Does it ever end

[Pirate]

Okay, this is what's up. I'm doing great with the Remicade. No problems other then really stiff joints with pain. I am dealing with that okay, but I had a physical the week before last and did my usual blood work. Monday I get a call from the GR office and my hemiglobin counts are low, 10.2, and my Iron is really low. So they send me back for more blood work yesterday and they got the results and yes, everything is really low.
So now they want me to go in for the next 5 weeks and get Iron infusions. I told them only on Friday not any other day. The first week they want me there twice for the infusions. I know that it will help my energy, but give me a break. Why can't I feel completely great when my CD is in remission.
Sorry for the long Rant, but I am so fed up with something always coming up when I should be able to just feel good.

 

[Crohn's 35]

Hey Greg, dont worry, you are aloud to vent, usually you make us laugh but I know the frustration. I too am doing ok on the Methotrexate, but have 2 cankers on my tongue (that is a first) and just got over a rash on the back of my hands and now a bad rash under the arms. I was gonna ask too, does it ever end? Can't remission just be bliss and no more side effects?? :voodoo:. Being on all these meds I am sure isnt helping. Don't get to upset what ever you do, cause then you know exactly what will happen next. Hang in there, at least you have Janis there to support you.

 

[Pirate]

Yeah, I know Penny. I really know that its best that I just go with the flow. I have been feeling pretty run down lately and I know the Iron will help, I'm just getting tired of getting poked and having to miss work after going almost a month and a half without missing a day. I'm going to do the Iron, but I still get to stomp my feet and have a little kids tantrum all the way there. That way Janis will treat me to something special. lol.

 

[Entchen]

Tantrums and special treatment are encouraged...aren't they? What a frustration; I hope you get your iron levels back up soon.

 

[Lisa]

They didn't suggest taking iron pills to start? .....

And yes, I'm not sure if ever ends...been doing great on Remicade......but developed a rash - Derm determined 'eczema'....but I now have a steroid creme to try to clear it up - probably 80% of my body is affected...ha...just hoping to see results - not sure what they will say when I go for my next remicade (Monday) - as I didn't have this 7 weeks ago!

 

[ameslouise]

Awwww, I'm so sorry to hear that you are having more troubles despite the good relief from the Remi. Sometimes it seems we can't get a break, can we?

I find that the more good days I have, any bad days really set me back mentally. Bad days are still few and far between, so when I do have one, it's really depressing. After a good month and half with the Remi you probably thought you were out of the woods.

I hope the iron gets you fixed up and you can get back on with your life feeling good.

- Amy

 

[Pirate]

They didn't suggest taking iron pills to start? .....

And yes, I'm not sure if ever ends...been doing great on Remicade......but developed a rash - Derm determined 'eczema'....but I now have a steroid creme to try to clear it up - probably 80% of my body is affected...ha...just hoping to see results - not sure what they will say when I go for my next remicade (Monday) - as I didn't have this 7 weeks ago!

We learned many years ago that I am one of those people that can't do the pills. Kills my gut something terrible. I'm stuck with infusions as long as my levels keep dropping like this. Its actually the 3rd time I've had to do them, second time in a yr and a half. Maybe I could just start chewing nails? Naw, hard to bite since losing my teeth.

Oh, the Remicade is great on my CD, but now I have a lot of joint pain. Today I thought my ankles were going to break. Felt like they weren't going to bend at all. My wrists always ache and getting started in the morning is hard. Just been the last few weeks. Can't be because I'll turn 52 next week could it?lol

 

[My Butt Hurts]

I prefer the term "mantrum" over tantrum.

The little red iron pills always hurt my belly too, but a brand called Slow FE didn't. It might be worth looking into instead of the infusions, though it is expensive. Maybe 1 dollar a pill? It's OTC.

You're allowed to vent, Pirate - don't you worry about that.
Hope the infusions make you feel better!

I know there is a good wrist ache joke in there, but I'll behave.

