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Posted 7/20/2011 3:13 AM (GMT 0)
I'm wearing down a bit from all the time I spend on trying to find a mix of medicines and diet that work with this disease. I know it's not good to focus on the disease, because then my mind will create a reality based on IBD and all the problems I have with it. But... I only have Remicade & Humira left to try, and I'm honestly scared. It's highly likely that Accutane (acne medicine I took a couple years before UC diagnosis) caused this disease). I am just plain scared of putting more crap in my body after this life experience.

Tonight I was talking with a woman I really like, whom I've been seeing a bit of lately. She loves going out to concerts, running... having fun. Her and I talked for a long time, and I realized as I was talking to her that this disease owns me. I am not pursuing all of those interests I have, because I am fighting a battle that hardly anybody even knows about. I hate it.

I am often enthusiastic, and maybe I just need a good week off or something... but I am definitely not as positive about these alternative treatments as I have been. I have had a lot of great weeks this year while trying my own ways of treatment. I have had weeks of 2-3 BM's per day... no pain, no blood, and very little urgency. It's given me a lot of hope. However, it isn't steady... and feels like I have to constantly be on top of things. Since about the start of this month things have been getting somewhat worse, though not desperate yet. I presently have the three antibiotics in my possession to try the combo-antibiotic treatment... but I'm just feeling done for. Like I just want to be normal so bad.

I don't know if I should cave to the Remicade at some point, or give myself another half year or year. The thought of actually being able to forget about UC for weeks at a time is exhilarating.

I just needed to vent to anyone that listens. I'm really just kinda down tonight... sick of the routine of everything. Not sure why really, but it could be the higher activity of the disease having something to do with it.

Don't worry, I'm not THAT down... just kinda worn down and needing a little inspiration.
Posted 7/20/2011 3:26 AM (GMT 0)
Hang in there.
Posted 7/20/2011 4:00 AM (GMT 0)
I feel for you. I think facebook is a huge problem as well. I see all the fun things people my age are doing which makes me sad.

Make sure you get out in the sun even if you aren't feeling well. I always forget to do this, but it really makes me feel good.
Posted 7/20/2011 4:14 AM (GMT 0)
Thanks ladies. I'm trying really hard at this, and just need a little bit of support I guess. I'm working on some more ideas right now. I am really persistent... and hope I find the results I'm searching for at some point.
Posted 7/20/2011 4:18 AM (GMT 0)
I am so sorry you're feelig this way. I swear I could have written your post about a week ago and presently things have taken a turn for the better and I don't know whether to celebrate or fear for the next down because for me, ups and downs can happen days or weeks apart but I never feel like I have too much stability. I have tried 6mp and it's caused me a lot of problems so it's almost not an option for me anymore. So yes, I am in your boat. Wondering if Remicade is the right option and a week ago, I was there, accepted that it was what I had to do and I was going to start it next week. I had a sigmoidoscopy and things didn't look great but not terrible, I was feeling low because even though the inflammation was mild, it was causing me a lot of symptoms. Anyway, things have since turned around and I feel strong, like things are going in a good direction. I started taking Pristiq and I think my perspective has changed a bit. I am less concerned and focused on the IBD and you know what? I think that in itself has caused me to feel a little better. :)
Posted 7/20/2011 4:43 AM (GMT 0)
Things could be much worse, thankfully they're not : )
Posted 7/20/2011 4:55 AM (GMT 0)
haha, thanks bbc. You know, sometimes it just doesn't matter in regards to perspective... at least for an evening every once in a while. I had some sorrow/emotions of some sort that needed out. I'm still physically hurting from the UC presently, and discouraged... but I'm already working on positive steps. I cannot sit still for long it seems.
Posted 7/20/2011 5:56 AM (GMT 0)
Hey there Thoreau,

I know how you feel. It's very hard trying to date people or even have friends you can't keep up with.
I've recently just had a flare up myself and am on the merry-go-round of what will this drug do, what does this Dr say. None of which ususally helps too much.

