How do I politely Tell an Inlaw to F-off?

So, ya'll know from my whining that I'm miserable right now. My family and in laws have recently become aware of my disease and know I'm in bad shape at the moment. They've all been great except, I've gotten a couple of e-mails from my husband's aunt (a person I hardly know, met her twice in 12 years) about The Maker's Diet and how if I just cut out dairy and gluten I will be cured. She's sent two messages to me so far and I haven't responded because I am trying to figure out a nice way to tell her shove off. I appreciate that she's trying to help but getting messages about how to "cure" myself with diet and her suggestions that it will just take will power are making me angry. Suggestions?


Jennifer
Diagnosed: 7/08 Mild left sided UC
Current Flare started 12/26/09: Severe Inflammation through Entire Colon
Current Meds: Prednisone 60mg, Asacol (3) 3xday.
Past Meds: Mesalamine, Canasa, Hydrocortisone Enema & Supp.
I've hit rock bottom. Trying to get healthy!

I think we have all had to deal with a relative like this!

Thank you for taking the time to email me with advice on how to treat my illness. However, UC is not a food related disease. Sure there are some foods that aggravate the symptoms when UCers flare, but it doesn't cause the illness or make the illness worse. Also, there is only one cure for UC and that is surgery to remove the colon. There are no diets or drugs that will cure this disease; it is life long and I will periodically have flares followed by long remissions. I am under the care of a GI whom I respect and trust in managing my illness.

Blah, blah, blah.......

good luck!

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Beautiful note, Suebear!!
And I'd include a link to some brochure from the ccfa.......


Age 54. Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills/day, cortenemas, Rowasa
Metamucil - 2 doses/day since '86, and psyllium seed powder
VSL#3DS, Multivitamin, Calcium and D, Flax Seed Oil
melatonin
homemade yogurt each day
Ryzolt for arthritis pain
Son, 16, dx pancolitis 2007, in remission :-)

Great response, Sue! Then if she persists, redirect mail from her to your junk mailbox.

I did that once, and the person later sent me something important that I never saw. She was upset, and I just told her "I'm sorry, but I had to block you because the diet e-mails were increasing my stress level and helping to keep me sick."

Never feel guilty and never apologize for defending yourself from well-meaning but pushy people. Once you've educated them, you've done your part.

Or, you could just have your husband talk to her, because she's his family.
My first thought was "Why should you be polite?" Ha! :)

I like Sue's response, though. It's polite, but to the point. If she persits, I'd probably say something like "After you go to medical school and complete a residency in in gastroenterology, I'll listen to your suggestions regarding my UC. Until then, I'll follow my gastroentrologist's advice. Cheers!"


Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 

That is right up there with if you just prayed enough then you would be cured. (Yes, I have had someone say that and also had someone say that I was not really sick.)


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

I really feel your pain. I think there is at least 1 person in the family who thinks they know the cure, mine is my Mother-In-Law. She doesn't understand why I just don't go have the surgery to remove my colon and be done with it. I told her tons of times that I'm 39 and there is so many studies going on that it is possible to find a cure in my life time but once you get your colon removed there is no going back. My husband has told her repeatedly to drop it. She does for a while then starts up again. I eventually got to the point where I just agree with her then she shuts up but I do what I think is right. It is bull crap that people put you threw this and I really liked fruitgirl's response, I'll try that one next time....Thanks


U.C. sufferer since 2002

Oh I can definately relate except I have an in law that I see quite frequently and offers the same sort of advice Ugh!


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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Perfect responses to copy and paste... Sue's and fruitgirl's both in one email.

Does she have any health issues herself?

You could also add that she do the research about UC itself rather than just the regurgitated and desparate cures.

You could also say that if she really understood what it's like to live with UC, she would be asking you more questions rather than giving advice about something she knows nothing about.

I wish you well.....it's better things are out in the open, however.

quincy
My mom still does this even though she knows UC isnt food related. I think its just the age gap and how people were raised back when half these meds werent available. It can be annoying at times but I know she means well. I wouldnt even respond to the emails. Just flag them as junk/spam if you dont want to read them. Some people think anything can be treated with the right diet/natural herbs etc. I have a ton of those self made doctors in my family haha.


