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eliztopp
Regular Member


Date Joined Feb 2008
Total Posts : 46
   Posted 2/26/2008 5:31 PM (GMT -6)   
I am sooo annoyed at all of my family, friends, any one i meet.  I feel like my UC is ALWAYS the topic of conversation.  Everything we do deals with food.  My friends say lets go out and get a pizza, then its oh wait Liz can't, or Liz what CAN you eat, why can't you eat THAT.  And it even seems like some of my friends like to tell people about it, and will start talking about me as if I am not there. Or i go over to my boyfriends house and its a meal planned around me, which is very sweet, but she makes it KNOWN and everyone else makes a big deal about it.  I feel like my boyfriend has stopped inviting me becuase its such a pain for her! I just really feel like i can not take it any more.  And the prednisone side effects are all i can think about, i'm always hungry (although i am managing still to loose weight) but then i will complane about my face being huge due to the pred. and i feel like people just stare at me.  I even had one person ask if i had gotten my wisdom teeth removed! And of course doctors don't make it any better by pointing it out during appointments "your face looks swollen from the pred." UGGGH  And the not drinking concept is not understood in College. I can't even go out any more with out the entire party knowing i can't drink.  I have asked my really close friends to stop asking me about my eating, and quizzing me on my choices.  I told them that i understand that they are trying to be helpful, and want to understand it better or more, but that i just can't take it!  I know what I can and can't eat, and ever time we sit down for a meal I don't want to be asked if I see somthing i can eat or walking around the super market!
okay sorry.  I just feel like i but on such a happy face all the time, and I just needed some place to spill out all this frustration.  Normaly i have a very positive outlook on my UC, it is getting better and i have a great support system.  Maybe its just one of those mood swing days (my boyfriends hates that i use it as an excuse). Thanks for listening or reading if you read this far, i don't mean to be annoying.  But that does feel better.
 
{[lizzielu]}
age 20, diagnosed december 2006
meds: Asacol 4 pills 3x a day; 6-mp 75mg MWF, 50mg SSTTH; iron supplament; protonix; prednisone 25mg for one more week! (in the middle of a tapper, down from 40mg started 1/1/08)
Remicade????--pondering, next step


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/26/2008 5:42 PM (GMT -6)   
Vent away!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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


eliztopp
Regular Member


Date Joined Feb 2008
Total Posts : 46
   Posted 2/26/2008 5:44 PM (GMT -6)   
thanks tab! i read your post and your two words brought tears to my eyes (no really now i'm crying) but in a good way! I feel like there is no one here to understand, i have plunty of people to talk to that will listen, but none of them get it.
 
{[lizzielu]}
age 20, diagnosed december 2006
meds: Asacol 4 pills 3x a day; 6-mp 75mg MWF, 50mg SSTTH; iron supplament; protonix; prednisone 25mg for one more week! (in the middle of a tapper, down from 40mg started 1/1/08)
Remicade????--pondering, next step


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 2/26/2008 5:48 PM (GMT -6)   

lizzielu,

Vent all you want! I feel your pain, especially as I'm tapering off prednisone at the moment too.....

I'm coming to terms with friends and family asking me continuously about what I can and can't eat - after all, they mean well (but it definitely can get over the top at times).  The slight moon-face that I have doesn't bother me as I'd honestly rather deal with a fat face and a bruised ego than a bruised intestine.  By the way, all the best with the taper - I'm taking my taper nice and slow right now and also have rectal meds handy to get any minor flare-up under control asap.


Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone taper from 60mg - Now on alternate days of 20mg and 10mg; 2/08: added 1 Pentasa x 1mg.


Yujin
Regular Member


Date Joined Feb 2008
Total Posts : 55
   Posted 2/26/2008 6:00 PM (GMT -6)   
i also feel the way you are feeling right now...its hard to make people understand what UC is.. even my parents sometimes blame me for having this.. they said that i got it because i used to drink softdrinks a lot, even on an empty stomach... eating lots of junkfoods and spicy foods... people dont know that UC is not caused by any wrong food intake... only people with UC can understand us... im glad i found this site where i can vent all of my frustrations...
Diagnosed with UC on 2007. Undergone Fistulotomy on 2005. Taking Generic Asacol 400mg 3X a day... "HEALTH IS WEALTH"


