I need help dealing with family!!

[My Tummy Hurts]

I am so frustrated!!!

I am in the middle of a bad flare with lots of C and pain galore. Been on prednisone, not working, doc wants to try Remicade...

I am getting a ton of opposition from my family (parents and grandparents who are actively involved in my life) and its really driving me crazy. They are all of the belief that drugs are bad and that I shouldn't be dependant on drugs and that its all about diet. They give me a hard time about diet all the time. They have NO idea what I go through and how much I have altered my diet already but they do not seem to understand that EVERYONE is different with this disease. They think they know everything because my aunt is taking care of a woman in her 70's that has had Crohns her whole life and is on some special diet and taking just pentasa. They keep telling me to take all these special supplements and enzymes and herbs and that I should be able to wean myself off drugs. I went through this same crap when I was dealing with depression, I took antidepressants for years, battling with my mom every time I had to get a refill, finally they convince me I should be able to just take vitamin B or whatever so I stop taking it and guess what slowly but surely I get back into a really, really bad depression. now I'm back on something and they are giving me a hard time about it again. They don't listen!!

And they dont know how much food that I love that I have cut out of my diet and yet they give me the hardest time about drinking pop. I love pop, I NEED the caffeine and it really helps me when I am sick to my stomach. And I keep getting grief from everyone, its really making me mad!

Anyways now I am faced with the Remicade desicion and they are of course giving me a huge hard time about it because of it being such a committment. UGH!!!! Has anyone else out there had to deal with this?!! How do you explain things to your family?? I know its because they care but.... seriously.....

 

[jed]

i was lucky witha very supportive family when i became really ill, but even so, there were still many times some would go on about just coming off all the drugs and seeing what happens.. i think i'd be getting a close up look at a coffin if i did that. eeep!

all those things are pretty much gone for me now (people telling me whats best for me), it just took time for them to realise that they weren't right, they didn't knwo my body better than me, and they dont know medicine better than some of the best specialists in australia... (lol, read something on the internet and suddenly a fricken genious on the subject....)

i dont know the answer for this one MTH, even sending them here to have a read wouldn't convince some people. hopefully time will relax them for you.

p.s. i want that 70 year olds version of crohns, that sounds like a walk in the park

 

[GoJohnnyGo]

Anyone who suggests you ignore medical advice probably has issues of their own.

Jed is right -- do what you think best.

 

[My Tummy Hurts]

I definitely agree, In the end I am going to be stubborn and make my own decisions. It is just so hard to explain to them. And while I trust my current doctor, my grandma went on and on today about the medical industry in this country (which does SUCK) and how its all about money and doctors just push push and push for drugs. I know its true to an extent but then there is also all the medical and scientific proof that the drugs work for sure, as opposed to other stuff being a big maybe. I am afraiD if I stopped drugs I would be looking at a coffin too. But how to get it through their heads is another story. And can I just say I think its really annoying when they decide they think they are experts because they googled Crohn's disease and prednisone and remicade and read a couple things and now they want to tell me what to do. I hate telling anyone what I have because that's what the instantly do, they google it and then try to play doctor with me. Hello, I am the one who has done the most research and like to think of myself as becoming a patient expert. But somehow everyone thinks I'm a big idiot or something. ugh!!!!

 

[My Butt Hurts]

Hey MTH,
You probably don't want to hear this - but soda is SO not goods for your Crohn's. The caffeine can make your bowles over excited, and the sugar can cause inflammation. I love sugary drinks once in a while, but something I have as a treat is unsweetened kool-aid made sweet with stevia. It's an artificial sweetener, but not a chemical one. I use 6 packets for 2 liters. It's very similar in taste to sugar. Bitter at first until it mixes in and chills. I find it in the natural section of the store.

I used to hate taking drugs - but now I'm all for it. What ever works. Again - do what YOU think is best. Do your research and make the best decision for you with your doc. I just started Remi 2 days ago. We shall see what happens.
Good luck - feel better.

 

[D Bergy]

I am not exactly a fan of the medical system either, but to ignore potentially useful medications is just as foolish as people who dismiss everything outside established medicine.

Getting well is not a religion, and it does not require being married to natural, experimental or conventional medicine. I use what ever is useful. I do not care where it comes from.

