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03-20-2013, 07:58 AM   #1
QueenGothel
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J-pouch Issues

My DD is acting normal, but last night had a couple of drops of blood in her BM last night. One on the tissue and one on top of the BM. She also said her belly might be hurting. Gosh I hope this is a staple line issue again and not something inflammatory going on. Guessing I should make an appointment with her doctor. If it is cuffitis I am thinking of asking for LDN as she is intolerant to Canasa Suppositories which is the usual treatment for cuffitis. The only other treatment is topical steroids. Worried again.

Why is it if I say something positive I feel like I jinx my DD. I really don't want her to get any testing or scopes to verify where this is coming from. I really don't want anesthesia for the scope she has had a lot all ready this year and it just began. I am so tired.
03-20-2013, 08:13 AM   #2
Tesscorm
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Sending lots of prayers that this is just a one-off instance! You both deserve a break!

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03-20-2013, 06:52 PM   #3
Farmwife
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Hugs
Will her GI write out a script for LDN? Or will you go to her GP?

Did you see in my thread about the MI Children's Special Health Insurance?

How is she tonight?
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03-20-2013, 07:19 PM   #4
QueenGothel
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Right now she is a little bloated. Saw another two drops. Watching her like a hawk. No didnt read you post yet, I have been out all day working on my nieces baby shower. I will look it up.

LDN... Hmm IDK. Probably talk to her surgeon since she is in charge still. See if she refers me to a GI. Motts won't assign me a GI remember. Her surgeon has been pretty cool so far, the GIs before wouldn't write it when she had UC so doubt they have changed their minds on the use of it. There is no studies on it at all. I theory it should work though.

I spoke with some people whom deal with cuffitis and they all have pain. Rowan does not really complain of pain much. So I am trying to not focus on it. She had a Mucousectomy so she should not have cuffitis. It can grow back but I don't think this quickly.
03-20-2013, 08:29 PM   #5
Dexky
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I had to google cuffitis Mary. What was her reaction to canasa supps? Is there any other formulation of mesalamine suppositories she could try?
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03-20-2013, 10:05 PM   #6
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((((Hugs)))) Mary, I know this waiting, watching and worrying is so hard on you and Rowan.

Are you still thinking about a second opinion?
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03-20-2013, 10:09 PM   #7
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Sending hugs Mary and hoping this is just a fluke! I know what you mean about jinxes.
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03-21-2013, 03:48 AM   #8
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Sorry to hear you are having to worry again. Hope things settle down without having to go through any tests!
03-21-2013, 06:42 AM   #9
Mylittlesunshine
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Big hugs to you an Rowan x
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03-21-2013, 06:48 AM   #10
QueenGothel
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Johnnysmom, we cannot get a second opinion out of the state without being transferred as an inpatient. I don't think what is happening is that extreme to be admitted. Knocking on wood of course!
03-21-2013, 06:51 AM   #11
QueenGothel
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I had to google cuffitis Mary. What was her reaction to canasa supps? Is there any other formulation of mesalamine suppositories she could try?
Mesalamine reaction was rectal bleeding so I don't think so. I put an LDN bug in the clinic nurses ear. There is not any studies on its use for cuffitis, but in theory if this is an auto immune response it should work.... Right?!
03-22-2013, 05:32 AM   #12
Dexky
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Is there an LDN suppository??
03-22-2013, 08:17 AM   #13
QueenGothel
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No but just the oral meds.
03-22-2013, 08:54 AM   #14
Tesscorm
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It is also available in a transdermal cream. There was another parent who's daughter was using the transdermal cream but I just can't remember who???
03-23-2013, 04:09 AM   #15
DustyKat
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I remember Livilou started her daughter on transdermal LDN, would that be who you are thinking of Tess?

Dusty.
03-23-2013, 08:29 AM   #16
QueenGothel
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Well I read through a lot of posts and the studies within the posts and for the most part it seems LDN should be taken in the oral form unless there is absorption issues. The transdermal LDN doesn't have any research on it but it seems as though in theories it would be slow release which LDN is one hit causing a rebound effect. Theories are out there but questionable if transdermal LDN would create the rebound effect properly to achieve remission. No real remission achieved with it that I can find.

Spoke with her surgeon via email and she hasn't heard of LDN being used for J-pouchers and if the bleeding continues wants to put her back on Flagyl or Ciprofalaxine. I don't know how comfy I am about rotating antibiotic for long periods of time being that she is so young and I would hate to need them later and her to get to the point where they don't work anymore. Antibiotics are used for pouchitis but cuffitis is completely different and she states they are treated the same. This goes against every study and personal experiences I have read online. I don't know how to approach her Surgeon about this fact without questioning her experience with cuffitis.

Rowan is still having a little blood every now and again there have been a couple of days inbetween sightings. No pains or complaints. But as usual I question what is she hiding from me, I don't want to over question her either and worry her.
03-23-2013, 08:42 AM   #17
Farmwife
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I know what you mean. Grace I think is old enough that she hides things because she thinks it will end with a blood draw. Our poor girls. I don't blame them. Of course your dear girl has been through a lot more the the average little one. Your both in my prayer.
03-23-2013, 02:22 PM   #18
DustyKat
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It surely is a delicate balance between asking and asking too much Mary!

In my thoughts, always.

Dusty. xxx
03-23-2013, 02:39 PM   #19
QueenGothel
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She is having belly pain and is using her heating pad. She feels like she has to poop but cannot. Hmmm...
03-23-2013, 03:33 PM   #20
QueenGothel
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It was trapped wind, man can this kid make a mess of the toilet. Explosive gas with loose stool that the flush doesn't take down. What a mess, I can't wait until she is old enough to clean that up herself without making an even bigger mess. She is feeling better, Thank God!
03-23-2013, 03:36 PM   #21
DustyKat
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Well if that hasn't just made my Sunday then nothing will! Thank god is right!

If I am so relieved what must you be Mary!

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03-23-2013, 11:46 PM   #22
kimmidwife
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Glad to hear she is feeling better! I was keeping my fingers crossed. I hope your doctor will consider the LDN. Livilou did try transdermal but it is not the reccomended route for IBD. I don't think it worked well for her either.
03-24-2013, 08:39 AM   #23
QueenGothel
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Rowan had more blood yesterday. Still just a few drops doctor will probably start another course or Flagyl or Cipro. They like to rotate these meds as to avoid resistance. Antibiotics is her preferred drug, as there are no studies done on cuffitis and LDN. But regardless if it helps with UC... Cuffitis is technically UC of the rectal cuff so I would think it can be used. I will gather my info and send it to her if the antibiotic don't take care of it quickly. I understand their hesitation but I got bullies about LDN before when i wanted it before Her UC got sooo bad and I will not be bullied again.
03-24-2013, 02:32 PM   #24
DustyKat
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Thinking of you Mary and wishing you loads of luck with the LDN!

Dusty. xxx
03-24-2013, 05:54 PM   #25
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Thinking of you. Let me know if you have any LDN questions. The best place to get it is Skips pharmacy in Boca Raton. They send it all over the world. They are the number one compounder of it. We used to get it someplace else and it didn't work as well because I think it wasn't fresh.
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