What do you miss?

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Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 10/7/2008 12:34 PM (GMT -6)   
When you're flaring and can't do much of anything, what are the things you miss the most?  Or even if you still do those things (like eating chocolate cake), what do you wish you could do without having UC cause a problem?
 
I miss taking my son for long stroller rides.  I miss walking to the end of the pier near my parents' lake condo.  I miss fried chicken, cocktails with my husband, and the ability to clear out 1/3 of a box of chocolates without paying dearly for it.  Even though I stay home with my son, I miss working (because I know I couldn't go back even if I wanted to).  I miss taking only one pill in the morning.  When everything else is going wrong in my life, I miss that blissful sense of "well, at least I have my health."  I miss restaurants.  I miss the old me.
 
What about you?
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG as needed.
Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga and walking.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/7/2008 1:35 PM (GMT -6)   
I miss everything I was able to do before I got this DD...especially being able to do things whenever I wanted, spur of the moment was how I lived a lot of my life, now it's always planning around this stupid disease.

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


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/7/2008 1:46 PM (GMT -6)   
I miss not knowing what it's like to have a chronic illness. That is what I miss most.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
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!
 


Limeycricketlover
Regular Member


Date Joined Oct 2008
Total Posts : 67
   Posted 10/7/2008 2:19 PM (GMT -6)   
I miss a night's uninterrupted sleeeeeeeepppppppppppp....
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.


potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 10/7/2008 2:20 PM (GMT -6)   
All of the above plus ibuprofen.

Potato...  Female, 58, dx 11/07 mild left sided ulcerative colitis (50 cm)
asacol 3 3x a day, cortenema (generic) pm rowasa every other day 
culturelle, benefiber wafers  generic acidophilus, metamucil wafers, activia yogurt, spinach & sunflower diet, primadophilus reuteri
children's vitamin, Vitamin E 400 mg, omeprazole 2xday
oxazepam when needed, lomotil or ImodiumAD when needed
Yoga, meditation, The Work by Byron Katie, exercise at least 5 days a week
 
 
 
 
 
 


aquafly79
Regular Member


Date Joined Aug 2007
Total Posts : 317
   Posted 10/7/2008 2:26 PM (GMT -6)   
I also miss being able to say "At least I have my health"...I also miss the 'old me'( and I have a two year old as well, so part of it is that), I miss having energy, I miss eating food and not feeling bad about it...oh, how I love this site that I can say all this!
aquafly79


Diagnosed with UC in 2004

On prednisone for current flare, just starting to taper from 40mg, will see what happens..

Currently on Sulfasalazine(working up to 4 pills/2x day), Imuran 75mg, Prednisone 40mg, prenatal multivitamin, folic acid, calcium, 1200mg fish oil, and Bifidus Balance FOS probiotics.

Mesalamine enemas as needed...


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 10/7/2008 3:19 PM (GMT -6)   
Limeycricketlover said...
I miss a night's uninterrupted sleeeeeeeepppppppppppp....

YES!  I second that.
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG as needed.
Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga and walking.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare
 
 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 10/7/2008 3:49 PM (GMT -6)   
I miss getting up and feeling really good. would like to feel normal just one morning. even in what I consider remission, I still dont feel perky are rested. And I miss salads and ICE CREAM. But I dont like to complain to much because I know alot of you have it alot worse then I do. At least I get by with the asacol and canassa.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/7/2008 3:57 PM (GMT -6)   
I miss not having to worry about health. I miss not having to plan my life around a disease. I miss having unlimited options. I miss not having to worry about health insurance and money. I miss normal mornings. I miss salsa (and all spicy foods for that matter). I miss my energy.
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
 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 10/7/2008 3:59 PM (GMT -6)   
I miss the ability to plan a trip and not worry if I'm going to be in flare mode when the trip comes around.

I miss not having to spot the restroom of EVERY place I go, whether I'm in flare or not. It's habit now.

I miss popcorn and milk products.

I miss all the money I've spent on toilet paper in the last 14 years.

I miss all the time I've spent on the crapper.

vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 10/7/2008 4:08 PM (GMT -6)   
I miss having energy. Even when I'm in "remission" I don't have any. I miss being medication free. I miss eating mexican food and drinking Dr. Pepper. I miss going to the bar with my husband and eating loaded potato skins and having a beer or two.

31 year old female diagnosed with UC (entire colon) Feb 2008
(4) 400mg Asacol 3x a day
Remicade 10mg/kg every 8 weeks 6 weeks
Rowasa enemas nightly
Omega 3 supp, calcium supp, probiotics
metamucil wafers
Prednisone again!!  30mg


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/7/2008 4:46 PM (GMT -6)   
This is a sad thread.

My daughters best friend is only 4'10'' tall from having radiation to the spine. Her hair is wispy thin from chemo. She is pretty happy though.

I have another friend who had a stroke at 27 and his arm is all twisted up like a pretzel and he can only limp and barely walk. He is pretty happy.

I know self-pity, sometimes I am a queen of it. But this can be a dangerous line to follow. We all have horrible stuff that can make us miserable. But it's still life. You guys here are amazing people, there is stuff you say on this board that is so encouraging. You don't realize the positive impact you are able to have in peoples lives because of your maturity and experience. It's beauty from ashes.

I am sorry if I misread this thread, and Kiss, I am not picking on you. I am sorry because I know what it means to miss stuff, but I got so sad to read this I just wanted to encourage you all that in the midst of your struggles you guys are amazing gifted people who have really helped me. Thank you.

