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Ulcerative Colitis
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Posted 4/6/2013 3:35 PM (GMT 0)
I am trying not to be down. I was supposed to have my Remi infusion Wednesday, but was told this time that I need to figure out my mono (since August) situation first. I'm now scared of flaring, and feel at times as if there is no good answer.

But, the thing I notice about chronic illness is that I'm able to handle a ton of difficulty in my life. It just needs to be spaced out. I take on bad news, don't over think it, and look for hope in my life. I find myself doing this repeatedly as I deal with a less than perfect hand of cards, health-wise.

I have felt my guts gurgling more now that I'm late for Remi, and I cannot tolerate salads like I could even a week ago. I've adapted though, and am closer to my old way of eating... which is very bland.

I have a choice ahead of me, which involves risking being on or off Remicade. I've already posted about this to a degree, but I'm trying to listen to my body and intuition, too. I may be getting closer to a point where I accept that being sick every day is not good for me, and I do what it takes to be better for the LONG TERM. This may mean stopping Remi and trying 6mp again, or Humira, or even considering a surgery that I don't desire at all.

The thing about uncertainty and decisions like this is that time helps us know the answer. I have specialists yet to see before I know all the information I need to know. As time goes on I'm also noticing myself becoming less anxious about this situation as a whole.

Yesterday I went to see my counselor, to just check in and have him help me through this. We talked, then worked on relaxation.

One day at a time is how I'm taking things, it's not easy, but I'll be okay. I will. :)
Posted 4/6/2013 3:57 PM (GMT 0)
I wouldn't be afraid to consider surgery. Just about everyone who has had it looks back on their lives with great regret - that they wasted all that time on those drugs, went through all that mental crap, and if they had it to do all over again they would have just opted for surgery right at the very beginning and saved themselves a whole lot of unnecessary grief. You have a good life waiting for you. Maybe it's time to quit all the suffering and mental anguish and dangerous drugs and just go for it.
Posted 4/6/2013 4:05 PM (GMT 0)
Thanks, Gary. If I knew I would be very happy with my bowel habits after surgery, I wouldn't be afraid of it. The only thing keeping me from it is that I will either have a bag (which I DO NOT want personally), or an internal pouch that needs frequent restroom trips.

I guess I also consider that drugs will only be getting better in the next 5-10 years. My family tends to live a long time, so if I live until 90 or after I might wish I'd waited a bit longer for a drug that could hold me in remission without making me ill.

Difficult decision, definitely!
Posted 4/6/2013 4:05 PM (GMT 0)
I agree with both the first two posts. Worrying only makes things worse. Better to accept the things we can't change and do our best to change the things we can, however long it takes.
Posted 4/6/2013 4:18 PM (GMT 0)
Precisely, sfc425. I am okay with taking a direction if I know it's my only choice. The battle has been between hope and surgery. I'm letting my intuition let me know what to do at this point.
Posted 4/6/2013 4:30 PM (GMT 0)
I have been keeping a "journal" of sorts, just as a way of continuing to flex my writing muscles when I don't have anything in particular that I want to put together. A lot of it has lately focused on my health and how I want to live my life, because it has been on my mind constantly. At my worst, I talk about feeling better. When I'm feeling better, I talk about continuing to feel that way.

These two "passages" or whatever you want to call them are from the past week:

"No one would disagree that there’s no point in thinking about what I’m going to do in the future. I need to make the present work first. After that, I'll be playing with house money."

"I’m at the bottom of another mountain but I’m not afraid to climb it. I don’t care how long it takes. I’ll do this as best I can and get to the top and conquer it. And then I will climb a bigger one and continue doing so until there are no more mountains or mesas or hills or inclined plains. I’m tired and I’m sick and I’m miserable but that doesn’t mean I can’t climb. I’ll always be ready and able to climb. You couldn’t kill my grandfather with a shotgun. You can’t stop me from climbing even if you cut off my hands and feet. I’ll always climb."
Posted 4/6/2013 4:37 PM (GMT 0)
Another thing that has really put things into perspective lately is the passing of Roger Ebert. He was an important voice to me and his death has brought this article back to the forefront: http://www.salon.com/2011/09/15/roger_ebert/

In particular, I took great comfort in these two quotes, the latter of which is his quoting of Vincent Van Gogh:

"I don’t expect to die anytime soon. But it could happen this moment, while I am writing. I was talking the other day with Jim Toback, a friend of 35 years, and the conversation turned to our deaths, as it always does. 'Ask someone how they feel about death,' he said, 'and they’ll tell you everyone’s gonna die. Ask them, In the next 30 seconds? No, no, no, that’s not gonna happen. How about this afternoon? No. What you’re really asking them to admit is, Oh my God, I don’t really exist. I might be gone at any given second.'"

Van Gogh:

"Looking at the stars always makes me dream, as simply as I dream over the black dots representing towns and villages on a map.

