Getting family to understand (RANT)

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beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/12/2008 11:30 PM (GMT -6)   
I'm pretty close with my sister, and we talk a couple of times a month, but in recent months, we haven't been talking as much.  She called tonight and we were chatting, and she asked about my UC, which she has always kept as a peripheral topic of conversation.  I keep her up to date with major episodes, but she always kind of glances over them.  I actually told her about how things were.  My c-scopes, side-effects from prednisone, my nightly colocort enemas, my lack of being able to get out and participate in life.  It seemed that for the first time she realized that I have a life-long condition, that could leave me feeling like crap forever.  She always assumed there'd be a magic pill, or I'd stay off beer long enough to heal, or that I would get over it.  She even asked if there was some kind of surgery that I could get to rid myself of this condition.
 
it might also be that I've sugar-coated my condition so that she wouldn't have to hear the gory details, but for some reason I was completely open and honest about things today.  I eventually ended our conversation because I didn't want her to be more concerned than she was getting.  I could hear the agitation in her voice.  I felt bad for upsetting her.
 
How do others deal with those family members who just don't get it?  For almost three years I've been dealing with this, and my sister has known about it.  Why is it just now that she is realizing that this really impacts my life and how I'm able to function?  I admit that this disease affects me less than it would her standard of living because I've been more of a loner and she's a social butterfly.  It isn't as much of a sacrifice for me to become a hermit as it would be for her to have to curtail her life-style.  Was she in denial?  Or was I just shielding her?
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (trying to taper down)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 10/12/2008 11:49 PM (GMT -6)   
hey, we can never know what others go through unless we're right there with them or experienced it ourselves. If we go through denial (ucer`s when first diagnosed)...and let me tell you there are many who remain so for years...why wouldn't it be that others take a while to get it regarding our diagnosis.

Even though I've been married to the same man for almost 30 years and have his complete empathy...he still doesn't completely understand what it feels like to have what I have. On the other hand...I cannot fully understand what he has to the extent he deals with it.

We all tend to sugar-coat things for others, or give the full impact with all the gory details depending on how open (blunt) we need/feel to  be at any moment.

But remember that no one's pain or suffering is ever the same subjectively.

It's OK to tell others of what you go through...especially family. You can always apologise for dumping too much info on her, but you can also say you thought she could handle it.

We all learn how to deal....it takes time, be it for our own self diagnosis or of others..

Sounds like you`re an awesome brother Brandon...!

quincy


*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 !!!
 

Post Edited (quincy) : 10/12/2008 11:54:00 PM (GMT-6)


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 10/13/2008 6:23 AM (GMT -6)   
Brandon - I hear you loud and clear. However, I am one of the fortunate ones. When I was first diagnosised 8/25/08 my husband heard the doctor, but it was like it went in one ear and out the other. My Jim just knew after some meds I'd be healed. Just in this short period he realizes that it is something we will have to deal w/ the rest of my life. I too am like you - a homebody. I go away for one night and I'm ready to be back home! Was that way before UC. The rest of my family accepted it immediately. My sister is an RN. Your an awesome brother!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/13/2008 7:55 AM (GMT -6)   
"I admit that this disease affects me less than it would her standard of living because I've been more of a loner and she's a social butterfly. It isn't as much of a sacrifice for me to become a hermit as it would be for her to have to curtail her life-style."
That sounds exactly like my brother and I (with me being the loner).

I think it might just take your sister some time to absorb all of it, especially if you've been sugar-coating. My parents were there w/ me during my diagnosis and they didn't understand the severity of it until this never-ending flare (ex. my parents made me get a summer job even though I absolutely could not handle it....it took them a lot of convincing to let me quit). My brother still doesn't get it, but he's a teenage boy.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/13/2008 8:41 AM (GMT -6)   
I think part of the problem is we have such advanced medical science that people find it hard to believe that there are chronic illnesses that don't just a pill to fix or a surgery to solve. Additionally, what we deal with involves a lot of every day functions, such as going to the bathroom. So I think it can be hard for people to understand that we can't do something "because we go to the bathroom a lot" when the destination we are going to has a bathroom. It is all a matter of perspective and how each person deals with the disease.

