A Horrible, Terrible, No Good, Very Bad Day (Due to remicade)!!!

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
Messages
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Hi All,
I am going to borrow what Izzie's Mom said yesterday ARRRRGGGHHH!!!
Today was Caitlyn's second remicade infusion and to say it did not go well is putting it mildly. She took her Benadryl and Tylenol 1 hour before and then we went to the infusion center. They started her up and her IV blew almost immediately. (that was the least bad thing). They restarted it and within 10-15 minutes Caitlyn starts saying I can't breathe Mommy, I ran to get a nurse and they came over and she starts freaking out I can't beathe I can't breathe, SHe turns bright red, breaks out in a rash and starts vomiting. They immediately stopped the remicade and gave her IV benadryl and with in 1-2 minutes she was able to breathe again. THe doctor then came up and ordered her to have a dose of solumedrol (type of steroid IV). THen she started shaking like crazy and her body got very cold. We kept putting hot blankets on her and after about half an hour she warmed up. The doctor thought about keeping her overnight but Caitlyn really did not want to stay so he said if she feels better in 1 hour we could go home. SHe fell asleep and when she awoke She felt better so they let us go home. She has still been feeling a little out of it and very nauseas. The doctor spoke with us and said they are willing to still try the remicade again but next time will premedicate her with IV Benadryl and IV steroid. The first infusion they did give her the IV steroid first and we had no problems. Last time she was on remicade 3 yrs ago she did get some issues with reactions which is one reason we stopped it then after 4 doses. I am so frustrated. She says she will not do a shot again. She did okay with the methotrexate b/c it is a small shot but she was unable to tolerate humira and I don't know about the cimzia if she will tolerate it. I am very nervous about continuing with the remicade I am just not sure if it is a good idea or not.
 
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I think you well deserve a glass of wine! What a day! :hug:

I feel your fear Kim and it is so understandable. I have never had to deal with this so if what I say is crap then please ignore it!
In view of Caitlyn's view on things I would probably be inclined to continue with the infusions, that and the fact that the staff will be on guard and they are taking measures to prevent it. If the Remicade fails again then that will be the time to broach the injections with Caitlyn again, perhaps with a health professional, doctor or nurse, that she trusts and has a good rapport with???

Now put those feet up and savour the wine Mum!

Dusty. xxx
 
Oh...I am so sorry...you must have been terrified!! I am glad she is OK but how scary. I guess if she is totally against the shots I would try to do Remi again...she's at the age where I would like to take her opinion into consideration, y'know?
(((HUGS)))...and I hope you had TWO glasses. :)
 
What an awful day!!! I can only imagine how scary it must have been for both you and Caitlyn. :( I also think that, at her age, you have to include her opinion in your decision. But, I can certainly understand your worry about continuing with Remicade. But, did she end up receiving the scheduled dose? Or do you have to return and repeat this infusion? :(
 
i had the SAME reaction yesterday to my Remi and my dr said its not worth it to try again it was only my third dose and i wasnt feeling better after the second anyway. Was she noticing a difference? If she is scared to try again i wouldnt do it. Stress makes everything 1000% worse with crohns so the less stress the better. Just thinking about my treament yesterday makes me want to cry or run to the bathroom to get sick i cant imagine letting them try it again. Im 21 and i felt so defeated knowing that Remi would no longer be an option so i am so sorry for her and such a young age to have this problem. My prayers are with you, too bad she cant have wine yet lol i for sure had a glass when i got home last night haha.
 
We were told that some people respond after the fourth or fifth dose by our Boston doc...(just sharing another point of view, not trying to argue :)) We weren't positive of an improvement but didn't want to give up (since you can't restart) without giving it a fair shake (especially since our options are somewhat limited).
 
Tess,
SHe did not end up getting the dose. I am not sure if we are just going to wait until she was scheduled next or if they will bring that appt forward. THey are supposed to call me. Stephanie,
I am so sorry you also went through this. This was Caitlyn's second dose and it is not yet working for her.
All,
Caitlyn was not feeling so good today. She felt very dizzy on and off. (I am thinking left over side effect from the Benadryl) She also started up with her stomach pain again which had been finally improving from the entocort. However they have decreased the entocort because this was supposed to be just for a short time until the remicade kicked in. I am thinking maybe to increase it back again but I did not have a chance to call the doctor and they are closed now. I will see how she does and if I have to I will call their after hours service.
 