Why, I ask myself, shouldn’t the shining dots of the sky be as accessible as the black dots on the map of France?

Just as we take a train to get to Tarascon or Rouen, we take death to reach a star. We cannot get to a star while we are alive any more than we can take the train when we are dead. So to me it seems possible that cholera, tuberculosis and cancer are the celestial means of locomotion. Just as steamboats, buses and railways are the terrestrial means.

To die quietly of old age would be to go there on foot."
Posted 4/6/2013 4:44 PM (GMT 0)
so t, you've talked about building houses - did you actually pound nails, hang sheetrock, etc. ?

are you a physical guy when you're feeling well ?

the worst thing for me is not being able to go outside and live - when i'm sick and can barely get off the frickin couch, my MIND goes ape s**t ! i gotta move and be doing something - if you have always been a goer and doer (which i'm assuming you have) you probablty feel the same way -

sometimes i have to force myself off the couch after i've been there for a while - the fear starts setting in and takes away logic - logic says if i just get moving i will feel better - the whiney voice inside my head says " just rest, it's all you can do" and i have to smack myself and say screw that - even just hopping in the car gets me going -

just my thoughts -

oh, and personally, i don't hold out much hope for the future as far as the magic drug right around the corner -

Posted 4/6/2013 5:18 PM (GMT 0)
Thanks, Gentlemen.

Soystud, yeah I'm a physical guy... but I hired the framing and drywall done on my homes! I work driving trucks and doing physical work (as part of the business I own with my dad). I've sided, plumbed, wired etc... homes I've built. I get jealous of guys working construction on roads when I'm driving by on my way to doctor appts... if that tells you anything, lol.

sfc, it sounds like you're a philosopher like me. Sometimes as frustrating as it is, the present moment is one of resting/healing. It's okay as long as you aren't attached to some other idea of life. I think buddhists say that the root of all suffering is desire. If you let go of your desires, you're free. However, in practice I think it's a delicate balance between letting things be, and asserting your authenticity onto the world. Sometimes you do have to fight in the present moment for a better tomorrow.
Posted 4/6/2013 5:58 PM (GMT 0)
Best to think of it more simply, I guess:

Live life as best you can. If you're feeling sick (which I know you are), focus on getting better and think about what you want to do afterwards. Then do it.

I made a vow during my last flare to not let life pass me by and take things for granted like I had been for years. I used to eat whatever I wanted, sit around being lazy and not taking care of myself in any way - mentally, physically, emotionally, etc. I made significant improvements in all aspects of my life when my flare went down in 2010. I traveled to a different part of the world, I started exercising every day, I made efforts to meet new people and find girlfriends. Things didn't go perfectly but life doesn't work that way.

Now I'm flaring again and all I can focus on are the things I want to accomplish when I get it together and feel up to it. I know the time will come, and I can't wait for it. It's weird that this disease can make me so hopeful, but I guess that's just how I'm wired. I don't expect things to go flawlessly with my health once I'm back in a comfortable remission, but I plan on acting as if everything is back to "normal," and approaching my life with that perspective. Because living your life as if you've got limitations is no way to go about doing things. If you hit a bump in the road, you adjust. Life isn't easy for anyone. Maybe our health separates us from our peers in terms of how we handle different situations, but that doesn't change who we are to others.

If you treat yourself with respect (and not tell yourself reasons why you can't do certain things that you actually want), it will be natural to do so for others and in turn you will have a more fulfilling life and enrich the lives of those who are close to you. I know this because I experienced it, and like I said, I can't wait to start enhancing things from where they've progressed after my last flare. This is my approach to everything until I literally can't try anymore. And there's no reason for me to believe I can't at least TRY to do everything I want until I die.
Posted 4/6/2013 6:22 PM (GMT 0)
Relax. Really.

I know you're tired of being sick with mono, and you're stressed about your future with your girlfriend (it's a happy kind of stress, but it's still stressful!), so I think you need to just take a deep breath.

From what I've been told by my doctor and the staff at the infusion center, delaying an infusion because of illness rarely means that you'd be unable to stop taking Remicade. It's certainly a risk, but it's such a "maybe" at this point that right now, you should just think about resting and kicking mono!
Posted 4/6/2013 7:07 PM (GMT 0)
make the right decision and move on without that remicade crap -

the mono will be around for the rest of your life - the drugs are making it a problem -

remicade will never cure you - even without the mono, remicade will probably quit working sometime in the near future -

give it the boot and never look back -

(yes, i am awake, so it's the idiot speaking)
Posted 4/6/2013 7:13 PM (GMT 0)
Lol, so I'm supposed to not listen... soystud?

ScienceGirl, I think what you posted is pretty sound, rational advice. It sounded like it came from my gf, if she understood this situation better.