I have 2 close friends that are pregnant right now. They were explaining that they had to stop on the way to my house to get crackers at a gas station because if they let themselves get at all hungry they get naseaus. As soon as we got to the resturant they wanted to know where the bathroom was just in case someones food made them vomit. One asked to add chicken to her pizza but once it got there she couldn't stomach the chicken and picked it all off. As insane and frustrating their behaviors could be to someone else, it was just a glimpse into the life with IBD. I think you have to live something like it to get it or be very close with someone who has it (married or partnered at a job, etc.)
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 10/13/2008 9:34 AM (GMT -6)   
For me, diagnosed as a teen (so long ago in the dark ages...1961), I was literally embarrassed about having this disease. I used to wish I had something like diabetes. I did spend a month in the hospital so close friends and family knew how bad it was, especially when I need six blood transfusions. But over the years I have tried to hide it from people. In my college years and early twenties I would either make myself sick trying to fit in, or drop out of activities to avoid the issues. A lot of my friends were into camping out, folk festivals and things where they slept in tents......and NO BATHROOMS. I could not deal with those situations because in my twenties was when my flares and urgencies were the worst....so I pretended to hate camping and hiking and stuff. I really wanted to participate but I was afraid of an accident and being mortified for life.

I struggled with relationships (romantic ones) because I never could share with anyone about this embarrassing disease and honestly I felt alone in the world with it. I am so glad now that there is the Internet and camps for young kids where people can actually talk about this disease.

It frustrates me because the lack of empathy for people with IBD is in a way part of a vicious cycle. Who wants to talk about a disease that has symptoms that are so personal. I love this site because here you can say what you feel and people understand.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


Limeycricketlover
Regular Member


Date Joined Oct 2008
Total Posts : 67
   Posted 10/13/2008 12:03 PM (GMT -6)   
Hey Brandon, I think you should be proud that you opened up so much to your sister - just remember it wasn't you who upset her, it was this darn disease!!

I don't know about you, but I find it very hard to get a handle on the disease myself. I've been diagnosed around 7 weeks now, and it seems like each day is a slightly different experience. How do you condense that into a few words that convey the impact on your emotional, mental and physical state? I've only realised over the last 2 days how little my family and boss know about the problem. I tend only to explain what's on my mind at the time, which I'm sure doesn't give a very good overview for an "outsider".

I understand the frustration, but sounds like she's beginning to comprehend the scale of your problem - I hope you can help each other come to terms with it and make for an even closer relationship between you guys!
UC - diagnosed Sep 2008
Seeing GI for first post hospitalization consultation Oct 9th - should get full diagnosis then

Omeprazole 40mg
Prednisolone 20mg
Calcium (Adcal-D3) 3000mg
Mesalazine 4000mg
Mesalazine foam enema
Multivitamins
Probiotic (acidophilus)
FOODS FOR ME TO AVOID:
Any types of green leaf - big time.


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 10/13/2008 12:51 PM (GMT -6)   
Hi Brandon,
 
It took Mark and I years to communicate his health situation to our families and friends. I think one of the most challeging parts of this disease is developing an understanding support system. People just don't truly understand what it means to have a chronic illness.
 
I found a great webcast done by Health Talk about communicating UC and CD to others. It talks all about how the diseases don't often show outward signs and how hard it is to talk with people about it.  I highly recommend this webcast to you for your situation.
 
 
Also, showing your family blogs like our, and other blogs may help them also see and understand that others are living with UC like you are.
 
Take care,
Megan
Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/13/2008 1:28 PM (GMT -6)   
Hi Brandon,

I sugar coated it for my family, my husband and even to myself. It took a while for my sister to get it too. I had listened to her for months and months about her boyfriend issues and when I needed her just to call me to see how I was doing she let me down. However, I talked to her about it during my major flare last year and really explained everything and she too like your sister became upset by the disease I have and I did not want to upset her about it but just to show me she cared. I find that being open and just saying to someone I need you to call and check on me sometimes, helps them and you, it did me and my sis and I are even closer now (though she on the other side of the world) I don't expect her to call now.....but a quick email checking on eachother really works for the both of us.

My husband I think it still does not sink in totally with him, I think it's that he just needs to think I will be all right and I am........ but there times, when I don't feel that way.

