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08-28-2014, 12:04 PM   #1
JenniferJuniper
 
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Unsolicited Advice

Sometimes I feel that because this disease is misunderstood by the general public (I didn't know what it really was until my son was diagnosed!) people tend to give their 2 cents more readily.

I think most people think it's just indigestion, or from a bad diet, or allergies so I have been getting the most annoying unsolicited advice lately! I just got off the phone with a neighbor who wants to bring me a book about a diet (Maker's Diet?) that in combo with drinking aloe vera will cure him without all the medical stuff! (I feel like people would never suggest things like that if he were diagnosed with diabetes or a more common disease)

It's driving me nuts, so I thought I might try to get a laugh by asking about the advice and suggestions you all get from people trying to be helpful.

So far this week, I have gotten the following advice (all unsolicited):

Drink aloe vera and whey combo
Call a local phone in radio doctor
Take extra vitamins
Stop all medical treatments by simply visiting the healing room at church
Drink *insert miracle sell at home drink mix here* (Fruit Plus+, Shakeology etc)
Take *insert vitamins here* (digest-a-cure, etc)
Visit a chiropractor
Eat different foods, drink different drinks...

Your turn
__________________
14 yr old son dx Crohn's 7/14

Severe inflam. in small intestine
Delayed growth & puberty, malnourished, anemic
Remicade & Methotrexate 8/14
Vit D, folic acid, supplemental EN
38 cm of distal ilium removed 7/15
08-28-2014, 12:23 PM   #2
DJW
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I hear you loud and clear. You will find no shortage of "cures" out their. Be careful because some of them can actually harmful.

Sorry, I just noticed I'm giving unsolicited advice.

Apparently yougart is what I need

One word of caution from my many years experience with crohns. Always remember no symptoms does NOT mean no inflammation. Simmering under treated or untreated crohns can cause serious complications down the road.
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

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Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
08-28-2014, 12:26 PM   #3
LauraJ
 
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My 3 yr old isn't diagnosed with crohns but with a whole host of issues no one has an answer for.
The best we've had so far, from a rheumy, about my anemic, not growing, hoarse, constipated, rashy girl, it's just growing pains, tylenol at night, the rest is just coincidence.
Ummm okaaayyyy
08-28-2014, 12:28 PM   #4
JenniferJuniper
 
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Yep, people mention probiotics and bacteria a lot!

It's actually taken on a life of its own at this point and people who hear about the diagnosis 3rd hand are calling me out of the blue!

Not that I don't believe in the power of prayer, but lots of my latest advice givers have a religious agenda. How about praying for the medicine to work instead of banking on a miracle?
08-28-2014, 12:29 PM   #5
SupportiveMom
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My favorite one still is "Maybe if she lived a stress free life she would get better". Yea right, wouldn't we all be better without stress??
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
08-28-2014, 12:32 PM   #6
valleysangel92
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For ages before I was diagnosed I was told that what I was experiencing was ' girl problems ' and evening primrose oil would solve everything.

I've been told more times than I can count to drink aloe juice, someone even suggested some kind of silver compound.

Whenever someone that doesn't know me finds out I'm sick, the first thing I get is 'have you seen a doctor? ' or 'maybe you should take some medicine ' gee, hadn't thought of that...
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-28-2014, 12:35 PM   #7
JenniferJuniper
 
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The aloe thing is very big right now but it's always "I know someone who takes it". I'm not doing a dang thing without checking in with dr, too afraid of interaction.
08-28-2014, 12:59 PM   #8
Pilgrim
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In the past few weeks It's been suggested that I "cook my way out of Crohn's" for my daughter.

It's also been said to me that, "Oh, It's great it's just Crohn's. I know some people with that and they just had to make a few little diet changes. It's an annoyance, nothing worse."

