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How do you come to terms with UC?

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Posted 11/28/2011 5:24 PM (GMT 0)
Hello All!
I hope your holidays are well on their way to being great this year... I post today with a huge question that is starting to come to the forefront of my mind alot lately.
I am relatively well these days (Thank the Good Lord!) but it seems that in the past almost year of being "sick" as they call it, I was so sick in the beginning that getting well was my only goal and hope... then came the right diagnosis and medications which brought relief... then added in all the supplements, compliments of this forum and all the great advice... things really started looking up for me health wise(Yay!)... I was so focused on the physical part of this disease that I didn't coddle and cope with the emotional part of it.

Now on to today and my question... How do you emotionally start to heal from this? Where do you find the inner peace that accepts and heals your soul and maybe your body?

Please give your insight on this, I want to enjoy my holidays with a good emotional well-being! Thanks!!!
Posted 11/28/2011 8:44 PM (GMT 0)
Not sure. This is what I always tell myself: Any day your a** isn't bleeding, is a good one!
Posted 11/28/2011 9:01 PM (GMT 0)
It's easier to accept things when we feel we're in control, especially if we have more than only one option to pick....so lots of options are a key factor.

So, for me, having medications to deal with flares allows me that personal "freedom" to not depend on my doctor as much. But, if things are a bit out of the ordinary, I can make an appointment to touch base and confirm treatment and have things checked out further if needed.

I'm not looking for a cure....that could be part of acceptance.

I've also had physical/emotional problems forever, so there's not a day that goes by without me having to "deal".

Therapy helped me deal with family/emotional issues, so indirectly acceptance of things in general was part of it.

Accepting doesn't mean failure. Realistically, we're not perfect beings, and we're flawed by nature just by existing in this world.

I personally get ticked at having to stick medication/preparations in practially every orifice of my body or on my body to deal with some sort of malady, be it minor or major. It's a total pain to be so self focused.....AND it takes up a lot of time, causing more aggravation.

You have to ask yourself....what will I have forever, what can I treat, what will eventually go away, what can I maintain...blah, blah.

It's personal choice. It's OK to be angry, but one has to move forward at the same time. If you use your whole life to focus on something that has to be maintained beyond a reasonable quality of life, changes should be made.

You can change your perspective at any time, for what you don't know today, you will tomorrow.

Set up a good support network. Be realistic.

It's an ongoing process....what I know today is so much more than what I did before I was diagnosed. Once diagnosis, having a good doctor who answered questions, I was even better yet. But, there were other issues that happened along the way, and I had to deal with them as well. Eventually the UC aspect or the physical aspects were easy because I learned what to do.

Now, if dealing with a cold could be just as easy, and it's something everyone gets, but gets me in a state I absolutely hate...because I'm so miserable having a cold! I'd much rather have a flare.

q

Posted 11/28/2011 9:09 PM (GMT 0)
I was diagnosed when my son was about 3.5 months old. The symptoms started when he was about 4 weeks old and by the time I was diagnosed, I was over 25 lbs below my pre-pregnancy weight and was so weak I couldn't get out of a chair if I was holding him. So, I was mostly just relieved to finally know what was wrong with me, that it wasn't anything that was going to kill me, and that there were treatments that would very likely allow me to live a normal life. Sure, I had some sadness and bitterness that I now had a chronic disease, but to be quite honest, with a newborn at home (and no family living nearby to lend a hand on a regular basis), I really didn't have time to dwell on it and have a lot of "poor me" type thoughts. Plus, I had a sweet little baby to rock, snuggle, and enjoy. It honestly didn't bother me all that much. I was also on zoloft when I was diagnosed, as I had issues with post partum anxiety after my son was born. So maybe that helped. However, I went off of it long ago and I still haven't had issues accepting my diagnosis.

I did a LOT of research immediatley after being diagnosed, learning about the different treatment options, both mainstream and alternative. For me, knowledge is power. I know there's a lot of arsenal beyond what I'm using now to throw at this disease. I also learned a bit about the different surgical options, and take a lot of comfort in knowing that if it gets bad enough, I can have surgery and be done with UC. I was (and am still) glad that there are members on this board who have had surgery and are quite happy with the results.

However, I have been really lucky and have been in remission ever since that first flare ended. I fully imagine I'd feel differently about having UC if I had trouble managing it. Sure, I've got it, but it doesn't influence my daily life and keep me from doing what I want to do.
Posted 11/28/2011 10:06 PM (GMT 0)
I think a lot of emotional healing, and finding inner peace has to do with not being mad or frustrated about having colitis, but being thankful it's made you who you are.

A lot of people are angry and frustrated that they have colitis, because they only see downfalls of the condition. I know it sounds sort of ridiculous, but a lot of people who don't have colitis might not get to experiences the challenges that IBD has.

For me, it has given me purpose in life, to someday work towards the cure of colitis, or at least figuring out what causes it. Otherwise I'd probably be a pleasure seeker like my sister is; an alcoholic business student trying to go for the riches but only falling in debt. IBD has taught me to understand how humans act socially, and what drives people to do what they do in life. On the more superficial side, it has taught me to eat better, and ace my health all around to feel good everyday and look good too... ;)

And most importantly, it has brought me closer to appreciating simple things in life. Even appreciating the whole journey of life, and although it might come to an end someday, I'm happy knowing that I'm able to say it was a wonderful journey that I'm proud of :)
Posted 11/29/2011 2:13 AM (GMT 0)
i have started healing by doing all the things i love again. also, working has given me independence and a sense of worth. when i was really sick this year, i could've cared less if i died. i honestly lost the will to live when i was in the hospital and my parents could see it in my eyes. i will never lose that will again and i am so happy that i came out of it. i didn't realize how strong i was and how strong my mom and sister were until i couldn't do simple basic things on my own. when my mom and sister had to bathe me, that's when i learned that love is the most important thing in life. it's kind of sad that it took my illness for everyone in my family to become close, but at least it happened.
Posted 11/29/2011 8:41 AM (GMT 0)
I try to maintain perspective.