My family has been wonderful and when my Mom became ill a long time ago, we all really came together. Now even if we do not see eachother we call or email little updates, one of my aunts always likes me to email her my scoop after each Nephrologist visit and she came with me the first time I went, my husband has also come with me.

All my best,
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/13/2008 3:12 PM (GMT -6)   
I am conflicted, because I pride myself on being strong (and am really the most adventurous of the family), but also get frustrated when it seems they don't understand how sick I am! They respect that I don't like to talk about it, so then how can I expect them to know? I'm sure they are very confused. My husband is very close to his family so he is incredulous when I ask him not to tell when I'm having a scope or some kind of problem, and that if I'm ever hospitalized I don't want anyone to know. Maybe my husband tells his family stuff because sometimes I get these pitiful looks but we don't talk about it. I would like to be a fly on the wall when they talk about me!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 10/13/2008 5:01 PM (GMT -6)   
Peety...I understand wanting to keep things quiet for a while, sometimes it takes a lot of energy to make sense of things.....but if his family asks, secrets only keep the guessing game going.

Is this because it's a way you feel in control?

Honesty, really, is the best policy. It's hurtful to others when someone says you don't have a right to know or you don't need to know.

The facts...important...and it would be different if your husband was complaining about you..yes?

quincy
*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 !!!
 


TusMom
Regular Member


Date Joined Sep 2008
Total Posts : 24
   Posted 10/13/2008 5:29 PM (GMT -6)   

Hi Brandon and everyone--

I sympathize so much with what everyone has been saying, from the lack of understanding from close family members, to the embarrassing and personal nature of this @#$)(*@) disease, to the conflict between wanting to be strong and self-sufficient and needing/wanting people to understand how significantly this affects our lives.  I get it all, and I, too, am profoundly thankful for this forum!

It's funny this topic should arise now, when I just duked it out with my husband over this very topic about a week ago.  He is one of those frustrating people who seem to be able to do whatever they want and suffer no ill effects.  To his credit, he is and always has been *very* physically fit.  But he also eats garbage.  If he makes a meal, it is something like cheese fried in bacon fat with fried eggs and some white toast on the side with a huge glass of juice or Gatorade, no fruit or veggies in sight.  (OK, I exaggerate, but not much.)  I, even before this UC business, am MUCH more careful about my eating habits, in part because I have family histories of heart problems to contend with.  His cholesterol is fine, his heart is fine, he is just fine (as far as we know).  ANYWAY, the other night, he asked why I was so crabby, and I said I was sick to death of feeling sick.  To make the longer story short, he said, "Well, I have problems, too.  I just don't talk about them."  Well, that set off the fireworks for sure.  He basically suggested that, since the mind and body are linked, to talk about ailments only makes them worse.  This after living with me for the past 2 months when I can't sleep through the night, have seriously reduced my own active lifestyle, etc.  We really had a to-do that night.  I think people who haven't suffered something chronic and beyond their control just don't get it, period.  Some are better at empathizing and listening than others, but some just aren't.  (This is the same guy who, when a marathoner at the Twin Cities marathon broke down and cried on the side of the street because her calf was cramping, rushed to her aid and massaged it till she could move on.  "Anyone would have done it," he said.  So if I was suffering some kind of sport-induced diarrhea, he'd have tons of sympathy.)

Now, I must admit I was in a bit of denial myself when first diagnosed in March.  It was a  mild case of UC, my GI said, and I had NONE of the typical symptoms.  I remember getting the little card that you can present to stores or public venues that authorizes us to use non-public restrooms and -- forgive me! -- kind of laughing about it, saying I'd no idea there was such a secret club out there.  Now I need to go find that darn thing.  I didn't have any symptoms until this flare that has been going on since August.  So if I was in denial, no wonder others were.  Deny it no more, however, and I would think my husband couldn't, either.  I definitely think finding out you have a chronic illness involves those stages of grieving; it is definitely a loss.  I'm just waiting for acceptance and a new normal to set in, and for some of the meds or something to FINALLY work to kick this flare!

Sorry for the rant; my husband is in many other ways a good guy.  He just has this particular blind spot that drives me mad!

