Hi everyone. I though i was doing great in dealing with this whole crohns thing until last night. Billy has been on EN again for the last 2 plus weeks. Almost 2 weeks to go. crp is down from 11 to 0.63 and esr 37 down to 21 and billy looks fantastic and doing well. he is also on 50mg aza. however bloos test showed his theraputic levels are just and i mean just below where they should be. doc wants to up the dose to 62.5mg. im terrified! he is almost 5 (in sept) and 22kg. i hate that he has to take this drug at all let alone up the dose. so i stupidly googled more on side effects last night and then spent the good majority of 2 hours crying. I hate this!!!!!!!!!!!!!!!!!! I hate crohns!!!!!!!!!!! i wish i had it instead of my son!!!!!!!!! i asked the doc about ldn and he umed and ahed about not trial on peadiatric patients well hell i read last night that aza isnt even approved for use in children with crohns (is that right?) so whats the dose increase? Pen
Feeling bad guilty
- Thread starter Rypen
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Hi, I know just how you feel - there is nothing wrong in having a really good cry and rant. Then hopefully you will feel better for another little while. That's what I'm like - coping ok for a while then it just hits me! :frown:
My son was put onto Aza at 50mg (he is 13 and 56kg) and I know they were wanting to up his to at least 75mg to get the dose therapeutic. I freaked out as well - he had been doing ok on the 50mg and I really didn't want to increase it. However the nurse explained - if you are going to be giving a med that has risks - there is no point giving them a lower dose that isn't therapeutic. That way you get the risk but no benefit. Hope that helps.
My poor son's liver couldn't cope though so he is off the Aza and waiting for liver levels to come down before starting 6mp. Here we go again!
I would give anything for him not to have this disease too! :hang:
My son was put onto Aza at 50mg (he is 13 and 56kg) and I know they were wanting to up his to at least 75mg to get the dose therapeutic. I freaked out as well - he had been doing ok on the 50mg and I really didn't want to increase it. However the nurse explained - if you are going to be giving a med that has risks - there is no point giving them a lower dose that isn't therapeutic. That way you get the risk but no benefit. Hope that helps.
My poor son's liver couldn't cope though so he is off the Aza and waiting for liver levels to come down before starting 6mp. Here we go again!
I would give anything for him not to have this disease too! :hang:
crohnsinct
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That is what I was thinking.
Sorry the disease has got you down. I hope a good ole breakdown has helped. It always helps me:rosette1:
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Pen,
I'm sorry that you have to deal with this...
I guess we all know, too well, how heartbreaking it is to accept. I think sometimes it is especially hard when they seem to be doing well. My son looks great, feels great, etc. on EN only but his doctor is talking about adding methotrexate because of his test results. Ugghh... so hard to accept.
I suppose, as said above, it's okay to allow yourself to have a breakdown now and again. I think we often push aside our own emotions because we're all working so hard at being the support for our kids, our husbands, etc. that we're sometimes left without the support... Absolutely no reason to feel bad or guilty! :ghug:
One of the parents (johnny's mom??) once said that their GI told them the meds are just to keep our kids healthy until a cure is found... :ghug:
I'm sorry that you have to deal with this...
I guess we all know, too well, how heartbreaking it is to accept. I think sometimes it is especially hard when they seem to be doing well. My son looks great, feels great, etc. on EN only but his doctor is talking about adding methotrexate because of his test results. Ugghh... so hard to accept.I suppose, as said above, it's okay to allow yourself to have a breakdown now and again. I think we often push aside our own emotions because we're all working so hard at being the support for our kids, our husbands, etc. that we're sometimes left without the support... Absolutely no reason to feel bad or guilty! :ghug:
One of the parents (johnny's mom??) once said that their GI told them the meds are just to keep our kids healthy until a cure is found... :ghug:
DustyKat
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Oh Pen...:hug::hug::hug:
Dex once said something that really struck a chord with me...
"The worst that happened in my life didn't happen to me"
...how true that is and I reckon every single parent here feels the same.
My children are considerably older than yours Pen so I can well imagine how difficult this for you as it breaks my heart very morning that I watch my 17 year old take his Imuran.
It is so difficult and so very heartbreaking to have to make decisions on behalf of those that are so very precious to us and that is why the guilt will never leave us, we will forever second guess ourselves. I think in my own case I have seen what untreated/under treated Crohn's can do and it is potentially no kinder that than the more serious side effects of these drugs. Have you seen this link?...
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
...I hope reading through this may help alleviate your fears.
Imuran's primary use is for organ transplant patients so its use in auto immune disease is what is generally referred to as off label. Being off label though does not mean that it is unsafe to use for other medical conditions. Imuran has been used to treat IBD for over 30 years. The other thing to remember to is that because Imuran's primary use is not for IBD many of the more serious side effects relate to doses that are much higher than those used treat IBD.
Just know you are not alone hun...:hug:...also have a read through this thread..
http://www.crohnsforum.com/showthread.php?t=22520
Thinking of you, :heart:
Dusty. xxx
Dex once said something that really struck a chord with me...
"The worst that happened in my life didn't happen to me"
...how true that is and I reckon every single parent here feels the same.
My children are considerably older than yours Pen so I can well imagine how difficult this for you as it breaks my heart very morning that I watch my 17 year old take his Imuran.
