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Tips and Tricks 101 (or things your GI forgot to tell you) ;)

Tesscorm

Moderator
Staff member
What I have learned from everyone else has been absolutely invaluable to me!! In addition to the knowledge of crohns in general, some of the 'tips' of dealing with this illness have helped me be better prepared for so many things!! :worthy: Also, as time goes on, we have all learned little tricks that have helped us or our children better manage all that comes with crohns.

I thought it might be worth having a thread where we can share little tips and tidbits of info that we wish we'd known 'before'... ;)

It can be related to medicines, doctor appointments, symptoms, school, insurance... anything at all that has helped you or your child cope with any aspect of crohns.

:)
 

Tesscorm

Moderator
Staff member
So, I’ll start with a few little things that I wish I known ‘before’…

1. Stephen had all his childhood vaccinations, all at the appropriate ages. I was not aware that there is a small percentage of people (up to 15%) who do not become fully immunized after these vaccines. I wish I’d been told this BEFORE Stephen began remicade – when we, by chance, found out that he does not have full immunity to mumps, he was already on remicade and could no longer have a booster MMR vaccine. Had I known, I would have had his immunity levels checked prior to commencing remicade.

2. If your child uses an NG tube – take advantage of this when he/she needs to drink the contrasts for tests (ie MRE). The contrasts are not pleasant to drink but can easily be ingested through the NG tube.

3. FOLLOW-UP, FOLLOW-UP, FOLLOW-UP!!! Recently, I was confused over the frequency of labwork done when Stephen had infusions. At one time, his GI told me every infusion, I assumed this was being done… Stephen goes to his infusions on his own but I happened to go once and labwork was NOT done??? Asked on-staff nurse and she said frequency varied according to GI’s standing orders – when I asked what Stephen’s standing orders were, she checked his file said there weren’t any – it was whenever GI requested. This hasn’t sat well with me since… :ywow: So, due to some rising levels from GP (not GI) labwork, I followed up a bit more re his ‘standing orders’ and found that these orders hadn’t been renewed!! The infusion nurse should have alerted the GI’s office when it was coming up for renewal but…. Shoulda, coulda, DIDN’T!! Human error does happen, so, whenever possible, confirm details and follow-up yourself!
 
Good idea Tess!

The first thing that comes to mind is always get a copy of the lab results! Look at them and compare them to the last set of results. Do you see a number trending up or down?Doctors aren't perfect and can miss things. Having copies of these can be so helpful if you switch doctors or if your doctor moves to another practice.
 
Miralax- It can take up to 3 days for the right amount of Miralax to work.
If you have to up the dose do it by 1 tbs. every 3 days.
This is what the GI and his nurse said.

Teach your kids not to push hard while passing stool. This can lead to more problems then what they need. :eek:TRUST ME!

Flushible wet wipes are AWSOME. (updated: Please refer to post 8 & 16 about proper disposal.)

Bottom cream to help sooth and protect the skin from constant wiping.

Have a joint and /or belly ache pain relief kit.
Things like................Hot water bottle, heating pad, microwavable rice bag,
pain meds, movies/video games for distraction
and a mom or dad to hug on them:hug: is always the best medicine.
 
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1. Always get copies of everything. Most doctors will give it to you if you just ask. Keep all your paperwork together so it is handy and bring to appointments.

2. It is okay to get a second opinion. It doesn't mean you don't trust or like your doctor. A good doctor values others' opinions and takes them into consideration. Also, consider seeing a Rheumatologist. We have found ours to be very helpful and we are in the process of exploring several other diagnoses.

3. Keep a symptom log. Doctors usually find that helpful and they can look for patterns and trends. It may also be helpful to record daily temps and weights.

4. Teach your child to be informed about their medications. From the time my girls could speak they knew the names of their medications, the dosage, and the reason they needed it. It teaches them personal responsibility and you won't worry as much when they are away.

5. Small amounts of blood aren't easily visible in stool. If you think there is a possibility of blood it is easier to take a picture of the stool instead of leaning in and trying to peek in the bowl. The flash lights things up nicely and then you can zoom in and inspect. It can be helpful to have an image to document and send to doctors as necessary. My daughter will even take pictures of suspicious poos and send to me if I'm not home.
 

