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03-18-2015, 01:04 AM   #1
GwensMom
 
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My daughter Gwendolyn (13), is undiagnosed and experiencing her first major flare. She has had diarrhea now for just over 3 weeks (2 weeks with blood) straight and is scheduled for an upper endoscopy and colonoscopy this Thursday. I have so many questions, but the major one that is on my mind at the moment is about the prep for her procedures which we have to start tomorrow. We will be starting the Miralax & Gatorade prep at 12pm and I am concerned about any side effects the prep will cause. Will the prep harm her bowels and cause more bleeding?

She is already going to the bathroom about 8-11 times a day and is hardly eating anything. I am so worried that taking the prep is only going to cause her to go more frequently and that it is going to cause more extensive bleeding. Can the prep be stopped once the stools turn clear? I am so nervous for her and scared that this prep is going to cause more harm then good. I did ask the doctor about it. but he didn't seem concerned at all. Am I just being a scared mom or are my concerns warranted?
03-18-2015, 07:07 AM   #2
crohnsinct
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My daughter was inpatient and just out of ICU when we did her prep. She also had diarrhea with severe bleeding for two weeks prior to her prep. She was fine. Miralax is pretty gentle on the system. It just pulls water into the bowels to get things moving. I know it sounds silly given a lot of the kiddos seem to be clearing themselves out but it really is necessary so the GI can get a good clean view of what is going on. It is important to get the imaging done so you can get a diagnosis and get on with treatment.

Of course you are being a scared mom. We have all btdt.

Our instructions are to stop the Miralax once the stools turn clear but keep up the fluids!

Good luck with the scopes! I hope they provide clear answers and a good plan!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
03-18-2015, 07:51 AM   #3
Clash
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Agree. The prep isn't fun but not harmful either. It is important to keep the fluids up even after you are done with the prep up until the time the doc as list as NPO or nothing by mouth.

I hope all goes well.
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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
03-18-2015, 10:23 AM   #4
Farmwife
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Hi and welcome.
I'm sorry your dd has to go thru all this but scopes in the long run is the easiest part
if your in a bad flare... at least it was for my child.
I hope you get answers and a plan in place soon.
I know the worry and pain of seeing your girl in pain.

Hugs
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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
03-18-2015, 10:50 AM   #5
Crohns08
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For me it depends on the prep. I was always prescribed golightly and it was terrible. I couldn't keep it down and what I could it was painful having all of that fluid surging through my bowels. It wasn't until I read some members' posts on here that I secretly tried their reccomendations. I believe it was magnesium citrate and dulcolax that worked for me and I only took it until stools turned to clear liquid and never had an issue. Miralax is also another that is gentler on the system as well.
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Specific Carbohydrate diet
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03-18-2015, 11:00 AM   #6
GwensMom
 
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Thank you so much everybody! Gwendolyn has started her prep. We are at the waiting stage now as she has only had one glass full so far. All of your kind words and reassurances have calmed my nerves considerably. It always helps to hear from others that have been through our unknown. This forum has a wealth of information and it has been so helpful to just read and prepare Gwendolyn and myself for what may be to come.
03-18-2015, 11:09 AM   #7
my little penguin
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Same as other parents
DS has had 5-6 scopes so far
Miralax plus gatorade is an easy prep
She will have cramping that may be worse
And you may see blood
But a good view is extremely important
DS did his last prep inpatient but all the other we're done at home .
No issues other than not being able to leave the bathroom is very common .
Calmoseptine cream used as a barrier during each bathroom trip will save her skin from burning .

Good luck
It gets easier after a dx
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03-18-2015, 12:08 PM   #8
Maya142
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My daughter also had no issues with the Miralax prep (besides not liking gatorade!). We were told that you can use vaseline as a barrier cream too, and that actually helped quite a bit. Also, flushable wipes.
It took a while for the diarrhea to start but once it did, it really did!
Compared to the prep, the scopes were a breeze. They didn't even put an IV in her until she was asleep, which she really liked (not sure every hospital does this though).
Good luck! Hope scopes go well.
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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
03-18-2015, 01:08 PM   #9
Worried mama
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My son did the miralax and Gatorade prep also and it went smoothly. He didn't go to the bathroom at all for prob 5 hours, then all of a sudden! He just sat on the toilet playing his iPad for about an hour, and then he was done pretty much. It went better than I had expected. He is also 13 and was just diagnosed in oct.
03-18-2015, 01:37 PM   #10
awmom
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My son also did the Miralax prep and it went without a hitch. He did not like the gatorade, so he took most of it with plain water. It did take a while for it to start working (the first time I actually gave him a bottle of magnesium citrate in between because we were worried it wasn't working!!), but it goes very quickly once it starts. Using vaseline in between and dabbing gently was also incredibly helpful as he was already sore to begin with. I hope you get results soon and she gets to feeling better, and please know that we so understand the anxiety and worry that these procedures and health issues bring. Keep us posted on the results.
03-18-2015, 06:33 PM   #11
GwensMom
 