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 10/7/2008 6:03 PM (GMT -6)   
That's cool, sunshine. I understand where you're coming from, and I have no hard feelings. I just know what I miss, and I'm curious what other people are missing. By no means do I feel like my life is miserable. I'm so blessed to have a wonderful husband and son and the ability to stay home with my child without suffering financially (well, not too much anyway). My family is super-supportive, which I know can be rare. For most of my day, I'm very happy. But its a fact of this disease that we will miss a lot of things because of it. And sometimes it helps to share those things with other people.

Every time I get down about this disease, I always think about my first thought upon hearing my diagnosis: Thank God its not cancer.

I always know that things could be worse, and I think everyone else here knows that, too.


Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG as needed.
Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga and walking.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/7/2008 6:05 PM (GMT -6)   
It's important to share our sadness along with our happiness, afterall if we tried to stay positive all the time then that wouldn't be very realistic...it's a good balance of being able to self-pity once in a while and also give encouraging news/info.

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


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/7/2008 7:13 PM (GMT -6)   
I just felt sooo sad to read this. Maybe it is me, like my coping style. That could be it. When I think about what I don't have I start getting very depressed. I can sink like a rock in a pond. The only way out of it for me is to think what I can be thankful for, and sometimes that is hard. I was trying to encourage you all, because I do think you all are amazing people! Not many people will understand what we have been through and have a good attitude.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/7/2008 8:05 PM (GMT -6)   

I know I am new and 68 but I don't really miss anything - thank God I am alive and able to live a somewhat (adjusted) normal life!!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


Tea42
New Member


Date Joined Aug 2008
Total Posts : 14
   Posted 10/7/2008 8:10 PM (GMT -6)   
I am thankful for this post. It helps knowing other people are missing things too. I miss having cocktails with my friends. I miss my hair. I miss going camping and I miss being able to eat all the spicy food I still crave and love...

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 10/7/2008 8:12 PM (GMT -6)   
Sunshine - Just keep in mind that this disease makes us go from happy to sad and back again many times throughout the day. I've always been a glass-is-half-full kind of person, but sometimes I like to wallow in self-pity, and if others want to join me so much the better. Misery loves company. Its okay to share some negativity and complain a little. Sometimes that's the stepping stone to get back to other side (happiness).

I love this forum. The people here have pulled me through some rough times, and I SO appreciate that. They also comfort me by sharing their problems. It helps me to feel like I'm not alone during the bad days.

I'm sorry if it brought you down. That was not at all my intention.
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG as needed.
Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga and walking.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare
 
 


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/7/2008 8:17 PM (GMT -6)   
no no, (((((((((((((((big hug))))))))))))))))) I well know your feeling. It just made me think that maybe I am more susceptable to depression than most people!!

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 10/7/2008 8:21 PM (GMT -6)   
I completely understand. I certainly get down more easily than I ever used to. I'm taking Zoloft for the first time in my life! I always thought I'd be the last person to need THAT! ;-)
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG as needed.
Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga and walking.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/7/2008 9:46 PM (GMT -6)   
Yes, some people have it worse BUT, devil  to play devil's advocate, some people have it much better.
At least for me, when I'm having a bad day, it's really hard to overlook the fact that some people have it so much better than I. On a good or okay day, I can get past this disease due to the fact some people have it much worse. Sometimes we have those bad days and need to wallow.
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
 


Nolan
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 10/7/2008 11:29 PM (GMT -6)   
I miss Chili Relenos', spicy foods, and Alfredo sauce :)

I miss having energy, and the normal lifestyle I should had appreciated more when I had it.
Nolan - 18 Years old
Diagnosed UC - February, 2008.
Meds:
Prednisone - 25mg Daily (Tapering from 40mg)
Imuran - 100mg Daily
Pepcid - 80mg Daily
Multivitamins
Calcium + Vitamin D
Asacol - 1200mg Daily

Currently - On the borderline of flaring up.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/7/2008 11:59 PM (GMT -6)   
WE all have every right to miss things and to be able to express it as well, and who better to express it to than other people who can totally relate...we are all human after all.

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


piper_chris
Regular Member


Date Joined Jun 2008
Total Posts : 73
   Posted 10/8/2008 12:19 AM (GMT -6)   
I miss having vacation time! Where I work your time off is all lumped into one pool of hours - vacation, sick, and personal are mushed together. So people who are never sick (or drag themselves into the office in spite of being sick) and never have doctors appointments that conflict with their work hours end up with a good amount of vacation. But people like me use up almost all of their time off hours with sick days and doctors appointments, and there's none left for vacation.
- female 41, diagnosed ulcerative colitis Feb 2005
- just got off prednisone after a 5month taper from 80mg down to 0mg!!
- currently 6-MP/mercaptopurine/purinethol 75 mg, asacol/mesalamine 4800mg (4 pills x 3 times day), Canasa 1000mg nightly
- VSL#3, fiber supplements, multivitamin, chewable calcium, fish oil, biotin, sometimes iron pills


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/8/2008 3:23 AM (GMT -6)   
I miss two things...being able to exercise daily without completely wiping myself out...and secondly I really miss being able to drink a beer when I want to. The exercise I've toned back so that I don't kill myself, but I can't do nearly what I used to. As for the beer, it has fallen completely by the wayside. The discomfort just isn't worth it to me anymore.
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)

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