Well well well.

[katiesue1506]

So I called my doc... the double dose of Remicade is lasting 6 weeks instead of 8 (but better than the 4 on a regular dose). He suggested a colonoscopy (woo hoo! ... :|) and some other biological agent. The only one I can think of is Cimzia... because my doc is WAY against Tysabri. I have a phone consultation with him on Sunday night, but I couldn't make it back home for a regular appointment. I'm letting him know I have to wait on the colonoscopy til after school is out... and thatI'd like to have another Remicade infusion to help me ride out til the end of the semester.

I'm a little down today... just one of those days...

What does anyone think?

 

[mRae85]

*hugz* chin up gurlie, your a fighter, thats what I think. Also maybe you could schedule the colonoscopy for a weekend if it is possisible, I know alot of hospitials dont like weekend work, but I am sure it can be arranged, school wont be out for another 3 months ish will it? If you need it now, then you might not want to waite. The sooner they get thier results, the sooner you might be able to get more help for it.

 

[katiesue1506]

Thanks!

School will be out in 6ish weeks (beginning of May)... so nothing another dose of Remicade can't solve. I'd do it on a weekend, but my GI only scopes on weekdays... he sees patients on weekends (works 7 days a week). Plus I have to work still... I have a car payment I'm not willing to not pay.. however I have it paid in advance right now for cushioning.

 

[My Butt Hurts]

Are you on anything else Katie?
I'm on Remi, Imuran and pentasa. Who knows which one is working or if they all play a part in it.
I don't know if elemental diet or something like that would be helpful just to get you through the last 2 weeks after every infusion. Or maybe even the brat diet? That tends to slow me down a bit intestinally. Load up on bananas for 2 weeks maybe?
I forgot - you did Humira already?

 

[katiesue1506]

Yep... did Humira. I'm only on Remi. I've started bland. I'm eating pasta with a little butter and a tiny bit of Parmesan right now.

I just feel a little at the end of my rope... even though I know in the real world, I'm not.

(btw I'm watching Wife Swap right now and they blurred out dog poop.... dog poop is vulgar??? )

 

[katiesue1506]

Well the first time I was on Remi it was with Imuran... but even if i started the Imuran, it would take 3 months to kick in.

Btw Kim, I'm really sorry to hear Mike's PG is coming back... hopefully Cimzia helps him. God knows he's had more than enough of this crap. Literally.

 

[My Butt Hurts]

(btw I'm watching Wife Swap right now and they blurred out dog poop.... dog poop is vulgar??? )

ME TOO!!! Ahhh... my dream.... WifeSwap...

I think it might be vulgar to commoners who aren't so used to poop.
HAHA!! Now they are talking about dirty toilets on there. They should come to MY house during a flare!!

Back to the topic - I would def ask about something else, even something mild like pentasa, sulfasalazine, asacol, or whatever the doc thinks might help.

 

[mRae85]

LMAO, never knew dog poop was vulgar, then again I suppose most people don't deal with what we deal with.

Just remember, when you find that you are getting close to the end of your rope... go to your local hardware store and buy more rope, then tie the 2 ropes together and then you have yourself a few extra feet of rope just thought I'd add that, maybe it'll make ya laugh some :lol:

 

[kello82]

katie- i was on remi for a while and it seemed like it started failing pretty quickly. then i started methotrxate while still getting the remi and those two together were like shazaamm for me. not remission, but feeling pretty good during that time.
have you been on the methotrexate ever before?

 

[katiesue1506]

No, but I'm really afraid of Metho. I'm afraid to take some drugs because of the side effects... however I may need to get over that soon.

 

[jed]

metho has worked wonder for me katie. dont be scared, its no worse than anything else. its put me into a really nice remission. (and they monitor your blood every six weeks or so, so if anything goes south, then they'll get you off it before it does any real damage)

 

[mommy1st]

I am really hoping it works, because I may not be a candidate for laproscopy, once you've had the old fashioned way (was talking to a surgeon who specializes in IBD) and usually once done that way, laproscopy is not out of the question but not likely.

My surgeon said the same thing that is why all four of my surgeries were done the old fashion way. I would have loved to have laproscopic surgery but he does remove my scar each time and give me fresh one so I can't complain about that.