Male 30yrs old Bay Area, California

Currently taking:
Prednisone - 0mg <== ohhhh yea!!!!!!
Asacol - 4800mg
Remicade since Feb 2010

Most of my family likes doing the same thing. I had a family gathering yesterday and kept getting asked all sorts of irritating questions from relatives, since they knew I've been at the doctor's and hospital all week. I actually got asked about the gluten thing, despite having explained several times beforehand that the food that bothers me is stuff that's just kinda harsh because it's like rubbing sandpaper on an open wound. I also got a whole 'can you take immodium for it/pepto for it' and 'what's making you sick then?'. And of course, as I'm munching on things, "are you allowed to eat that?"

And my one grandma that now lives with us keeps insisting I need to go back to the doctor. I appreciate her concern but I've only been seeing the doc all week. Not much more he can do for me right now.

My dad didn't get the whole diet thing either until my gastro flat out told him diet really doesn't do much after friday's flex sig.


22/Female/NJ
Ulcerative colitis from rectum to mid transverse colon, diagnosed 3/6/2009, symptoms for 2 years beforehand
Currently on lialda 4x/day, Prednisone 40 mg taper, rowasa 1x nightly, calcium and d, B12, yogurt, fish oil
Allergies: penicillin, sulfa, bee stings, environmental (especially ragweed!), OTC meds as needed

HA HA, I would love to be rude.  My own mom kept insisting that there ought to be something (milk, pepto) I could drink to coat my stomach to keep this from happening.  I think after nearly a dozen conversations I got through to her that none of this would help.  I like a couple of the answers above combined.  But let us know (seriously) if you get the message through.  My coworkers (those who know) didn't get it completely until last week when I had a major flare at work that put me into tears of pain and depression.  I couldn't help it.  As a  43 yr old guy, tears at work are embarassing enough. 


Diagnosed (FINALLY) UC Sept 09
Taking Lialda 2X/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
 
Most recent visit now has Crohn's suggested as a possibility?
 

Ugh, I know how that is. I've had people tell me that I just need to drink Aloe and someone else say I need to take Tumeric and then I will be cured. Or just "watch what you eat". Most people think I did this to myself by eating incorrectly. It's very frustrating


26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to hold out as long as possible until we can try the next surgery
Imodium (4/day), Questran (3/day)

pam-I actually had someone on an amazon.com board say they would never had UC because of their perfect diet, and because they did regular colon cleanses. If it were diet, everyone else in my family would have this far worse than me, that's for sure.


22/Female/NJ
Ulcerative colitis from rectum to mid transverse colon, diagnosed 3/6/2009, symptoms for 2 years beforehand
Currently on lialda 4x/day, Prednisone 40 mg taper, rowasa 1x nightly, calcium and d, B12, yogurt, fish oil
Allergies: penicillin, sulfa, bee stings, environmental (especially ragweed!), OTC meds as needed

I understand it's annoying to get information you don't want but I have to say I WISH someone would have suggested a gluten-free and dairy-free diet to me years ago. It's the only thing that has stopped my bleeding. I have tried various diets for UC over the years and nothing ever worked. The prescription pills never worked either but I kept on taking them.

My DH is the one who pointed out an article he'd seen that made me try diet modification one more time because I was running out of options. Because of the way he suggested it or maybe I was desperate I accepted his suggestion and read the article. Then eliminated gluten the next day. In 2 days bleeding had subsided as it never had in 9.5 years. Later I eliminated dairy and most carbs.

I can only give my own testimony. Your mileage may vary.
If someone I didn't know well had made the suggestion to me I would have politely told them that I had been there and done that.
I did say that when he told me what he read but I also tried it one more time.

You are the person in charge of your body though and you get to make the decisions.

Best wishes for good health

Denise


Ulcerative colitis 10 years
Jan 2010 started SCD diet (tried 5 years earlier no improvement)
Jan 2010 first time in 10 years bleeding stopped, better behaved colon
Started reducing meds 6 weeks after colon improved with diet-all OK
Current diet: eliminated carbohydrates, no dairy except tiny amt. hard cheese, no juice
I eat: high protein (meat/eggs not soy),nuts, non-starch veg (no potatoes), no grains, no bread
Daily: fish oil spoonful, Vit E 1000 twice a day with oil/fat, greens juice, sunflower seeds, probiotic acidophilus pill
Highly recommend: the book "Life without Bread" and the SCD Diet

I have a dear dear friend of more than 20 years who was diagnosed with Celiac around the same time I was diagnosed with UC. She sees the world with Celiac-colored colored glasses and is convinced that every symptom anyone has is gluten-related. I spent a week with her last summer and to my amusement let her feed me all the gluten free crap she has to eat. It so happened I was at the end of my Remicade cycle and was due for an infusion when returned from her place, and that is typically a week when I got pretty symptomatic. So my running to her bathroom frequently put her little theory to rest.