PS. I got Caitlyn to go swimming yesterday and today and she said it help her joint pain. I wanted to recommend it if your kids get joint pain too.
 
I hope you get something worked out quick Kim! I don't like the thought of her being w/o until the next scheduled infusion. I know that leaves you with quite a dilemma after what happened yesterday!! Good luck!!
 
I'm so sorry!!! I know how scary that is. Nurses flying everywhere, oxygen tanks, large doses of benedryl injections... We had a similar thing happen on Brian's third dose. Three days after the bad reaction they tried the Remicade again...and he had the same reaction. (Not as bad because he was aware of the tightening in his throat sooner) He was tested and he was positive for antibodies. Caitlyn ought to try the Humira again. But this time use the EMLA numbing cream. Brian really says that helps. Once he thought the needle was out...and it wasn't yet. He says he doesn't feel the stick or much of the burn anymore. We put a dab of the emla cream on and wrap his leg with kitchen plastic wrap. He runs around playing for the 45 min its on there numbing.
 
I am so sorry to hear what happened, how awful. I am glad all is better now.

Our dr said most improve within the first 3 treatments of remicade, but has had some who did not react until 5 or 6 treatments when combined with endocort. That is what we are trying, but we have never had such a bad reaction. Good luck.

Take care,

Vicky
 
Thanks everyone Caitlyn has had 2 daya in a row feeling good keeping our fingers crossed. I think the entocort and lomotil are working. I an waiting to hear from the doctor tomorrow to set what the plan will be. They are closed today for Christmas.
 
I hope Caitlyn is continuing to feel better!!! She so deserves to enjoy the holidays!
 
Hi all sorry I have been out of touch for a few day. The holidays have been pretty quiet. Caitlyn has been still doing okay on the entocort. Her doctor called and they want to change her to cimzia. Now I just have to convince her.
 
Hello kim,

I have just been reading your post. How awful, as if the crohn's isn't bad enough, but the treatments can be awful!

I hope that the new approach suits your daughter much better. I guess we don't know what is going to be the best otion until we try. And it sounds to me that you are being a fantastic Mum.

I hope you have lost of support and hugs around you and Caitlyn.
Take care,
LilyRose
 
kimmidwife said:
Hi All,
I am going to borrow what Izzie's Mom said yesterday ARRRRGGGHHH!!!
Today was Caitlyn's second remicade infusion and to say it did not go well is putting it mildly. She took her Benadryl and Tylenol 1 hour before and then we went to the infusion center. They started her up and her IV blew almost immediately. (that was the least bad thing). They restarted it and within 10-15 minutes Caitlyn starts saying I can't breathe Mommy, I ran to get a nurse and they came over and she starts freaking out I can't beathe I can't breathe, SHe turns bright red, breaks out in a rash and starts vomiting. They immediately stopped the remicade and gave her IV benadryl and with in 1-2 minutes she was able to breathe again. THe doctor then came up and ordered her to have a dose of solumedrol (type of steroid IV). THen she started shaking like crazy and her body got very cold. We kept putting hot blankets on her and after about half an hour she warmed up. The doctor thought about keeping her overnight but Caitlyn really did not want to stay so he said if she feels better in 1 hour we could go home. SHe fell asleep and when she awoke She felt better so they let us go home. She has still been feeling a little out of it and very nauseas. The doctor spoke with us and said they are willing to still try the remicade again but next time will premedicate her with IV Benadryl and IV steroid. The first infusion they did give her the IV steroid first and we had no problems. Last time she was on remicade 3 yrs ago she did get some issues with reactions which is one reason we stopped it then after 4 doses. I am so frustrated. She says she will not do a shot again. She did okay with the methotrexate b/c it is a small shot but she was unable to tolerate humira and I don't know about the cimzia if she will tolerate it. I am very nervous about continuing with the remicade I am just not sure if it is a good idea or not.
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Remicade or any biologic drugs arent very safe drugs and i've found them not to be effective. Try to get LDN it's safe, cheap and effective. It's the only med that has worked for me in 4 years. Take into consideration that i have a severe case of Crohn's colitis & pancolitis. I'm going into remission. If you'd like more info. click on my blog link and read away about the LDN. It's everywhere on my blog. Good luck and don't worry... things will get better with persistance
:):heart:
 
CrushingCrohn's,
I read your blog and read up about LDN. It sounds good. I am going to speak with her doctor about it. I know he will probably argue with me again but hopefully he will be willing to research it and allow us to give it a try. He did eventually with the EN.
 