To recognise the things I can do, and the long way I have come. From not being able to move let alone going on dates.
I have started this little gratitude book. Yes I know it sonds terribly lame ( hence why I don't tell anyone I'm doing it ha ).
In it I simply write in it everyday something I am glad for. You know what it actually works. I am not the kind of person who is really very positive I tend to always think the worse. I get stressed very easy, and build up worst case scenario's in my head.
But each day I write something in this book even if it's i'm glad the pain wasn't as bad as yesterday, or I'm glad I have internet. Then I hold onto that thought for the day. It at least gives me something else to focus, you know?

Anyway I hope that helps a little
Posted 7/20/2011 11:58 AM (GMT 0)
UC is the elephant in our lives, and a bit more difficult than other medical conditions because other people cannot see the elephant, we can only describe it to them. So we have to bear everything alone, unless we have a really supportive parent or spouse.

I am a strong person and at times have laid on the bed and cried. Sometimes that's the only thing to do.

What can I say to help you feel better?
One day at a time. Just take life one day at a time.

Yes it will change the life you had planned for yourself but it will not ruin it (unless you planned to be an astronaut but then the Space Program is over now anyway).
I'm not religious but always liked this from the Sound of Music-"When God closes a door he opens a window".
(Can you tell I'm an optimist lol?)

Yes it is hard to always keep a stiff upper lip. So allow yourself to be down at times. It's clear from your posts that you are intelligent and focussed.

Life isn't fair or else children would not die of horrible diseases and bad people live long and prosper.
Your UC will get better. It will take some time for you to sort out what works for you but it will be better. I'm right about that. It took me 10 years to figure my UC out, you will get yours sorted many years sooner.

UC is not who you are, it's what you work around. Some days it's a minor disability, some days a major one.
Don't waste emotion being jealous of other peoples lives, live your best life, whatever it is that day. You would be surprised that many peoples lives are not as wonderful as you think they are.

Have a good Wednesday. :-)
Posted 7/20/2011 1:20 PM (GMT 0)
Thanks guys... it's good to have this support. Sometimes I vent to a parent, or friend... but they can't understand it like you guys can.

Yesterday was just bad. I had 8 BM's when I'm used to having 2-4 now, and the bleeding is now present with most stools. I was completely worn down, to the point where my emotions were going to be unpredictable. I will pull through it, as I always do. I guess I just had to cave into my emotions and let it out.

I have some plans already. I'm writing up a letter on the specifics of what I think is going on with my body, and getting medical articles to back up my ideas. I'm going to send the package of papers in to my general physician and have him look it all over. I seem to have a hard time discussing all that I want to while in the office, so I'm hoping I can wrap it all up in one paper and have him understand where I'm coming from. If he can't help me then maybe he can at least direct me to a person that is the right fit for my situation. For the most part I am referring here to the different possibilities for lack of a good balance in the colon, and what is possible to do about it.

I'm still feeling pretty bad right now, not so much emotionally as just an overall ache. I'm not sure what the deal is, but it DOES usually pass. I've had more of these times this year than ever before, perhaps due to some adjusting my body is doing because of the care I am trying to give it this year.

Thanks again to everyone that sent support my way.
Posted 7/20/2011 1:33 PM (GMT 0)
That's what make HW so great is that you can come to us and we will truly understand what you are going through. One time my daughter asked me, "What's so great about Healingwell? And why are you always on it?" I simply told her "Because it helps me." When I found HW, I was in a dark place. Suffering greatly from my Uc and I felt alone. But then I found HW and it raised me up just to know that NO I am not alone anymore.

I've had Uc for a very long time and it has been no picnic. I have been through what you are going through right now. But I got around to acceptance and I do not let Uc define my life. It has not been easy but I get out there every chance I get and just "do it". When I accomplish something, I feel proud that I was ABLE to. So now I don't get jealous of what people are able to do. However, there is still ONE thing that bothers me. I get jealous of people who can eat anything and not worry about the consequences. I am still working on that issue! lol

Anyway, I think I am just rambling now. But, hang in there! Hopefully soon you will find your "magic cocktail" and Uc will be less and less on your mind. Truthfully, nowadays I rarely think of my Uc. I have it tucked away in the back of my mind - it will always be there but it doesn't rule what I do.
Posted 7/20/2011 1:40 PM (GMT 0)

