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storysinger81
Regular Member


Date Joined Jun 2009
Total Posts : 82
   Posted 6/11/2009 12:41 AM (GMT -6)   
Yesterday, I became so angry at my disease and what it's taken away from me that I started crying at work (no one could see... I was in the bathroom).
 
IT'S NOT FAIR!!!
 
I was depressed and unhealthy in high school, but I worked hard to lose 60 lbs and learn about nutrition and exercise and also attending counseling to resolve my mental health issues.  Since that time, I've made good health inside and out a major priority for myself.  And I've had a lot of success to that end.  In just the last two years, I earned my black belt in taekwondo, learned to swing dance, and have clmbed many mountains in Korea.
 
And I can't do ANYTHING since I started UC symptoms.  I get tired after just an hour or so, I've been missing TKD practices all the time, and I can't dance more than two or three songs without getting tired now.  I hate it!  It's like I'm that horribly unhealthy, depressed girl again.   I have even told my fiance not to bother coming over because I'll be asleep before he gets to my house (it's about an hour drive).
 
And I'm not coping well with the emotional side of this.  Because I feel like it's come out of nowhere for no reason.
 
I just feel SO frustrated.
 
And guilty.  Because my UC is very mild compared to what a lot of you guys describe.  And, in the grand scheme of things (especially with a mom with fibromyalgia and arthritis and a dad with diabetes just recently in remission from cancer), UC isn't even the worst disease one can have.  But I'm just pissed.  Because I worked so hard for my good health.  And I feel like it's been taken away from me.
 
And I don't know what to do, but I just needed to share this all with someone.  I wanted to feel like maybe I'm not so alone...

~Diana
 
28 years old
Diagnosed with Mild UC May 2009.
Currently on Asacol 2 pills/3 times a day.
Preparing to begin Vegan Healing Diet


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 6/11/2009 1:14 AM (GMT -6)   
Hi Diana....you're far from alone in the anger department...and it's no use to compare yourself to others as your measuring stick for what you should and should not perceive as being bad enough.

UC can be very managable...but that doesn't mean you won't have to adjust your life somewhat or have to take meds or have flares, etc.

I will at this time say you aren't on enough medication. You should add rectal meds to your regimen...If you're in the US, Rowasa retention enemas are what I'd suggest. If you're not, there are Pentasa and Salofalk enemas in Canada and the same two plus Asacol enemas in the UK and Australia.

I see you're going Vegan....hope you get enough protein, because that can be part of the cause of your fatigue.

Have you had your thyroid checked as well as Vitamin B12, Vitamin D and iron?

Part of the issue may be mild depression....the fact that you have much going on in your immediate family with serious illness can take a lot of one's emotions and possible need to shut down a bit.
You're very busy with working full time plus having a boyfriend and just the recuperating aspect of being emotional and dealing with a flare and a new diagnosis requires much rest.

Changing your routines and allowing yourself time helps a lot. Once you start to feel better, you can add more things.

It's great you're dancing (awesome emotional upper), and doing TKD..but they all require a lot of stamina and while healing, sometimes it's just not there.

Make sure you're getting enough to eat/calories to keep your energy levels up.

Maybe do walks instead of more strenuous activities for a while and eventually, you'll get back to feeling like the old you.

The fact you have mild UC is a good thing....your goal is to keep it as such, hence my urge to get on rectal meds as well.

Hang tough...it's a bumpy ride, either a lot or a little.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/11/2009 9:46 AM (GMT -6)   
Well said Quincy. I would also suggest that you might be more gentle with yourself. 


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/11/2009 9:56 AM (GMT -6)   
You are definately not alone in this battle. We are here for you. Having Uc can be a major challenge. And it doesn't matter if you have it mild or severe, it is still a life altering diagnosis regardless. We all do the why me's - heck I've been there myself so many times with Uc and now with arthritis. All we can do is keep our chin up and try our darndest to keep plugging along. I am a very optimistic person - if the glass is a 1/4 full I say Wow! I have a quarter left! I apply the same mentality with my Uc. Sure I have given up alot of things but the things that I CAN accomplish make me super proud of myself. But I didn't get this postive mentality over night. I have had this a long time and it took me a while to understand my limitations.

Once you get your Uc a bit more under control, the energy level should bounce back a little. Definately have your iron and B12 levels checked as this can account for the major fatigue. I have had my B12 checked and all is well but sometimes I take B12 supplements to head off the fatigue. Do you take a multivitamin?
 @--->--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 ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-had 2 series of 3, OA-Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/11/2009 10:39 AM (GMT -6)   

You are right - life is not fair!  Having said that - hang in there!  We can't go back - we can only go forward. 

In my 69 years I have had a lot of ups and downs and UC is certainly down there with the lowest.  I am very fortunate not to have been diagnosed when young but I did have IBS for many years.  I am very happy I don't have cancer like my husband or blind like my Mom - there are so many worse things out there.

I see you are in Korea - making it a little tougher for treatment, etc. I would think.  Quincy is so right about rectal meds.  I can't tolerate any but wish I could because they can be the difference between remission and ALMOST there.  Ask about them. 

Hang in there and come here often for support and suggestions to ask your doctor, etc.  It helps!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 6/11/2009 1:44 PM (GMT -6)   
We all are entitled to feel a little sorry for ourselves now and then.
I agree there are things you can probably do to get your energy back up.
And I'm sure all your healthy habits will help your body cope with this better, so pat yourself on the back for that!

I hope you start to feel good again soon.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


storysinger81
Regular Member


Date Joined Jun 2009
Total Posts : 82
   Posted 6/12/2009 5:02 AM (GMT -6)   
Thank you so much everyone.

Quincy, you've given me some stuff to think about. I'll try to discuss the blood tests with my doctor at my next appointment in a couple weeks. (One of the problems with getting medical care in another country is that there are also cultural issues. In Korea, asking your doctor questions is seen as disrespecting him. My doc has more experience with "foreigners" than most, but I still have to be careful 'cause he's been great so far and I don't want to even think about having to find a new one in this country.) I have been prescribed an Asacol suppository, but until just a couple days ago, I couldn't keep it in (like I'd have to go really bad as soon as it went in). so I'm hoping that starts to help.

MMMNAVY, I'm trying! I'm doing yoga in the mornings and I'm starting to do swimming again until I can get back into the TKD studio (man... I was getting ready to test for 2nd degree black belt... stupid life!!!). I can't not do exercise or I start gaining weight like a crazy person, even on a healthy diet.

Red, I'm back in an optimistic swing right now. I'm trying to ride it out, as it's more my natural style. I think part of the problem is that my fiance and I hadn't worked out how we can see each other on my altered schedule of pretty strict 10 or 11pm bedtimes. We talked it out last night and even though he doesn't fully understand (there is a small language barrier because he's not fluent in English, nor am I in Korean, and things like medical discussions become a bit more challenging), he's very supportive. I may ask him to come in to the doc with me so the doc can explain it in Korean. I'm so, so lucky to have this man in my life.

kops, Thanks for the support. I needed to hear it!

Peety, Don't want to speak too soon, but the yoga seems to be helping a lot. And hydrating. I'm drinking at least twice as much water as I was before being diagnosed.

This place is great and you are all so kind to respond to me. Thank you, again.
~Diana
 
28 year old American in South Korea.
Diagnosed with Mild UC May 2009.
Currently on Asacol 2 pills/3 times a day and nightly suppositories of the same.
Stage One:  Food Journalling and Research about UC
Preparing to begin Vegan Healing Diet

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