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Crohn's Disease Forum » Parents of Kids with IBD » Tips and Tricks 101 (or things your GI forgot to tell you) ;)


 
12-02-2013, 10:54 AM   #1
Tesscorm
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Tips and Tricks 101 (or things your GI forgot to tell you) ;)

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!! 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.

__________________
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
12-02-2013, 10:54 AM   #2
Tesscorm
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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… 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!
12-02-2013, 11:12 AM   #3
Mom2oneboy
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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.
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
12-02-2013, 11:36 AM   #4
Farmwife
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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. 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 is always the best medicine.
__________________
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

Last edited by Farmwife; 12-07-2013 at 08:10 PM.
12-02-2013, 02:34 PM   #5
DanceMom
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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.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
12-02-2013, 03:51 PM   #6
Tesscorm
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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)! 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.
12-02-2013, 05:32 PM   #7
kimmidwife
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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.
__________________

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.
12-02-2013, 05:36 PM   #8
Farmwife
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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.



So what do you do?
12-02-2013, 06:16 PM   #9
my little penguin
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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.)
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DS - -Crohn's -Stelara
12-02-2013, 06:40 PM   #10
Tesscorm
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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.
12-02-2013, 07:09 PM   #11
my little penguin
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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
12-02-2013, 08:23 PM   #12
rygon
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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
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12-02-2013, 09:44 PM   #13
Sudsy
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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!
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19 y/o dd dx'ed with Crohn's at age 8.

14 y/o dd dx'ed with Crohn's at age 7

11 y/o dd with Celiac just to keep things interesting around here....
12-02-2013, 09:51 PM   #14
Jmrogers4
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Great thread, I can't think of anything to add at the moment that hasn't already been said.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-02-2013, 10:21 PM   #15
upsetmom
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What a great thread. Thanks Tess.
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Daughter dx CD March2012...
(aged 14)

Currently on:
Remicade
125mg Imuran
3000mg Pentasa
600mg Calcium


Dx Premature Ovarian Failure 2014
On Estrogen and Provera


12-02-2013, 10:42 PM   #16
kimmidwife
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FW,
Dispose of the wipes in the garbage pail. We wrap them up and throw them right out like we did with diapers.
12-02-2013, 10:52 PM   #17
Mehita
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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.
__________________
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
12-03-2013, 05:48 AM   #18
DustyKat
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What a fab thread Tess and brilliant suggestions!

Even if you are on top of meds and supplements consider a dosette:
1. During those forgetful times 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.
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12-03-2013, 07:44 AM   #19
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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.
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Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Prayer
Priesthood Blessings
12-03-2013, 10:17 AM   #20
Jmrogers4
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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
12-07-2013, 01:50 AM   #21
CarolinAlaska
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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.
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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.
12-07-2013, 09:39 AM   #22
If*
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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.
12-07-2013, 10:01 AM   #23
Farmwife
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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.
12-07-2013, 10:06 AM   #24
Mehita
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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.
12-07-2013, 04:00 PM   #25
Tesscorm
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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'.

Last edited by Tesscorm; 12-07-2013 at 04:34 PM.
12-07-2013, 07:56 PM   #26
Jennifer
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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.
__________________
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.
12-07-2013, 08:16 PM   #27
Farmwife
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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.
12-07-2013, 08:21 PM   #28
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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.

12-07-2013, 08:25 PM   #29
CarolinAlaska
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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!
12-17-2013, 02:17 AM   #30
Naturelover
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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.
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