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Crohn's Disease Forum » Parents of Kids with IBD » First time to see bright red blood


12-03-2013, 10:31 AM   #1
Savannah's mom
 
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First time to see bright red blood

Savannah was weaned off of Entocort a month or so ago. First couple of weeks were good and had no doubt it was the right thing to do after 2 years.. Maybe not!

She started having pretty regular episodes of pain and general not feeling well Nov 22 we seen her GI Nov 25. He ordered the typical labs and a Calprotectin(?).
Her hemocrit, hemoglobin,Mean Cell Hemoglobin, red blood cell, all came back low or just barely normal on the low range.

She finally got to hurting last night bad enough to comply with the stool sample she is 11 and is not the best patient. Her stool was not formed and was soft but bloody, fresh red blood. In the past all the blood was just microscopic.

Have a call into her doc and sent him an email.
Savannah's dad is completely freaked and wants to take off work an take her to the ER. I got Savannah up for school this morning and she didn't say a word about feeling bad or pain so she is at school. I told him I have taking the time to read an learn about this disease and people that have it sometimes bleed but they don't panic.

Oh and every couple of months her diagnoses changes right now we are at Crohns Colitis. I just told the doc I don't care what you call it just keep her healthy!

Right now she is only on Pentasa 1000mg in the am and the pm. Nexium and Amitrypitiline.

Thanks for letting me vent! Can't talk to anyone else about it.
12-03-2013, 12:15 PM   #2
Farmwife
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Yes, I don't blame her dad. Your first reaction is to freak. you'd think most people would be that way, well except if you have IBD.

I was told for first signs of something NEW always call the GI right away.

Right red suggest lower GI bleeding. Since her dx right now is CC I would think the bright red makes sense.

Is is painful when she passes. Have YOU looked in the area?
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12-03-2013, 12:30 PM   #3
Savannah's mom
 
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Yes, I have a call and an email into the doc. We have only been seeing this doc since Aug so I am not 100% sure of their call back times I am hoping lunch and not at the end of the day.
Savannah is still at school and I called the nurse and emailed all her teachers first thing this AM. It helps keep me calm to remind myself she is still at school.

Her colonoscopy from this past Sept showed Cryptitis in her Terminal Ileum, and chronic inflammation in her left and rectosigmoid colon.

Yes, it is painful during and after her bowel movements. That hasn't changed in 5 years
12-03-2013, 12:39 PM   #4
Farmwife
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Oh poor girl.
Grace during flares has visible blood. Hers is mostly dk red. Has she ever had fissures?

I hope you hear soon.

HUGS
12-03-2013, 12:48 PM   #5
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No, Savannah has not had any real complications fissures, fistulas or strictures.

But she was on the Entocort for 2 years and I changed her doc to get her off of it. He agreed after the colonoscopy which had no visible signs of disease. Her first doc just pretty much refused.

Her previous doc and new doc are friends both have asked me of it was ok to consult each other. I told them both I don't care maybe between the 2 of you, you can get her off the Entocort safely! Bet the first doc will be thinking I told ya so!
12-03-2013, 01:01 PM   #6
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Savannah mom
I am surprised they kept get on entocort so long. Usually these kids are put on a maintenance medication and steroids are only used for flares.one of the top pediatruc ibd centers in the country is in Texas.I can't remember if it is Dallas or Houston. It was listed number three in the country by us news and report. Is that where you are seen if not you may want to seek a second opinion there. I think someone on the forum takes their child there hopefully they will be along and chime in.
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12-03-2013, 01:43 PM   #7
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Yeah I think Texas Children's is the hospital you are referring to that is where she was at an prescribed the Entocort 9mg for 2 years. I left there and took her to Hermann Memorial Hospital also in Houston.
Here is Houston, low use of Entocort 3mg daily is considered maintenance lvl meds especially adult patients.

After we get thru what ever this is I will be talking to her new doc about something besides Pentasa it obviously is not enough to keep her under control. I have agreed to short term use if ENtocort if the needed but we will be looking for a new maintenance med!
12-03-2013, 02:07 PM   #8
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Oh heard back from the nurse... I dropped the stool sample off this morning at the lab and asked when the test results will be back and she said 1 to 2 days.. Oh the nurse just told me 10. We can not wait 10 days for test results!! He is thinking the doc will want Savannah to go to the ER now waiting to hear back again.

On the plus side she is still at school! Kids are so amazing!! She was in pain yesterday all day at school to but kept it together till she got home.
12-03-2013, 02:38 PM   #9
DanceMom
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My girl does the same. She suffers through school, church, dance, etc. but when she gets home she lets it all out.