It's very hard to find a balance with UC- one tends to either focus all their thoughts & energy on the disease, or swing the other way & try to ignore it as much as possible. I too have felt like you, many times.... I finally realized I had to take a step back, that I could not allow UC to take up so much of my time & thought. Part of that meant leaving this board for a while, stop checking it 20x a day. I can't let UC define who I am as a person. Another liberating thing for me was realizing that UC does not necessarily have to prevent me from having fun- unless I'm ready to get the colon out (which I'm not), there are other measures I can take to allow more freedom- wear a Depends, take Immodium on special occasions, be prepared for accidents by carrying around extra underwear, baby wipes, etc. And try to breathe & relax! Yes it sucks to have to wear protection, a maxipad or Depends, but it beats sitting at home by a long shot! And I've found that just having that added protection contributed to peace of mind, most times I didn't even *need* the extra protection. And when all is said & done, if you have an accident, you have an accident- excuse yourself & go clean up, then go back out & join the fun. It's not a big deal. Generally, no one will even know but yourself. And yeah, it's ok to be down too! Just not for too long. Basically, you don't have any control over it- give in, it will either go into remission or not. Despite what meds you throw at it, what foods you do or do not eat, how much info you gather on the disease.

Posted 7/20/2011 4:04 PM (GMT 0)

Thoreau said...

I just needed to vent to anyone that listens. I'm really just kinda down tonight... sick of the routine of everything. Not sure why really, but it could be the higher activity of the disease having something to do with it.

Don't worry, I'm not THAT down... just kinda worn down and needing a little inspiration.


I know how you feel. I think most of us have been there a few times. I hope you have someone in 'real life' that you can talk to, because it really helps to pull you out of that dark place.

Sending you lots of light. :)
Posted 7/20/2011 9:24 PM (GMT 0)
Over the years I just didn't do things I could not do (picnics, concerts with lines for restrooms, amusement parks with lines, jump roping! boating) and found a partner who loves me enough not to care about what we couldnt do. We still have lots of fun.
Posted 7/20/2011 9:47 PM (GMT 0)
Thoreau,

Yea UC sucks big time! And I'm glad you've come to us because we do understand it all - the good, the bad, and the ugly.

I'm sorry you're at a down point, been there many times myself. And it will just take time to get to an "okay" point.

Even with my family, they just don't seem to get it - that I can't eat like a normal person - proteins only.

So it limits us completely whenever they want to go out, and they get pissed... well, I'm pissed back.... but that doesn't help.

Hopefully the key to your feeling better is getting informed as to your alternatives - and it seems like you've already made that step in getting ready for your doctor's appt.

Posted 7/20/2011 9:49 PM (GMT 0)
Wooky,

Thanks for the idea and being brave enough to say it: I have started this little gratitude book.

It's a great idea, and I'm glad it's working for you. I started one years ago, and then as things went downhill (I guess when I needed it the most), I stopped.

Time to start it again....

Posted 7/20/2011 9:52 PM (GMT 0)
Red_34,

 "What's so great about Healingwell? And why are you always on it?" I simply told her "Because it helps me." When I found HW, I was in a dark place. Suffering greatly from my Uc and I felt alone. But then I found HW and it raised me up just to know that NO I am not alone anymore.

I've been through the same questioning... and you're right about how it does help to help others too.

Thanks for putting it into words :-) .

Posted 7/20/2011 10:46 PM (GMT 0)
Hi Thoreau,
I'm sorry you are having a down day...I think we have all been there and we understand. I don't have much to add as you got other very good words but just wanted to let you know that you are not alone. I always enjoy reading your posts and think you are a very interesting and focused guy. I hope you are feeling better and we are here for you.
B
Posted 7/20/2011 11:19 PM (GMT 0)
I just got home from work, and was beyond grateful to read some more of your replies. Thank you all so much. I feel much better this evening, emotionally speaking. I took some initiative later last night to get on a certain path towards healing, and today has been a better day all around. There hasn't been too much urgency and I feel much more positive about things overall.

