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qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/10/2009 4:02 PM (GMT -6)   
How do you deal with other people and friends?! While they can be so caring I find it can be quite overbearing. And most frustrating I find that friends sometimes think I'm not being honest with them about how I'm feeling. At the moment when I say I'm 'ok' or 'fine' I always get the same reply 'be honest...' Well what I actually mean by that is I'm feeling ok compared to how I've felt at other times. I just don't want people to think I'm making a big deal and sometimes just want to get on with it...you know?! But I just feel like people think I'm annoyed with them for asking if I'm ok, and that I'm not being honest. It gets me down as I don't want people to think like that of me, but at the same time don't know how to act.
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
15mg Prednisolone tablets (tapering from 40mg, came off at 5mg then back up to 15mg)
1g Acetarsol suppository every other night (Previously taking 5mg Pred suppository)
1g Mesalazine granules x 2
 
7.5mg Zopiclone (taken when needed for sleeping)
10mg Citalopram (anti-anxiety/depression)
Probiotic Multivitamins 
                             
                             


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/10/2009 5:06 PM (GMT -6)   
I wouldn't worry too much (or at all actually) about what others think regarding you being honest with them, if you're being honest with them but they don't believe you then that's their issue not yours so don't waste anytime cuz you cannot control what other believe/think.

Don't let others stress you out about things like that, your health is more important than what others think.


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/11/2009 7:33 AM (GMT -6)   
I understand where you are coming from. I've felt like that when my hubby and I go out to eat. It's kinda disappointing that what you could eat before you got this disease you can't have anymore. I've felt like that for a while. It just takes time to actually deal with all the differences in your life, I also think your friends are dealing with it in their own way. They are trying to be there for you but I guess they are still figuring out how to be there. It just takes quite an adjustment. You will get through it, I also agree with pb4 you know what's true, your friends can't tell you how you feel only you can.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/11/2009 4:09 PM (GMT -6)   
People would ask me, "How are you?" I'd say, "I'm fine, thanks. How are you?" And they'd say, "No, really... how ARE you?" These folks mean well, but if you don't feel like going into detail, say so. Tell them you've been feeling a little better lately, you appreciate their concern but you'd rather not talk about it/dwell on it. Then change the subject.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/11/2009 8:20 PM (GMT -6)   
I always say, I think I'm OK...
What can anyone say to that?! I get a lot of funny reactions.
(It mostly has to do with my profession as a lobbyist, you never know what politicians are going to do to you).
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 5/11/2009 8:48 PM (GMT -6)   
You all have some nice friends...mine still give me a hard time for not coming out more

People do not seem to understand the extent of my UC.

The sad part is they are all nurses and social workers...
Ulcerative Colitis (R/O Chrons Disease) - 7 years
25 years old/female
Asacol
Klonopin
Nexium

Bad reactions to: remicade & 6mp


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/11/2009 10:41 PM (GMT -6)   
Ok, gotta add to this.......

Today I went to apply for a job at a corporate place that I have worked for in the past but different location. There was this gal who remembered me from when I had worked at another location. She remembered my problems because the place I had worked previously was when I just came down with this Disease. So as I was filling out the application, she kept asking me if I was ok, and all sorts of random questions. I kept brushing it off saying that I'm fine now, I've been in remission for almost 2 years. I'm fine, no problems at all. How much really can you say to someone to make them realize that you really are fine. Just talking to her reminded me of this topic. If you think about it it's kind of hilarious. She was trying to be understanding and trying to relate to me or something like that, and all I was looking for was move on from this mind set. I think we all just want to just live our lives and not dwell on our disease, but some people don't really want to let us because they don't know how to really react around people with this problem.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2083
   Posted 5/12/2009 12:22 PM (GMT -6)   
I don't know Sweetie, I'd be worried that she wasn't just trying to be all understanding, I'd worry that she was trying to gauge your health status in terms of your suitability for the job. Hope it doesn't get used against you, seeing as you are now doing well.
ack, 42, Vancouver BC
 
DX: UC (Pancolitis) as of Jan2009.  Symptoms first began June 2008.
Current Meds: Ferrous Sulfate, plus various supplements
Previous Meds: Jan-Mar 2009: Asacol 800 mg (1 pill x 4 daily), stopped Mar14/09. 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 5/12/2009 12:45 PM (GMT -6)   
ACK_
I agree with you - I am always careful how I answer the question- How are you?- at work. I am afraid that being ill will be used against me, even though my principal has been wonderful, there are others around me who are vipers.

I am a bit cynical; unfortunately it started after I turned 40.

:)) P.S. Sweetie, I hope you get the job....
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- TBA


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16038
   Posted 5/12/2009 2:11 PM (GMT -6)   
I never tell anyone that I am have any issues. too personal. I don't even tell my bestfriends because they all gab behind each others backs and I don't like being a topic of conversation.

Diagnosed with mild proctitis in March 2007: Treated with Canasa 2x Daily
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 5/12/2009 3:13 PM (GMT -6)   
I don't have any issues about talking about my colitis.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/12/2009 4:10 PM (GMT -6)   
I don't mind talking about it and am not embarassed to do so, but sometimes I just want to say 'I'm ok' (where alot of the time I am genuinely ok compared to how I am other days) and then not say anymore. Especially at somewhere like work where I work for a big company and news gets passed around pretty quickly...so alot of people know I'm not well and are concerned. And I end up repeating myself several times about how I am...you get kind of sick of doing it!  

