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07-20-2016, 09:59 PM   #1
CarolinAlaska
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6MP and appetite

Jae's 6MP was increased last December. Since then she has had a lack of appetite that made her very picky. Now she doesn't want to eat anything - not because of pain, but because nothing looks good to her. I read that mercaptopurine can take away your appetite. Has anyone else experienced this?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
07-20-2016, 10:02 PM   #2
Maya142
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My daughter loses her appetite when her IBD is not under control. Is it possible J is starting to flare? Have they done an FC recently?

My kiddo is on Imuran, not 6MP, and is eating well. She does need to eat small meals often, but that is due to her Gastroparesis, I think.

Is J getting full very easily? Nauseous? Any other symptoms -- belly pain?
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-20-2016, 10:14 PM   #3
CarolinAlaska
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My daughter loses her appetite when her IBD is not under control. Is it possible J is starting to flare? Have they done an FC recently?

My kiddo is on Imuran, not 6MP, and is eating well. She does need to eat small meals often, but that is due to her Gastroparesis, I think.

Is J getting full very easily? Nauseous? Any other symptoms -- belly pain?
Blood work normal in June. No fecal calprotectin done since November/December when it was elevated but also had c.diff at same sample. Belly pain is mild. Sometimes (rarely, and I'm shocked) she eats normally, then won't eat much for a few days. I don't think she has symptoms of nausea or early fullness. She says that she think of a snack, and think she might like it, but when she goes to get it, she thinks it will taste bad... She's eaten Mac and cheese most of the summer but now even that doesn't sound good. She says she just wants cookies and chips.
07-20-2016, 10:36 PM   #4
Maya142
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We were told when my daughter was underweight and in the hospital that their stomachs get used to not handling food. So even a small amount can cause belly pain and make them feel full. We had to "stretch" M's stomach by adding more food very slowly to her diet.

It can also be partially psychological - in my daughter's case, eating made her nauseous and her stomach hurt, so of course she was afraid to eat.

If J can't eat, then shakes might help keep her weight up. It also might be time to do another FC and check if her disease is under control.
07-21-2016, 05:03 AM   #5
my little penguin
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Ds had similar stomach shrinkage from being on EEN for two months
Can you split the dose ?
Half in the morning
Half in the evening?
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07-21-2016, 07:40 AM   #6
CarolinAlaska
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Ds had similar stomach shrinkage from being on EEN for two months
Can you split the dose ?
Half in the morning
Half in the evening?
Do you mean the 6MP? I might be able to, or possibly switch it to evening...
07-21-2016, 07:56 AM   #7
CarolinAlaska
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Her weight has gotten over the 120 mark while on steroids last winter (up to 125), and she seems to be staying over 120 now (but that may drop if she can't eat), menstruating fairly regularly, stools down to 2-3 a day. Mostly not having abdominal pain too much. Her loose joints seem to be more of a problem lately - low back, hips, pelvis. She is out of condition and we're working on her to get more exercise...

Not liking how anything tastes, she has no interest in the shakes. Her daddy used to cook whatever she wanted, but he had surgery this summer and will be laid up for 4 months.
07-21-2016, 08:43 AM   #8
my little penguin
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Yes 6-mp dose
1/2 in the morning and half at night
Not want to eat due to lack of interest and not wanting to eat due to pain/nausea are two different things
Sounds like she doesn't want to eat
And isn't avoiding it due to pain nausea or fullness
Is she seeing a therapist - they can help with not wanting to eat ???
Ds doesn't eat due to gp but that took a while to figure out ( 6-8 months )
And that it wasn't crohns
07-21-2016, 08:45 AM   #9
my little penguin
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Also if she has been on the dose since dec it's probably not the meds
And
If she is willing to eat special things that her dad cooks for her again not the meds
Or crohns from the sounds of it
07-21-2016, 08:55 AM   #10
my little penguin
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Didn't her Rheumo want her on pred for her joints ???
If she is feeling crummy from joint inflammation then that can definitely lead to fatigue and poor appetite
How are you treating the joints ?
With pred ?
07-21-2016, 09:40 AM   #11
Jmrogers4
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Yes, Jack never had an appetite while on Imuran but in hindsight it was probably due to the inflammation in small intestine. He just never seemed to be hungry we had to remind him to eat. Once he started on remicade his appetite went crazy and while he is still a picky eater, he likes to stick to his tried and true it's just a lot more of it instead of 1/2 a scrambled egg he know eats 6!
He's still on the very thin side (6' and 136 pounds) but I watch him pack it away generally eats 2nds and 3rds, he still seems to be gaining in height just not as quickly. I'm hoping once he stops gaining in height he might put on a few more pounds. He'll be 17 on the 31st and I think he probably has a couple more years of growth.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
07-21-2016, 11:04 AM   #12
Maya142
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Yes - I agree, if her joints hurt and are inflamed and she's not feeling good, then that might be why she won't eat. Did she start the Pred?

PT might also help with her joints.
07-21-2016, 11:24 AM   #13
CarolinAlaska
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No, I'm not sure her joints are inflamed - just loose and coming out of place easily/partial subluxing with activities like soccer in the yard or wrestling with her younger brother. The activity is done maybe 3 times a week, but usually has to stop due to injury. She doesn't want to do prednisone burst because she still has a double chin and acne from last winter. Interestingly, she got some tizanadine for menstrual spasms, and that helped her back and pelvic pain during menses. The rheumatologist wants her more active to build up muscle tone, but she gets hurt! She needs to swim, but doesn't want to do it alone or with her younger siblings.
07-21-2016, 11:26 AM   #14
my little penguin
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Has her Rheumo seen her to determine if her joints are inflamed ???
I have a hard time telling when Ds is in pain due to hypermobility vs JSpA but the Rheumo knows immediately and treats accordingly ( hence the humira recently upped to ever 5 days to avoid long term steriods)
07-21-2016, 11:36 AM   #15
CarolinAlaska
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When he saw her in June she wasn't having the pains. When I called after about 9 days of back pain he wanted to put her on prednisone without seeing her. She said they went away 2-3 weeks later after her period.
07-21-2016, 11:37 AM   #16
CarolinAlaska
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Has her Rheumo seen her to determine if her joints are inflamed ???
I have a hard time telling when Ds is in pain due to hypermobility vs JSpA but the Rheumo knows immediately and treats accordingly ( hence the humira recently upped to ever 5 days to avoid long term steriods)
MLP, does the Humira help both the back and Crohn's?
07-21-2016, 11:42 AM   #17
my little penguin
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Yes- the humira plus Mtx is used to treat his JSpA which is in his hips/knees/low back /heels /neck and hands
It also does very well with his crohns
Had a pristine scope /pill cam in April
No evidence of inflammation found except a tiny bit of thickening at the TI on an mre
Which was there at dx 6 years ago
07-21-2016, 11:44 AM   #18
Maya142
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We also had a lot of success with Humira/Remicade for JSpA - for both my daughters. Worked very very well for my younger daughter's Crohn's too -- scopes looked GREAT. The moment we took her off an anti-TNF and put her on Imuran instead, her Crohn's flared.
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