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/26/2008 6:15 PM (GMT -6)   
Oh don't cry! But I know...no one **really** gets it unless you are dealing w/ it. You stay strong!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/26/2008 9:08 PM (GMT -6)   

Hey, I had surgery 7 years ago and people STILL ask me how I feel, what can I eat, is my health good, blah blah blah.  It makes me so mad.  I mean look at me, I am 20lbs overweight, I am healthy alright?  I don't think that annoyance will ever go away no matter how many times I explain to people that I am off medication, healthy, and can eat whatever I want.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/27/2008 7:01 AM (GMT -6)   
I went out for my bday in January with some friends. I was feeling absolutely horrible because I was in a flare and my acid reflux/gastritis was acting up too. Well we went with this one friend that I don't know very well and my best friend and her hubby had to point out to her that I have Uc and explained what it was because she was wondering why I wasn't feeling that good. I mean I like the idea of people knowing what Uc is and all that but sometimes not at my expense if you know what I mean. My best friend means well but when she finally realized just exactly what I was going thru (mainly because I finally opened up about my Uc after all these years), she would constantly ask me about what I can eat and what I can't when we would go out to lunch. I finally said, hey you know what? You worry about you and let me worry about me. I know what I can eat and what I can't. Since then, she doesn't ask. But I know what it's like to keep the happy face and trying not to let others know just how beaten up you are on the inside. It's tough - that is why I am so grateful for this forum. Because if I'm having a bad day, who else can I turn to without having judgement passed on me.

So vent away as much as you want and never apologize for it either.


 @--->--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**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 2/27/2008 7:48 AM (GMT -6)   
Don't you love it when you co-workers or friends want to go out to lunch and they work it around you without asking you. I was approached the other day and they wanted to go out to lunch and even picked a "Wendy-friendly" place to go. I wanted to say, Listen, I feel like crap and the last thing I want to do is go out to lunch with a bunch of people who don't respect me enough to even ask if I want to go. It is really a terribly stressful thng for me to go out to lunch.....no potties in the car, Probably only 2 stalls at the restaurant (and heaven forbid they are both taken). It gets me so worked up that I feel bad before I even leave. I have no chance after that. You would think that they would have some compassion since my boss's kid has CD. But they want what they want. They make me feel so guilty about it too, and I want to say "Screw you, this is not about you. This is about a disease that I have NO control over. So, if you want to be mad take it somewhere else, I really don't need it." Like we CHOSE this way of life??? Who would CHOOSE this? Being "normal" never looked better to me, but that is not an option.
Hang in there, there are some great, compassionate people out there. I am married to one. And although we can't always do it, I try to only surround myself with those people. It really makes my day better in every way. Not because they do anything special, they just don't make me feel bad about myself for having this disease. Sorry for my vent, but you are not alone, and we are all here for you.
diagnosed with left-sided UC in 1997.
Currently on 10mg Prednisone
12 caps of colazal
rowasa enema nightly
35 years old, white, female


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/27/2008 8:22 AM (GMT -6)   
Why do people feel that, just because we tell them something, it's their story to share with others? My friends and co-workers are accustomed to hearing me say "No, I don't think it's a secret, but it isn't my story to tell. If she wants to talk to you about it, I'm sure she will."

On the eating thing, when we're planning a team lunch people used to ask me also. It was nice of them, but it made me self-conscious to have 15 people planning their lives around me. I took to saying "I can find something to eat wherever we go, so what do you want?" Now they've stopped asking me.
That means that sometimes I have only one choice on the menu, or I eat only bread, but it made me feel less like I was purple.

It's also perfectly okay to say (kindly) to people, that you don't want to talk about your inconvenience all the time. Sometimes humor helps, too. Laugh, then say something like "Hey, it's bad enought I have this thing, I don't want to talk about it all the time too."
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/27/2008 8:28 AM (GMT -6)   
Oh Judy! What a way with words - your comments are so well stated :)

Lizzie - venting is great - get those emotions out. A good cry doesn't hurt every so often. I like to follow them up with a good nap!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 2/27/2008 8:37 AM (GMT -6)   
I understand completely. most of the time I don't mind all the explaining, it's getting UC out there. But I've been sick for so long that I'm tired of hearing how are you? and having to explain everything.

