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Scared to start Remicade, and need a parents perspective please

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Ulcerative Colitis
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Posted 6/16/2009 12:51 PM (GMT 0)

Hi All,

This is such a great website...being able to share and ask questions with people going through the same thing is really comforting. Anyway, I have just completed all the blood work, and xray required to complete prior to taking Remicade...so now I am in the process of scheduling my first appt. I am really scared and nervous though. I have read many of you have had some really good experiances so I am hopeful. I have lost a lot of weight in the last 8 months and being a petite person have become really self contious of that, so I am really hoping that this helps me. Anyone have any advice for my first infusion? Will I be okay to go alone? I have mentioned this before on this site...only a handful of people know that I have UC. I haven't told my parents yet...I just don't want them to worry...I feel as though I should but am thinking that after the Remicade and hopfully I will see a differance I will then tell them...kind of to soften the blow. I guess my other question is for those of you that are parents...what is the best way to tell my parents. They are very supportive people I just don't want them to worry about me...I am 30 and unmarried and that seems to be a worry for them already I just don't want to add to it...but I also feel they deserve to know but go back and forth with it...what are your thoughts??

Blue0205 - 30 year old female

Lialda - 4 / day, Omega 3, VSL#3 - 4 packs a day, Multivitamin, Calcium

Posted 6/16/2009 1:32 PM (GMT 0)
I'm petite myself and have gone back to my normal weight (which is actually quite underweight) after getting into remission with Remicade.

You can go to the infusion alone, but just make sure they're not giving you Benadryl as a pre-med--it may make you drowsy! My parents insist on coming to my infusion and I need them to so I have a driver; Benadryl knocks me out!

In my opinion, I think you should tell your parents. My parents worry a lot, but it's nice to talk to someone about my concerns and whatnot, and they can offer a different perspective. And if you're really sick, then you know that you have someone to take care of. Also, Remicade can take up to 5 infusions to begin working, so it could be a few months before you can soften the blow.

Posted 6/16/2009 6:42 PM (GMT 0)
I don't have any remicade advice, but for telling your parents... I think you will be hugely relieved. My parents always help me when I'm having a bad flare. I can't imagine trying to hide it from them.
Also, I recently 'came out' to my friends and co-workers. That has been surprisingly nice to be able to talk to them about not feeling well and why. They are not grossed out and are genuinely interested. I should have known that friends would want to know something like that!
Anyway, good luck with your parents and with Remicade! Let us know how it goes!
Posted 6/16/2009 8:47 PM (GMT 0)

Honestly, when I read your post I saw myself exactly four years ago! I too didn't want to tell my parents. I didn't want them to worry; I figured I have given them enough to worry about throughout the years (and I have!) So, I managed my illness, and I'm not sure how, for a year without them knowing it. Although we live apart, it wasn't easy concealing the "running to the restroom" days.

I waited until after I had my first remi infusion, and was feeling better. I took my Mom out shopping the very next day after my infusion and finally mustered the courage to tell her. I'm not sure if I was embarrassed at having to tell her "one more thing" or not wanting her to worry. Maybe a combo? After I told her she said, "Why haven't you told me? Did you think I couldn't handle it?" I still have to giggle about that. The reason? After looking back at her life and what she dealt with, there wasn't any reason for me to keep it from her. Both her and my Dad...made of steel! Although she said she still feels the pain that her kids have, she would rather know so she could help in any way. The craziest part is that I have a very open relationship with my parents; go figure that I tried to keep this from them. And I agree with AmyWaffle -- it felt good not to keep it inside anymore. Good luck with the infusion!

Posted 6/17/2009 3:03 AM (GMT 0)
My two cents:
Have someone with you during the Remi infusion. If it goes well, you will only need them to chat with...if things go south, you will have a driver and a decision maker. You won't know how you will react the first time. Chances are good that it will all be fine, but don't take a chance that you will be scared and all alone. We all need a little help-that's why we are at this site in the first place. Remi for my daughter has been a wonderful experience so far, and the only thing that has worked.
Second, as a mom, I want to be "in the game"---even if it is info. I don't want to really know. I'm guessing your mom/dad are like that too. To exclude them on an important life event is to shut them down and tell them(maybe subconsciously) that you do not need them. Perhaps that is a message you need to send them. I don't know your life, or if they deserve to be a part of it. Perhaps you have filled their role with others, and that is ok. To exclude them because you don't want them to worry? That is a reaction you cannot control. The job of parent is to worry, and worry long and hard . To exclude them because they will hurt rather than help you, is another story. Make sure you know your own motives.
Whatever you decide, we are here for you in a small way.
Posted 6/18/2009 2:34 AM (GMT 0)
My daughter came along with me for the first infusion because I being a big wuss. If I had it to do over again I would have gone on my own -- the way the infusion clinic is set up an accompanying person is just in the way and had no place comfortable to wait. So if you do want a companion, you may want to look into what the set up is.

I was REALLY nervous about the Remicade, but it really was no big deal. I am a dog groomer and I was worried about getting infections, picking up some kind of fungal or bacterial thing. I have been on Remicade two years though and have been very healthy. It has kept my UC under control. I have had my life back. A colonoscopy in October showd my colon mostly HEALED except a few centimeters of inflammation in the rectum.

I have tolerated it well every time, but mostly if you have a reaction they just add some Benedryl to the line. You'll be a safe setting with professionals who know what to do, so I wouldn't be too worried.

The worst thing is you may get bored -- bring along a book, perhaps an MP3 player ... there may be a TV there. My routine is to stop for a bagel and coffee on my way to the hospital infusion clinic and bring that for breakfast. Once I get hooked up I have my breakfast, work on a needlepoint project or read, listen to podcasts on my Zune ... sometimes I doze. Then I am good to go for the next six week.

Relax, give it a try, I sure hope it works for you!

Meesh
Posted 6/18/2009 8:20 PM (GMT 0)
Meesh--that was really great to hear how you actually go about getting your remicade infusion. I am going in for my first one on Monday and you answered a lot of my questions. Just wanted to say thanks!
amywaffle
Posted 6/19/2009 1:22 AM (GMT 0)
You're welcome AmyWaffle. I had sort of wished for that type of info when I was starting out, so I try to share that when people are considering Remicade. I am sure everything will be just fine on Monday, for most of us it is. And, like I said, if something is going to happen, you're certainly going to be in the right place. Best of luck Monday!!

Meesh
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