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08-19-2016, 03:41 PM   #1
pcsg560
 
Join Date: Aug 2016
Still Confused

So the inflammatory markers are down for my Ella, who is 5 with UC. She has zero pain urgency or diarrhea (she goes once per day), but is still having a small amount of blood each time. She is not anemic. Her Pentasa was increased 2 weeks ago and her labs have improved. Why is she still having blood? We don't go back to the doc for 2 weeks. This is her first flare since diagnosis almost 2 years ago. Does it take a while for the blood to go away? Should I be worried? She is acting completely fine other than a little blood. She went 2 days with no blood and then ate a little cruddy last night and had a little today with a little looser stool than normal, but not diarrhea. I hate this. I feel like I can't plan anything. We have a vacation to Disney World scheduled at the end of October and I keep wondering if we will even get to go. If she has to change meds, I am worried that she could have issues while we are there. GAHHHH! Thanks for listening. Im just a mess.
08-19-2016, 04:44 PM   #2
Clash
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It can take some time for the bowel to heal from inflammation. It could also be that she may have a fissure if it isn't a heap of blood or just showing up on the toilet paper.

It can make you crazy with worry with all the symptoms that come along with IBD. But if the labs are trending downward and her symptoms are starting to abate then hopefully things are headed in the right direction.
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Clash
Mom to
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
08-19-2016, 05:19 PM   #3
DustyKat
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As Clash as said, it will take time for the bleeding to completely subside. If you think of a wound you have on your skin and how long that takes to heal, well thatís what it is like with your little oneís bowel. But with the added disadvantage of not being able to dress it and keep it free of bumps and irritations so it takes a tad longer.

While ever the inflammatory markers are trending down and the blood, although still present, is lessening I would take that as very positive signs that all is moving in the right direction.
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08-19-2016, 08:07 PM   #4
pcsg560
 
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As Clash as said, it will take time for the bleeding to completely subside. If you think of a wound you have on your skin and how long that takes to heal, well thatís what it is like with your little oneís bowel. But with the added disadvantage of not being able to dress it and keep it free of bumps and irritations so it takes a tad longer.

While ever the inflammatory markers are trending down and the blood, although still present, is lessening I would take that as very positive signs that all is moving in the right direction.
Thanks you guys! I really appreciate the support. I have NO ONE in my community who has a child with this and I am so thankful to have the support. Please bare with me with my questions. I really appreciate you guys.
08-19-2016, 08:26 PM   #5
DustyKat
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Hugs mum.

Please know we understand the isolation and the feelings of despair that come along with with it. We were all where you are now and have only gained the knowledge we have through our personal experiences and asking questions. Sometimes we find ourselves back at the start again and asking the questions all over again as new challenges present themselves. The best thing about asking questions is that it opens up the information to others.

With that in mind donít hesitate to ask as many questions as you need and remember, there is no such thing as a dumb question! It is through reading and asking that you will become the best possible advocate that you can for your little lass.
08-20-2016, 09:06 AM   #6
CarolinAlaska
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I agree with the answers already given. I just want to give you some encouragement. It will get better! Enjoy her improvements and keep tabs on the blood, but if she isn't fatigued or anemic, give it time.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
08-21-2016, 12:54 PM   #7
pcsg560
 
Join Date: Aug 2016
I agree with the answers already given. I just want to give you some encouragement. It will get better! Enjoy her improvements and keep tabs on the blood, but if she isn't fatigued or anemic, give it time.
Thank you so much! I am struggling with this so much. I hate that we can't make plans for anything. She is such an active kid. Even with the flare she never had diarrhea. Her only symptom was the blood. She had no pain, no urgency, nothing other than bad labs and a little blood in her stool. The labs have improved and they will be rechecked in about 2 1/2 weeks. I don't like that she still has the blood. It worries me. Its very very little, less than a teaspoon, but its just a constant reminder that she has this thing. When she was first diagnosed, she was put on Pentasa and it immediately stopped. Now he has increased her dose and she is still having it even though the labs have improved. Thanks so much for listening. Im just having a rough time.
08-24-2016, 09:20 AM   #8
Tesscorm
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Once the 'reminders' disappear, it does get easier to accept and adjust. I completely understand your comment that even the small amount of blood is just a constant reminder of the concern... Trust that things will get better. As was said above, healing does take time. While my son didn't have blood, he had mucous (indication of inflammation) for months after starting treatment. And, you're right, even with results showing improvement, the visible evidence just refuses to let the worry lessen! But, it does sound like she's on the right track.

Are you from out of the U.S.? If yes, rest assured that you can easily reach your doctor from Disney and there are good hospitals nearby that could treat your daughter, should there even be a problem! My son was older than your daughter but we also went on a trip to Disney just 3 months after diagnosis (and all went well!).

As a 'back-up' plan, I always send Boost shakes with my son when he travels (or, more recently, Carnation Breakfast powder because it's lighter). If he starts feeling unwell, he then has the option to skip 'food' and just drink the shakes for nutrition. The shakes are easier to digest so requires less effort from the intestinal system. He's never 'needed' to drink the shakes while on vacation but it gives me some relief knowing there's a 'plan' in place.
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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

Last edited by Tesscorm; 08-24-2016 at 01:35 PM.
08-24-2016, 09:29 AM   #9
DanceMom
Senior Member
Nemours Children's Hospital is super close to Disney and they're amazing! Enjoy your trip!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
08-25-2016, 04:49 PM   #10
Farmwife
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Hugs mom, your doing great no matter how you feel.
It took almost a whole year before my grace got better on Remicade.
just hang in there it can get better.

And as much as I hate to say it, Dusty is right
we've all been where you are, with lots of questions and little answers.
That's why this forum is so wonderful, we know there is support and help.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-25-2016, 05:47 PM   #11
kimmidwife
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We go to Disney quite often. As soon as you get in the park go to guest services and ask for the handicapped assistance pass. It is a pass that you don't have to wait online. You go the ride and they give you a time to come back. It is not bad. I also would bring a stroller for her to ride in let her sit and rode as much as possible so she doesn't get overtired. Feel free to message me for any other tips.
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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.
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