If you JUST... (rant)

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sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 9/7/2008 2:58 PM (GMT -6)   
I'd like to know how many people on this forum hear from their friends, significant others, family... IF YOU JUSTS. If you just eat right, if you JUST excercise, if you JUST take this pill or herb, if you JUST destress, if you just try this.....etcetcetc.

Does it ever get to the point where you want to SCREAM? It's like I WISH they knew how hard it really is! There's really not a simple solution. I feel like I want them to just see for one week what I deal with.

My mother thinks that I'm making it worse than it is. She goes.. tons of people with intestinal problems live normal lives and are fine... don't be so glum. I'm like MOM, I'm not one of those people unfortunately! Holding down a job is hard. When in a flare I can't get out of my apartment. Don't tell me I don't try UGH.

Sorry. It's just... if I hear.. "if you just" one more time....
Kara, 21F Married.
Diagnosed March, 2007, but was going through testing for a year before diagnosis.
Left Sided UC. Currently in a flare.
Medications:
Lialda - 4 pills in the morning w/ food.
Steroid Enemas


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 9/7/2008 3:04 PM (GMT -6)   
I am so sorry Kara, that you are having to hear that. I am blessed, my mother has always had a tender GI track and she and my father totally understand. Now, my parents are 80 and 77 and precious. My sister who is an RN understands as well. My husband is accepting it. Didn't want to at first, but I really think he is now.

This is a very frustrating disease and we are fortunate to have this forum. Wish I could spread my magic wand and make all of our pain go away.

Gigi1227

Diagnosised 8/25/08
Currently Flaring
Canasa
Asacol
Mega Probiotic
Psyllium
Mega Probiotic

Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 9/7/2008 3:17 PM (GMT -6)   
Yeah I know what you're talking about. "If you just did this or that", as if they are an expert in the GI field. My parents are among that group, I think they're slowly starting to get it but one can only hope.
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Prednisone 40mg/Day- Tapering down currently.


UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 9/7/2008 3:24 PM (GMT -6)   
Try being 17 with UC constantly pooing and in pain, trying to balance a job, school, a boyfriend, and trying to lead a somewhat "normal" life. Its HARD. And on top of that my parents are taking the blame for me having UC because my dad has it and hes constantly telling me he wishes he could take it all away..that i shouldnt have to deal with this. Its really hard to be strong but so far i think ive done a good job at it =]
I hope things get better for you and ppl start understanding sweet melody.
Katrina, Senior in high school! =]
Dx with UC March 18,2008
 
Methotrexate shot once/weekly
15mg Prednisone,Iron,Multivitamin,Folic Acid
                                                     
"I can drop bombs with the best of them"
   hahah Can't we all?
 
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 9/7/2008 3:28 PM (GMT -6)   
yes ...Katrina... trust me... I know hahaha. This all started affecting me in highschool... and then my first FULL BLOWN flare and testing to find out why it wouldn't end was when I was dating my now hubby and working and trying to still have fun as a young adult. Not fun.

It's extra hard when both your fam and hubby's fam seem to REALLY not understand. My MIL offers me herbs and crap every time she's visiting and gas x. I'm like.. yah.. that's it.. just a little gas! UGH.
Kara, 21F Married.
Diagnosed March, 2007, but was going through testing for a year before diagnosis.
Left Sided UC. Currently in a flare.
Medications:
Lialda - 4 pills in the morning w/ food.
Steroid Enemas


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/7/2008 4:04 PM (GMT -6)   

Guess I was one of those who did not understand for so many years.  Sorry now for some things I said but I honestly was trying to help friends, etc.  Being a senior is no fun with this either - husband and family like to go out to eat, shop and travel - none is easy!  Hang in there.  Accepting is first step and doing all you can to get the right treatments.  I am also obese and of course many think if I would lose about 70 lbs. I would be fine!  YAH, sure!  One thing you can do is look around at those worse off - my husband is fighting Stage 4 lung cancer and you would never know it - what strength and attitude! 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/7/2008 4:33 PM (GMT -6)   
Years ago my mother-in-law would say to me, "big girl!" like I was a child when I agreed to do something I really didn't want to do, like go for a boat ride. Can you imagine? I can't stand her, now I remember why!

Even my husband, who is wonderful and has endless patience with me, used to think it was funny to say "someone needs to check into a graveyard!" when there were bad smells. He now knows it is a stupid, stupid thing to say and is very sorry.
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 9/7/2008 6:00 PM (GMT -6)   
My family and friends have all been great. The worst person is my FORMER GP. I would tell her that stress impacts my UC. She kept telling me to run around the block. I then said that if I am in flare that exercise made it worse. To which her reply was run around the block again.
Age: 48
location: Seattle, Wa
currently in small flare, tail end of colon
Diagnosed with UC in June 2006
Medications: Asacol 3 pills 3 x/day, Cortifoam at bedtime, Canansa in the morning
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 9/7/2008 6:32 PM (GMT -6)   
I simply dont talk to people about if they are ignorant on the topic. To many years of the same crap from people and it gets me angry. I have had a good friend tell me that i crap alot with blood cause i take a suppository once nightly... Thats why forums and support groups are good we all have common ground and have a basic idea on what the heck we are talking about it. We give eachother ideas and advice cause we have expierenced it, as for those other yahoo's out there just fart in thier general direction!
26y old male med disharge veteran
 