I have UC and GERD, but they are controlled with meds. My brother and one sister also have UC, but their disease is much worse than mine and their's doesn't get the better of them. Besides, there are worse things.

I was outta work for 7 months, but a guy who started when I did was out for 2 years. I still feel like a fish outta water--it's only been a few weeks back to work--but that other guy was totally thrown into a foreign environment whereas I have some prior experience.

We'll lose our house and probably do a deed in lieu since I took a huge pay cut and commuting right now is pretty costly on gas. But, Olympia is a nice area, cheaper to live, and I can get within 5 miles of work easy so I can get back to being a year round bike commuter. It's free and good for my health.

My health insurance costs are going up next year, a lot, but compared to what we were paying for private insurance it's no comparison.

I know people out of work and with slim prospects. I know people who've lost their homes, running out of unemployment, and likely some will move into their cars. One car accident away from financial ruin.

This isn't nihilism. It's a sober embrace of reality.

Posted 11/29/2011 10:31 AM (GMT 0)
fist thing:
1. you must come to terms with the fact that you have a long time disease, with no cure.
2. you must give up finding a cure and push to get in control of your disease: medication, diet, suplements, surgery - those are all steps that can put you in control. but you must be in control, and not let your meds, diet and so on control you...this means you must know when to stop pursuing something, means to know what to expect and so on.
my motto is: never have high expectations, because sooner or later you'll have big dissapointments.
3. keep your family close, they're the ones that can help you get over this. make them understand your problems, search for their support but do not act like an invalid - you must also provide them with support and optimism.
4. if you feel you are depressed - seek medical advice. depression is one of the things that will perpetuate this circle of pain.
Posted 11/29/2011 12:13 PM (GMT 0)
Alinus,

Your advice is good (#3-4), but your outlook (#1-2) with regards to a cure is incomprehensible. A cure is out there, it will happen, we just don't know when. I agree it is important to accept that you have this disease and must find a way to manage it. BUT, to give up hope and quit striving for a cure is the wrong message.

On behalf of my son, I'm talking with doctors who are focused on a cure and I hope to be able to contribute some way to that. Functional medicine (mindset) in the philosophy of focusing on the cause and cure of a disease. Like Fruitgirl said, "knowledge is power". The CCFA mission statement focuses on a cure.

All that said, a strong faith/support group is crucial along the way.

Post Edited (trojen) : 11/29/2011 5:18:05 AM (GMT-7)

Posted 11/29/2011 12:18 PM (GMT 0)
There's no cure yet, Trojen (unless you accept total colectomy as a cure), only remission which can be achieved in many ways.
i see no point in not accepting this. Our goal must be permanent remission. As i've said - higher expectations lead to high dissapointments. Expect less and you will achieve more.

I am sorry for your kid, but maybe my story will help you: i had UC-like symptoms when i was 4, never beed diagnosed then - but 14-21 days of constipation periods combined with months of diarrhoea for more than 6 months was probably UC related.
After that period - whithout meds, since i was not diagnosed - i've never had any problems since i was 28. I hope this helps.
Posted 11/29/2011 1:47 PM (GMT 0)
I've had a long and bumpy road with my Uc. There were several times I considered sugery and I thought I really WANTED surgery, but when it came down to it, it scared me. So I dealt with everything the best way I can. With hope, love and support of my family and friends and taking one day at a time.

When I was first diagnosed I was in denial. I was in denial for a very long time but when the reality hit me, it took me down a long dark hill. I became very darkly depressed, cried all the time, thought everything was pointless. I honestly don't know what the turning point for me was. Perhaps it was my children - maybe I realized what my thoughts and illness was doing to my kids. I turned it around and I am grateful I was able to do that.

I began to realize that it takes a VERY tough person to deal with having Uc. I think one of the things that made me realize this is my MIL was complaining of having D from the flu. Here she is, a healthy lady and she complained of having D for two days. I than realized that I am a strong person. I now have more patience for people, I know my limitations, I have more empathy, I learned selflessness, and I now can enjoy just the little things in life. Uc has made me a better person than before.

I mean what else is there do?? You can't let having a chronic illness get you down - what kind of life would that be. Who wants to be with a bitter and resentful person? I choose to be a person that others love to be around - to be a positive influence on those around me.

When a person is first diagnosed with a chronic illness, there is a grieving process. And that is perfectly okay! It's okay to have that occasional pity party as well. But pick up the pieces and enjoy the GOOD things in life.
Posted 11/30/2011 3:42 AM (GMT 0)
You were diagnosed the same month I was. I've been thinking the same thing as you. I've been sick for nearly a year, what next? I take comfort in the fact that my meds work and I can work full time. I don't know what the answer is. I try not to be negative. What I can't get used to is that I can't power walk first thing in the morning anymore. I can't get down the walk before I have to go potty :-) So, even though this has changed my life, I'm still hopeful that it will get more manageable over time.

My best and Happy Holidays!
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