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Posted 6/9/2011 6:28 PM (GMT -5)

MotherofteenwithUC,

Here's a link to a post by another member on Remicade:

https://www.healingwell.com/community/default.aspx?f=38&m=2128462

I think you should read this, it's a cautionary but very real experience this young man has gone through.

Posted 6/9/2011 8:10 PM (GMT -5)
Oh, Pam! I was so hopeful that the next time we heard from you it would be that your son was continuing to improve! I am so sorry he is having symptoms come back!! I wish I had words of wisdom or great advice, but I don't. I'm not sure what we will do when we reach the point that we need to decide about remicade - I just don't know...

I am praying for you and your son!! Please keep us posted.

(((Hugs)))!!!

Julie
Posted 6/9/2011 8:17 PM (GMT -5)

Thank you InSoFla.

I had already seen this post and took it under conisderation.   Quite honestly, I feel that I am running out of time.  The Dr's all tell me to do this and that.  I feel that I want to try different options before subjecting my son to medications that increase his risk of getting cancer.   The Dr's tell me " the longer I wait, the less of a chance he will respond to the Remicade"....rush, rush, rush....and I am a single working mom who is trying to put my son's health before anything else.   I am so sorry if I am using this forum as an outlet to vent..but I honestly feel that if I don't do what the doctors tell me to do, I am risking my son's health.  

 

Ok, now for a laugh...my son realizes that he will most likely be getting his first Remicade infusion tomorrow.   For dinner tonight he requested McDonalds Quarter pounder, large fries and a milkshake!   Of course, he didnt get any of it   VIEW IMAGE

 

Thanks for listening.   Tonight we started reading a book by Julie Sklar.  "The First Year, Crohn's and Ulcerative Colitis". I bought it back in February when he was first diagnosed and never opened the book.   Now I am reading it with a vengeance.   It was amazing how many things (symptoms and side affects of the drugs) that he was able to relate to.   When we were reading about various drugs.. he was telling me "OMG! That's  why my feet felt like they were pins and needles and burning" (Flagyl). 

 

Wish us luck :-) and thanks for all the support.

Posted 6/9/2011 8:21 PM (GMT -5)
Keylime,
Thank you for the "HUGS"! They mean more than anyone knows. I am keeping the faith!
Posted 6/9/2011 9:37 PM (GMT -5)
MotherofTeenwithUC

Remember, just because he tries to take Remicade to get out of an emergency situation in the hospital, doesn't mean he has to stay on it if he becomes too uncomfortable with the risks or side effects later. I was in a very similar situation. I was in the hospital last fall with a very severe flare and the doctors were definitely rushing me on the decision to take Remicade. Probably for good reason. I was really, really sick and declining rapidly. My other option was emergency surgery. I actually liked the surgery option better than a lifetime of low immunity and the cancer risk with Remicade infusions every 8 weeks, but I also didn't want to rush the surgery decision, or get emergency surgery when I was so sick. So I took the Remicade to buy me some time. It ended my flare in 5 days, and I went home to try to decide what to do. Unfortunately, I did develop some extremely painful side effects from it a week later which made the decision whether to stay on it an easy "NO WAY!" I canceled all my future infusions at that point. However, it did heal my colon for a month and gave me wonderful time to really explore the idea of surgery when I wasn't in such a state of panic. It also allowed me time to consult with a top surgeon. I chose to have a permanent ileostomy about 6 weeks after my severe flare and I feel absolutely amazing...better than I have in years! So many people are incredibly happy with their j-pouches too, many of them young like your son. Hang in there. Research all your options and have your son try to make the best decision he can based on that information, what he values and what will give him the best quality of life. It is an extremely personal decision and one that only he can make (with your support of course). I know it is scary, but try not to let fear overcome you. This whole thing has taught me that I am way stronger than I ever imagined and can get through anything.
Posted 6/9/2011 11:23 PM (GMT -5)
Please take a look at this site for review of Remicade written by the patients who are/were on it,
http://www.askapatient.com/viewrating.asp?drug=103772&name=REMICADE

I think the big guns like Remicade shouldn't be avoided since we all respond differently. I've spoken to several people online who are doing well on Remicade with very little side effects like being tired and for some, it saved their colon. While some others experience harsher side effects or no response at all, when it works well some have been on it for more than a decade without any problems while staying in remission.

Risk of developing cancer is higher but not everyone on Remicade develops cancer obviously.

I'm not advocating that your son needs to go on Remicade but what's the worst thing that can happen if he gets the infusion? Either he gets better or not respond to it.
I had allergic reaction to Remicade last year so I'm going on Humira this upcoming Tuesday since I got PAP approved.(I'm not in full remission)

What I really want to say is that we all know that these drugs are toxic but we won't know which drug will suit or give you the least side effects while being very effective to put us into a good solid remission. No offense, LDN is a must try but there are also a lot of people who didn't respond to it when I talked about it in other Crohn's/UC forums.

Also, some don't respond to Remicade or Humira or Prednisone at all but methotrexate(chemotherapy med) will put them to remission.

I believe prednisone is worse than these hard drugs or just as bad in my opinion despite what others might say.
Posted 6/10/2011 6:46 AM (GMT -5)
MotherofTeenwithUC,

I understand, you're in a tough spot. And when you see your child suffering, you'll do anything to alleviate it.

I wish you good luck and hope the Remicade works for your son.

And i hope he starts to get better very soon.

Wishing you the best, and sending you a hug.

Keep us apprised of his progress on Remicade.

Posted 6/10/2011 10:22 AM (GMT -5)
Hi Mom-

I am so sorry you are dealing with this- it can help and hurt to come to these boards looking for advice- especially when we feel so helpless and desperate!

I agree- You do need to trust your Dr- they are the experts and we have to have faith that they know what they are doing.

It is so scary to see your son in such a desperate situation and you will do anything to make it better- we all will.

I like the idea of trying the remicade- it really helps so many people and so many have been on it for years- if nothing else it can buy you some time while you really think about your options but the one thing I do know is you want your son to have a better quality of life- NOW!!!!!!

We really do know what you are going through and I hope you find support and friendship amoung posters on this board- it is such ahard
situation.

Remember too, you are dealing with your son and his life- he is just a child- some people here are the patients but you are his advocate and have to make the real descisions- trust your Dr and get on with getting your son better- this can't be easy for either of you.

Thinking of you, praying for you and Brandon- I hope he responds beautifully to Remicade and gets his life back asap.

(((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))

Keep us posted :)
Posted 6/18/2011 7:35 AM (GMT -5)
MotherofTeenwithUC,

How is your son doing? What's happening? Did he get onto Remicade?

What about diet?

Supplements?

Are you seeking any other treatments such as LDN?

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