Tesscorm

Moderator
Staff member
DanceMom's comment about knowing meds, etc. reminded me of something else... :)

As I don't believe crohns nor the meds necessitate a medic alert bracelet (correct me if I'm wrong! :)), etc. I don't insist Stephen wear one of their pieces. However, I did write up a wallet card with his basic info, diagnosis, GI's name/hospital/number, GP's name/number, his medication/supplements and dosage and every possible contact number for me (...hubby too)! :lol: On the back, I added, live vaccines should not be given with remicade and caution when administering nsaids with crohns.

This card came in handy when S was injured in Dominican Republic and had to go to the hospital. He was having a tough time communicating with the doctors and then remembered he had the card with him, gave it to the doctors and they then understood what he was trying to say. :)
 
What a great thread Tess! I can't think of anything to add at the moment except Farmwife, no wipes are truly flushable and all will clog toilets. My husband is a master plumber and he tells this to every client. If it has not happened to you yet you have been lucky but it will eventually happen.
 
What a great thread Tess! I can't think of anything to add at the moment except Farmwife, no wipes are truly flushable and all will clog toilets. My husband is a master plumber and he tells this to every client. If it has not happened to you yet you have been lucky but it will eventually happen.
:awe:


:eek:So what do you do?
 

my little penguin

Moderator
Staff member
Medic alert is basically what you describe Tess.
24 hour service around the world.
that keeps your conditions, doctor's name , drugs etc.. all up to date
It comes with a wallet card and you can get one as a watch, pendent, dog tags or traditional bracelet.

much better than a slip of paper in the wallet ;)

DS has one for other reasons but would have gotten one for IBD if he didn't already have one. so much easier

http://www.medicalert.org/products/kids

GI stuff
get a CD/pdf of all records ( doctor's notes, test reports( including labs etc) at least once a year . this way its all in one spot and ordered for when you transfer from pediatric to adult GI. (just in case.)
 

Tesscorm

Moderator
Staff member
Thanks MLP... I remember we talked about this before but I thought a 'wallet card' was one of the few things they didn't have! :) Will have to look into it again, would certainly be more instantly recognizable than just a plain white card.
 

my little penguin

Moderator
Staff member
The wallet card is lamented with the doc info and conditions plus contact emergency numbers.
The bracelet /watch/dog tags etc... are engraved with the as needed info(EMT) as determined by medic alert. with an id number
 

rygon

Moderator
From personal experience, ask for blood test levels and not if they are ok or not.
For a while I was feel tired all the time, yet when I asked if my iron was ok they said yes, it was ok. When I finally asked what it actually was it turned out to be 14 which was above the limit (12), but I'm normally in the 50/60s. As soon as I started taking more iron I felt much better
 
Best tip I have: make sure to get your kid's blood test done a few days BEFORE the appt with your GI doctor. Then you can really see how things are going and make an informed decision while you're with your doctor, not make a whole lot of potential plans that depend on what the labs show. Yes, it's a shlep to have to go twice to the hospital, but well worth it, in my opinion!

I also keep a binder for each of my kids with all of their medical info, lab work results, etc in it. I have been able to find things in my giant binder quicker than the doctor on the computer!
 
I LOVE Medic Alert for kids. It's so easy to update online and keep records on. No one will ever go looking for DS's appendix because Medic Alert says he doesn't have one. When he has a change in meds, I just print his report and send it to the school nurse. It's quick, easy, and simple.

If within 15 minutes your kiddo isn't making good progress on the MRE contrast, have an NG tube placed. Way easier and better pictures because they get all the contrast in.

Most children's hospitals have Child Life programs. Use them, they are wonderful. Ours even makes notes on how well DS has tolerated certain procedures and the doctor gets a report. I think this is great because the dr usually isn't around for the administration of enemas or insertion of NG tubes. They usually have comments about parents too. I've been labeled as "calm" and "child responds well to mother". Gives me some street cred with the doctors!

Emla cream or J-tips for needle pokes! You can get a prescription for Emla cream and put it on at home before blood draws. Hold it in place with Press 'n Seal. Works like a charm.

If your Mommy (or Daddy) gut is telling you something isn't right, listen to it.

If a child tells you they "think" they might throw up... they will. Guaranteed.

If your kiddo is ever hospitalized, make sure at least one person comes to visit, even if it's just a sibling. And therapy dogs visits can be pretty amazing!