TusMom

 


Diagnosed proctosigmoiditis March 2008
Started 400mg Asacol, 3 pills twice a day
Started current flare mid-August 2008
Now on 400 mg Asacol, 4 pills three time a day
1000mg Canasa bedtime
Mesalamine enema at bedtime


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/13/2008 7:39 PM (GMT -6)   
quincy said...
Peety...I understand wanting to keep things quiet for a while, sometimes it takes a lot of energy to make sense of things.....but if his family asks, secrets only keep the guessing game going.

Is this because it's a way you feel in control?

Honesty, really, is the best policy. It's hurtful to others when someone says you don't have a right to know or you don't need to know.

The facts...important...and it would be different if your husband was complaining about you..yes?

quincy

I know I'm kind of weird about this stuff, and my husband would agree with you.
I think it's partly because it's just not a very dignified disease, and partly because I don't like people to think of me as sickly. I otherwise try to carry myself as being someone strong, and dignified! It's not easy :) 
So I'll not talk about it and just let him tell them what they want to know.  I know sometimes he needs the support system when he's worried about me. 

49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/13/2008 9:35 PM (GMT -6)   
Peety - I am so impressed (and worried) that you keep this all inside! I remember you saying how no one at your work knows either. I honestly could not live with this disease without my husband, friends, family, coworkers, neighbor lol knowing about it. I also do fundraising for the CCFA which is part of the reason I have told so many people. But I feel like my life has become so much better by being so open about it. It must take so much strength to keep that inside. And I know we have said it before, but you would be surprised... I have been told by many, including my boss ( a fellow lawyer) that "doing all that I do with crohns makes me so much stronger in his eyes than other people my age."

Again, I hope this doesn't sound like I'm trying to pursuade you or judge you. I actually admire your ability to keep this private. I'll admit I have put off some people I didn't know too well by just spewing the gory details. But that is just who I am and I doubt I will ever change. It is amazing that some of us live this so differently...and are happier that way.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 10/13/2008 11:42 PM (GMT -6)   
Peety...well, you could have some control by asking them if they have any questions for you.

It would be better for them to have knowledge and to have genuine concern with honesty rather than pity...that would make you more dignified and proud I would think.
Strength is allowing openness, not being angry while withholding information that could be your future support.
You're taking away the closeness of your husband if you request him to turn away from you and to his family.

You're his family...and/but he has a right to seek support.

quincy
*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 !!!
 


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/14/2008 8:06 AM (GMT -6)   
Jjc2007 said...
For me, diagnosed as a teen (so long ago in the dark ages...1961), I was literally embarrassed about having this disease. I used to wish I had something like diabetes. I did spend a month in the hospital so close friends and family knew how bad it was, especially when I need six blood transfusions. But over the years I have tried to hide it from people. In my college years and early twenties I would either make myself sick trying to fit in, or drop out of activities to avoid the issues. A lot of my friends were into camping out, folk festivals and things where they slept in tents......and NO BATHROOMS. I could not deal with those situations because in my twenties was when my flares and urgencies were the worst....so I pretended to hate camping and hiking and stuff. I really wanted to participate but I was afraid of an accident and being mortified for life.

I struggled with relationships (romantic ones) because I never could share with anyone about this embarrassing disease and honestly I felt alone in the world with it. I am so glad now that there is the Internet and camps for young kids where people can actually talk about this disease.

It frustrates me because the lack of empathy for people with IBD is in a way part of a vicious cycle. Who wants to talk about a disease that has symptoms that are so personal. I love this site because here you can say what you feel and people understand.

awww (((((((((big hug)))))))))))) I am sorry about those sad years. I hope you are doing better now.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/14/2008 9:17 AM (GMT -6)   