I haven't read much about LDN recently but it does seem to promise fewer side effects. It may be worth a try. Good luck! Let us know how it goes!
 
Kim,

Can't offer you any advice re LDN but wanted to wish you luck with it! I really hope it can bring Caitlyn some relief!
 
I've never had a GI doc even mention LDN. How is it given? I should just look it up, but I'm being lazy by just asking...what are its remission success rates?
 
Response to LDN Inquiries

A doctor will never mention or recommend LDN to you. The great thing about this medication is that it's cheap, effective and SAFE (1 side effect was found in the trial studies and it was drowsiness/fatigue). The drug has bee around for over 20 years and was first created for opiate addiction at 50mg doses. This Dr. from harvard was the 1st person who had the genius idea of trying this drug at super low doses for people that had inflammation/autoimmune disorders (such as crohn's) and it was found to effective. Now the reason your dr will not mention it is because most doctors only know about the treatments that pharm reps bring to them. Because the FDA has approved the drug for opiate addiction, that is why most doctors (including my gi doctor)will not prescribe it. You have to find a doctor that is an Integrated Medicine doc. Luckily, I found my wonderful doctor an hour and maybe 20 or 30 minutes away and it is way worth the drive.
The way it is prescribed is in pill form & it also comes in a cream/lotion form, but I have never tried that. The doctor will write a script for 1mg or 2mg whatever dose they feel is necessary (a dose between 1 & 4.5mg) and because it only comes in 50mg pills you must pill the script at a compounding pharmacy - Walgreens, CVS (most of the big pharms do compound). I use walgreens and you initially have to drop off the script , but I recently moved and when i called for the refill, she said mailing the refill would not be a prob.
Reason you need to find a comp. pharm is because they take the 50mg pill and make 1mg 2mg ect., pills for you.
I just posted new info on my blog about LDN. It is effective for treating cancer (the newest is breast cancer they found) pancreatic cancer, all automimmune diseases, aids ect. check out the newest news and if you're interested, I can give you a contact, her name is Crystal and she can give you prescribing doctors in your area.
:) Hope I have been a help.:ycool:

http://ahhhhhihavecrohnsdisease.blogspot.com/
 
Brian'sMom said:
I've never had a GI doc even mention LDN. How is it given? I should just look it up, but I'm being lazy by just asking...what are its remission success rates?
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88% of the subjects in the Crohn's Clinical Trial at Penn State responded positively and had a significant decrease in symptoms. & the most beautiful thing is that some subjects only complained about being fatigued. ONE UNO 1 side effect. I only had some within the first 1 or 2 days of taking the med. but I dont have side effects.
 
kimmidwife said:
CrushingCrohn's,
I read your blog and read up about LDN. It sounds good. I am going to speak with her doctor about it. I know he will probably argue with me again but hopefully he will be willing to research it and allow us to give it a try. He did eventually with the EN.
Click to expand...

One bit of advice to you. YOU bring the research to him. Print out the studies done by jill smith from penn state. 1 is on my blog page that was published in 2007, the 2nd one was published in 2010 or 2011. You can just go to ClinicalTrials.org or .com. The link is on my blog for that site. Print them and show him the evidence. :dance:
 
Thanks for the info about the studies. We have an appt on Monday with him. Keeping our fingers crossed that he listens
 
Hi Kim,

Good luck at the appointment!! When Stephen was first diagnosed, this was something I briefly looked at (read about it on this site) and would again consider it if the EN therapy stops working for him!

I hope your doctor is open to trying it!
 
Entorcort is what you mean by EN? I briefly tried that if that's what it means. It worked terribly, almost felt as if I wasn't even taking a steroid. My body is pretty much prednisone dependent and thank God I am only on 10mg and I am getting better due to the ldn and the vsl#3. Soon.. no more steroids (it has given me osteoporosis). :shifty-t:
Oh check it out though.. Just read this today on a friend of mines blog. It talked about the importance of healthy gut flora (bacteria) in pediatrics and how it's important to digestive health. Then the last week I just read that unhealthy flora can lead to diseases and conditions that are totally unrelated to digestive issues (although it's likely you would develop a condition of the intestines if your gut bacteria was not healthy). That's why probiotics are so important. Even healthy people should take a probiotic because things like antibiotics, dental work and probably certain other things that people put in their mouths and swallow, tend to wipe out the good bacteria in the intestines. The only way to get healthy bacteria back, is to add something ...like a probiotic daily or yogurt. It's absolutely vital to good health.