I think what had me so far down was a combination of things...
-The disease becoming more active.
-Feeling scared that I can't be the person that I feel I am at heart, and that it would somehow present me less attractively overall. (in regards to dating/relationships).
-Most of all... the feeling that I am kind of on my own with this thing. My GI doctor always recommends remicade, but I tried to get an appointment to discuss things like the combo antibiotic therapy, fecal transplant and ldn anyways. The scheduler said that I couldn't get an appointment for months, unless I was flaring badly and then they could see what they could do. My PCP doesn't understand the disease well, and has no clue the toll it can take on a person. He does try to help me, but it's as if I have to explain the disease and options to him which isn't always the most encouraging. I just felt like I was between a rock and a hard place... getting worse but not able to get help.

For whatever reason, I feel a little more in control today. I re-introduced a fairly high dosage of anti-fungals to my treatment regimen today... and will be taking VSL3-DS probiotics regularly at night. I haven't been quite as steady with these things because I have been opening up to so many more options, but I do believe this method did help me gain much control earlier this year. It's one of my only hopes right now, so I'm praying it works ;-)

I'll keep on chugging along with things here, but I think it was okay for me to get down last night. We're all humans, and I just couldn't hold in all that frustration and desperation. Thank you all so much for being supportive.
Posted 7/21/2011 12:33 AM (GMT 0)

Thoreau said...
I think what had me so far down was a combination of things...
-The disease becoming more active.
-Feeling scared that I can't be the person that I feel I am at heart, and that it would somehow present me less attractively overall. (in regards to dating/relationships).
-Most of all... the feeling that I am kind of on my own with this thing.

  To be totally honest, this is what upsets me the most about my UC/IBS... the illness can crush or depress your spirits which in turn shows externally and as a result causes you to lose opportunities that you would otherwise be able to grasp if you didn't have UC... (such as jobs, relationships etc.) I am already partially used to this because even before UC I was socially anxious (above the norm) and struggled with even day to day things like buying groceries. UC, however, has definitely made things more pronounced.

 I know (and I think many others on here can say the same about themselves) that my true self is quite different to who I exhibit externally. I am at least grateful that my mum, dad and girl friend can see that.

Posted 7/21/2011 1:51 AM (GMT 0)
Not to sound like a broken record as I'm sure I've already asked you this, but have you tried enemas?
Posted 7/21/2011 2:16 AM (GMT 0)
So glad to read this. Not because I'd like someone to be as down as myself, but to know we're in the same boat. I'd like to think the boat is not sinking.

I'm usually a very positive person, but recently I've been feeling overwhelmed. Exactly for the reasons above. I'm normally a VERY active person, sports, friends, have been to almost 30 countries. But recently it's just been me and this disease. My Chinese Herbal Teas, my Pelvic Floor Therapy homework, learning "The Secret", Yoga homework(for UC), falling out of love with my job, feeling handcuffed to same job because of good health insurance, learning Gluten free and vegan foods, dealing with the news of my super super low testosterone etc etc, I know you all are in similar boats. There's just not enough hours in the day! On the drive to my PT today I thought, if I have this many Dr/type appointments now-a-days, what will happen when I hit 40, 50, 60? I've never thought I'd considering suicide, but I have to admit the word(not the act or desire) has crossed my mind. rewind a few months, years, boy was I different.

my friend, and I love her so, says, I know you don't want more for your to do list, but you may want to consider the happiness bootcamp. It's similar to what Wooky wrote, a gratitude journal. Man was I down this morning, I couldn't even find ONE thing to be positive about. I just don't care anymore.

My biggest thought is WHY. This is the thought I must rid myself of. I think WHY me, WHY do I have to go home and enema, or make my tea, find dairy free option, gluten free option, I see everyone else around me living life but I am just kinda floating along with my life jacket keeping me afloat, unable to swim. I wish I could stop comparing myself to my healthy friends.

I think it's time to figure out how to be happy, and just deal with the rest as it comes. one day at a time.