My relationship isn't putting too much stress on me. I just wanted to bounce ideas off of people about marriage/the future with that post a little while back. Right now I am simply trying to care for myself, and am not doing anything but enjoying my time with her. Last night we made a little fire out back, roasted hot dogs, and relaxed with my dog. It was a really nice laid back time.
Posted 4/6/2013 7:36 PM (GMT 0)
I'm sorry you are having a rough time and it's a shame you are so opposed to surgery BUT I understand your feelings totally. I was dead set against it and my poor husband had to deal with a sick, stubborn wife who was getting sicker and sicker.

You can be done with all of it and feeling better sooner than you think having surgery. I was on Remi too for a while. I hated that crap and I am glad now it didn't work because it forced me to make the decision to have surgery which gave me my life back.

No easy decisions with this stupid disease. Even deciding on which drug to take is a tough one. Good luck.....
Posted 4/7/2013 1:08 AM (GMT 0)
ByeByeUC... I entirely get where you're coming from, surgery wise. IF my disease was the way it was when I flared in January 2012, surgery wouldn't even need second guessing.

However, I am seeing patterns in what effects my colon... and see a reason to be hopeful to a degree. In 2011 I maintained with only mesalamines (oral pentasa), and was off of all meds the last part of the year. In hindsight it wasn't the greatest decision I see now, but I did it because I didn't feel anything was making things much better.

The January 2012 flare came about as a mixture of stress and I believe a tincture of Chinese medicine that had something to do with nerves. Never had I flared like that before, and I think the severity of that flare was directly related the tincture.

I was maintaining with better and worse days with Pentasa, but I've been learning a lot about myself as I've paid very close attention to my body and habits over the last 2+ years. The most important thing I've noticed is that I have a lot of IBS symptoms, even when my colon is healed. I've taken Cymbalta and noticed amazing results last fall: I no longer hurt in my left colon (always a dull pain there), I was able to tolerate foods I'd been without in years, and my stools were much more consistently formed.

It's my hope that once I am stabilized, that if I treat the nerve causes that aid in flaring me... that perhaps pentasa and 6mp or something similar will work.

I guess what I'm saying is that I didn't notice my disease (symptom wise) getting progressively worse until that flare in Jan 2012, which I feel was aided tremendously by strong herbs that were not good for me. I feel it is worth a bit more time to experiment with things before I give in.

If surgery was without any worries or problems afterwards, I would be more inclined to jump to it immediately. But, it has a whole host of worries. I don't think should I choose surgery that I would be anxious about them, BUT right now there are enough things about surgery that make me feel that my situation is worth a bit more experimenting.
Posted 4/7/2013 1:12 AM (GMT 0)
Also, ByeBye... I want to sincerely thank you for staying on this forum after getting your life back from surgery. It is extremely generous of you to stick around and help console people like myself, and to let them know there is a light at the end of the tunnel.

If you're wondering about the "worries" I mentioned about surgery, it's just general stuff. It's things like having 2-3 operations, getting infections, dealing with different hookups to eliminate waste between surgeries, having many (8+) watery stools per day, and having to pay attention to how you eat with liquids/solids to make things less messy coming out.
Posted 4/7/2013 1:26 AM (GMT 0)
For what it's worth, it's to be super active again- athletically, creatively, romantically/sexually with my wife, you name it- that I am finally, after years and years of resisting, moving on to surgery. I know there are some pretty advanced biologics in the pipeline. What I do know is that every drug, wothout exception- even including uceris- has not got me a permanent remission. I havent been in a true 100% remission on over a decade. Waiting for another flare and having some degree of underlying inflammation has become a freaking joke for me. But I nave been fighting this for so mjch longer than some others active here on HW who are agonizing on the surgery decision. I dont think I could have got here without trying almost everything- not everything, because to try everything would take more than a lifetime, but I tried a lot of high powered things both drug and alternative. Where to draw the line and say enough was enough wasnt easy, but garylouisville is dead on that surgery is almost always vastly preferable to year after year of life's opprtunities wasted.
Posted 4/7/2013 1:36 AM (GMT 0)
Probiotic, after I just posted these two replies on here I thought of you... and hoped what I posted wouldn't offend you. I'm closer to the surgery decision than most on here, but I have a bit of experimenting left.

I just watched the link to the video on IhaveUC.com that Somedude posted. THAT was a very enlightening experience, and I can definitely see how much time I would get back in my life by having surgery.

I think that's probably highly preferable to injecting myself with powerful drugs in the long run.

Just give me a bit more time to live and see what happens. Either I'll maintain better without the intense flares, or I'll have surgery. Time will tell.

Again, I didn't mean to offend you if I did, with saying that surgery has worries. It's just that the way I've experienced my symptoms I would say it would be best for me to try a few more things before doing such a surgery.

Best of wishes to you... I think you're going to love it when you're healed up from surgery!
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