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birdiem
Regular Member


Date Joined Aug 2007
Total Posts : 326
   Posted 12/1/2007 4:20 AM (GMT -7)   
So my parents are starting to get fed up with me. They think am being dramatic when I get upset about my colitis, or I spend too much time in the bathroom. I wish they knew that I would do anything to get rid of this, but I need their support. I'm not the attention-seeking type and I certainly wouldn't use something like my health as a way to get attention. I am already using all the money I make to pay for hospital bills--what more can I do?? I don't mean to sound like a victim--I know my parents have been through so much, I am actually curious what I can do to rectify the situation.

Any advice would be great!

~Katie
katie
23
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
gastritis

VSL #3
Amitriptyline to slow gastric emptying
Forvia
compazine


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 12/1/2007 5:41 AM (GMT -7)   
Hi there,well I guess this is my first post on the board!Let me introduce myself by saying I'm a 36 year old male,diagnosed with procto-sigmoiditis(inflammation of rectum and sigmoid colon)back in 1995.I've been "lurking" on this board for a couple of weeks now,and I have to say I'm amazed at the people with similar posts to yours.What exactly is it your parents are "fed up" of?Do they have fear of incontinence,or bleed from their posterior?No,that's your problem and the last thing you need is grief from people on top of that.Sorry to seem harsh,I'm sure you love your parents a great deal,and they probably do a lot for you,but lack of understanding for this condition angers me at times.Some of my colleagues at work think I just have indigestion!Yeah right,like I'd spend 3 weks in Hospital for that!
I don't have a specific remedy for your situation,but let me suggest this:Google Colonoscopy pics,then show them what's going on in your intestines.Show them some posts from this board,and if that doesn't make them understand,take them to your next GI appointment.Failing that,I'd just have to write it off as ignorance and not get wound up about it.
Don't know if that helps you,but please take solace in the fact that there are a lot of people out here that DO understand!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/1/2007 6:26 AM (GMT -7)   
Katie, maybe your parents are in their own form of denial that you have all these things wrong with you. But, Silent Lucidity (welcome to Healingwell btw!) has a great idea - print off pictures of a flaring colon and then one of a healthy one. Try to sit them down and explain to them what you are feeling - but don't over dramatize your symptoms. Lay it out simple. Have you ever just sat down with them and explained everything to them?


 @--->--SHERRY--<---@
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio, Colocort**Unable to tolerate Asacol, Rowasa or Canasa** 
~Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)~
~Secondary Reynauds Syndrome - '04 - Norvasc~
~Fibromyalgia - '06~
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
 
 
 
 

 
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 12/1/2007 6:59 AM (GMT -7)   
I'm 30 so in a bit of a different situation BUT my parents have never really gotten it. When I think about it...Sherry is completely right...they are in denial that something so serious can be wrong w/ me. They definitely don't understand how I can have decent remissions and then it come back. A couple of appts. ago I got every brochure they had on UC and took them to my parents. My dad actually said "oh you have a disease? I thought you have a weak stomach." Makes you want to scream AAAGGGHHH!!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 12/1/2007 7:02 AM (GMT -7)   
I found this short colonoscopy video that shows UC. Perhaps if they had a look, it may help?
Good Luck:-)

http://www.colitisfoundation.com/index222.html

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/1/2007 10:55 AM (GMT -7)   
I think parents sometimes stay in denial even longer than we do. They see you suffering and they can't do anything about it. As parents, they feel it is their responsibility to make things better for you, but they can't do that now. Sometimes the only way they can deal with it is by minimizing it in their own minds.

In addition to educating them, you might want to watch really carefully for them to do any little thing that is positive or helpful, then make a point of telling them how much it helps you when they...whatever. That may help them learn what they can do without feeling like their child is telling them what to do.

This D disease is awful for everyone it touches. Hugs for all of you.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 12/1/2007 10:58 AM (GMT -7)   
I think Silent Lucidity's idea of taking a family member to your next GI appointment is excellent. I've heard from people who work in my GI's office that they have helped people cope/deal with family in a bunch of ways and it would be great if you could get some support from your doctor or a nurse in the office. Tell them not to sugar coat anything! ;)

I have to say that the best thing my family has said to me is something like this: Given that you're dealing with this disease, it's amazing that you do all that you do and that you have a positive attitude. It may seem like a little thing, but having someone to say that to you (even once a year!) can make a big difference.