 

[mRae85]

I know how it feels katie, I am scared of alot of drugs due to thier side effects. We will burn the bridges as we get there though, and on the bright side at least there are plently of people here that can tell you if you need to stop taking something. I wish I would have been here back when I had my pred scare, at least then I would have known what was going on with me. A simple annoying rash could have been alot more serious, and now, I really wish I would have just went to the ER back then and got off the stuff all together instead of waiting for the refill and taking more of it. Just thought I'd try to give you some words of comfort because I have not had any personal experience with Cimzia or Tysabri, personally I think they both sound like sports cars not meds :lol:

 

[My Butt Hurts]

We will burn the bridges as we get there though

:ylol2:
Did you mean 'cross' those bridges when we get there??
Although 'burn' them does seem a bit more fitting!

 

[katiesue1506]

Today is the day I talk with my GI... phone consult at 5:30-- which I will be working til 6. I've asked my boss though if it was okay that I close jewelry a little early. She gave me a look like I was lying to her... but said it would be okay.

Things are getting tough around work... we have all been told that if we don't keep our metrics up (asking for emails, credit applications, selling protection plans, and telling customers about the survey) then we will be fired. I think I'm only there because I get a lot of credit applications (which btw is a pain in the ass because customers FREAK OUT when I ask them if they'd like a credit card... they could just politely listen to me and say no instead of interrupt me and berate me because I asked... I HAVE to ask or I get fired!!!) OR I'll get the people that say this after I ask "you know, everytime you open a new credit card it dings your credit!"... DUH I know that... why are you telling me? I'm just doing my job *******!

On a side note... I personally think EVERYone should have to work 6 months in fast food and 6 months in retail before they are allowed to get other jobs and live in the world. I honestly have met some of THE rudest and most unkind people in these two job areas. There's a quote "don't mess with the people who make your food" and it is true. In retail is where I get all the people who think I'm able to perform acts of god for them. We don't have what you want in stock? Apparently I'm supposed to poof them there... and apparently I'm supposed to have EVERYTHING in stock ALL the time.... have people ever heard of other shoppers? They buy the things you want too and sometimes things become sold out.

Pfeww... glad I got that off my chest.

Anyways... phone consultation is tonight... I'm nervous about it because I've never talked to my GI on the phone. It will be weird. I hope I don't accidentally interrupt him or something. I also hope there aren't any awkward silences.

 

[My Butt Hurts]

Good luck with your phone call Katie! It may help if you write down everything that you want to say or ask. Then you won't forget it, and if there is an akward silence, you can throw something out there quickly.
Let us know what he/she suggests.

 

[markymark19857]

I know how the school thing can be...Ive always had digetsive problems, in september I went away for graduate school - I got through my undergrad with na few flare ups but cruised through. After 2 months of suffering in an intense program 11 exams in 5 days lol...i got soo sick and since then I havent been the same - they think I have crons disease and ive been on prednisone for 2 weeks and it hasnt helped much. If you have any school stress it makes the cronhs worse!!!! Ur almost at summer break just hang in there and try not too think too hard, relax and try to get a smuch food down as possible

 

[kello82]

good luck on your phone call!
i have done the phone thing with my doc quite a few times. not for a scheduled time though, just random whenever lol
MBH has good idea, write a list! and then you wont forget anything and can ask a question from your list
i hope it goes well girl!

 

[katiesue1506]

Spoke with him (1.5 hours later than expected... but at least it was at all)

He is moving Remi up to every 6 weeks until school is out and then after that I have an office visit with him to talk about things. He said I didn't necessarily have to have a colonoscopy but I think I should prolly have one since I haven't had one since I was diagnosed in oct 2006. He also said something like "its hard to know when to start worrying that it is something else"... what does THAT mean? Is he not confident in his diagnosis? What else COULD it be? Sometimes I wish I did have something else.

So basically I'm waiting out school... supposed to schedule Remicade this week sometime.

 

[kello82]

bahh thats weird! i hate it when they say weird things that leave you wondering!

but i guess its good that your remi is at 6 weeks now. i hope that really helps!

 

[mRae85]

MBH - I totally ment burn the bridges.... that is once we cross them I suppose hahaha

Hope the remi helps, never been on that one but my Dr mentioned it last time , we talked about alot of options. I hate when they leave you hanging. I totally agree that fast food and retail is a must for anyone, I've worked both, hated both, and refuse to go back to either. I been thinking of a nice quiet office job or something where there are no people. After working in those 2 job fields (if you can call them job fields) I don't want to be around too many people lmao