reactions reported have been referable to the gastrointestinal tract, particularly nausea reported by about 12% of patients, sometimes accompanied by headache, anorexia, and occasionally vomiting; diarrhea; epigastric distress; and abdominal cramping. Constipation has also been reported." It also says people with crohn's have more gi side effects with it-- no note about folks with UC. It doesn't specifically mention gas or ileus but who knows for sure.

(((HUGS)))
07-18-2013, 07:01 PM   #16
QueenGothel
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Spoke with the clinic nurse. She called her surgeon and they said to stay the course with the Flagyl and give it more time to work. They don't think I should adjust her diet much beyond the fact that I know what she can tolerate. Lovely, she isn't tolerating liquids too well at this point so what do they expect me to feed her??? I have like 6 Nutren Jrs left and then my supply is gone completely. Would have to get a prescription and a prior auth to get more. I hope I can resolve this without going to the Hospital.

Irritated again.
07-18-2013, 07:04 PM   #17
QueenGothel
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My prior auth for VSL3 has just expired. They are working on a new one. I already mentioned getting VSL3 DS. Waiting to see what they say!
07-18-2013, 07:04 PM   #18
my little penguin
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what about pedisure or boost kids - target /grocery stores tend to run boost on clearance
07-18-2013, 07:05 PM   #19
my little penguin
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We have to pay OOP for VSL #3 no coverage- good luck
07-18-2013, 08:50 PM   #20
QueenGothel
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I will have to get a job if we will have to start paying for that and I am supposed to start back at school in Sept. total BS that it is OOP. Trying to find some light in the darkness. Boy oh boy I had been feeling great but I tell you this worry kicking in out of no where is not good for me at all. Felt like I was going to have a panic attack earlier. Have to remember to breath and not to google google google so much. My brain hurt.
07-19-2013, 02:26 AM   #21
DustyKat
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Thinking of you Mary.

Dusty. xxx
07-19-2013, 02:28 PM   #22
QueenGothel
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Very thankful I got a call today saying we got the prior authorization for Rowan's VSL3 at 4 capsules a day for another year. I was getting a bit stressed out over how we were going to come up with the money. Being as we pay for that secondary health care primarily for this purpose. Something good happened.

Rowan seems less distended today. Still is distended but I was pleased to see it go down and hearing her pass gas with my ear to the door. She is not burping as much today either. She did pass some coffee grounds looking stool last night so I think there was a ball of stool stuck in her intestines. Still sticking to soft foods and loads of liquids today. But if feel a little better I was about to change my picture back to the break stuff photo I had for so long.
07-19-2013, 08:09 PM   #23
Farmwife
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I'm glad to hear the update.

The interesting thing with Grace is we have to 1/3 her pro-biotics.
I was giving the full dose but she would build up with gas.

She also builds up with gas but I can vent her g-tube and get it out.
I'm thinking about getting one for every family member.
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07-20-2013, 02:07 PM   #24
QueenGothel
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She has been taking the VSL3 at this dosage for 8 months without this issue. maybe it is the VSL3. 3 more days of Flagyl and it is over.
07-20-2013, 02:12 PM   #25
my little penguin
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gas is common but only within the first few days then the system stabilizes.

There is a child version of VSL #3 - much less bacteria
http://shop.vsl3.com/vsl3-junior-30-...oduct-p16.aspx

OUr gi said it would make any difference for Ds if he did adult or child version

he prescribed the higher dose stuff
07-20-2013, 02:16 PM   #26
QueenGothel
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Well today is day four so hoping it stabilizes. Doctor wants me to still give high doses because the probiotic is what stops the pouchitis from occurring. She wants her on the therapeutic doses especially now while the Flagyl is killing off both good and bad bacteria.
07-20-2013, 06:01 PM   #27
DustyKat
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Sending you tons of luck and healing thoughts Mary.

Dusty. xxx
07-20-2013, 11:00 PM   #28
QueenGothel
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She got very big to the point to where she couldn't get around anymore. My mom had her today and she was with her for 6 hours and she never had a BM. When I saw her belly I about had a stroke. I made her go to the bathroom and it did help but that is so scary. She was very distended and her belly was hard. She is much softer now she finally got the gas out, but it just confirms that I cannot let her out of my sight right now. Gosh I hope I am just seeing side effects from the meds and this is not something bigger going on. I have my gut feeling and it doesn't feel to good right now. Trying to be patient and let the meds do their thing.
07-21-2013, 02:59 AM   #29
DustyKat
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Thank goodness she has you looking out for her Mary.

Dusty. xxx
07-23-2013, 08:27 AM   #30
QueenGothel
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Well doctors wanted me to keep her on the Flagyl for 10-14 days and a minimum of 7. Today is day 8. She is so distended, I am stopping the Flagyl to see if it is a side effect. I cannot just leave this to chance and risk her getting a mobility issue because of repeat dilated small intestines. It is all gas and for some reason she doesn't pass wind during the day ever since we started the antibiotics. Hoping and praying this pouchitis doesn't flare up again in the meantime? The other kids on the group I started do a 7 day course with success. So I am hoping we can as well!
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