It is so difficult and so very heartbreaking to have to make decisions on behalf of those that are so very precious to us and that is why the guilt will never leave us, we will forever second guess ourselves. I think in my own case I have seen what untreated/under treated Crohn's can do and it is potentially no kinder that than the more serious side effects of these drugs. Have you seen this link?...
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
...I hope reading through this may help alleviate your fears.
Imuran's primary use is for organ transplant patients so its use in auto immune disease is what is generally referred to as off label. Being off label though does not mean that it is unsafe to use for other medical conditions. Imuran has been used to treat IBD for over 30 years. The other thing to remember to is that because Imuran's primary use is not for IBD many of the more serious side effects relate to doses that are much higher than those used treat IBD.
Just know you are not alone hun...:hug:...also have a read through this thread..
http://www.crohnsforum.com/showthread.php?t=22520
Thinking of you, :heart:
Dusty. xxx
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I don't know a parent out there that wouldn't take their kids place if we could! We all have our breakdowns and it's okay, I feel stronger after I cry it out! Good luck, God Bless~
Hey everyone sorry i havent been back. I had a few more bad days....was walking around like a zombie. My poor kids and husband! i couldnt bare to read anymore so i avoided the internet. Anyway Billy snapped me out if it poor thing and im back. hes the one that has crohns and im moping. how stupid am i. i am so glad im here. only all of you understand and always know what to say to make me feel better. This evening one of Billy's GI's rang me to see how he was going...they have been amazing....and i express how i weas feeling. He put it all into perspective for me and im feeling much much better. Im feeling so grateful we have amazing doctors taking care of our boy. Im usually such a positive person and am not understanding why im struggling with this. what i have realised is i have to be stronf for my boy. Thank you everyone for your support and caring. your all so strong! The articles/links were awesome thank you dusty. i should be thankful billy is doing well but ugh! my husband is on holidays in 5 days time. 5 weeks off. house renovations and then we are headed to sydney for a family holiday. we need it. thank you again everyone xxxxxxxxxxxxxxxxxxxxxx
DustyKat
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It's so good to hear that you are feeling better! And that you have such a caring and compassionate medical team around you, that is priceless!
Oh Pen, I think the reason you may be struggling has nothing to do with your ability to be a strong and positive Mum cause you are! and everything to do with you grieving for your boy and the desire to more than anything have the power to take this disease away from him and make it your own. It will get better over time hun but I don't think we ever get over that feeling of helplessness...:hug:
Have a fab holiday in Sydney, it is so very deserved! It you want any ideas of places to go give me a hoy!
Dusty. xxx
Oh Pen, I think the reason you may be struggling has nothing to do with your ability to be a strong and positive Mum cause you are! and everything to do with you grieving for your boy and the desire to more than anything have the power to take this disease away from him and make it your own. It will get better over time hun but I don't think we ever get over that feeling of helplessness...:hug:
Have a fab holiday in Sydney, it is so very deserved! It you want any ideas of places to go give me a hoy!
Dusty. xxx
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Rypen, as usual, Dusty is bang on re the emotions! It really DOES get better but the heartbreak that your child is ill and the frustration of believing that you are helpless wears you down. But, remember, you have not become helpless at helping your child, you are researching/learning, ensuring that he receives the best treatment, advocating for him, etc. I certainly did grieve for the loss of the 'care- and worry-free' life we had during the first few weeks after diagnosis (still do sometimes). However, I also found that the more I learned, I regained some of that control and the helplessness greatly diminished. :ghug:
Dusty - "give me a hoy." 'hoy'??? :lol: And people make fun of us Canadians with our 'eh'!! :facepalm:
Dusty - "give me a hoy." 'hoy'??? :lol: And people make fun of us Canadians with our 'eh'!! :facepalm:
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I always say a good cry helps hope everything settles down for him and he can get the disease under control. Good luck and keep us informed. Your in my thoughts xx
Hi Rypen,
I'm with you 100%. I had picked up my sons prescription for Imuran one afternoon and read the insert with all the side effects. Next day, we were supposed to start and I just couldn't do it. I could not give him the med. I felt like I would be poisoning him. I cried and cried and was feeling so confused, hopeless and scared. My sister is a pharmacist and talking with her really eased my fears. She said that the drug companies have to write every incident that people experience while testing the drug, even if the drug wasn't the cause. They don't indicate the percentage of people that experience certain side effects either, so in our minds, all of the people get it...but that is not true. The other thing she said that made me hopeful was that new drugs are being tested over time...and so we are buying our kids more time to get to that next stage of new drugs that will have fewer side effects and be more effective...heck maybe they'll find a cure for this in the near future and our kids will be there.
Hoping this helps you through...
I'm with you 100%. I had picked up my sons prescription for Imuran one afternoon and read the insert with all the side effects. Next day, we were supposed to start and I just couldn't do it. I could not give him the med. I felt like I would be poisoning him. I cried and cried and was feeling so confused, hopeless and scared. My sister is a pharmacist and talking with her really eased my fears. She said that the drug companies have to write every incident that people experience while testing the drug, even if the drug wasn't the cause. They don't indicate the percentage of people that experience certain side effects either, so in our minds, all of the people get it...but that is not true. The other thing she said that made me hopeful was that new drugs are being tested over time...and so we are buying our kids more time to get to that next stage of new drugs that will have fewer side effects and be more effective...heck maybe they'll find a cure for this in the near future and our kids will be there.
Hoping this helps you through...
