is anyone else completely frustrated with not being able to get this under control??

[melissw]

just needing to vent and would love some words of support right now.  i'm 29 and have had ulcerative colitis since 2001; i've been fairly lucky with it and have been able to lead a pretty normal life, but lately with a recent on-going flare-up (mild enough to continue work (uncomfortably), i am feeling so frustrated, particularly with diet.  I try to eat healthy and after about 2 weeks of eating only soft foods (a low residue diet), i went "crazy" and splurged with some nuts and fibrous vegetables.  i'm sorry if i sound bitter, but i sometimes get so frustrated that just a few things can set me back so easily.  i felt pretty good the past few days so that's when i indulged and the next day i had the same old intense cramping, frequent bathroom trips, blood, etc...

i know we've got extra sensitive guts and i've learned a lot of valuable lessons from having UC, but sometimes it just gets you down... know what i'm sayin??

[melissw]

thanks for sharing kelly... sorry to hear about the recent terrible flare up.  yes, that is the most important thing that i have learned... this too shall pass.   i hope you feel better and good luck with your colonoscopy next week.. wishing you lots of support,gratitude and a happy new year,
melissa

[mizzscarlett]

Hi,

I have had UC since I was 12 and I'm 48 now.  I have had the past 4 years symptom free and then had the worse flare up on Dec.1.  It was the absolute worse one ever and was mentally debilitating as well as physically debilitating.  There really are no ansers except to know that "this too shall pass".  My Doc started me on  60mg of prednisone and I'm still taking it (down to 20mg per day).  It made a world of difference and it put me on the track to getting better.  I am scheduled for a colonoscopy next week to make sure something else isn't happening.  Stay strong and keep praying!

Kelly

[melissw]

Thank you so much for your support and advice Trudy.  In my relatively brief time of having UC, I've also found it directly related to stress.  I'd like to avoid taking any more medication (i.e. anti-depressants) but I have learned to seek help (one form is MedHelp :) from friends and family.  It really does help to know others who have this condition, as I often have the "woe is me... i'm the only one who can't have a drink..." attitude.  

On the brighter side, I've learned to really appreciate the things that I have right with me.  That is the beauty of illness.  It makes you so grateful.  Your son is very lucky to have a mom who understands what he is going through.  Thank you so much again Trudy, Your understanding words have helped to soothe me :)

[TrudieC]

I'm so glad you have this forum to come and vent.  I had UC for 10 years (starting in 1983) and back then we didn't have the internet to help us with what to eat and support, etc.  I really felt alone.  I had the J-Pouch surgery and have had very good success with that.  My son, 23, now has UC and I am reliving my experience and see that his is quite different.  He is very sensitive to foods as well and deals with anger that he has to watch what he eats and where bathrooms are when he sees me cured and he wants that too.  He has started on Imuran as he feels it will allow him more freedom.  I hope he is right.

UC can bring you down.  Watch your moods.  I did have some depressive episodes during my sick years.  Don't be afraid to ask for anti-depressants and help.  Stress control is so important.  Try and find things that really help you to relax (baths, massages, reading were mine) and if at all possible, make changes in your life that will help you with the stress.  Eliminate toxic relationships.  Change your job.  Give up on having the perfectly clean home.  Stress was what really affected my disease.  Good luck with your journey.

[melissw]

hi there...

thanks for sharing my frustration!  

well after 7 years, i still haven't figured it out exactly.  everyone who has this disease has different levels of severity and can tolerate different things....

this is what i've found:  i completely avoid the obvious things like alcohol, coffee, dairy, heavy, fried foods, super spicy things...  i have a hard time avoiding sugar (especially hard to resist christmas cookies and treats like that), but i know that eating too much sugar is bad for me too.  

i've found that eating raw vegetables/salad does a number on me.  i limit that too.
i also avoid meat, but i do eat chicken, poultry and fish...

i've gone back and forth with avoiding wheat/gluten, but i don't see a huge effect.  some people say a gluten free diet helps them though.

the best things (for me) that i've found have been:
Fish (steamed/baked, not fried) and steamed/sauteed vegetables.  

right now with my symptoms (similar to yours) i'm eating soft foods (rice, avocados, steamed low-fiber vegetables (like zucchini, carrots, etc.).   i just had some applesauce too.  kind of like baby food for grownups...

anyway hope this helped a bit and i hope you feel better!
take care :)

[ali166]

hi there ! i know wot u mean! i was diagnosed with uc about month ago and i have no idea wot to eat or not to eat? any suggestions? i have a couple of bad days at the moment watery bloody mucas!! xx