Freaking Out!

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Sascot

Sascot

Joined
Aug 28, 2011
Messages
3,376
Well tomorrow is the day we start the Aza, and I am as mentioned above - freaking out! I'm sure I am going to get an ulcer myself with all this stress.
I don't want to do this!!!
I thought I would have a little look at the the discussion page for the meds but all it has done has made me worse. There seemed to be too many (for my comfort levels) that have had to deal with some sore of cancer scare!!
I can't wrap my head around the fact that I am trying to make my son better with a drug that could give him something soooo much worse. :pale:
 
Oh hun...:hug::hug::hug:

I so understand how you feel. It is so difficult to gain perspective when you come to the net and to this forum. People are scared, and understandably so, but when that fear subsides and the treatments kick in and they work the forum is often left behind. That is not a bad thing because remission should be enjoyed but of course that then skewes things. I remember working on an oncology ward and at the time I had to stop myself from thinking that every second person had cancer! I had to keep telling myself that this was a concentration of people from all over the state, just as this forum is a concentration of people from all over the world.

Both of my children are doing wonderfully well on Aza, it has given them their lives back. I am not going to lie and say that the very concerns you are having now don't cross my mind because they do. I will be honest and say that at times I don't feel very lucky at all. When Sarah was the only one with Crohn's I would often tell myself that she might be one of the lucky ones and be in remission for decades! Then Matt contracted it and I thought...what are the chances that they will both be that fortunate.

Ugh! There are no easy answers or words hun. I have seen what untreated Crohn's can do and it was horrendous and life threatening. I know what under treated Crohn's can do and I know what the side effects of these medications are. Talk about between a rock and a hard place! It would be so much easier, well in my mind, if I was making these decisions for me and not for the most precious things in my life.

As Dex most wisely said...The worst thing that happened in my life didn't happen to me.

Most importantly you are not alone hun. We are thinking of you, we understand, we feel your pain, we feel your uncertainty, we feel your fear and we are here for you!

Dusty, :Karl:
 
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God...that was me the day before V started Humira...the day I joined this, my very first forum, driven to do so by sheer terror. :runaway:

The QOL argument, that's what you must focus on.
They cannot suffer daily and lose their childhood. If these drugs gives them a normal life, we have to do it. Not to mention the horror of untreated disease to which Dusty can attest.

If Humira had given V her life back, as scared as I was and am of it, and as wrong as I feel it is to mess around with their immune systems at a cellular level, I would still be using it. And still be afraid. That's our harsh reality. I hate that you're in it with me.


Love and understanding :kiss: and some stabbing for you :voodoo::voodoo:
 
HUgs.

Remember the numbers what is known and unknown
Known- without treatment your kiddo risks strictures, fistula, obstruction, loss of colon, cancer or death.
Unknown - the overall risk of some scary things increases. One of the scariest risk is doubled but you need to look at the numbers. WIthout the drug your LO risk is 2 in 10,000 with the drug it is 4 in 10,000. The risk doubled but the numbers are still very very low.

Everyday your child is at risk- car rides, bicycles, school, etc... for crohn's parent's we are more AWARE of the risks for taking the drugs but not taking any drugs is also a high risk in my opinion and has known effects.

My kiddo still rides in a car although the risk of death is highest cause of fatl injury for those under 14.
http://webappa.cdc.gov/cgi-bin/brok...=lcd1age&ethnicty=0&ranking=10&deathtle=Death

Just not something I am thinking about everyday.

That said my LO has been on 6-MP since Nov no really issues other than slightly elevated liver enzymes which the GI makes sure is in a safe range every time.
 
Thanks so much. I am trying very hard to put it into perspective. I seem to swing from accepting it to virtually hyperventilating!
This probably sounds daft but apart from the abcess, he seems so well to me. He has never been really sick with Crohns (thankfully), no blood, no loose stools, no weight loss. Just a little bit tiredness and the odd sore tummy which went away on it's own after a week or so. I guess I look at him and still don't feel that we are at the stage of needing such strong meds.
Again, another strange thing - he has been more healthy the past few months than ever before. He hasn't had as many colds/coughs and the ones he got were milder than usual. Now I'm going to be messing with him immune system?
Oh well, here goes nothing. Thanks for the stabby faces i'maboveitall!! Think I will put a few in to make me feel better :voodoo::voodoo::voodoo:
Will try stop moaning now - I know all you guys have had to go through all this already!
 
Oh Sascot, I am so sorry! Just know that there are so many of here who have either been there or are travelling the psychotic road with you. I love what you say about the swings..accepting to hyperventilating. I am right there with you. I love this group because you all are the only ones who understand and don't tell me to quit whining especially when there are so many in much worse circumstances. For myself, I am concentrating on the hope that it gets easier...especially when we see that the drugs are making them better. Will let you know when I get to the other side.
 
Sascot, just more hugs and understanding. :ghug:

I mentioned in a post recently that our kids are at risk every day... but, no one is handing us the stats just before we send them out to the activity! Riding in a car, playing in the sun without sunscreen, going swimming, bike riding, etc., etc. Try to remember that the risks with these meds are low but, we are being given these stats at such a vulnerable time that they seem overwhelming. :ghug:

Thinking of you... :ghug:
 
One thing I forgot to mention Sascot is the blood monitoring. What regime is your boy on now that he has started Aza?