In teaching hospitals, you can say no. DS had a ridiculous number of people look at his perianal abscess. After awhile he'd just roll his eyes and flip up the sheet.

Last, yes, the meds can be scary... until you see them work for your child. Try not to let YOUR fear prevent your child from feeling well again.
 

DustyKat

Super Moderator
What a fab thread Tess and brilliant suggestions! :thumleft:

Even if you are on top of meds and supplements consider a dosette:
1. During those forgetful times :wink: it is very easy to check if meds have been taken or not.
2. When your child reaches the age that of taking more control of their health it is much easier to glance at a dosette rather than us asking x amount of times a day if they have taken their meds.
3. By packing meds in advance you have adequate time to organise scripts and ensure continuity of supply.

For those with younger children this won’t be applicable but for those of us with older children and for the adults reading this consider taking someone with you when you attend specialist appointments. They don’t have to be in the consult the entire time and for those transitioning from paediatric to adult care I think time alone with the specialist is invaluable but for some of that consult time an extra set of ears and eyes is also invaluable.

I agree wholeheartedly with getting copies everything and amongst that everything that I found especially helpful is the copy of the letter from the specialist back to the GP. It sums up the whole consult and sometimes contains information regarding recommendations for ongoing care planning that isn’t always discussed in the consultation.

Dusty. :)
 
This is awesome idea!! Can someone make this a "sticky" topic that will stay on the top as a *strongly recommended* read for New Members?

My first thought Mehita said - as a parent/caregiver if you think something isn't right, keep following up, you know your child best.

Remember just because a specific diet, medicine, therapy, schooling, whatever didn't work for someone else, doesn't mean it won't work for your child.

Come up with a good line that works for you when someone offers you advice that you've heard 100 times already; mine is, "I really appreciate you thinking of us."

Never, never, never give up, but it's okay to cry every once in a while.
 
For those in the US make sure you get a 504 in place in school for your child. It can start out basic like anytime access to restroom and abscenses to be counted as medical leave so they do not count against them.

Of course as everyone says, copies of everything and a binder to keep it all in.

Make a list of questions for the doctor before an appointment. You are much less likely to forget a question. I sometimes just hand him my list.

Keep an open mind about medicines and treatments - Never say "never" it could be the "magic pill" that brings remission for your child.

Have their vitamin levels checked - B12, D, Magnesium
 

CarolinAlaska

Holding It Together
Keep a calendar of major trends: stools, abd pain, joint pain, meals eaten, number of shakes, current meds, other significant symptoms. Keep it updated when adding or taking away meds. Keep weekly weights on it. I find it invaluable at GI appts.

Low Zinc levels can cause anorexia.

Nutritional shakes can be drank when child refuses to do NG tube. It may take switching things around now and then to get the right flavor/texture, etc.

Culturelle helps keep the GI flora in order

If you live up north, you and your child's Vitamin D is probably low, and most GPs will undertreat it. I find my own stress is much better handled with 5000 units of vitamin D3 daily :)

Stress and anxiety are major flare-factors for my daughter. Haven't found a perfect answer for these yet, but homeschooling has made a world of a difference.

Not all gluten-intolerance is Celiacs. Gluten-free diet = no more lifelong diarrhea in my daughter's case, even though she's had negative celiac tests with or without gluten in her diet.

There are more than one way to bring a child to remission, if you can't come to grips with one way, ask questions of your GI about other options you'd like his/her opinion about.
 
Hello, as CarolinAlaska mentioned Stress and Anxiety can effect symptoms (flare factors) I home-schooled and incorporated the teaching of meditation, relaxation, visualization etc. as part of the curriculum. It can be a valuable tool since it can calm when test, illness, etc. are anxiety producing. It can be a positive self soothing tool and has a possibility to gain comfort with a very uncomfortable illness. It is something parents and children should know how to do as it can be a stress reducer. It is natural and free.

Coconut water can work very well for dehydration for some.Ask you Dr.

B 12 should be checked - damaged, scar tissue, or inflammation in the terminal ileum has the possibility to hinder b12 absorption and can cause a deficiency even without a resection. Lack of b12 in the body has many symptoms from increased diarrhea, fatigue, depression/anxiety, nerve damage, memory loss, brain fog, etc.

