Frustrating!!! (vent)

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Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/17/2009 10:01 PM (GMT -6)   
I went to a party tonight. Goal: to stay out late. Did it happen? No. The food there.... most I couldn't have. The only thing I could have was a tortilla with some rice, lettuce, and cheese. That's it. I've had a lot of unhealthy things which was dragging me down along with the disappointment of not being able to eat all that was provided. I could have mostly the breaded stuff, which of course is not real appetizing. So, I ended up around 7 telling my husband that we need to go. We were there for 5 hours. Had so much fun, but then I started dragging. The other frustrating thing is that I am bringing my husband down too because I needed to go because all the food there was just dragging me down.

I guess I hit the main reason for leaving so early... the inability to eat all that was offered. This UC just frustrates me!

My hubby did give me options, which just totally bored me and made me feel more disappointed. Oh well, maybe we learned that we need to not bring drinks and bring a dish I can eat.
26 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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/17/2009 10:59 PM (GMT -6)   
I'm sorry about your party experience. My husband is suffering b/c of my discomforts. We would enjoy a night out with friends...but if we do anything it's just for dinner and that's it. That's about all I can stand. We'll have friends to our home for dinner, but we have a smaller home and that's a little embarrassing at times, so when I'm really sick that doesn't happen either.

It would be so nice to just not have to think about what restaurant has a menu fit for our needs...be able to attend gatherings and parties without worrying about what we can have while there.

The only suggestion I have is to try to eat something at home to fill you up a little more before going somewhere. I would do that when I was calorie counting (post UC days...as nothing matters while taking a load of prednisone!)...and it really made a huge difference. I like to oink out on rice cakes and rice snacks. Fit and Active has an awesome carmel snack...Yum!

Gosh...I do know exactly how you feel. I become so jealous when my friends talk about their nights out...the drinks they have...the foods...just being able to stay out past 10pm... *sigh*

I hope your evening get better...or perhaps you'll have a more cheerful day tomorrow!

I have days that I tell myself and others that instead of being a Negative Nancy I'm going to be Happy Hatti! I normally have to verbalize this because I become so irritated with how I feel that I have force happiness.

Good luck to you!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/17/2009 11:14 PM (GMT -6)   
See, I did have a great time, but when we first started dishing up the food, I had a hard time not feeling disappointed and frustrated. Since I've gotten this UC, we've never really been out like we have lately. I LOVE being out like this, I don't like being the "party pooper." I'm trying to figure out what to do for next time because I don't want my hubby to be "annoyed" at me. I've discovered that I do need to eat before, provide something at the party that I know I can have. The gal that was providing the food, made all the food look good, but put certain things in there that I can't have and would have a hard time picking it out. I just hate bursting my guy's fun. I also decided that I'm going to put stuff in my purse to snack on if needed. I know it's a lesson learned, but it I know it takes time to figure out a "plan" so we both have a good time. Unfortunately, my head was hurting due to lack of food and the food I needed. I needed more healthy stuff. The meal was all mexican. Mexican = spicy. sad So, that kinda turned me off cuz of all the spice.
26 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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/17/2009 11:33 PM (GMT -6)   
Mexican...YUM! That's going to be my final meal before the surgery! My mom and I are making a huge, spicy, greasy, cheesie, sour-creamy Mexican fiesta! Whoo-ohoo! : ) Yeah, I've not had a good spicy meal in ever!

We went out of town to Hooters last weekend and I took a double dose of Immodium before leaving and another while at the restaurant. It had been awhile since I'd been there, so I forgot what was on the menu. Not a whole heck of a lot that I can eat...I got a grilled chicken sandwich and fries...the sandwich had sesame seeds and the fries I knew I'd pay for...but I couldn't get the yummy things everyone else did. Oh, and the fries had some seasoning that was good but stupid for my tummy.

So, now that my last infusion is doing no good, and I'm up all night anyway I haven't been strictly watching my intake. I'm not having any of the major no-no's, but I ate an entire bag of Valentine candy hearts in the past couple days...I don't care. I'm having the surgery soon and my diet will severly be altered, and I'm going to eat super healthy b/c I can lose weight after I'm off the prednisone. Yep...life will be good again!

I am very very very sad b/c popcorn has always been my favorite food...for me it should be a food group all of it's own...and of course we all know that with active UC that is completely out of the question, then once I have the ileo it's a big no-no b/c it can cause blockage. So, I'm trying to decide whether that may be my breakfast during my last day of eating. : )

I completely know how you're feeling...and I'm so glad to see that you're in remission!!! Yea!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/18/2009 12:00 AM (GMT -6)   
I too am glad I have been in remission for a while, but I've gotten kinda shaky because I've gone off a pill. I think my medicine has been a bit of my security, now that I'm going off of it, I'm learning how "clingy" I've gotten. I'm glad I'm off this medicine and am doing good, but still feel a bit unsure, and am extra cautious. My hubby is still in college, and when I got diagnosed, he was in colege. It's too much stress on him if I fall out of remission. Guess, there are insecurities due to this thing too.