Diagnosed with UC (lower proctitis) in 2004
Current daily treatment:
1000mg sup asacol
2400mg oral asacol
40mg prednisone
75mg azathioprine
20mg Nexum
 
Still 4-5 bloody, mucus bowel movents a day! Blah...


kaykay29
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 9/8/2008 12:14 AM (GMT -6)   
For years my parents would say "what did you eat" or "what are you stressed about" everytime I had a flare.  I finally lost it once and told them how stupid those comments were and that it had nothing to do with either of those things and I wouldn't let them blame my illness on me anymore. Most of my family gets it now, but I do have a few people in my life who don't - - - I try to gently remind them of the facts and to the real jerks I just say "you wouldn't make it through one day with this disease because you've got to be really, really tough."  That usually shuts them up! 

Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 9/8/2008 5:18 AM (GMT -6)   
For the most part, I have been lucky. Most everyone I know doesn't do the "If you just". But I do have one - my SIL. She is so frustrating that no matter what I say, it seems I am talking to a brick wall. So now I choose not to tell her much of anything. Like for instance, a couple of months ago I told her that I have been contemplating surgery. You know what her response was? Why don't you go see the chiropractor first before doing something so drastic? He/she may be able to relieve some of that pressure and symptoms thru manipulation. I'm thinking - huh??? Ok whatever. What?? Am I supposed to see a chiro for the rest of my life even when I am old??? I don't think I could afford that for one and two, I doubt it would work sufficiently. So there is always going to be that one person who just doesn't get it. The best you can do is either ignore them or educate them the best you can. But even though it's frustrating, try not to let it get to you.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/8/2008 9:24 AM (GMT -6)   
"She goes.. tons of people with intestinal problems live normal lives and are fine"
 
My dad says that ALL the time! Then he goes on about diet, exercise, positive thinking, etc. etc.
And I completely understand about the job thing--it's really hard to find a part-time job that doesn't require a lot of energy. ARGH.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/8/2008 10:33 AM (GMT -6)   
My family used to be clueless re. UC, but over the years, they've come to realize just how debilitating it can be. I had my Mom come with me to a GI consult with the Head of the GI Dept. at Beth Israel Hospital, & he recommended surgery. On the way home, she says "I had no idea you have been on all those meds!". I had to give a history to the GI.... My sister always thought I was absolutely crazy to consider surgery, w/out trying "everything out there" first.... she finally also realized that I have tried everything out there. (With the exception of the worm eggs.... :-) ) My husband has always been supportive of me- he has been there thru every surgical consult, hospitalization, etc.  So education is the best way to get rid of those idiotic comments. Or just ignore them! I do believe though, that positive thinking has a HUGE impact on UC. And if you're able to stop letting your disease define who you are, it makes a big difference too. Which is very very hard... but it can be done.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


LyndaC
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 9/9/2008 10:34 AM (GMT -6)   
Yes I know those comments too. It generally goes something like this...
them: So eh I heard you were in hosptial, what did the docs find then?
me: I have ulcerative colitis
them: what's that?
me: it's IBD
them: (eyes light up) oh yes I have that, YOU JUST NEED to eat lots of fibre and fruit.
me: well it's not IBS, it's...
them: I know what it is, my gran's friend's neighbour's nephew's girlfriend's mother's brother's flatmate's dog has it too. I know ALL about it.......and then before you know it they're into a long (long) story about their sufferings with IBS....
me: (just shoot me now)...seems that having UC renders you stupid and opinionless when speaking to an expert on the subject of IBS!!!! (I'm rolling my eyes now)

I got a text while in hospital after telling someone who was inquiring about what I had. 'Great' came the reply...'and totally curable!!!' YOU JUST NEED to eat lots of fruit and fibre' Half the time I don't bother explaining, it's always the same...It's ONLY IBS, sure we all have a touch of that.

My advice.....YOU JUST have to ignore them. It can be hard because while I don't want to be telling everyone the extent of the disease I feel that sometimes I have to defend my suffering so that it's not minimized to IBS...I wish it was IBS...not that that is necessarily a nice thing either...don't want to minimize that for the IBS sufferers. But it's worse than IBS and i hate it when people say things that make it sound like I've a pimple on my arse and making a big deal out of it.

Phew...I feel better now thanks!!!
 
40 year old female. Ireland.
 