Stay vigilant with the monitoring and most of the serious issues that may arise can be nipped in the bud before they become problematic. The more widely that is read about the studies involving cancer it does pop up that some of those affected went unmonitored, blood wise, for lengthy periods of time.

I tell ya, I live from blood test to blood test. As each normal one comes in I beath easy for a while and then the :voodoo: thoughts start creeping back in. Where am I now?...about 10 days or so out from a blood test so I am getting a tad flighty! :eek2::lol:

Dusty. xxx
 
Wow it really is great to be able to get advice/support from people who understand. At the risk of sounding rather maudlin (who me?) - my best friend last year about a week after Andrew was diagnosed came to me and told me she wanted to be honest with me - that she was trying so hard to be happy and basically my life was too depressing for her to deal with. "what do you do if someone is constantly bringing you down?" she said. Nice! So I had to grieve the loss of my best friend at the same time as dealing with diagnosis.

Dusty - it was nice to hear the cancer scares mainly came from cases who weren't closely watched. I too seem to live by when the next blood test is :lol:
We are doing weekly, then fortnightly, then monthly then 3 monthly so hopefully will be fine.
 
Good lord! How awful for you...:hug:...:(

Eventually panning out to 3 monthly is good but being a boy I personally would have the tests done no more than two months apart.

Dusty. xxx
 
Oh my! I don't know what to say about your friend's comment. That is awful but I can say I fear I was trying my friends' patience :boring:and that is why this group is so great. We can come on here and whine and get scared and boast all we want and everybody understands. Hugs to you.:ghug:
 
I am so sorry you are having to experience all these feelings of fear and anxiety. There seems to be no lead time between diagnosis and decisions. Like everyone on here, I have researched every medical term, test, treatment, side effect, study... sometimes feeling like I want to know and at other times wishing I didn't feel compelled to know. I have worked myself into and out of full blown frenzies. Remi really scares me at times and at other times I'm ready for anything that can combat all the symptoms. I will be sending good thoughts to you!
 
Hi Sascot,

I'm so sorry about what happened with your friend. What a terrible letdown :(

but, just wanted to say I'm thinking of you and hope you're doing alright today! :ghug:
 
(((HUGS))) and hoping that this drug gives your son the relief he deserves.

It seems that your friend wasn't as good a friend as it seemed...what an awful thing to go through when you needed her most. :(

Love Tess's point. Off to buy a helmet, knee and elbow pads, and some bubble wrap for my kids. :) Kidding. So true, but so hard to put it in perspective.

Good luck today!
 
Well tablet number one is done! Waited till dinner time so that he could have it with a decent meal to hopefully stop any nausea. Feel like I'm constantly watching him - poor boy is getting paranoid :lol2:
Bubble wrap sounds like a great idea!!!! Maybe we could buy shares in a bubble wrap/cotton wool company, then bulk buy :ylol:
 
Hugs.....the 'what ifs' can dang near drive you crazy......trust me I can relate. You have to know that that AZA is proven to work in so many and can work for you all. Take a deep breath and this big ((((hug))))).

J.
 
:ghug: It will get easier....
and hopefully it will work well and you will not have to ever change meds again.



:D
 
Good luck!
I am sending good wishes to your family!!
Because when one is sick it affects everybody!


Lauren
:thumright::rosette2::thumleft:
 
Sascot,
We're your new friends now!!! Lots of us too :) I can totally relate to your despair and panic and anxiety. It's something I have had to really deal with and still do.I keep thinking it'll get better as he gets older, but instead you have to find something deep inside you that can calm you down. I use prayers and novenas. (St Jude is a good novena). (Its catholic if you didn't know). It can really calm my anxiety to just pray when I get scared.

Also, I've learned to MAKE MYSELF not fear the medication. I learned to not fight the doctors advise...I used to think I had to second guess everything. I also remember that there are a lot of people getting cancer that don't have crohn's and aren't taking any medications. Try to find comfort in that your helping with the medications.

Hope any of that helped. XO
 
I hope the meds work quickly for your guy! I'm dreading the anxiety and worry of the day we start meds here. I tell my husband that I am going to end up with gut rot from all the stress of this. Luckily, we have a place like this to come to and express those concerns with people that really understand.

As for you friend, goodness I hope she never hits a rough patch in her life where she might need a little support. Sorry that she is not there for you but we are here :).
 
So that is day number 3 over with and so far doing fine! Touch wood, as they say!!
I had a fun day going to the kids hospital first (at which I was told "why are you here?") then to the local hospital to have the dressing changed, then to the pharmacy to shout at them. Can you believe I opened the box of Aza to find a strip of Amitrypteline (spelling?). Luckily I had checked it otherwise he may have ended up taking a weeks worth of antidepressants rather than his proper meds - dangerous I would think :ymad:
Andrew is going to school for the morning tomorrow :thumleft:, so I'm off for a coffee!!
 
No freaking way...they gave you the wrong drug? :yfaint:
Unbelievable.

I sure hope he does well on the Aza. I've read more than a few cases on these forums of people doing great on it.
 
Heavens to Murgatroyd! That is inexcusable! Thank goodness you were on the ball. :thumleft:

Do you get a choice as to whether you get the generic or the brand of Aza?

Dusty. xxx
 

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