I use Low Dose Naltrexone, a pharmaceutical and yet experimental. I use Turmeric, Ginger and Fish Oil. Natural treatments. I also use a strictly experimental treatment of Miracle Mineral Supplement.

There is no reason to completely ignore one area of medicine because of someones belief system. Look into the effects, properties and potential side effects of whatever you use. They will give you most of the information you need to make a decision.

There is no one area of medicine that has all of the answers in my opinion.

Dan

 

[jed]

for a while there, i made a rule.

mon-fri - i dont wanna hear your complaints, you're only making me worse so i'm going to ignore you.
sat-sun - you may discuss what you think may help me, if you try push the boundries by forcing me into somthing, please see part 2 of the monday to friday rules.


they learnt quite quickly how to discuss thing in a mature way

 

[GoJohnnyGo]

Okay, we've heard from both Butt and Tummy Hurts. Sometimes I feel like my brain hurts.

I'm sure some folks/friends/relatives are well-intentioned, and yes, the medical community doesn't know everything. Elsewise, they're be a cure, right? Still, you're best off throwing your lot in with the real doctors.

And it's hard to trust yourself too sometimes, because let's face it -- it's a real tough sort of problem to try and sort out. But ultimately, ya gotta go with your gut -- literally.

 

[My Tummy Hurts]

lol, I'm sorry, I guess I should have picked a better screen name, It was all I could think of at the time because it hurts so bad... My brain and butt hurt too though.

I like the rule thing. I think I just want to ignore them 24/7 though. Right now I am so bad off I feel that I just want to do what the doctors say and see what happens.

 

[BWS1982]

Maybe a good analogy may wake them. They seem focused in tunnel vision, merely on individual, anecdotal evidence to derive their opinions and views. Tell them about a forum member here (name is Kev) who has smoked for many years, and every time he tries to quit, his Crohns gets worse, and his docs even told him that the smoking is actually helping his Crohns, but not the rest of his body. Ask your family if they believe, based off one singular case, that starting to smoke cigarettes will be a great alternative to the drugs, because it is helping one other person with Crohns that you know of (and there are many more, it's well known, sadly, that it can stave off symptoms of Crohns, but still be detrimental to the remainder of your health).

If you want as well, ask them to look at some actual literature from printouts on the disease, showing the answer (to which I've seen a dozen different places) that no single diet or solution works with Crohns. To me, that is part of what I'd call "Crohns Disease 101", it's in the most basic of overviews that this disease is very different for each person. At my worst, I was approaching 30 BM's a day, and you have the big C, the opposite, ask them if slowing down my intestines should work for you, and that "obviously, based on anecdotal results", anti-diarrheal meds should be GOOD for you, because they're good for me and many others.

I may need surgery on my colon to remove it, whereas Crohns affects many other's in their small intestine, how would removal of their colon be of any value to treating the disease?

My doctor took me off of Asacol, saying it was probably making me worse because it makes the small bowel secrete more fluid, which makes diarrhea worse, yet, the older patient in your families instance takes it and is doing fine.

I'm just spitballing the many differences us Crohns patients can have in variation/symptomology. Anything that will make them realize Crohns isn't understood by the finest minds in medicine, so why would they have such a firm grasp of it's mysteries.

 

[soupdragon69]

Hi MTH,

I have an older brother whos attitude has always been that I make mountains out of molehills. Because my mother has always had health issues including severe depression and anxiety from I can remember and then gut and food intolerance issues if I ever said I was unwell he would jeer at me and say I was becoming as bad as her.

It put me off for years going to get help because he and the medical profession I did get the courage to ask kept telling me it was all in my head. Lets see... I have been told I had a skin disease because I was fat, I have been told I was depressed and showing physical symptoms and needed to get a life. The first I know now is linked to my crohns, the second was when my thyroid stopped working and depression is a major side effect but the blood tests didnt show it up til I was on medication from a very smart consultant who spotted it. LISTEN TO YOUR BODY it will keep telling you it needs help until you do and it wont be ignored!