& Kim, don't get let down if the doctor refuses to prescribe it. The majority of GI doctors are hesitant about prescribing it . In your defense however, orphan drugs (basically any drug that is prescibed when all other recommended treatments fail. So it is legal to prescribe this drug to a patient).
Our medical system disappoints me.:mad2:. Doctors are literally ruled by pharmaceutical companies, insurance co.'s & the best one of all the FDA. Pharm Reps use marketing to convince clinics and doctors. with their great marketing strategies, the doctors end up becoming dependent on those reps to bring them the "newest & best" drug appropriate for their specialty rather than doing their OWN research to find out what the newest and best options are. All it takes is clicking on a scientific journal site or going to say ummm PubMed where clinical studies can be read. Trust no ones word, find it out yourself.
A biologic drug I tried had little success. i was on Remicade for 5-8 months and i really was not a good candidate for an immunosuppressant treatment because of several factors, 1 of them being that cancer runs in my family and what biologics do is basically weaken the immune system and turn off the body's cancer fighting abilities, OH and this just popped in my head - ** children have more of a risk of getting a form of cancer from a biologic (i read this from a reputable source) or getting a severe infection (bacterial/fungal) because think about it; kids are in the process of strengthening & building their immune system. Kids get sick a lot because they dont have as many antibodies as an adult, they are still growing. In my opinion, if you think of the common sense and logic when prescribing this med to a child, seems quite dangerous.
I can go on and say more that would just be frightening to you, I'll leave the rest up to you to read and find out. I used to have no real knowledge about our med. system, the real truth about meds ect., but then I started to read, then read more & more and now I'm not blind to what's really happening in our nation in the area of health & medicine.
Remember this one thing I'm about to write & just ponder on it - Our nation isn't getting healthier - doctors manage symptoms not treat the underlying disease. Theymanage (keep the patient sick, treat the symptoms to keep them comfortable........ & of course coming back). & lastly - Our GDP in the area of health spending is 17.9% in the US (in the 60's health spending was 2%). :thumbdown:Just something to think about.

Really, If you want to read more on ldn or new treatments and get links to reputable sites to read up on a specific disease, I have all of that on my blog which is http://ahhhhhihavecrohnsdisease.blogspot.com/ follow me and everytime I publish new info/news you will get a notification.
I am just very passionate about the health of our country because it's looking pretty bleak when you look at the numbers. Also the effort I had to make to actually get a medication prescibed to me that is perfectly safe - It's Insanity. 4 long horrible years I've been sick and now I'm getting better, I had actually forgotten what feeling good, felt like. For the people that are not as determined & trust their doctor to know what the best treatment is for them, will never conquer the disease. Doctors love LOVE patients that will take whatever is suggested, can get poked with whatever they say, & DONT QUESTION ANYTHING. LOL that is not me at all!!
It makes me sad to think about how people are sick and dying... Because yes, Crohn's was killing me and I knew it, so I spent almost every waking moment (cause I couldn't work) researching because I knew there was something that I didn't know, but knew that if I searched, I would find. :grr1d: & yay... I did!:emot-dance::ybiggrin:
 
izzi'smom said:
Oh...I am so sorry...you must have been terrified!! I am glad she is OK but how scary. I guess if she is totally against the shots I would try to do Remi again...she's at the age where I would like to take her opinion into consideration, y'know?
(((HUGS)))...and I hope you had TWO glasses. :)
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This poor little girl does not have to live like this. No child has to live like this. Remicade = Expensive Garbage. ESPECIALLY for children... It's dangerous. I am not attacking you, I'm just wondering when people will stop trusting everything the doctor says?? People need to get on your computer and start reading... Learn a thing or two. Open your mind and stop getting thrown back and forth by doctors. Actually in this case, it is your child who has to suffer by being thrown back and forth. That would fuel me even more to find something SAFE that will improve my childs' quality of life.
DOctors will hate you for being proactive, but who cares when it comes to LIFE :ybatty:. I've been dropped by 3 doctors and have fired 4 -I DONT CARE! It's called fighting for my freaking life and not quitting until I get what is needed for to get better.
Unfortunately, the solution isn't going to get handed to you on a silver platter. It's just not. But we live in a time that we can easily get the answers because we now have the tools. Use them because little children depend on you to choose the best for them.
I need to go to bed because I'm getting worked up AND it's late...early no late.:eek2:
I apologize for being harsh and sounding b****y, I just really care for the suffering because I know more than ever what it is like to have tis disease. My family didn't even support me during my darkest days because they simply just don't know what it is like... Ignorance is bliss I suppose. As my father said "We don't care to know what it is, we just want it to be gone" exact words... Yeah he has a problem with not thinking before spewing. Just try your best to listen to the kids & search for the answers for them. :hug:
;)
 