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Prep is not going well. I'm not sure what to do exactly. Gwendolyn has only drank about 2/3 of the liquid required. She has been going to the bathroom, but it doesn't seem to be getting much clearer or any different then what she has been going. It is yellowish in color with some light tan tint. She doesn't want to finish the gatorade mixture at all. We were also told to give her two dulcolax tabs after finishing the miralax and gatorade. If I can not get her to drink the rest of the gatorade should I just continue with the dulcolax? I am trying to encourage her to finish the gatorade, but it is getting later and later. I would like it if she could get some rest before we make the 2 hour drive tomorrow. I just feel horrible for her and hate that she is having to go through this. If I could trade places with her, I would.

Maya142 - Gwendolyn would loooove it if they didn't put the IV in until she was out. She is pretty afraid of needles and being poked.
03-18-2015, 06:46 PM   #12
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My dd was 10 last year when we did the scopes and the prep was awful. We didn't fully get the magnesium citrate down until close to midnight, but we did it and she was clear for the scopes. My dd will only do the miralax with water. Do you have to use Gatorade? Can you mix it with a slushy? We mixed the magnesium citrate with a Sonic Slush and spooned it to her. BTW...I think I drank almost a whole bottle of wine that night trying to get her to drink. Hugs!
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03-18-2015, 06:47 PM   #13
my little penguin
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Typically you have to finish the gatorade miralax prep within 4 hours
I would call the on call GI for specific instructions
If you can get the ducolax in that might help
But not a doc so please call your GI asap
03-18-2015, 07:00 PM   #14
Maya142
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We switched back and forth between Gatorade and water, since she hated the gatorade so much. You could try a different flavor, or try pedialyte or a cup of juice or something else she likes to drink. The use of gatorade/pedialyte is so she doesn't get dehydrated.

Unfortunately, M was going to the bathroom well into the night - it may be the same for your daughter. We covered her bed with a towel in case she had an accident but she was fine when she finally got to bed.

Definitely call the doctor on call, they might want you do try something else if the Miralax isn't working.

Good luck!!
03-18-2015, 07:18 PM   #15
pdx
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I agree that you should check in with your doctor if you can. But I also wanted to let you know that your daughter might be done already, if what is coming out is basically liquid and just has a yellowish/brownish tint. My daughter, like yours, hadn't been eating much, and there just wasn't much to come out during prep. She also could only get about 2/3 the miralax mixture down, but that was enough to completely clear her out. I did give her the dulcolax at the end.

My daughter is terrified of needles and IV's, but we've been able to get through all her procedures with a combination of Atavan and EMLA cream. If she gets a generous amount of EMLA put on an hour before the IV, she doesn't feel it at all. She didn't trust the EMLA would work for her first few IV's, so we also used a small dose of Atavan to help lower her extreme anxiety. Now that she trusts the EMLA, she's able to do blood draws and IV's without the Atavan.

Our regular pediatrician gave us a prescription for EMLA so that we can put it on ourselves at home, to minimize waiting time at the hospital. But you can ask for it when you get to the hospital too. Try to get it put on right away, so that it can be going to work while you're waiting around. It really does need to be on for at least an hour to be effective.

So sorry that you and your daughter have to go through this.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
03-18-2015, 07:45 PM   #16
crohnsinct
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How is it going now?

When O was impatient and we were prepping it was just like you are describing. She didn't want to drink the Gatorade and it was veeeeeery slow going. We were at it up to midnight. The best we got was see through green. The doc said that was fine.

With T we went through two large bottles and a few doses of the smaller bottle and finally just quit at 1 a.m. when she started throwing up. She didn't look anywhere near clear and I thought the scopes would be called off but the doc said he saw everything perfectly fine. Same with O for her last prep.

Both of my girls did much better drinking the Miralax in water, ginger ale or sprite than Gatorade. Maybe try water for a dose or two. We were also told to take a little break and let things work and then if still not clear t go back at it.

I agree to calling the on call GI (they expect prep questions) and take it from there but I think you will probably be fine.