GRRRRRRRRRRR......
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
08-28-2014, 01:03 PM   #9
JenniferJuniper
 
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My mom on the phone said " oh thank goodness it's just Crohn's! I was so afraid it was colitis!"
08-28-2014, 01:57 PM   #10
DanceMom
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My inlaws think I am overreacting because she is always just fine at their house. They can't help but wonder if it is her diet or maybe stress that causes her stomach issues. She always seems like a nervous kid to them. I'd like to throat-punch them sometimes.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-28-2014, 02:18 PM   #11
JenniferJuniper
 
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There aren't many places we can go and wish out loud to throat punch someone and get hugs for it! That little line just endeared you to me
08-28-2014, 02:59 PM   #12
Momtotwo
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Oh, I hear you on this one. I've had - it's not big deal. You just have to avoid popcorn. Because apparently people who know me expect me to go into crisis when I have to cut popcorn out of my son's diet. It's insulting. I've also had- maybe it's just a nervous stomach. You know, because the EGD, colonscopy, MRE, genetic tests, and multiple blood tests are always mistaking nervous stomachs for Crohn's. (Not to mention- my kid is not a nervous kid at all. And my husband and I aren't the type to overtreat nervous stomach with Remicade and methotrexate.) Then the many who say it can be cured with diet because everyone knows someone who did that. My GI drs and pediatricians don't know a single person who did that, but so many of my personal contacts seem to. Isn't that odd?
08-28-2014, 03:00 PM   #13
Momtotwo
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I've also had the advice to stop letting my son drink soda. That would be my son who had about 1 ounce of soda total in his entire life when someone poured him some at a party. But, apparently, soda causes Crohn's.

Anyone else have people tell them they should be thankful it's not cancer. Of course I'm thankful it's not cancer or ALS or muscular dystrophy or many things. But it's still difficult.
08-28-2014, 03:56 PM   #14
Clash
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Ah I got the aloe Vera juice(which btw induces diarrhea... hello) along with some kind of berries just the other day.

I responded with "Do the berries themselves have the surgical experience? Seems odd since they don't have hands. And since my son isn't responding to medicines backed up by studies and now faces surgery, I would definitely need the berries surgical credentials."

To the ones that say to just change his diet. I respond even if was as simple as just changing your diet that is still a huge undertaking for someone. If it wasn't then obesity would not be an issue. And unfortunately, in my son's case changing his diet brought about no change. Thank you."

In the hospital last year(seriously while he was admitted) a little old lady asked about him and said oh my sister has that she stayed away from spicy foods and is fine. Yes lady spicy foods(which my son has never eaten) is what has landed in the hospital for two weeks.

And the list goes on...
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-28-2014, 04:54 PM   #15
Absentminded
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My Aunt (who I rarely speak to) went as far as just randomly sending me a massive tub of aloe Vera gel in the post, with no warning, as shed heard that it was good for Crohn's. While I appreciate the thought, and expense, it irks me that she would think it's ok to just send it.
I haven't used it, as I'm aware that it can have unwanted effects.
It is however good for sunburn and stinging nettle stings (I have used it on these! :-D)


__________________
Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
08-28-2014, 04:55 PM   #16
Maya142
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Oh I hate the "she's just too stressed out/nervous/anxious"...well yeah, if you had a chronic illness (or two) and no control over your life, you would be too!
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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
08-28-2014, 06:16 PM   #17
Khaley
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My former massage therapist was constantly trying to sell me on the maker's diet, as well as acupuncture. She also swore she had a whole host of food allergies that her naturopath cured her of and she was sure he could help me. Then I have a friend who wants to cure me with alkaline water. A coworker with celiac disease wants me to go gluten free and says we can "cure ourselves" through our diets. That's easy for her to say! We know what causes celiac disease! Then, of course, I have the occasional friend who just thinks I'm being difficult.
__________________
Cholecystectomy in 2005
Diagnosed with Crohn's colitis and ileitis 2007,
15cm stricture in distal ileum 2014
Small bowel resection with 3 strictureplasties Aug. 2014
Currently on Azathioprine 150mg, Remicade
08-28-2014, 07:16 PM   #18
my little penguin
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We have had people tell us DS was just skinny - if we sent them to their house he would gain weight. He never has an issue in their house .
If he would just not eat fill in the blank he would be fine.
Crohn's isn't a big deal .
I tell others we follow his doctors advice .
That he won't out grow it or fix it by diet.

That his meds are serious because its a serious disease.