Crushing Crohns,
I have to agree with everything you said. There is no question that the pharmaceutical companies are running the show and I am talking from personal experience as a nurse midwife. I very much believe in looking into every option I can. When my daughter was first diagnosed I did not want her on any of those drugs imuran or remicade or anything like that. We had to fire our first doctor and ended up taking our daughter to someone in Manhatten who offerd us the alternative of Methotrexate. Now methotrexate is not a benign drug either but it has been around for many years and I felt more comfortable with it for her. It worked great for almost 2yrs until it stopped working. I wish our doctor had offered us the option of EN which stands for enteral nutrition by the way. But they never said anything about it and Caitlyn was not able to do it recently when we tried it. Her doctor just keeps pushing cimzia and I keep telling him no. I had never heard of LDN it never came up in any of my searches until you wrote me about it. I am going to fight him to prescribe it for her. (I already know it will be a fight) Our appt. is this Monday coming up. Thanks for your help. I really really appreciate it.
 
You are all aware that there is an LDN forum on here?

This poor little girl does not have to live like this. No child has to live like this. Remicade = Expensive Garbage. ESPECIALLY for children... It's dangerous. I am not attacking you, I'm just wondering when people will stop trusting everything the doctor says?? People need to get on your computer and start reading... Learn a thing or two. Open your mind and stop getting thrown back and forth by doctors. Actually in this case, it is your child who has to suffer by being thrown back and forth. That would fuel me even more to find something SAFE that will improve my childs' quality of life.
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I know you have apologised but in my opinion this is over the top, but I also know you are saying out of the kindness of your heart. :)

The decisions we make on behalf of our children are the most heartbreaking of ones. We do not make them lightly, we do not go in unquestioning nor without research. As you would know, Crohn's is highly individual and there are no easy fits. LDN does not work for everyone but for some it is indeed a godsend, just as for others Remicade has proven to be. I think we need to be open minded about all treatments, and I'm not just talking medication here, whether they be traditional or non traditional. Above all we need to be supportive and cohesive.

Dusty. xxx
 
I have a child who has had crohns disease for over 15 years now, and I can tell you that I have researched this disease SOOO much over these years. Everything from LDN to hookworms, from Remicade to stem cell transplants. Sitting at my computer until the wee hours of the morning, determined to find an answer. I have always done what I thought was best for her. I can honestly say, looking back over the past 15 years, that I left no stone unturned, and that there is not one single thing that I could have done differently. I always take solace in the fact that I could not have tried any harder than I did.

But, like Dusty said, what works for one, doesnt for the other, and that's the most frustrating thing. Would'nt it be a different world for us, if we could identify one treatment or diet plan that works for everyone.

My child was the 1st pedriatric patient in the world to test drive Remicade. They were'nt sure how much to administer or how frequently and what the effect would be. I searched my soul before allowing them to do this. You may find fault with my decision, but unless you have a child who is living on TPN and has refractory disease, you will never understand. It did in fact help not only her, but many other children who were also suffering. It gave her her life back.

There is nothing in the world stronger than a parents love for their child, and we are all doing the best we can, so that one day when we look back over our shoulders, we can honestly say we tried our best.
 
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Kelly2 - Thank you so much for test driving Remicade.... I believe it is the miracle drug that keeps my daughter in remission. It is definately the right drug for her until our dream of finding a a cure for Crohn's is found.
 
Wow Kelly, I can only begin to imagine what you went through when having to make the decision to commence Remicade under those circumstances. :hug:

Thanks be to all those that pave the way for those that follow...

thank_you-8233.gif


Forever grateful, :)
Dusty. xxx
 
Kat said:
Kelly2 - Thank you so much for test driving Remicade.... I believe it is the miracle drug that keeps my daughter in remission. It is definately the right drug for her until our dream of finding a a cure for Crohn's is found.
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Thank you so much for sharing Kat. It is stories like yours, that make me think my journey was not so futile, that somewhere along the way, we managed to make a difference.
 