22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
40mg Prednisolone tablets
100mg Azathioprine
1g Acetarsol suppository every other night (Previously taking 5mg Pred suppository)
1g Mesalazine granules x 2
 
7.5mg Zopiclone (taken when needed for sleeping)
10mg Citalopram (anti-anxiety/depression)
Probiotic Multivitamins 
                             
                             


angelxe1
New Member


Date Joined May 2009
Total Posts : 9
   Posted 5/12/2009 4:49 PM (GMT -6)   
I often have the same problem. Even if people are just trying to be nice, i don't want to say, I'm still sick - or say I'm feeling just as bad as yesterday. I often say I think I'm doing alright now sure yet. Or I say I've been better - I've been worse. If friends press about it i just say don't want to talk about it right now lets focus on happier things.

Even worse are the "friends" who don't really believe I'm sick. Or the co-workers who pretended to care just to go behind my back and complain about my frequent bathroom trips, or convince my superiors i was faking it, or too sick to work.
28 yrs old
Diagnosed in 97 with Ulcerative Colitis
Diagnosed in 2005 with Fibromyalgia

Prednisone down to 10mg from 60mg
Sulfasalazine 8 a day (500mg each)
and a bunch of other stuff (so many pills ahhhh)
Starting 6-mp


mother of two cats


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/12/2009 6:05 PM (GMT -6)   
My thing was about that situation is becuase I stepped into a similar place same corporation I became very sick at. She was in the same place as me when I was VERY sick. I'm not ashamed about my disease, I'd rather let them know my reason for not going back to the previous job relating it to my illness than anything else. I really don't like to announce my illness until after I get the job. Since I've been at other jobs they can vouch for my consistency of attendance and how my illness hasn't held me back. ;) So, I have no doubts.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16038
   Posted 5/12/2009 7:20 PM (GMT -6)   
I guess if I were in really bad shape I would have to be more open about my UC. Since it has been pretty mild while I was employed, I've never had to open up to anyone. I will tell people that my health is not the best but I never elaborate on the details. With friends and family, I feel that it is better to keep things to myself. I don't want them all worried about me. My mother is a gossip and I don't need people I haven't talked to in 10 years calling me asking if I am okay. It is to the point that I wouldn't tell my mother if I were in the hospital. Terrible, huh? I had a colonoscopy the other day and I had an IV bruise on my hand and I was hoping my mother wouldn't notice when she saw me a few days later. She didn't notice thankfully. I think it is funny that I act like this but I know she would be stressed if she knew and it would consume her life. I generally don't feel so good and I don't want to explain it to everyone all the time, better off having some fun and not having people worry about me. If I told my sister she would worry that she was going to develop UC and I don't want her getting that idea in her head.
Diagnosed with mild proctitis in March 2007: Treated with Canasa 2x Daily
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 5/12/2009 7:54 PM (GMT -6)   
My friends and boyfriend are pretty good most of the time, though we have a hard time finding things to do because I live in a college town with nothing but food and bars, and I can't drink and you can only eat so much food.

The boyfriend always tries to make me food I can eat when I'm feeling ill. Last time he roasted me a chicken, then made soup with it.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1907
   Posted 5/12/2009 8:26 PM (GMT -6)   
I really hate talking about this colitis thing very often. Sometimes I don't mind with some friends but I do not want to be defined by a disease or labeled in any way. Maybe that is my issue.
Yea, I don't know what to say about work. I know our secretary knows when I am not well because I have to pass right in front of her desk to go to the ladies room across the hall. That is really embarassing! If I didn't have a job with VERY flexible hours, I would have been fired by now for sure! I keep my own hours basically and on bad days, I can work from home. That has come in really handy the past few months. I am very grateful for this. Funny how things work out sometimes. I think I would be worried if people at work started making a big deal, prying or asking much about my illness. That would make me nervous.
diagnosed 1/09 with colitis,54 yo, colazal, fish oil, synthroid, cymbalta


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 5/12/2009 9:30 PM (GMT -6)   
Its a tough situation. It's hard to explain to people you barely know why you get up and go to the bathroom during class a lot. I remember one time in high school when I was really sick I dashed out of class and on the way out I heard "I bet she's going to puke again". I was like "um sooo NOT what I am doing!! Try the other end!!"
I have no problem telling people that I have a chronic illness but its hard to explain in terms that they understand and don't find completely disgusting. I guess I've learned to adjust and screw what people think of me. I'm lucky enough to have friends who understand and a boyfriend who is super supportive.
Sam(antha)
20 year old college student diagnosed in March 2005
Remission since January/April 2006->THREE YEARS!!!!!
Trying Colazal 3 750mg x2 (NOT for a flare, just some linger symptoms?)
I was kind of stupid and started taking the colazal two days before finals week started, so I went back to asacol for the week and will go back to Colazal starting 5/9. Shame on me!!
25mg Elavil
75mg Effexor XR for GAD
"If you don't like something, change it. If you can't change it, change your attitude."
Maya Angelou


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 5/13/2009 4:39 AM (GMT -6)   
When I am around my friends or family - they all know what I have and to what extent - and they ask me how I am, really am I usually reply "Today is a good day" or "I've had better days". Then they usually leave it at that. Depending on the friend, they will usually not ask about more but I do have some nosy friends, close friends, that I don't mind being perfectly honest.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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