My wonderful husband took it upon himself the other day to call EVERYONE we know and update them on how i'm doing and how we are waiting for remicade, what that is, blah blah.... so that I don't have to deal with it. It was great!!! We went out with friends we haven't seen in awhile and there was no discussion of my health! It was great! Now i'm thinking of sending mass emails with updates on how i'm doing. As for strangers i'm sticking with the bloody poop description to keep them from asking too much.

I totally get you though about UC and college. I was dx'd at nineteen when I was away at school. It was horrible. Kids don't understand if it isn't happening to them. But as for drinking how about saying you are the designated driver, if you walked you are still designated to get everyonw back to their dorms in one piece.

People wanting to cook differently for you never seems to stop. I'm thinking of inviting everyone who insists on cooking especially for me over for dinner and making a big pile of stuff ican't eat, sitting there and watch them eat. Maybe then they will see that it's ok. probably not. I went through this as a kid too. I was a vegetarian and hated telling people. I would just show up, politley turn down meat and eat everything else. Now I find I do the opposite! I eat the meat and leave everything else!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


eliztopp
Regular Member


Date Joined Feb 2008
Total Posts : 46
   Posted 2/27/2008 11:46 AM (GMT -6)   
thank you all so much! this is such a blessing to having so many people that truly care and can share their stories as well. It is so great just to hear that you are not alone and that people DO feel the same way that you do. Today is a much better day, although I have some slight tummy pain (i drank a steamer at the coffee house yesterday, i thought i would be able to handle some skim milk but maybe not : ( they are my fav!
 
{[lizzielu]}
age 20, diagnosed december 2006
meds: Asacol 400mg 4 pills 3x a day; 6-mp 75mg MWF, 50mg SSTTH; 2x iron supplament; 250mg v-C; one-a-day; protonix; prednisone 25mg for one more week! (in the middle of a tapper, down from 40mg started 1/1/08)
low residue diet
Remicade????--pondering, next step


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 3/22/2008 8:24 PM (GMT -6)   
Yujin, I'm going through the same thing. "Maybe if you had eaten more vegetables...maybe if you weren't so stressed out in high school..." It's not like I asked for this disease and there were many other people who were worse eaters than me and/or more stressed who don't have UC!!!!!!!
Luckily after I was diagnosed, I was pretty much in remission so I never explained UC to my friends. And now that I'm in a flare-up, I just stay home. I'm not so close to my friends that I want to tell them about my UC. And when I was sick in the hospital before being diagnosed with UC, they knew I was sick and didn't seem to care that much. *sigh*

Jsanders505
Regular Member


Date Joined Mar 2008
Total Posts : 94
   Posted 3/22/2008 10:16 PM (GMT -6)   
LIZ, Im 21 I cant drink and my friends are always asking me about my diet. I feel your pain. I have given up alot because of UC , including a basketball scholarship. I had to return home half way through the season. There is nothing good about this disease and since none of the medicines are effective it is FINE to vent as much as you want. Maybe if more people vented to their doctors they would take note and encourage more research. I just try to pretend everyone has UC but that is very hard to do when the dr. keeps trying to pluck out your colon.

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 3/22/2008 10:45 PM (GMT -6)   
People at work have taken to telling me how I look, e.g. "you're not looking good, are you having a bad day?" And, if I happen to be looking good, they will tell me, "I'm glad you're having a good day, because last week, you were looking bad." I've worked at the same place for ten years, so I guess people feel somewhat entitled to give their personal opinion. My biggest problem with the whole thing is, I don't want to talk about it anymore! I've told my very close friends to do me a big favor and don't bring up my health anymore, I appreciate their concern, but if I need anything, I will let them know. I've had UC for over 10 years and there's not much more I can say about it. As for those who don't get it and need repetative explanation, my standard is, "I'm slowly losing my ability to control my bowel" (laughing inside) and for some strange reason they leave it at that.

theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 3/23/2008 12:50 AM (GMT -6)   
Liz- I'm in college too at least for another quarter and I go to a huge party school, UCSB. So, of course UC has really changed everything in respects t partying. I don't go out anymore mainly because who wants to go to parties when you're flaring. I have been in a flare for three weeks now and know how annoying people can be. People keep asking you how you're feeling. But all you want to do is feel normal and not listen to the other peoples opinions on what you should and should not be eating. Especially the over caring parents who are so overly concerned who just don't get it that this is the prime of our lives and all we want to do is live it somewhat pro-actively without going diarrhea every five minutes. So, yes, venting is needed sometimes. I feel your pain. UC is by far the lamest thing you can have in college. But I know once im in remission again ill be happy and normal again so I have to look forward to that. Its always the flares that get to us. I understand steroids are a pain, a major one, hang in there.
Jeff, 23, Diagnosed July 2007 probably had it since 2005 but no real symptoms till July 2007 *Left Sided UC*
Lialda - 2.4mg 2x Day
Rowasa 1x (for spot treating and flare ups)
Centrum Multi-Vitamin 1X Day
Lexipro- 2x Day 10Mg


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/23/2008 8:46 AM (GMT -6)   
I'm reall open about my CD so maybe I have a slightly different perspective but I really appreciate when people take my CD into consideration when making plans. The law firm I work at has firm lunches all the time. We always go to places where I can eat, that are walking distance from the office (no traffic to contend with). No one makes me feel guilty about it. But, if they all wanted to go to the mexican resturant on the other side of town, I wouldn't be able to go... or if I did go I wouldn't be able to eat. I like that people think of me instead of me having to say "no I can't do that." Im also allergic to red dye so whenever people bring in baked goods they always use different colors so that I can have some. I don't find that annoying I think its great that people care about me enough to accomodate me. Maybe I am just full of myself and enjoy the attention :)
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 3/23/2008 8:56 AM (GMT -6)   
My story is different, no one even asks me if I can eat that, they act like i am not even sick. The other day, we went out for a friends birthday, and they pick a mexican resturant. No one even thought to ask me if that bothered me. And they all know i am sick, but they seem to brush it under the carpet. Then if I tell them i can't eat that, they say to me.....You do nothing but dwell on your diease. I can't win
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/23/2008 9:07 AM (GMT -6)   
I can usually find something to eat where ever we go. When I was flaring and had to watch really carefully, I'd eat a quesadilla, or fajitas, or a fajita chicken taco with rice. Chinese is a bit harder for me, because they put bok choi in so many things. Rather than buffet, I'd order off the menu and ask for no peppers. They're good about adjusting seasonings for you, because they cook everything to order anyway. about the only place I couldn't eat was fast food places, and my co-workers know I never eat there anyway.

During the times I was afraid to eat much at all, I'd have iced tea and nibble on a flour tortilla or white rice.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Mamasita
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/24/2008 10:47 PM (GMT -6)   
My 18 yr old son was diagnosed with UC two and a half years ago. It has been a nigtmare. He had a bad reaction to Imuran immediately (acute pancreatitis). Remicaide put him in Coronary ICU with acute pericarditis. Therapeutic doses of Asacol are toxic for him as well and give him massive headaches. He has had short periods of stability but has lost all faith in medicine really and is understandably fearful. He is drinking chinese herbal teas and juicing. He is strick with his organic diet and eats according to his blood type to reduce inflammation. He is fearful of eating out after bad experiences and is too unstable to stray far from home for any length of time. He went back on pred only when he could no longer take the pain. He is on a probiotic, 30 mg of pred unable to wean, a low dose of Asacol and a hideous concoction of chinese herbal tea before each meal. He has lost weight, is anemic, in pain, resentful and angry, angry, angry,...sad, and very isolated. Help.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/25/2008 7:09 AM (GMT -6)   
Hi Mamasita - welcome to the board. You should start a new thread with your post so more people will see it. Maybe one of the mods can come around and help you out!!
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 3/25/2008 7:25 AM (GMT -6)   
I can relate, when I'm having a flare I don't tell anyone because it results in non-stop phone calls and people 'checking on me' God leave me the hell alone!
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 3/25/2008 1:02 PM (GMT -6)   
The people who know I have UC think they are experts in my life - "you need to reduce stress", "you should eat this or that"... I love when they are having Chicken & Speghetti or Chicken pot pies, or something like that - "you should be able to eat this because it has chicken in it....why cant you eat it?" - people are very uneducated about what we have.....they have absolutely no idea what we go through - from the food problems, social anxiety about the food, bathroom phobias, etc... UC and Chrons are very cruel diseases!
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety), Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 3/25/2008 1:14 PM (GMT -6)   
I can relate to that too, everybody thinks they know how to fix it and gives stupid advice or some half-crocked home remedy.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort

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