Diagnosed Left sided UC in June 08.
Asacolon 2400mg per day
Protiem 
Prednisone
Also taking Calcium, Acidophilis, Zinc, Vit C, Vit B complex, Omega 3 and Evening Primrose
 
I'm on my own little planet..but that's okay they know me there.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 9/9/2008 11:16 AM (GMT -6)   
AYE-BS.....    shocked
 
q turn
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


sickpuppy
New Member


Date Joined May 2007
Total Posts : 16
   Posted 9/9/2008 11:40 AM (GMT -6)   
here is some irony for you. In 97 my dad was hospitalized with the early stages of Toxic MegaColon. It was determined that he had UC for years but his symptoms were not so server that he couldn't function. During the year he spent in the hospital after his surgery he almost died twice, and ultimately ended up with a J-pouch. Fast forward to my UC now. When I start to go through a flare like I am now I am told " son if you would lose weight and eat healthier this would clear up". I also get the impression that he thinks a couple of pills and everything will clear up in a day or 2. I am convinced that either no one has really explained what UC was for him and what it is for me now. Or he has the attitude that if you are ignorant to it, it will go away. Since his symptom weren't as server he has no clue what it is like to live with this.

I joke with my wife that one day I am just going to crap in his car. then he can see (and smell) how real this is. LOL

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/9/2008 12:30 PM (GMT -6)   
I usually start by telling new people I have autoimmune disease. If they appear to be reasonably intelligent and the relationship will be ongoing, I'll add more information as it seems appropriate. If they immediately begin telling me about their IBS or about diet or herbal remedies, I never go beyond autoimmune disease.

I'm fortunate in that my DH has always been very supportive, as have the friends I've told. The only time my husband got upset was once when he didn't realize how sick I was because I'd been trying not to complain. After I passed out in the bathroom, he helped me get to the bed to lie down, then read me the riot act about keeping things from him.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/9/2008 1:28 PM (GMT -6)   

Autoimmune disease... I will remember it when I need help but don't want someone to know the specific problem.

One more smile about my husband and rant about my mother-in-law: In the car stuck in traffic driving from a sporting event (another dreaded situation), my husband was driving and saw me start to roll the window down even though it was freezing out, knew what that meant without my saying anything, and immediately turned the radio down (he knows I need cool, quiet when I don't feel well). Unfortunately, his mother starting chewing him out because she had turned it way up, about disrespect for her, etc etc. I don't like to talk about my UC with her (it's fodder for gossip) but I had to speak up and defend him. I told her he did it for me. 

I love my husband.


49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering OFF prednisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 

Post Edited (Peety) : 9/10/2008 5:12:10 PM (GMT-6)


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/9/2008 5:39 PM (GMT -6)   
I'm lucky that my family is totally supportive and understanding of the UC. I have yet to have someone tell me "If you just...", but I don't discuss my UC with many people, including family. The few that know not only understand, but only offer constructive ideas.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/9/2008 5:59 PM (GMT -6)   
My family likes to say those IF YOU JUST.. stop thinking about whether or not you have to go, IF YOU JUST... eat better and so on. I've been diagnosed for almost 5 years, at first i didnt even really know what was going on (i was 10) but then by 8th grade i became depressed and that bad stuff. Then last year i was talking to my sister, and she told me that i was her hero because she thought i was really brave in the face of this. Ever since then i haven't become sad or frustrated by this.

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/9/2008 6:27 PM (GMT -6)   
Kazzaz -

You are truly an inspiration to me. I'm not quite sure how I would have reacted to UC at age 10 or even at 15, but you seem to be handling it with a maturity beyond your years. I'm so glad that you have a sister who supports you, even if others in your family don't.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 9/9/2008 7:22 PM (GMT -6)   

My DH jokes that when anything happens my family just happens to be experts on the subject (no matter what the subject) so when I got UC they went out and researched and researched and researched (yep - still researching).  I get the - you shouldn't eat that or you should try this, you need to slow down, work less, rest more...from them.  After 4 months of flaring post diagnosis many of them kept saying I should just have surgery.  When I said that I didn't want to end up w/ a bag and the potential problems associated w/ that when I'd been sick for less than 6 months and was getting better it was like a light went on.  I also have the (un)fortunate reality that my sister is a biomedical statistician for Abbott Labs so she kept asking/telling me about Humira trials.

The flip side is that I've been very open with everyone (work and personal) about the fact that I have UC (I disappeared from work for a month - people noticed).  My description - bleeding ulcers in my colon, drugs to manage it for the rest of my life and watching my diet, stress, and exhaustion (I let them figure out the rest of it unless if they ask for more info - which most don't).  Most of the time the result is that everyone ends up asking me how I'm doing, do I feel ok, am I getting better...  After reading this I think I need to stop getting tired of answering the how are you doing questions and be thankful that I'm not getting the if you just (other than from some of my family members - but they are actually trying to offer useful suggestions that they've found and I've used some of them successfully).

I guess I look at the "if you just" stuff as people just trying to help and I take it all in and process it as I please.  Some info goes in one ear and out the other, some stuff I actually try or research it in more detail to see if there's anything useful/worthwile in it.


Ducridr - 34 - female

Diagnosed w/ severe pancolitis 11/20/2007

Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 5mg (started at 40mg Nov 07) off end of June 08, multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day)

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