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Crohn's Disease Forum » Parents of Kids with IBD » Blood three weeks post surgery?


04-04-2013, 08:54 PM   #1
awmom
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Blood three weeks post surgery?

Here we are on the roller coaster again! Yesterday we saw Nico's GI and surgeon for a follow up, and all was fine. Then shortly after dinner Nico went to the bathroom and had bloody diarrhea. We weren't 100% sure it was blood so we waited till today and tonight again, and quite a bit worse. He never had blood before his surgery. I have been concerned that he was looking so pale and mentioned it to the doc, so they did some lab work. He was already looking a bit pale even before the surgery. Anyways, just wanted to know if any of your kiddos had this so many weeks post surgery, or what your thoughts are. I am calling his GI first thing in the morning!
04-04-2013, 08:57 PM   #2
Jennifer
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I did not have any bleeding after my resection. Hopefully the GI will be able to find the cause soon. Keep us posted. *HUGS*
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-04-2013, 09:02 PM   #3
Mehita
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I would definitely call the GI. Poor Nico
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
04-04-2013, 09:09 PM   #4
awmom
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Thanks guys. I forgot to mention that the surgery was three weeks ago and did have blood for a few days after, but that was it. Now I'm worried it was either some food (I thought maybe this gluten free white bread which feels a little grainy to me) though he is still on a bland/soft diet, or maybe c-diff? Aaaaghhh....
04-04-2013, 09:13 PM   #5
kimmidwife
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I would call tonight and speak with the on-call doctor.
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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.
04-04-2013, 11:03 PM   #6
awmom
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Thanks kimmidwife.....I took your advice and called. He said that if he is feeling ok I can just call them in the am. He is feeling fine and already went to sleep. I can also call my gp here (GI is 2 hours away!) and she can order labs to assess the situation. I forgot to tell my son to wake me if he goes again! Don't you sometimes wish they were still little so you could just plop them on your bed to sleep when they are sick? Thanks Kim!
04-04-2013, 11:52 PM   #7
Jennifer
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You could put a note on the bathroom door to have them wake you after they go if you want to know.
04-05-2013, 08:09 AM   #8
Tesscorm
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Thinking of you...
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Tess, mom to S, 22
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
04-06-2013, 08:13 PM   #9
CarolinAlaska
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I'm sorry you had to get back on the roller coaster. I thought it was time for you guys to leave the amusement park for a rest at home. I hope it ends up being nothing. Here's some <<<hugs>>> and know that we're thinking of you. Any updates?
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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.
04-06-2013, 08:26 PM   #10
kimmidwife
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Wondering how you guys are doing?
04-06-2013, 09:52 PM   #11
awmom
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Thanks guys. Well, the darnedest thing.....all is well today, no D and no blood. I did make some changes to his diet...the big one is I stopped giving him this gluten free white bread he's been eating alot of because it has always felt a little gritty to me, and am giving him oatmeal pancakes instead. Maybe this made a difference. Of course, now I'm worried silly that all this time eating that bread was like rubbing sandpaper on his surgery site.

Ok, here goes another worry (I don't know what I would do without all of you).... His GI said he recommended that he stop the remicade and take instead 50 mg of 6mp. He had been on 75mg of 6mp about two years ago and it did reduce his inflammation though I'm not sure it took it all the way down. He was switched to remicade when they saw the stricture to see if it would get rid of it and was on it for a year (his WBC count went too low after 8 months so they spread the intervals to every 10 weeks instead do every 8). The reason that I am worried about the switch is that his colonoscopy (2 months ago) showed "mild inflammation" in the colon. I expressed my concern also about him building antibodies to the remi should he need it again and he said the 6mp would help prevent that from happening. Any thoughts? Thank you all again!
04-06-2013, 09:54 PM   #12
CarolinAlaska
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AWMOM, I'd have the same concerns. Every change is so scary, isn't it?!
04-06-2013, 10:19 PM   #13
awmom
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YES!! Especially when I don't really understand the rationale......our GI is not very verbal!!
04-06-2013, 10:22 PM   #14
my little penguin
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6-mp will not stop him from building antibodies to remicade .
Every study I read stated anything spread out over 16 weeks or episodic in natutre decreases the efficacy and increased the risk of Haca forming .
6-mp only slightly reduces antibody formation when given in combination with regularly dosed remicade.

Look in the pediatric research section I posted ,ore than a few papers on optimizing biologics
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04-06-2013, 10:29 PM   #15
my little penguin
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http://www.advancesinibd.com/assets/...gics_print.pdf

Here is one more

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002580/
04-06-2013, 10:58 PM   #16
awmom
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Thanks a lot MLP I will be doing my reading tonight!
04-06-2013, 11:27 PM   #17
Jennifer
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I've never heard of any medication preventing you from producing antibodies to Remicade. What's so great about 6MP is you can go back on it later on down the road if needed, not so with Remicade (you can try but it may not work). If it were me I'd want to ride the Remicade train until it didn't work anymore (I'm actually doing that now). It can be used to reduce inflammation and as maintenance during remission so I don't understand why the GI would take him off it.
04-08-2013, 12:09 AM   #18
awmom
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I totally agree with you. The only reason, I am now thinking, that he might be suggesting the switch is that his WBC count went too low when he was doing remi at 8 week intervals so he (this was through his previous GI) was put on 10 week intervals. Then at his last scope showed mild inflammation. But when I questioned his GI about the switch to 6mp he didn't say this. I think this merits a talk with him because i was very surprised that he would take him off. In the meantime Nico has started the 6mp. He would it be due for remi the 15th, so we have a bit of a leeway.
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