just relating to what Peety has posted- (and Brandon)- very few people know about my IBD either. my husband, immediate family, extremely close friends, & a coupe of coworkers know the truth. Others are under the impression I have some sort of stomach thing- ulcers, IBS, etc. It's really none of their business. I don't actively keep things secret, but I'm sure as heck not putting it right out there for everyone to hear about. I don't think "everyone" would care, really. Plus it is an undignified disease, & I also don't like people to think of me as sickly. When hospitalized, I have no clue what my husband has told people. The only time I was hospitalized was for strep pneumonia complicated by Remicade, so it wasn't even due to UC, per se. The only time I 'fess up about it is when it prevents me from doing something I had planned on, & then it's just "Oh, my stomach is bad today." Yes, people around me are aware that something is not right, but they don't know what, or the cold, hard facts of it. So on that note, Brandon- you can't expect someone, be it family or other, to be more understanding if you don't tell them what the deal is explicitly. And if you choose not to do that, being somewhat of a loner (like myself), then you are choosing to suffer/deal with your disease alone. However, as time goes on & you are not "cured", your family will come to terms with your disease. You can help them if you want by sharing info, or let them deal with it on their own.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/14/2008 5:20 PM (GMT -6)   
Wow, thanks everyone for the support. So many of you are right, by sugar coating it or not discussing it, I am keeping people in the dark, so how could they understand. Like Peety and Eva Lou, I tell as few people as possible about my condition. At work, only my two shift-mates that are directly affected by my bathroom trips know, and if I had my choice, they would be in the dark as well. I wish only my immediate family knew, but extended family know as well. What I really hate is that when I do see extended family, that is just about we all talk about. I try to steer clear of UC, or give somewhat vague answers, but conversation somehow ends back on UC. I wonder if its because I don't much else besides go to work, sleep, and use the restroom?

Fitzy, I admire your openness about your condition and the fact that you are doing volunteer work for the CCFA (I did read that somewhere, right?). You are one busy woman! I guess I see my condition as a liability that is better suffered alone. It does make sense that I should be trying to educate others about this condition instead of hiding it, but I'm such a private person.

JJC, being diagnosed back in the dark ages of medicine must have really sucked. Nowadays there is more openness and awareness about illnesses, it makes it somewhat easier, plus having this venting board is one of the greatest discoveries I've made in the last few years. You've been through so much in your life, I'm hoping that you are able to find some peace now. A question: When they diagnosed you, did the witch doctor recommend leeches or an exorcism to get the bad stuff out? Was that what the transfusions were for? Or was he more of the traditional type, burning incense and chanting all night long?

I think I'll try to be a little more open about this with my family so they have more understanding. I'm not real enthused about letting my sister know how much things really suck most of the time. I don't need her to feel sorry for me, but it would be nice to not have to dance around the subject with her. I just hope it doesn't push her away. It's no fun talking to someone who complains about stuff all the time.

I just want to get healthy, and get some semblance of a normal life back. I want to not worry about taking airplane trips, I want to be able to exercise without accidental leaks, be able to get involved in projects at work without having to run to the loo every hour, go for long drives without worrying where the nearest restroom is, not have to carry TP with me just in case, be able to have a conversation with family that involve the words UC, and be able to come on this board with my miraculous recovery. Is that too much to ask for? UC frustrates me to no end!
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (trying to taper down)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/14/2008 8:49 PM (GMT -6)   
I think whoever said we are all trying to have control was right. Brandon - you exercise your control by keeping it to yourself. For me, I hate people figuring out that something is wrong with me but not knowing what it is. I hate people making assumptions. Thinking I have a nervous stomach, or IBS or something not so serious. It makes me really anxious actually to think about having to leave a class several times and have people wonder " I wonder what is wrong with her?" For me, it makes me so much more comfortable and gives me a lot more control to say I have crohns. If they see me run to the bathroom a lot they already know I go to the bathroom a lot. I think it is less gross for them to know I have crohns than have them think I have some unknown mystery illness... or worse, bulimia!! So, while I appreciate you admiring my openness, I do it for the same selfish reasons as people who keep it to themselves. Part of me does want to educate the world but the main reason I do it is to make my life easier.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


memmie 23
Regular Member


Date Joined Apr 2006
Total Posts : 41
   Posted 10/15/2008 5:32 AM (GMT -6)   
I totally understand with getting the family to understand thing, it drives me mad. My partner is getting to know it more but all the other family members are so NOT. When i get the cramping sometimes it gets that bad i can hardly walk and im breathing/panting as if im in labour again, familys response is "you got belly ache again" as if im being dramatic. Gets me so mad, i just want to scream at them. All i t takes is one member of the family to google it and they will understand. arrghhh
xxxx memmie 23 xxx
 
 
currantly on... predsol retention enemas 100ml (nightly)
 

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