It's a hassle that you have to educate your family at the same time that you're dealing with this disease, but hopefully a little time spent helping THEM, will eventually help you.

Good luck!
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1611
   Posted 12/1/2007 1:55 PM (GMT -7)   
I know exactly what you are saying, when I was first dianosed and still to this day, some people say i am dwelling on my UC if I even talk about it. No one understands. Sometimes it makes me so mad.
Janice
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium 
Currently in Remission


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 12/1/2007 2:30 PM (GMT -7)   
I think you should sit them down and have them read some of the posts on this forum... Then they can see how other people are effected by this darn disease and maybe they will start to relate to you a bit more. Maybe they just don't have anything to compare your suffering with and if they don't know much about the disease, maybe reading some posts here will set them straight and help them to be more understanding to what you are going through.. The best tool is knowledge :)
SusieBuddy  
Diagnosed with U/C January 31st, 2004, IBS on July 21st, 2006, Dr says possible Crohn's...We'll see....
 
Meds: Rowasa enema's - Back to every night... probably forever!!!
         Canasa 1000mg. AM Only when needed, - Bentyl 10mg. As needed, -         Nexium - 40mg, 1x per day, - Xanax .5mg as needed,  Effexor 37.5mg. 
         Culturelle 1x a day 
         http://www.myspace.com/77016897         


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/1/2007 3:06 PM (GMT -7)   
I'm in agreement with virtually everything that's been said in this thread. I'm lucky to have sympathetic parents who have been extremelt helpful in many ways. I must add, however, that they are very ignorant of science/biology/biochemistry and sometimes talk to me as if it's my fault and as if suffering from UC is my fault due to me eating cheeseburgers or pizza or whatever. I have had my share of heated arguments with my parents over their desperation and ridiculous recommendations as to what treatment options I should use. For example, they've implied that eating rice-pudding in the morning will somehow "coat" my intestinal lining and relieve inflammation. When I refuse their ridiculous advice, they get upset with me and say things to imply that if I were to follow their advice, that I would be cured. They also mention anecdotes (which may or may not be accurate, rooted in their extreme ignorance of all things scientific) of other persons they know with UC who seem to be doing fine, and that if I were to do the same I wouldn't need to go through all these medical options. They also subtly try to undermine the expertise of modern doctors and make silly recommendations that I see a naturopath or homeopath, which in reality is as effective as a witch doctor (no offense to any of you who might be ignorant enough to subscribe to naturopathic or homeopathic methodologies). I'm kind of going on a rant here, but I can assure you that MANY UC sufferers understand to some degree where you're coming from, but I imagine that in this "place", you're at "home" and many of us "get you".

To reiterate much of what's been said above, education and honesty is all you have to deal with ignorance. The advice you've already been given of educating your parents through various methods (showing them documentation on the disease, allowing them to read this forum or other forums, inviting them to an appointment with your specialist, etc) makes sense to me. If you can tell yourself that you've honestly made a reasonable effort to educate our parents and inform them of what's really going on, then at least you can take pride in knowing you've done your best. I imagine that will be enough to turn your parents' prespectives around and alleviate their ignorance.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/1/2007 5:36 PM (GMT -7)   
Robert.K said...
They also subtly try to undermine the expertise of modern doctors and make silly recommendations that I see a naturopath or homeopath, which in reality is as effective as a witch doctor (no offense to any of you who might be ignorant enough to subscribe to naturopathic or homeopathic methodologies).
Alternative treatment methods can be very helpful in healing or managing ulcerative colitis - alone or combined with traditional allopathic methods. Perhaps you should educate yourself on the broad range of options out there. Calling other members on a forum "ignorant" is generally frowned upon in netiquette and prefacing it with "no offense" doesn't make it any less offensive.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/1/2007 6:37 PM (GMT -7)   
All I can do is be honest in these forums. And while I sympathize with how some patients of UC and those affected indirectly by UC (family, friends, co-workers of sufferers of UC), I cannot hide my contempt for those who proclaim to be naturopaths and homeopaths, considering that these movements contribute nothing to the medical community and do not conduct any real research which is then reviewed by third parties. Although there is no doubt in my mind that alternatives to conventional medical treatments are out there and exist, I am certain that these alternatives have NOT been discovered or substantiated by those who claim to be practitioners of either naturopathy or homeopathy.
princesa said...
Robert.K said...
They also subtly try to undermine the expertise of modern doctors and make silly recommendations that I see a naturopath or homeopath, which in reality is as effective as a witch doctor (no offense to any of you who might be ignorant enough to subscribe to naturopathic or homeopathic methodologies).
Alternative treatment methods can be very helpful in healing or managing ulcerative colitis - alone or combined with traditional allopathic methods. Perhaps you should educate yourself on the broad range of options out there. Calling other members on a forum "ignorant" is generally frowned upon in netiquette and prefacing it with "no offense" doesn't make it any less offensive.