When is your surgery? Don't you have other options before surgery?
26 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


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/18/2009 12:14 AM (GMT -6)   
I have to vent about this one. It's been a great ordeal for me to eat out. I get serious diarrhea every time I eat something that contains HFCS, including sauces, ketchup, mayonnaise, breads, ..., you name it.

I have to read the ingredients of everything I buy, and I bring my own food to parties, including office parties. After all, even cake or pizza could have HFCS in it.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/18/2009 12:22 AM (GMT -6)   
I was always under the impression that I would never be off medication for this disease, and at first the Asacol started to the trick, but I had to double that and stay on a high dose of Prednisone...but then that failed and we started Remicade...which isn't working either. I have a severe form of pancolitis and it's just really exhausting. My side effects to these medications is a very attacked immune system and nasty infections. I have so much living to do that I'm not going to waste any more time than I already have suffering and struggling to get by.

: ) My family and I are very excited about the surgery and I'm looking forward to just getting on with it! I too am in school...grad school...but I had to take this semester off b/c I just can't do it...I'm too sick...and I need to focus 100%, which I am unable to do. I've also spoken with others who have had the surgery and they all wish they had it sooner...I don't want to be able to say that. I want to say that I had the surgery b/c I knew it was the right time and that I refuse to wait around and wither away. : )

So, yep...it's all very interesting. One struggle to the next, and though the surgery is going to be an adjustment and something very major, it's also very welcomed. Anything post surgery is going to be an improvement to the way we are currently living our lives.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/18/2009 12:27 AM (GMT -6)   
I will be praying for you RobinByrd. I guess we all can relate to our "pickinesses" of food due to our crazy bodies that reject what we used to be able to have before we got this disease. That's why I posted on here, I know that it's an understandable site to post this on.
26 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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/18/2009 9:06 AM (GMT -6)   
Heck yeah...never did we think we would grow up to have food restrictions! What?! No popcorn...that's what kills me the most!!! I even had the cool stove popper that you use oil and crank it yourself...YUM! I had my husband take the bag of pecans my grandma gave us to his domain in the basement and they were in my giant popcorn bowl...I'm sad b/c I can't have fresh pecans either...my grandma gathers them himself and they are the best ever!!!...but I told my husband last night that I never want to see that popcorn bowl upstairs again. : ) Boo-hoo!!!

I do love Taco Soup though, and someday after all my surgeries I'm going to be able to eat all the Taco Soup I want with sour cream! Nummy!!!

I know it's silly, but I do love food...I don't base my day around my meals or anything, but I enjoy eating...I enjoy cooking...I enjoy food with lots of flavor...I like watching Food Network...in fact, one of my top three career choices is being a baker and designing cakes and cookies. : ) However, counseling is my current career path and though it's an expensive education, I may have to open a bakery to just make money! Counseling is definitely a helping profession that does not have a big dollar sign involved. : ) You do this job b/c you love it.

Sorry, I do ramble quite a bit. : )

I hate that you are allergic to Remicade...wow...how horrible that lesson must have been! I'm severly allergic to steriods other than Prednisone...talk about feeling drugged!!! And Asacol has been my staple medication...I'm sure it makes some difference but right now I feel that I just pump myself full of pills without much benefit.

I hope you've had a nice weekend!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/18/2009 9:32 AM (GMT -6)   
I'm not too disappointed about not being able to take Remicade because I have found Humira. It cost a lot more than Remicade would, but it has helped me. So, I'm thankful for it.

I guess you are anxious for the surgery so you can go back to a normal life right now.

Over all I'm having a good weekend, not over yet, but it will end too fast tomorrow. ;)
26 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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/18/2009 2:57 PM (GMT -6)   
We're getting our house ready for post surgery...as I want to be able to be home with my son as soon as possible. There are going to be lifting restraints so we're babyproofing almost every square inch so I can be with him. I'm also hanging out with him on the floor a lot...we're having picnics on his floor mat and I'm changing his diaper more in the play area. : ) I just don't want him to think there's a big adjustment. Our family is already frequently here, especially my mom, b/c lately I've just been unable to maintain certain household duties. I'm too tired and just ucky feeling.

We've had a good weekend...my son is teething so he's cranky and he's learning boundaries, so he's been upset a lot.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/18/2009 6:56 PM (GMT -6)   
I've given up so many food since last fall, and it is weird to go to parties and eat and drink little if anything. I even hosted a day-long b-ball watch party yesterday, and could not eat anything I offered except for potato chips! That was weird, to make all the stuff and not have any of it. I'm touched that many of my friends try to be sure to offer something I can eat, they phone me with questions before parties or tailgates. (They know about my problem with wheat issue, but not the UC part). I even had a dear friend look up a bunch of recipes for desserts for our Sex-In-The-City watch party. I could eat everything!

So hang in there, you'll manage. Oh, and watch the lettuce! It tears me up.
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 wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 

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