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Crohn's Disease Forum » Parents of Kids with IBD » Just venting to other moms who would get it


07-25-2014, 12:23 AM   #1
Dragon
 
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Just venting to other moms who would get it

My son is 19yo and has Crohn's and High functioning Autism. He was diagnosed a little over 7 years ago with Crohn's. Between the autism (and lack of mental filter) and dealing with Crohn's for so long, poop is only one or two steps away from dinner conversation. As a matter of fact, I am pretty sure we HAVE discussed it at the dinner table once or twice. We have to communicate openly with him about it to keep an eye on his disease. I have given him an app to log symptoms with, and he "forgets" to use it.

Well, tonight, my Crohn's "Mommy Radar" went off. I go to his room, and ask "G, what do you need to tell me about your Crohn's? What's going on?" His response, "Oh yeah, I forgot to tell you. I pooped some blood earlier." Ummm WTF?!? How do you forget to mention that? He knows he is supposed to tell about blood and anything else unusual about his poop. We have both been home all day. It's not like he would think anything of yelling that from the bathroom even if we had company over.

Sorry to vent here, but this was the only place I could think of to vent this. My Autism Mom friends don't understand the realities of Crohn's.

Thanks for reading.
07-25-2014, 06:44 AM   #2
CrohnsKidMom
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When you have boys in the house, the topic of poop is only one or two steps away from dinner conversation. Maybe your son didn't have any associated pain, so he really did just forget to tell you about the bleeding? I hope things remain ok.
07-25-2014, 08:53 AM   #3
Tesscorm
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It can certainly be frustrating!!! My son, on remicade, etc., just thought to tell me that he'd been coughing up brown phlegm every morning for MONTHS! Ugghh Luckily, it's turned out to not be anything serious but... we did have ANOTHER discussion about letting me know 'important' things and what is considered 'important'!

You can only do what you're doing... keep talking and asking questions.
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Diagnosed May 2011

Treatment:
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
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
07-25-2014, 09:06 AM   #4
Jmrogers4
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House full of boys and 2 crohnies, poop is a regular topic of conversation even at the dinner table.
Jack would forget as well. He only remembers to tell when something is bothering so much he can't forget about it. So I have to ask all the time.
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Jacqui

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
07-25-2014, 10:34 AM   #5
Clash
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Lots of poop convos at our dinner table too! C is 17 also and though I do tend to get play by play info, it usually seems to happen when it is something that is painful or bothersome to him.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-25-2014, 11:10 AM   #6
Henrietta78
 
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Two boys, 2 and 5, so we talk about poop at the table all. The. Time. Regular dinner table conversation between hubby and I is who pooped (or didn't) today, and what did it look like...and it is almost always compared to food to make it worse! I actually thought that was normal until we babysat our nephew one day and gave his dad the "poop report" when he picked him up and he gave me the weirdest look, like "why are you telling me this?"

The fact that he didn't mention it could mean that it was blood w/out pain, which could be valuable info anyways?
07-25-2014, 11:29 AM   #7
my little penguin
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Lots of poop at the table here as well.
We have a no flush rule .
DS has his own designated bathroom so anytime he goes at home . He knows not to flush until I have seen it .
But he is only 10 and was dx at 7.
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07-25-2014, 12:20 PM   #8
Maya142
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We have a "take a picture if it looks weird" rule . M is too embarrassed to keep the picture on her phone so she immediately texts it to me and deletes it from her phone after that.

There have been several "interesting" situations when I've opened a text in the company of coworkers or friends and it's been a picture of poop!
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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
07-25-2014, 03:04 PM   #9
Patricia56
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My 18 year old took several days of increasingly difficult symptoms before he told me he'd been having bloody diarrhea last Christmas. I wanted to strangle him. He landed in the hospital for 10 days and I "think" he's learned enough not to do that again.

I think it's normal, Aspie or not, to want to ignore that kind of information. If you ignore it you can pretend it isn't real and then you don't have to take the next logical step in that chain which is - I might be getting sick, again. I don't know if being Aspie makes it easier to do that - I suspect it might but I don't really know.

Anyway, you have my sympathy. It is frustrating and you want to make sure they get good care and don't get really, really sick but you can't do it without their cooperation. Which is a chancy thing. So vent away as I am with you 100%
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-26-2014, 12:01 AM   #10
Catherine
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High functioning autism and Crohn's keeps life interesting. I count myself lucky that I don't have them with the same child.

It hard to sort out what is normal teenager behaviour and what is the autism.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-26-2014, 05:41 PM   #11
DustyKat
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Oh man Dragon, this so sounds like it could be my son! My lad doesnít say much but the amount of times the important things slip his mind is mind boggling! I donít think my important and his important reside in the same universe.

I hope all is well with G and the appearance of blood is not a serious setback.

Dusty. xxx
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07-26-2014, 11:45 PM   #12
kimmidwife
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Dragon,
What if you kept a chart on the back of the bathroom door that he has to check off when anything is abnormal? Have a column where he writes the day of the week and the symptom. Example diarrhea and blood. You could also have a daily tally column for how many times a day he is going if it was needed. Then you could just check it several times a day to see if anything was checked off and that way he wouldn't have to remember. I would even fasten a pen on string next to it. Just a thought to simplify. We have a niece with severe autism and I know her Mom makes a lot of charts for her and they seem to help a lot.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-27-2014, 01:46 AM   #13
Dragon
 
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Kimmidwife,

Thanks! It's worth a try. G can be very compliant about following rules, but he often forgets things when it's convenient.
07-27-2014, 02:37 AM   #14
lenny
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I asked my son not to flush if his poop looks strange in any way.
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