MissMindy
Regular Member


Date Joined Nov 2007
Total Posts : 27
   Posted 12/2/2007 12:06 PM (GMT -7)   
When I had first found out that I had UC my father made it seem like it was my fault. That it was something that I had done. But I went and did a ton of research and bought the books and took him to one of the appointments with me. I did everything that I could to do to show him that it is not something that I did.
Finally he sat down and read the books and listened to what the dr.'s were telling me. Maybe your parents are in denial? Maybe they don't want to have to face that this is something that you are going to have for the rest of your life? Maybe that just want to act as thought it is not that big of a deal because they think that it will just oneday go away if they ignore it. Sweep it under the rug maybe. I know that I do not know them personally but I am just going off of my own experience.
I do agree with Judilyn. Parents do stay in denial longer than we do. They don't want to admit that something is wrong with their child. No matter what age they may be. They will forever be thier child. They will forever have a special bond and a special place in their heart for them. Its hard for us and it is hard for them.
I hope that you are able to sit down with them and be able to talk to them about everything. Also hopefully they will change their point of views on everything and will be there for you when you need them.
------------------------------------------------------------------------------------
A 20 year old girl that is newly diagnosed
Yet she still is determined to go out and live her life to the fullest...
Diagnosed 10/30/2007
Currently taking:
Lilailda
Prednisone -NO MORE! :)


birdiem
Regular Member


Date Joined Aug 2007
Total Posts : 326
   Posted 12/2/2007 12:45 PM (GMT -7)   
thank you guys so much. just having your advice and support makes everything so much better. i will definitely research some info and try to get my parents to read it! love to you all!
katie
23
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
gastritis

VSL #3
Amitriptyline to slow gastric emptying
Forvia
compazine


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/2/2007 2:53 PM (GMT -7)   
birdiem said...
thank you guys so much. just having your advice and support makes everything so much better. i will definitely research some info and try to get my parents to read it! love to you all!

 
During some heated and angry arguments that I've had with my parents regarding this disease (when they try to blame me for my illness by either a) I somehow didn't eat conscientiously enough and made myself by eatig lots of homemade hamburgers during previous summers or b) not observing their useless recommendations of trying this or that "natural" cure) I have blamed THEM for my illness by cursing the genetics I have inherited from them. Although it isn't fair to blame anyone, sometimes the frustration of dealing with the supreme ignorance of loved ones can get the best of me. That being said, i'm very blessed to have supportive parents who do a great deal to help me out, even if it does come with a catch: both of them being absolutely clueless about all things scientific. :-)
 
I'm confident you'll be able to guide your parents out of the darkness of ignorance by taking some advice from people in this forum and using your own good judgement and common sense.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/2/2007 3:48 PM (GMT -7)   
Robert.K said...
All I can do is be honest in these forums. And while I sympathize with how some patients of UC and those affected indirectly by UC (family, friends, co-workers of sufferers of UC), I cannot hide my contempt for those who proclaim to be naturopaths and homeopaths, considering that these movements contribute nothing to the medical community and do not conduct any real research which is then reviewed by third parties. Although there is no doubt in my mind that alternatives to conventional medical treatments are out there and exist, I am certain that these alternatives have NOT been discovered or substantiated by those who claim to be practitioners of either naturopathy or homeopathy.
 

No one's asking you to be dishonest. It's fine to say, "I tried X and it didn't work for me or it had adverse effects." It's not acceptable to call others who are trying and/or having good results from X "ignorant." Members often have differences of opinion here, but we are required to be respectful of each other.