We also see bright red blood occasionally but still haven't found the source. My daughter has ridiculously fast transit time so it could still be her small bowel. Our doctor isn't really alarmed unless it is enough to turn the bowl water red and happens more than once. It always alarms me though.
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12-03-2013, 10:09 PM   #10
Brian'sMom
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We see blood more often than I like. If we are collecting stool in the 'hat' I always see more of it (The water in the toilet must hide it other times). I know he has a large ulceration near his rectum and it bleeds a bright red. If I were to take him to the ER every time I see blood...we'd be there every week. I think a "NO Blood" situation is remission. (Just my personal opinion) Our GI is well aware of the blood, if it would be more than usual then I'd get alarmed at this point. Today we found out ds has c diff. UGH!! Never ending crohns excitement.
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12-03-2013, 10:19 PM   #11
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Same here- DS has mini flares with blood. We call the Gi let them know especially if its been a while for blood. But otherwise we just watch , send a stool sample if it persists and get blood work. Never been to the ER for blood on the stool .
Even before his crohn's dx he was bleeding a little bit for well over a few weeks before his scope .

He does the same -school swimming etc.,,
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12-04-2013, 10:10 AM   #12
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Thanks for sharing your childs experience with me.

Savannah made it the full day of school. She never complained about feeling bad last night acted pretty normal. Only thing is I could not get her to eat. She finally ate a bowl of cereal before bed.

Who knows?! maybe it was a one time thing.
12-04-2013, 10:12 AM   #13
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I glad to hear.
I'm sorry am not up-to-date on her but did she have microscopic damage on her scopes and was that enough to dx her with IBD?
12-04-2013, 10:48 AM   #14
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no visual abnormalities on the scoop from Sept 2013 it was just under the microscope.

A few years back they diagnosed Savannah with duodenitis and colitis then November 2012 they said Non Specific IBD we are going to continue to treat her for Ulcerative Colitis and Crohns because we aren't sure what it is. Then this past Aug we changed doctors he said he thinks it is Ulcerative Colitis until he did the Colonoscopy and endoscopy in Sept now he said he is rather confident it is Crohns Colitis ( he also has all the records of TX Childrens now).
I just told him I don't care what you call it just keep her healthy!
So her medical records now say :
Crohn's Colitis,
Endocrine Laboratory Tests Nonspecific Abnormal Findings (monitoring her for Hyperthyroid she has Thyroidititis)
Irritable Bowel Syndrome

I think it is just years of data collected on her and I mean it I don't care what they call it that is not as important to me as her being well. That is a doctor satisfaction thing being able to label something. The general public rather it be teachers, car salesman, the lady at the customer service booth at the grocery store has no clue what Crohns or Colitis or IBD is.
My daughters pediatrician just retired last year his replacement another pediatrician I wanted to give her a shot. So we went to see her for headaches. She thought it was a sinus infection she wrote Savannah a script for antibiotics and allergy meds. we briefly talked about savannah's IBD she looked dazed and confused to! I get home read the antibiotics info and there is a warning on it "may cause colitis". Needless to say Savannah did not get those antibiotics and she has a new pediatrician.

I know a little long winded just my view on the "what is the name of disease/illness your child has" it is not as important as their health and for mom and dad to arm themselves with all the knowledge they can.
This group is wonderful! I love the search option TONS of great info!!
12-04-2013, 11:44 AM   #15
Farmwife
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Completely understand!

Are girls sound alike. I no longer care about the dx's as much as I care about her health.
12-04-2013, 11:57 AM   #16
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Abx that may cause colitis? Yikes! Can I ask what the abx was?
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12-04-2013, 12:07 PM   #17
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Love having Walgreens online pharmacy it makes finding info so easy! It doesn't look so bad reading it now but she didn't get the abx, none the less..

CEFDINIR 300MG CAPSULES

MILD DIARRHEA IS COMMON WITH ANTIBIOTIC USE. However, a more serious form of diarrhea (pseudomembranous colitis) may rarely occur.

Not worth the risk.
I had also just had seen something on the news about research saying AB's were not needed with most sinus infections they would just run the natural course. Not sure Savannah had one anyways.
12-04-2013, 12:17 PM   #18
my little penguin
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DS has taken omnicef numerous times .
Colitis was never a problem
Gi just had us watch and give probiotics .
12-04-2013, 12:30 PM   #19
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Never thought about adding probiotics. Savannah has only taking antibiotics only a couple of times in her life. Her original pedi was always complaining how much they are over prescribed. I have a great deal of respect for him!
12-04-2013, 06:04 PM   #20
my little penguin
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The probiotics were prescription strength since normal OTC probiotics can't really compete with abx. no D either with the abx as long as he took the probiotics.
12-04-2013, 09:37 PM   #21
Brian'sMom
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We've tried various probiotics over the past 7 some years. In our case the probiotic causes problems. Always gas. A few months ago we tried one again: Florastor, it caused leaking in his underwear. It came on 24 hours after starting them...and stopped 24 hours after stopping them. Maybe she dosed him too high...but I'm too scared with all the current problems we are dealing with to try it again. Just not something we can give.
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