Having a clean up kit: wipes, fresh underpants, pants etc. on hand when away from the home can be helpful for just in case diarrhea, fistula, abscesses are present. It can give added calm which has the possibility to avoid a embarrassing situation or if one arises you are prepared.

A food journal can be helpful since there can be food triggers that have the possibility to effect symptoms. It can help find what makes things worse or better while in a flare or when not in a flare. Some things can be eaten while symptoms are at bay but not when a flare is present.

Nutritionist should be part of the team. Nutrition is an important part of how we feel with IBD. Nutrition can effect how our energy, healing, growth, symptoms, etc. are managed.

IBD can be a lonely illness. It can be embarrassing and painful. Being chronic with a wide range of symptoms ~ having someone to talk to openly is helpful. Many of us say we are fine when we are simply managing but do not want to bring others down.

I hope it is okay that I posted here ~ I am the one with Crohn's.
Hope you all are doing well. I pray for a cure for ALL of us.
Much peace.
 
IF* that was great advice. Thank you.

I think that's great advice. The clean up kit is so importants for kids/adults of all ages.
I keep one in my car and another at Graces school.
 
Oh, I have one more!

GI's aren't always right. They are putting the clues together and making highly educated guesses... but they're not always right.
 

Tesscorm

Moderator
Staff member
I want to add what Dodie74 mentioned about cravings for ice/ice chips - this can be a sign of anemia...

But, I also wanted to add something else... sometimes the early signs of crohns or a flare can be subtle and not happen overnight and they can often be explained away with possible explanations. I know, prior to Stephen being diagnosed, he started to fall asleep for a couple of hours after school... yeah, he's a teenage boy and recently started a new school phys.ed. program working out 2 hours every day - sure he's tired. He's losing weight - yep, it's all that extra exercise. He looks so white - ah well, he's always been fair skinned and it is February, of course he's white as a ghost. Those mouth ulcers - oh yeah, he just started using a new toothbrush, that makes sense. His heartburn - well, his dad and uncle have reflux issues, yep, GP is right to just prescribe nexium, makes sense too. His back ache that won't go away... well there was that injury six months ago plus the ongoing hockey and he's tall so he slouches and he's had a big growth spurt, not everything (bones, muscles, tendons, etc.) have grown at the same rate, etc., etc., etc.

In hindsight, sooo many symptoms but when they came one at a time, they became 'normal'. So my point is don't compare how your child (or you) feels/looks to last week or last month, compare how they feel/look to last year or before ANY symptoms started and then judge if something seems wrong.

Now, having said all this, (and, I guess this is more for the new parents, us oldies are, unfortunately, all too aware of the symptoms) I'm not saying we should all jump at the first sign of something because we all feel tired at times or nauseated or have constipation/diarrhea but if it doesn't go away and then something else is added to the first symptom, then that's, maybe, when to start thinking 'hmmm'.
 
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Jennifer

Adminstrator
Staff member
Location
SLO
Lots of great tips in here. :)

Don't rely on the appointment cards you get at the doctor's office cause those easily get lost all the time. Add your doctors to your cell phone or any clinics that you may need to call. Also keep track of their fax numbers (lab fax number and pharmacy fax number too).

Keep a mini calendar in your purse to keep track of appointments to make sure they don't overlap (you could add it to the calendar in your cell phone as well, especially if you don't have a purse).

For those with a purse, get a bigger purse. There's never enough room.
 
COUPONS, COUPONS and more COUPONS!
No shame in collecting coupons of your favorite toiletries to save a buck.
Stock pile if you can.

Don't go cheap on the toilet paper! I buy the best. I figure it's the least I can do to make her a little more comfortable in the bathroom.
 
Ive started recording my GI appointments on my phone. A lot of questions are answered in a short period so its very useful to have a copy to play back. Especially for someone like me who is new to crohns and has so many questions.
 

CarolinAlaska

Holding It Together
I like that Paxxy! I used to record all my professors in college so I could take notes with less rush later... It would be even more important in this case!
 
For those with G-tube's or J-tubes or GJ-tubes. Diaper rash ointment (we used Balmex) works great to protect the skin from the stomach acid that leaks. Place an IV gauze over the Balmex and tape the two ends together. If you don't have IV gauze, than a small square guaze will do. Just cut a slit in one side that goes halfway through the gauze and wa la! You now have an IV guaze.