 

[Crohn's 35]

Oh, the Remicade is great on my CD, but now I have a lot of joint pain. Today I thought my ankles were going to break. Felt like they weren't going to bend at all. My wrists always ache and getting started in the morning is hard. Just been the last few weeks. Can't be because I'll turn 52 next week could it?lol

Ha, Greg, guess you werent a liver eater as kid. As for the wrist pain I have it too but it started over 2 weeks ago hauling and pitching wood in a trailer by hand. It has been so bad I cant even hardly lift a coffee pot, half full. Which incase of arthritis isn't Remicade and methotrexate (what I am on) supposed to be for arthritis in the first place? But yet we have arthritis? I dont get that.

I never have problems with my Iron, but once in a while potassium and I already have B12 shots, once a month. As we get older *%^&$ yes our bodies dont recover as quick... and did I hear a bd coming up? That would make you a Taurus, no surpise there :ylol2: .

I am not on here that much for the reasons of my wrists. Trying to rest them.

 

[Jerman]

Hey Greg, Hope you are feeling better soon, you are a good, strong person hope better times are just around the corner bud.

 

[Pirate]

MBH, you be careful with that joke thing. I know what your thinking and all I got to say is if Janis thinks that I'm doing something like that she's going to be really mad. Let's just say she'd think it was a waste of a good time.lol

Penny, I'm not getting old, I'm not getting old, I'm not getting old.

Jer, thanks for the words. I'm going to be okay, just had a moment. Maybe its because of my inner feminine self.lol

 

[My Butt Hurts]

MBH, you be careful with that joke thing. I know what your thinking and all I got to say is if Janis thinks that I'm doing something like that she's going to be really mad. Let's just say she'd think it was a waste of a good time.lol

NO!! I was talking about typing too much!!


(Truth - I WAS talking about that, I thought you started it on the shower thread. It was David. My fault.)

 

[Pirate]

lol. busted

 

[Sue-2009]

Vent away Pirate, I too sometimes think this is never ending. BUt, thankfully this site shows that it does..with the others on here! So, hang in there! Lean hard here...and vent until you feel better...we are here for you! And I am always watching...I am happy to hear that the remicaide is working for you...sorry about the side effects! Peace, Sue

 

[Keona]

Isn't "Iron Man" a super hero?

Hope you feel better soon
________
Electronic Cigarettes

 

[Tan]

Hi Greg, Sorry I haven't been on for awhile.. feel ya buddy its not good to be in remission but still get all these side issues dues to crohns or the medication we take to keep us in remission.. sometimes a catch 22!!

I have been feeling great lately but still getting the lower back and hip pain.. so frustrating as my GI has said once my inflammation settled down so would my hip which is particularly bad at the moment. Guess what it hasn't and if anything it seems to have gotten worse. Not sure if I have noticed it more purely cause I have no other symptoms taking my mind off my hip area! Im also at a loss to know what to do in this situation and it becomes very frustrating as I should feel on top of the world being in remission.

I hope with the Iron infusions you will start to regain your energy and be able to enjoy the summer with your lovely wife... has anything been said about see an RA about your joints?

Good luck I hope you can get on top of it all and enjoy remission!

 

[uab grad student]

Hi Greg,

I'm hoping the iron infusions will really help get your counts back up and maybe in combo with your remission you will feel like a million bucks! Here's to hoping you get a lot of energy back and feel awesome in no time.

 

[bruscar]

Hey man,

Iron is good, did the job for me a good few times.

It is only using the site for what it is meant isn't it . . . . .VENTING !!

Hang in there buddy

Wishing you well

Bruscar

 

[Pirate]

Thanks guys for the words of wisedom and encouragement. Monday I go in for the first infusion, then Friday and every Friday after for 4 weeks. Today is my day for Remicade. Janis tried to get the first infusion of Iron today but they won't run the 2 infusions at the same time. To hard to tell which one is causing a reaction if things go south.

Keona, I am a Super hero, just not Iron Man.

I'm Super Pooper, Defender of all Crohnies. I seek out the unjust persecution of Fellow Crohnies around the world. No toilet is to big for me to unplug (except yours, Joan), no toilet paper shortage is too hard for me to handle. I look Crohns in the face and poo. I defy a shart to happen in my pants. I dare any non Crohnie to a pooping match, BECAUSE I AM SUPER POOPER.