Thoreau - Don't mean to steal your thread, but you're not alone. And it could be worse. As my friend said this morning, what if you had xxxx. There's always worse, in many ways we are fortunate, it's just difficult to see at times. I'm getting chills as I type this.

(Side Note: Re-reading what I wrote, it's like the anti-online dating profile. Imagine if someone wrote this as their "about Me section". Ok, I finally got myself to laugh :-)

Gratitude: To all those on healing well sharing their experiences. I'm off to the gym. Even if I stay 10 minutes, it's better than sitting at home figuring out what I can and can not eat. Love to you all.
Posted 7/21/2011 3:59 AM (GMT 0)
beachlife... I'm sorry to hear that things aren't working out too well for you. I personally think it's good to get that angst out of ourselves, that discomfort and even hate for the being "not normal". But it is something we all have to keep in perspective.

I have been through so many crappy situations (no pun really intended, but could be. lol) because of this disease. I'm a thin guy, with an "athletic" build I guess... so says the doctor. The year I began college I was puffed up so big from being on prednisone that I more closely resembled a family guy character than my true self. Talk about not having confidence with social situations! I actually could go on here for a long time about all the things that have been different in a bad way because of my UC. I think I'd rather take it in a positive direction though...

I quit college (even though I had an academic scholarship), because of a significant flare and prednisone psychological effects. It was all just too much considering I was diagnosed earlier that same year. BUT, I spent an amazing fall working part time, living with my parents, meditating, walking my dog in the woods, and reading many different books related to lifestyle, happiness, simplicity... basically how to get meaning from life. During this time I was even emailing different authors and amazingly getting good solid feedback from them. I cannot say for sure if I would have ever been so motivated to do such things if I had not developed IBD. It was one of those eye openers, if you will. I live my life with purpose and an eye for the long term that most people don't develop until at least middle age or later.

I also began helping my dad out with his business on the side of my regular part time job that same fall (2003). I can't believe it's been 8 years since then, but I don't think I would trade the experiences that I've had in my work for anything. I took my dad's business in a new direction (with his approval of course) and have created a way of life that is really fulfilling to him and I most days. The success has come bit by bit, but I look back now on all the challenges we've faced and feel an enormous sense of gratitude for what my we've created for ourselves. Again... I highly doubt this would have happened had I been healthy in college. I am going to treasure these times spent with my dad forever. I could probably write a book telling all of the interesting stories that have developed. It's been an adventure that I've enjoyed immensely.

I could list more, but I have some other things I need to do and it's already 11 pm my time. Thanks for the responses, and good luck to those of you that need it.
Posted 7/21/2011 4:01 AM (GMT 0)

Sara14 said...
Not to sound like a broken record as I'm sure I've already asked you this, but have you tried enemas?

Tried generic rowasa's a couple times. One time they worked (a few years ago), last year I developed a terrible flu like feeling that ended as soon as I stopped them. I have tried steroid enemas, and have seen small results. I asked my doctor's nurse about other suggestions, but they don't have any for me... enema-related anyways.
Posted 7/21/2011 1:53 PM (GMT 0)

beachlife:  "I see everyone else around me living life but I am just kinda floating along with my life jacket keeping me afloat, unable to swim. I wish I could stop comparing myself to my healthy friends."

That's exactly how I feel. I'm just drifting, hoping for things to get better. I can't help but to think how different my life would have been without UC, how everyone else gets to experience life yet all I can handle is work and school because of fatigue, how I spend all of my time outside of work and school at dr's offices or in pain at home, etc. If it's this bad in my early 20's, how much worse will it get as time goes on? How can I live like this for decades to come? Who's going to want me when I'm sick all the time? What happens if I don't find a job with good health insurance? Will I ever have a job that I will truly enjoy? Am I ever going to get to travel? How do I reconcile my pre-UC self with my post-UC self? I could go on...

And the sad thing is my UC is in remission, yet I still feel like crap all the time (excessive fatigue, IBS, allergies, chemical sensitivities, migraines, acid reflux, recurren staph infections, eczema, random bouts of nausea and lightheadedness, ear pain, congestion...I'm sure I'm forgetting some). The only problem I had pre-UC was allergies.

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