03-18-2015, 07:59 PM   #17
CarolinAlaska
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During my daughters first prep, she stopped wanting to drink the Gatorade MiraLAX mixture. I then started offering her ginger ale, what she willingly took. What she didn't know was that it was half mixed with the Gatorade mixture! Even so, she only drank half of the MiraLAX mixture and she was cleaned out well. Her poops were green but that was her Gatorade color.
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03-18-2015, 08:18 PM   #18
awmom
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we were also worried that what was coming out wasn't completely clear. It never has been for any of his 4 scopes. He never could tolerate the gatorade but was fine with water. I think yellow, tannish was about as good as we got and it was fine. Our adult GI said sometimes they irrigate the bowel a bit if things aren't too clear. We were up past midnight also, and he was tired in the am, but hopefully your little girl will get a lot of rest tomorrow. We also had a 2 hour trip and I was afraid he would need to go during the drive so we were prepared, but he was fine. I hope YOU get a good nite's rest and that tomorrow goes smoothly for both of you.
03-18-2015, 08:29 PM   #19
GwensMom
 
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I don't have a number for the GI on call and I'm not even sure where to call to find out. We have given up on the Miralax and gatorade. She was drinking yellow gatorade and the BM's have gotten lighter in color from first to last. Her last one was yellowish clear with some yellowy sediment like stuff in it. I did get her to drink one more glass after her last BM and got her to take the dulcolax. That was a chore in itself too. She has a hard time swallowing pills. She got the first down with no problem, but then had a hard time getting the second to go down. She went through 3 pills trying to get a second one down. The coating kept coming off and finally she gagged it down and almost vomited it back up. I just hope it is clear enough. I would hate for her to have gone through all this and not get the right results. You all have been life savers in keeping me sane through this.
03-18-2015, 08:38 PM   #20
GwensMom
 
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Typically you have to finish the gatorade miralax prep within 4 hours
I would call the on call GI for specific instructions
If you can get the ducolax in that might help
But not a doc so please call your GI asap
Our prep sheet had us starting at noon and said to take 8oz every 30 to 60 minutes with a total of 64ozs total so it would have taken 6-8 hours. We got delayed when she started going to the bathroom. I figured since she was having BM's we would take it on the slower side and see how things went. I kept pushing the Gatorade after each BM until the 5 time she went. She is in the bathroom again now so I'm hoping that she has enough in her system to keep her cleaning out.
03-18-2015, 08:44 PM   #21
Maya142
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Really hope she can gets cleaned out so you don't have to repeat the prep! Fingers crossed! In my daughter's case "clear" meant yellowish liquid and the GI on call said that was fine.

Many hospitals have Child life specialists who can help your daughter with things like dealing with IVs and swallowing pills. There are also a number of parents on here who had to teach their kids how to swallow pills, I'm sure they will chime in soon.
03-18-2015, 08:57 PM   #22
GwensMom
 
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She just finished in the bathroom again and there is still blood present. I think that is what is causing the tan like coloration. It is mostly yellow though so fingers crossed it's good enough!
03-18-2015, 09:07 PM   #23
pdx
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It sounds like you're good. Hope you both get some good sleep tonight, and that tomorrow goes well.
03-18-2015, 09:35 PM   #24
Tesscorm
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Sorry you've had such a rough time tonight. Preps are not easy.

Good luck tomorrow.
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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
03-18-2015, 10:18 PM   #25
Mehita
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Good luck!
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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
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
03-18-2015, 10:27 PM   #26
Lady Organic
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yes the prep is fine with watery light coloration and very few sediments. She might even experience some relief of symptoms until the colonoscopy. For me, a prep relaxes my colon afterwards and eases my symptoms. good luck.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
03-19-2015, 12:02 PM   #27
DanceMom
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Hope the scopes are going well! Update when you can!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
03-19-2015, 12:28 PM   #28
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Good luck, hope the scopes go okay. The prep is so awful
03-20-2015, 09:13 AM   #29
Farmwife
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Just checking in on how it all went.
Hugs
03-20-2015, 11:12 PM   #30
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The procedures themselves went well. Gwendolyn was very well cleaned out and they were able to get good images. The upper endoscopy was clean, but the colonoscopy showed a significant amount of inflammation. She was admitted. They did a TB test last night and she had a CT scan this morning. The plan is to start iv steroids tomorrow. They also started her on iron, a multivitamin, and vitamin D. The nurses are awsome and taught us a new trick for taking pills with applesauce! Her hemoglobin (I think) was an 8 and they plan on retesting her tomorrow to see if it has dropped anymore since it went from 11 to 8 in just a week. I know they said if it drops to 7 she will have to have a transfusion. She ate really well and drank some boosts today too so we are hoping that helps. Also did a steroid enema tonight and that does seem to have helped a little. I do believe they are leaning more toward a diagnosis of Ulcerative Colitis.
Gwendolyn has been a trooper. She has been in good spirits and has been taking everything in stride. The iron, fluids, and vitamins have really perked her up. I hope to keep seeing improvements with each passing day. Thank you again to everybody who helped ease my mind. I am sure their will be many more questions in the days to come as they start discussing medication options.
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