I recently had Step 1 surgery (gave up on waiting for another type of cure, I wanted to live UC free NOW) and since I have a one-person business I had to let my clients know what was up because I had to go on hiatus to recover. Several of my clients e-mailed me to let me know (in spite of my several years of trying all manner of medications and supplements and researching and coming to terms to with the decision to have surgery) that ALL I needed to do was eat this food, avoid that food, take this particular supplement or that, never eat past a certain time, ONLY eat past a certain time ... you name it. I never bothered to respond.

I do like Sue's response though.

Meesh


47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed). Step 1 J-Pouch Surgery January 12, 2010, Takedown scheduled for April 6

NO MORE MEDS! Past meds: 21 Remicade infusions: 1st: 7/21/07; final infusion: 11/21/09; Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Lialda, Canasa; Roweasa; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro; Xanax

I don't have any inlaws as no one dates me, but I do have many friends/acquaintences in my life who have suggested similar things.

It is not only annoying, but almost INSULTING when people suggest things like "why can't you just take pepto?" "Do you eat too much fruit or crappy foods?" As if I've been stupidly suffering for over a decade with this just because I'm too dumb to realize that duh! You just have to eat better. Good Lord, I want to smack those people. If my doctors, who went to school for a decade, can't figure out how to fix me, what makes YOU think YOU can?? I mean honestly. And I think sometimes I come off a little condescending when I reply to them because I'm so overwhelmed by their ignorance/naivety, although I know they're trying to help.

HOnestly, I've tried a gluten-free diet, and it didn't do anything for me. I can tolerate dairy more than lots of other things, so I would never eliminate that since I can eat so few other things.

Each person is different and their treatments are different--that is what makes this disease so frustrating...I think she needs to understand that, and I think Sue's email idea was a great one.


28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, VSL #3 DS.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Colocort Enemas, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Align Probiotic, Vesicare (for urinary retention). 

Iamagardener,
Can I ask why do you think it worked this time? Or had you not tried that combination before?
Thanks,
Navy


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Navy
I have wondered why it worked this last time. The only difference I can think of is that this time I continued making modifications in the SCD diet which allows fruit, juices, homemade yogurt and which I discovered did not agree with my colon. So I removed them.

I know it sounds weird but I tried to listen to my colon instead of my brain. My brain would try and talk me into drinking coffee which I KNOW is not good for my colon but my brain likes how coffee makes me feel. No kidding. It takes a lot of self-control to take all these foods out of my diet that I love and have eaten my whole life. I LOVE bread and donuts and dairy and all the various forms they take. But I love being free of UC hell even more.

And while removing foods I never thought I was doing it for the rest of my life. I might be fooling myself but I think if I can get my colon healthy again then someday in the future I can eat a donut again or (hallelujah) a Snickers bar. But if I can never eat them again I'm OK with that too because the last 9.5 years have been hell and I've lost a lot of my life.

That's my story so far....

Best wishes

Denise


Ulcerative colitis 10 years
Jan 2010 started SCD diet (tried 5 years earlier no improvement)
Jan 2010 first time in 10 years bleeding stopped, better behaved colon
Started reducing meds 6 weeks after colon improved with diet-all OK
Current diet: eliminated carbohydrates, no dairy except tiny amt. hard cheese, no juice
I eat: high protein (meat/fish/eggs,no soy),nuts,non-starch veg(no potatoes),no grains or bread
Daily: fish oil spoonful, Vit E 1000 twice a day with oil/fat, greens juice, sunflower seeds, probiotic acidophilus pill
Highly recommend: the book "Life without Bread" and the SCD Diet

Post Edited (imagardener2) : 3/1/2010 6:30:40 PM (GMT-7)

Gads, it seems that the people pestering Meesh with advice win the green dobie prize for insensitivity! Not even major surgery can convince them that UC is for real: totally appalling. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)