As you probably already know, you are never going to see the extent of double-blind scientific testing on natural supplements or dietary treatments because no one can patent these things and no one stands to gain financially. I can see from your other posts, you've had bad experiences and your parents pushing miracle cures on you has affected your attitude. However, there are many things - probiotics and omega-3 supplementation, just to name a couple - that have indeed been studied and shown to be helpful for IBD patients. The science behind them - rebuilding good gut flora and restoring balance, and naturally suppressing inflammation, respectively - is sound.

That's not to say there aren't shysters and quacks out there that are more than willing to take the money of the unsuspecting. But there are also alternative and complementary medicine physicians that are extremely skilled in treating UC and other chronic conditions. It's unfair to make broad generalizations.


Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/2/2007 5:11 PM (GMT -7)   
princesa said...
Robert.K said...
All I can do is be honest in these forums. And while I sympathize with how some patients of UC and those affected indirectly by UC (family, friends, co-workers of sufferers of UC), I cannot hide my contempt for those who proclaim to be naturopaths and homeopaths, considering that these movements contribute nothing to the medical community and do not conduct any real research which is then reviewed by third parties. Although there is no doubt in my mind that alternatives to conventional medical treatments are out there and exist, I am certain that these alternatives have NOT been discovered or substantiated by those who claim to be practitioners of either naturopathy or homeopathy.
 

No one's asking you to be dishonest. It's fine to say, "I tried X and it didn't work for me or it had adverse effects." It's not acceptable to call others who are trying and/or having good results from X "ignorant." Members often have differences of opinion here, but we are required to be respectful of each other.

As you probably already know, you are never going to see the extent of double-blind scientific testing on natural supplements or dietary treatments because no one can patent these things and no one stands to gain financially. I can see from your other posts, you've had bad experiences and your parents pushing miracle cures on you has affected your attitude. However, there are many things - probiotics and omega-3 supplementation, just to name a couple - that have indeed been studied and shown to be helpful for IBD patients. The science behind them - rebuilding good gut flora and restoring balance, and naturally suppressing inflammation, respectively - is sound.

That's not to say there aren't shysters and quacks out there that are more than willing to take the money of the unsuspecting. But there are also alternative and complementary medicine physicians that are extremely skilled in treating UC and other chronic conditions. It's unfair to make broad generalizations.

 
Hi princesa,
 
I understand that there are lifestyle changes which can possibly provide some relief for patients of UC, with sound scientific explanations. But these changes aren't pioneered, discovered, researched, or substantiated by practitioners of eaither homeopathy or naturopathy. One can find and read, if he or she or so inclined, published scientific articles which show promise for all sorts of non-medicinal treatments for patients of UC. It is also important not to discount the reasearch that is conducted with non-medicinal cures. Although it's true that many "natural" substances cannot be patented, there is a lot of research out there regarding how many variables affect UC, from oral hygiene to carbohydrate consumption. My only disdain is for quacks who promote ridiculous claims with no understanding of science. Naturopaths and homeopaths belong in this group of quackery.

birdiem
Regular Member


Date Joined Aug 2007
Total Posts : 326
   Posted 12/2/2007 5:29 PM (GMT -7)   
i'm so sorry, i didn't mean to start any story of controversy.
katie
23
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
gastritis

VSL #3
Amitriptyline to slow gastric emptying
Forvia
compazine


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 12/2/2007 6:30 PM (GMT -7)   
katie...other people's disagreements aren't your fault. No need to apologise. Do not feel the need to take on responsibility for what isn't yours.

I hope things work out with your parents....do ask them what they require of you and if their expectations are based on reality or out of frustration.

Considering all you've been through with your digestive maladies/surgeries/UC...it seems strange that they're not accepting somewhat.

What is it that you can do to change your behaviour somewhat as to not aggravate your parents so that their reactions won't be as extreme?

It's a two-way street, and only talking and discussing will help you all to at least be able to live together with respect.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/2/2007 6:33 PM (GMT -7)   
Yes Katie, Quincy is right; you did not start any controversy. Remember all, what works for some doesn't for others....and we agree to disagree. Nuff' said!
Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

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