Be careful about recording a doctor visit without the doctor's or those present, premission. It is illegal to record conversations in some states.

For those in the US. If your child has a 504 plan, make sure every teacher is aware of it and is following it. Sometimes the 504 plan is worked up with smiles on the staffs faces and then promptly filed never to be viewed or shared for the school year.
 
DanceMom's comment about knowing meds, etc. reminded me of something else... :)

As I don't believe crohns nor the meds necessitate a medic alert bracelet (correct me if I'm wrong! :)), etc. I don't insist Stephen wear one of their pieces. However, I did write up a wallet card with his basic info, diagnosis, GI's name/hospital/number, GP's name/number, his medication/supplements and dosage and every possible contact number for me (...hubby too)! :lol: On the back, I added, live vaccines should not be given with remicade and caution when administering nsaids with crohns.

This card came in handy when S was injured in Dominican Republic and had to go to the hospital. He was having a tough time communicating with the doctors and then remembered he had the card with him, gave it to the doctors and they then understood what he was trying to say. :)
,,,,,Hi..it depends on the meds that ur son is on?? if on inflixmab then it is imperative that he carrys a card with him should anything happen..the hospital should have given him one when he started his treatment...:)...
 

Tesscorm

Moderator
Staff member
Thanks dsullerton, I didn't know it was essential with infliximab - neither his GI nor the infusion centre ever mentioned it. :eek: I'd only given him the wallet card as a precaution.
 
I saw this thread started by SarahBear on Scope Prep Ideas. It's very good and a lot of info. Please make sure to ALWAYS check with your GI if they can be done for children.

PRESS HERE
 
My daughter is 20 years old, with crohns, we have in a backpack a portable potty with disposable bags, wipes, clothes and underwear. During flare ups as I drive her places or she drives herself, sometimes there is no restroom in site, she busts out the potty and voi la. She is so happy I found that on amazon, it is a kids potty but works all right for her. It is called Kalencon Pottete.
It saved her from embarrassment so many times. It took several accidents before I found this.
 
-When in the hospital find a Child Life specialist to work with your kid. Everytime you go for clinic appointments go visit this person and do some play therapy. It is good for your kid to have someone they trust in the hospital. This for us has been better therapy than any psychiatrist ever has even came close to achieving.

-When emptying an ostomy bag always put toilet paper floating on the water first. This will stop it from spashing and getting on your clothes.

-When you question your doctors ability to treat your child, get a second opinion.

-Most doctors do not believe in nutrition as a treatment. If you want advice see a nutritionalist or a naturalist. These people know better.

-Ostomies are not really scary. They can drastically improve this disease quickly for most.

- Colons are overrated! At least the diseased failing ones are.

-Mesalamine like Asacol, Lialda, Pentasa, Rowasa, Canasa actually cause colitis to worsen in 8% of people with IBD.

-You can transfer care from one Teritiary hospital to another teritiary hospital and your insurance will cover it.

-Second opinions are very imporant before doing anything drastic.

-All surgeons, GI, specialist are not created equal. Some are great, some are mediocre at best.

-Bidets are awesome! Tp is overrated in the USA.

-VEO IBD is considered a spectrum Disease it can start as UC and become CD.

-Removing the Colon for UC is not a cure. It makes the disease WAY more manageable if it is extremely severe but still there is a high rate of morbidity! In order to cure something you need to know what caused it. Much like Radiation doesnt cure cancer it kills it. (The doctors are wrong and so is CCFA)

-The only way to cure a disease is to find the root cause and correct the imbalance or wait for a vaccination.

-pulverized All Bran cereal works better than Miralax. Just sprinkle some on your nutbutter or sunbutter sandwiches and wow you can poop. (Not for the Gluten intolerant)

Last but not least! GO WITH YOUR GUT... IT DOESN'T LIE!
 
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If one of your child's symptoms is a skin tag, watch for it to inflate/deflate. It can help you distinguish symptoms of a flare from symptoms of typical Gastro illnesses.
 

Tesscorm

Moderator
Staff member
Being diagnosed a a young age meant getting rectal exams on a regular basis. To say it caused anxiety is an understatement. A pediatric surgeon gave me a tip that made it easier.

As the doctor is about to insert a finger, have your child push out as if going to the washroom This will relax the muscles and make it easier. (I always clenched which made it worse)

Tell the doctor first so he/she knows what's going to happen.

