Could use a bit of support due to Remi-pains and life changes.

The pains I have from Remicade are bringing me down some due my circumstances, and I could just use a bit of support from any of you that have some to share. I have to wait for about three more weeks until I can see my counselor again...

My dad and I have been talking about maybe selling our business, as many of you know. Well, we have people interested in it now without even listing it yet. We have someone wanting to put in an offer, and they are willing to let us run it still... or work part-time, however we want. I could go to school and work however much worked with it. Dad could work some to still feel meaningful, yet detach himself from all the stresses.

It's an incredible blessing, but I've still been feeling about all the emotions a person can feel. Given the emotional spectrum, the pains I have are amplifying everything to be more depressing to me. Tonight my wife did about everything she could to make me feel happy, but I still felt depressed. I'm scared about my dad's well-being mentally given that he's tied himself to work for so long. I'm also feeling very lost about myself.

I'm trying to compare this to the time I sold my first home that I put an incredible amount of effort into. I did it to simplify my life. I'd known for over half a year that I wanted to make a change, yet when I was in the process I was sick to my stomach. I was so depressed I just wanted to hide out and do nothing. Yet, afterwards I have never once regretted the decision because it allowed me to grow and do new things. If I hadn't done it I may not have met my wife, nor had money to put into rental homes, or met some really good people where I live now.

It's just been hard on me today. I have almost posted something on here three other times this evening, but wasn't sure it was appropriate. But... I don't know... it's all a mixed learning experience for me. I'm trying to view things positively, and the pains are just giving me a bit of an extra hurdle today.

not sure who coined this phrase ( barney fife ,,,, barney miller,,,,,, or maybe that purple barney) but it's one I try to use in my life whenever possible :


"if what you're doing aint workin, do something else !"


double your pleasure > ditch the remi, ditch the business -

and hang in there T man - it will get better -

ooooh, and I totally agree with the cat man - especially the part about the kitty

The pain is mostly controlled, but it wears off. Also, if I'm stressed I can feel the pains coming "through" the tramadol so to speak. It's kind of like when you're really tired everything seems ten times as overwhelming.

I can't get a cat, guys... lol. My wife is so allergic that she would literally die. Her airway constricts until she can't breathe. My parents have five though, so I do enjoy going there to see what craziness is happening.

I better be in a really comfortable position before I ditch anything related to my health I think. After my Remicade in May I'll have hit my deductible and will do a bit more research into options.

I'm just finding myself depressed over work, but being patient with how it is going.

I would say: "Well... what does your doctor say?"

To which The One In Pain would say: "My doctor says I should prepare for surgery if I stop Remicade."

And I'd say: "So what are your other options?"

One In Pain: "Well, Humira for now... maybe Simponi. Also, I'm waiting for Vedolizumab to be available. I don't like the pains, but they are better than surgery and better than UC."

**Essentially they are hard to deal with during high stress times, but if I wake up an hour before I need to get up I take my meds and am ready to go during the day. Then I take them about noon again. The hard part is the evening when I can't take them because they'll keep me up.

Well, she would love it if I didn't have to hurt every day. I haven't gone in-depth in a while about my options though. I've sort of been believing I'd deal with the pains for another year or two until more options were available to me... more backup plans.

Thanks Pluot. I've been sitting down for a couple hours this morning already, working on my thoughts and plans about the future. I could honestly probably not ask for a better situation, yet it's still such a life-altering event that it can't all be absorbed at once.

Thanks for the point about being a responder to the biologics. I guess I've never viewed things that way, but you're right I bet. I had the antibody test done last year for Remicade and my numbers were great... not elevated at all. So, this is more of a side-effect than a built-up tolerance. I'm being patient because life like this is incredibly improved over regular flaring UC life.

Vitaka, thank you so much for your comments.

I was having a lot of sicknesses in my throat on Remicade until I took my tonsils out. Now I haven't been sick in over four months.

After my next infusion I'll go get in touch with my GI doctor and warm up the discussion again. I think what you're saying is true. It's just not as easy as that because once I stop Remi I likely won't respond again.

What are you thinking your options are??

Wow, I'm sorry to hear about your pains Judy2. I have to say as time goes on here and the other medicines get further available I become less scared to try a switch. I would say that if I were not so entrenched in stress in my career that my pains would be very bearable for another year or two while I wait for as many options as is possible. The only really hard thing is when I don't sleep enough and am stressed... then it's like I need twice as much medicine to curb the pain (and can't take twice as much!).

Hey Tman.

My opinion? Oh wait you wanted my support... uhm... I support your decision.
I know which one you'll make... cuz ur smart. ( Speaking of the business stuff here.)

As for the meds... ur stubborn! Living "good enough" is not good enough!
Simponi seems really promising. And around the time you hit your deductible, Vedo/vendo should be coming available!

So... you know what to do. Use us! Vent and blabber and ramble and worry and word vomit all you need! In the end, you are obviously a very smart man and you will be fine! :)

Gotta work on that depression tho; easier said than done, I know. Cant let yourself get so worked up. Practice your simplicity that you dream of... meditation and yoga may be good things to add to your routine :)
And some yoga helps with joint pain! :D

boy t man, if you ever figure out a sure fire way to prevent life from going sideways in the future, let me know !

my feeling is you should do what you can with the things that are in YOUR control - you can't worry or do s**t about the other stuff -

and I think your new wife is quite right in having a no-think weekend ! join in buddy

yup t man, I agree with nice -

it absolutely makes no sense at all to treat the side effects of one drug with another drug that has it's own side effects - that's just plain dumb imo -

also imo. you've been at this way too long to keep dicking around, especially with s**t that aint working !

you have lots of plans for the future - don't let this crap hold you back -

There is never a time when you'll be "ready"
There's always going to be something

If you sit around waiting for the perfect time... you'll never stop waiting.
My husband and I bought a house 2 months after we found out I am going to have a chronic illness the rest of my life.
what a commitment for someone who doesnt know whats going to happen in her future!
....oh wait... NONE of us know whats going to happen in our future.

Selling off the business and working part time for them gives you a chance yo go back to school.
And try simponi.
And if you get sick.. your business is sold... you dont have to worry about whatto do with it while we have and recover from surgery.

Or simponi works and you feel better and go to school full time and have amazing grades and plant pretty flowers with your wife and love life!

Eva, my gut doesn't know what it wants. I'm pretty sad about this potential change... which is surprising me. I don't need to know the future, but it is alright to try to think on what would be best if certain things happened.

I guess I've put in so much of myself day and night to this that it's hard to put a price on it at all. There'll be a big void in me in terms of reasons I push myself. I am starting to feel like I'd want a new reason to push myself... a new venture of some sort.

I get like this moreso when I'm hurting I think. My wife is there for me, don't worry. I guess I just don't want to be such a downer to her all the time when I'm feeling like this, so I come on here rather than get her down.