We have learned that no one will actually "GET IT "
Unless they live it .
No one understood when his food allergies were life threatening that it almost killed and just not eating nuts was not that simple.

If it's someone worth educating then I try
If its a stranger .
I just shake my head and keep walking .

Remember they may come up with a cure for crohn's
But you can't fix stupid .
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08-28-2014, 08:06 PM   #19
Jmrogers4
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I remember not long after Jack was diagnosed I was told by someone they had heard coconut macroon's would cure it. What! seriously yummy cookies will cure it. Didn't work he ate the cookies, still has Crohn's.
Was at the hair dressers while Jack was at Camp Oasis and we were chit chatting and she asked where Jack was going to camp, when I said it was a camp for kids with UC and/or Crohn's, she was dead serious when she asked but don't they just poop a lot with that?
Jack when disease is active just generally does not eat so we always got well if he would just eat he would feel better. What don't you understand about when he tells you when he eats it hurts.
Most of the time I just pretend to listen and move on as they are never going to get it but they are just trying to be helpful.
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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
08-28-2014, 09:27 PM   #20
Sef0912
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I was told today that I should drink all natural grapefruit juice and that if I would just stop going to the bathroom when I had the urge, that I would eventually be able to only go to the bathroom once or twice a day. I also like the, "If you would just get more sleep at night, you would be better." It's really hard to sleep when you get still and then are in so much pain that you want to curl up in the fetal position, so you toss and turn all night looking for some way to get comfortable. And, then you get comfortable and have to go to the bathroom.
08-28-2014, 09:33 PM   #21
Pilgrim
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Oh my goodness. I am laughing so hard, I am crying. I think the coconut macaroons started it.
08-28-2014, 10:19 PM   #22
CrohnsKidMom
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I recieved pages of "helpful" printed info from a friend of my mother's who works at a health food store. I also received a host of emails from a friend's mother who gave me tons of naturopathic advice (she is not a naturopath btw, just "into it"). I know they were just trying to help, but what they didn't realize is that some of their advice goes against the dr's instructions.
My all-time favourite is bits of advice that has come from my own mother. Actually, it might be more "blame", than advice. She suggested I gave my son Crohn's by something I ate while I was pregnant with him. Priceless.
08-28-2014, 10:35 PM   #23
Brian'sMom
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My son has been thru A LOT!! Just before he had his ileostomy and had been on TPN for a few months a family member asked me, "Have you tried Pepto Bismal?"
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
08-29-2014, 07:21 AM   #24
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Ha, ha, no kidding my husband just came in and said "this book about organic eating was in the mailbox for you from Leighann? Who is Leighann?" It's a new neighbor I hardly know!

Break out the coconut macaroons!!
08-29-2014, 08:51 AM   #25
Maya142
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The coconut macaroon "cure" may be the only one I'm willing to try. Of course, I'll have to test it for M first!
08-29-2014, 10:12 AM   #26
Jmrogers4
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If I remember right, because there was an article that went along with it, you needed to eat 3 of them each day just one wouldn't work. You know those sound awful good right now we may need to try this one again
08-29-2014, 11:01 AM   #27
Grumpy1
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I like the macaroons one and I make wicked macaroons 3 a day you say??????

I like the eat more fibre and salads you aren't getting enough roughage - which makes me want to pull their intestines out of their noses simply because I love salad and veges and would seriously maim someone for a fresh salad or a non mushy vege
08-29-2014, 11:10 AM   #28
Farmwife
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The coconut macaroon "cure" may be the only one I'm willing to try. Of course, I'll have to test it for M first!
The way we suffer for our children....but it must be done.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-29-2014, 11:15 AM   #29
my little penguin
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^^^ yeah that
DS ate a ton of salad /veggies pre dx loves them.

Also we got if you just have raw honey or my favorite
One from the school - "he hasn't had any dirrhea so he must be playing in the bathroom since he just keeps going in there"...
Hello kiddo has severe constipation with crohn's plus temesus /bleeding rectal prolapse .
So he never knows if he really "needs" to go or if things are just overly inflamed .
I told the teachers to just leave him be and I would worry about it with his doc.
08-29-2014, 11:38 AM   #30
JenniferJuniper
 
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Macaroons on the house!
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