I hope this makes the exam go a bit easier for your children.
..
 
Tip for covering up the bad taste of certain medicine tablets: (Flagyl, Prednisone, etc)

My son was prescribed the dreaded Flagyl after his MRE yesterday. He hates how it tastes. And its 3x a day.
So today I searched some tips and I found this. I had to post this:

To wrap the pill in a piece of Fruit by the Foot or a piece of a Fruit Rollup. We just did it. It worked so GREAT that I had to post it.
 
The article below references using whole milk vs. Volumen contrast for MRE. Recently, Nov 2014, my friend showed this article and a few others to the radiologists at our local Children's Hospital when her son with Crohn's went for his MRE. He couldn't keep the contrast down and the nurses couldn't get the NG tube in after 3 tries! the radiologist agreed to do the MRE using whole milk instead. Following the MRE, the radiologist noted the images were clear, saying that if the contrast was 100% effective, the milk was 96% effective. I am going to insist my daughter drinks milk instead of that horrible contrast fro her next MRE. We Crohnnie Moms need to stick together and share this information so that we can minimize the suffering our kids have to endure.


Cost-effectiveness and patient tolerance of low-attenuation oral contrast material: milk versus VoLumen.
Koo CW1, Shah-Patel LR, Baer JW, Frager DH.
Author information
Abstract
OBJECTIVE:

The purpose of our study was to prospectively compare the cost, effectiveness, and patient tolerance of milk and VoLumen, a 0.1% barium suspension, in patients undergoing abdominal and pelvic CT with oral and i.v. contrast media.
SUBJECTS AND METHODS:

Two hundred fifteen consecutive outpatients were randomly assigned to receive either whole milk (n = 115) or VoLumen (n = 100). Results were independently reviewed by two radiologists who were blinded to the oral contrast agent used. Degree of bowel distention was qualitatively scored on a 4-point scale, and bowel wall visibility was graded qualitatively on a yes-or-no basis. A questionnaire regarding oral contrast tolerability was provided to each patient. Cost comparison of the two agents was performed.
RESULTS:

No statistically significant differences were seen between whole milk and VoLumen with respect to degree of bowel distention and mural visualization for all segments of bowel studied (p > 0.05 for both reviewers). Significantly more patients ranked milk as pleasant in taste compared with VoLumen (p < 0.0001). More patients preferred milk compared with VoLumen (p < 0.0001). Milk was better tolerated than VoLumen, with fewer abdominal side effects, including abdominal discomfort (p = 0.019), cramping (p = 0.019), nausea (p = 0.016), and diarrhea (p = 0.0002). The cost per patient for VoLumen is $18 compared with $1.48 for milk.
CONCLUSION:

Whole milk is comparable to VoLumen with respect to bowel distention and bowel wall visualization and has a lower cost, better patient acceptance, and fewer adverse symptoms. Milk is a cost-effective alternative to VoLumen as a low-attenuation oral contrast agent.
 
I've read that article before. Doesn't one of the kids on here use whole milk maybe carolinalaska? C would do way better with the contrast even if ng than whole milk. He has only ever had 1% so he thinks whole is disgusting! Haha
 
Please check out my blog on living with crohns as a teenager/young adult. I was diagnosed at 17 but had active symptoms since 12 years old. You may find some helpful or useful information in there.
 
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Best tip I have: make sure to get your kid's blood test done a few days BEFORE the appt with your GI doctor. Then you can really see how things are going and make an informed decision while you're with your doctor, not make a whole lot of potential plans that depend on what the labs show. Yes, it's a shlep to have to go twice to the hospital, but well worth it, in my opinion!

I also keep a binder for each of my kids with all of their medical info, lab work results, etc in it. I have been able to find things in my giant binder quicker than the doctor on the computer!
Woops! Here's my reply... I think this is a great idea...I'm going to start keeping a binder...instead of pieces of paper randomly strewn about my house... I keep hoping this will all go away. But, then it comes BACK! :ybatty:
 

CarolinAlaska

Holding It Together
I've read that article before. Doesn't one of the kids on here use whole milk maybe carolinalaska? C would do way better with the contrast even if ng than whole milk. He has only ever had 1% so he thinks whole is disgusting! Haha
Nope, not us. J would have prefered it however!
 