Have you thought about the aspect that your depression as chronic as it is could be being fed by the constant war you are fighting emotionally as well as nutrient depletion, never mind the exhaustion. Depression in itself can be overwhelming MTH and you are doing an exceptional job at coping despite all the pressure you are under! That aspect can be addressed when and only when you are able and ready to cope and you are a long way off that now honey. Sort your physical health and your mental and emotional health will follow believe me. The depression can be a sign of major burn out from coping for so long. So ease up on yourself and give your body time to readjust and heal in the next couple of years ok?

I made a point last year when I went back to Ireland that when I stayed with my brother and his wife of taking all my meds specifically in a holdall. I put it under his nose and said do you really think I would take all this stuff if I didnt need to?

I decided some time ago MTH that it is NOT what my brother says that I need to do. What I need to do is what is right for ME! If I dont tell folk that count it cant be fixed and why should I put myself under more stress needlessly and also make matters worse just to keep others happy that literally dont have a clue what its like to live with chronic health issues that ebb and flow on a daily and sometimes hourly basis? Lucky them!

I counted up yesterday I am taking 40 tablets a day including my steroids and antibiotics but I know things will get better and 16 of them are due to my asthma/ gut flaring in the last 10 days.

I know that since starting remicade I have been able to dramatically reduce my asthma meds and I only now average 1-2 bad attacks a year instead of 6wkly. I have 5 skin diseases/conditions diagnosed and I am now down to an extremely mild cream that is only small percentage steroid once a day instead of multiple times and constant intense itching or burning 24/7. I know that if I need to rest I can "allow" myself and not beat myself up for not doing better... does this rambling make sense to you?

As the others have said you have a decision to make but make sure it is the right one for YOU!

 

[catfud]

Hello MTH

I get really frustrated with the people around me thinking they know best and totally disregarding any of the things I try to tell them about how my body actually functions. They seem to think its as simple as 1+1=2. They just don't listen to what I'm saying I often just want to reach for a frying pan and smack them accross the face! :ybatty:

Hang on in there

*starts handing out cake*


soupdragon69

I have read a number of your posts and I must say that more often than not they are an inspiration. You have given me so many new looks in life on how to approach CD and the people around me, especially the ones that are anything but helpful to my condition.

 

[soupdragon69]

Hi Lee,

I read your post on the "my story" thread. Glad to be of help in any way I can! Have my rough days like everyone else here but am generally a glass half full person. You have made my day, month and year Lee with your kind thoughts believe me.

Have just had my infliximab/remicade today and on the tired side. If there is anything I can do feel free to PM me anytime.. Generally what I find is there has to be a logical explanation for things happening but it can be so hard to see the wood for the trees and I try very very hard to put into print what is in my head because I totally understand what it "feels" like.

Hope you start to pick up soon Lee in the coming days and I am very glad you found us! Welcome!! ((hugs))

 

[teeny5]

I don't have people telling me to not take meds, but many that just don't get why I still feel bad when I am on all these meds. Others ask "why don't you just get your colon taken out?" Like it's that easy. I think many just don't understand the disease. I would politely but firmly tell them that you don't want to debate your medical treatment and that you and your doctor have a plan. It is truly hard with family but sometimes you just got to say "butt out!"

Hope things get better for you.

 

[My Tummy Hurts]

Did someone say cake?!?!?! That sounds soooo good right now.....

Well they are finally starting to come around a LITTLE, at least my hubby and parents, as they have seen me suffering and now they see that this is going to help me. I get my first Remicade infusion on Saturday. They are all really nervous and doing relentless research on every aspect of the stuff, ugh, I wish they would just trust me and my docs. Oh well. At least they are somewhat supportive, my other fam still give me a hard time.

Okay I really, really want some cake right now. Where can I get some in the middle of the night... ahh damn insomnia...

 

[TummyTroubles]

Im glad your family is coming around! No matter what anyone says u have to do what U feel is best

 

[Wonk]

I know what you mean. I have people in my life who like to tell me how crohn's isn't a disease but a symptom and I need to find the real cause and cure for my body not take drugs......and its not that I don't believe there is some truth to this view but its easy to believe that when you don't have crohn's. I also have that internal battle in my head where I wonder what these drugs really do, and if there is a better way. My doc today told me that I needed to either try a round of steroids or go directly to the Humira or Remicade. Both those drugs are a huge commitment financially and physically. I would just tell them that you are facing a big decision and you will take their opinions under advisement but do not need to hear it anymore. Good luck with the decision I still haven't decided....