DustyKat

Super Moderator
Our local radiology now uses milk. Matt was supposed to have it when he had his MRE in May but they blundered and told him to use psyllium (that is what they using before they changed to milk).
 
Milk instead of contrast?! I just mentioned this to my son, and he said, "let's move to wherever they're doing that!". He has such a hard time getting the contrast down and keeping it down. I will inquire about this next time!
 

my little penguin

Moderator
Staff member
Check way ahead of time
It's not standard at all in the U.S.
Not sure on Canada
Be prepared to provide studies and get push back
 
Oh My Gosh! Our journey has just begun with my precious 10 year old grandson (diagnosed less than a week ago) and I am determined to know and learn as much as I can for him. It is scary, but knowledge is the key for that I hope. Already I have a page of notes that I would never have thought of. Thank you and I am going to keep reading and hopefully can contribute as well.
 
Very helpful thread. Can anyone share thoughts on:
(1) morning nausea - how common? my 17 yr old seems to have this when tired/stressed but want to make sure it's not a reaction to a stricture or methotexrate.
(2) SIBO with Crohn's and how you manage those two problems together? Our DR is recommending rifaximin every 10 weeks or so now that we've had 3 recurrences of SIBO
 
I have a tip for kids taking oral methotrexate.

My daughter takes 15 mg of oral methotrexate weekly, in the form of six 2.5 mg tablets. She doesn't have big side effects from it, but it does make her a little nauseated the night she takes it. She also doesn't like the taste of the tablets, and she had started to associate the taste with her feelings of nausea, which was making her dread taking the pills.

We started putting the tablets in a large empty gel capsule (size 00 will fit all six). The capsule is large, but it goes down easily, and now she doesn't have to taste the mtx. In addition, we give the capsule at bedtime, and since it takes a few minutes for the capsule to dissolve, it gives her a little more time to fall asleep before the nausea hits.

I've read on other forums about parents using this same technique for other bad tasting medicines. Please check with your pharmacist or doctor before doing this, because drugs are formulated to be absorbed in different ways, in different parts of the digestive system, and you don't want to interfere with that, of course.
 
-When in the hospital find a Child Life specialist to work with your kid. Everytime you go for clinic appointments go visit this person and do some play therapy. It is good for your kid to have someone they trust in the hospital. This for us has been better therapy than any psychiatrist ever has even came close to achieving.

-When emptying an ostomy bag always put toilet paper floating on the water first. This will stop it from spashing and getting on your clothes.

-When you question your doctors ability to treat your child, get a second opinion.

-Most doctors do not believe in nutrition as a treatment. If you want advice see a nutritionalist or a naturalist. These people know better.

-Ostomies are not really scary. They can drastically improve this disease quickly for most.

- Colons are overrated! At least the diseased failing ones are.

-Mesalamine like Asacol, Lialda, Pentasa, Rowasa, Canasa actually cause colitis to worsen in 8% of people with IBD.

-You can transfer care from one Teritiary hospital to another teritiary hospital and your insurance will cover it.

-Second opinions are very imporant before doing anything drastic.

-All surgeons, GI, specialist are not created equal. Some are great, some are mediocre at best.

-Bidets are awesome! Tp is overrated in the USA.

-VEO IBD is considered a spectrum Disease it can start as UC and become CD.

-Removing the Colon for UC is not a cure. It makes the disease WAY more manageable if it is extremely severe but still there is a high rate of morbidity! In order to cure something you need to know what caused it. Much like Radiation doesnt cure cancer it kills it. (The doctors are wrong and so is CCFA)

-The only way to cure a disease is to find the root cause and correct the imbalance or wait for a vaccination.

-pulverized All Bran cereal works better than Miralax. Just sprinkle some on your nutbutter or sunbutter sandwiches and wow you can poop. (Not for the Gluten intolerant)

Last but not least! GO WITH YOUR GUT... IT DOESN'T LIE!
Hello seems like you know a a lot. My 11 year old been on pentasa 500 for a year.she recently flared up what do you think of Imuran or humira which one has the least side effects as the GI would want to change as pentasa seems to lost its effect
Any thoughts
 

my little penguin

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Tamtam

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Imuran has a high risk of lymphoma
Most GI use methotrexate instead for kids

Ds has been on humira for 5 years. Plus methotrexate

No real issues
It has worked wonders for his Crohns
 
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