DustyKat said:
Wow Kelly, I can only begin to imagine what you went through when having to make the decision to commence Remicade under those circumstances. :hug:

Thanks be to all those that pave the way for those that follow...

Thank you Dusty! After I signed all the consent papers, I remember sitting there as they started the infusion - with all the "white coats" walking in and out of the room. Then, one of the drs. came over to me and said, "Do you realize that this could be history in the making if this works?" I remember watching the vitals and silently praying that she would not have a bad reaction, and that this was going to be the answer we were all looking for.

I believe we are going to lick this disease one day. The allogeneic stem cell transplants are very exciting to follow, and show such promise. We will have to watch and see what happens.
Click to expand...
 
"Do you realize that this could be history in the making if this works?"
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And you did make history! What a wonderful gift you have given to so many and for many a it was a gift of life, both medically and emotionally. :)

I believe we are going to lick this disease one day. The allogeneic stem cell transplants are very exciting to follow, and show such promise. We will have to watch and see what happens.
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Amen to that!

Dusty. xxx
 
We have strong parents, like you Kelly, to thank!!! We are lucky to have your examples to follow, you didn't have that. Thank you for posting your story. It helps us newbies more than you know. :) :) :)
 
Kelly,
hat is amazing. You are amazing and strong to have been able to be so brave for your child! Thank you even though remicade did not work for us it did for so many others!
 
Thank you to everyone for your kind words - I cannot begin to tell you how much it means to me, to think that I might have helped other people who have followed in my footsteps.

I am so thankful that we have each other to learn from, and to share in our experiences and our knowledge, and to support one another - who else could possibly know what its like to walk in our shoes!
 
Thanks to you, Kelly, from another Remi mom...not sure if it is working for us or not at this point, but I appreciate it being an option <3 Your decision must have been SO stressful!! (((HUGS)))
 
crushingcrohns said:
This poor little girl does not have to live like this. No child has to live like this. Remicade = Expensive Garbage. ESPECIALLY for children... It's dangerous. I am not attacking you, I'm just wondering when people will stop trusting everything the doctor says?? People need to get on your computer and start reading... Learn a thing or two. Open your mind and stop getting thrown back and forth by doctors. Actually in this case, it is your child who has to suffer by being thrown back and forth. That would fuel me even more to find something SAFE that will improve my childs' quality of life.
DOctors will hate you for being proactive, but who cares when it comes to LIFE :ybatty:. I've been dropped by 3 doctors and have fired 4 -I DONT CARE! It's called fighting for my freaking life and not quitting until I get what is needed for to get better.
Unfortunately, the solution isn't going to get handed to you on a silver platter. It's just not. But we live in a time that we can easily get the answers because we now have the tools. Use them because little children depend on you to choose the best for them.
I need to go to bed because I'm getting worked up AND it's late...early no late.:eek2:
I apologize for being harsh and sounding b****y, I just really care for the suffering because I know more than ever what it is like to have tis disease. My family didn't even support me during my darkest days because they simply just don't know what it is like... Ignorance is bliss I suppose. As my father said "We don't care to know what it is, we just want it to be gone" exact words... Yeah he has a problem with not thinking before spewing. Just try your best to listen to the kids & search for the answers for them. :hug:
;)
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Lets not judge each other. Do you think that parents of kids with IBD don't agonize about each decision? Do you think we haven't each weighed the risks of these drugs? Do you think I didn't research the risk of side effects of Remi? Do you know that if nothing else works, my child will lose her colon within the next four years?? (Or we could just leave it in, so she can get colon cancer). How many eves do you think I have spent crying in front of this screen? Do you think my daughter ENJOYED the ng tube I suggested to her doc? or the diet that removed everything except chicken, fish, and rice for six weeks? I love this site because we are all supportive of each others decisions, not judgemental or critical. Lets keep it that way...and enjoy the positivity while helpfully suggesting alternatives.
 
kimmidwife said:
Crushing Crohns,
I have to agree with everything you said. There is no question that the pharmaceutical companies are running the show and I am talking from personal experience as a nurse midwife. I very much believe in looking into every option I can. When my daughter was first diagnosed I did not want her on any of those drugs imuran or remicade or anything like that. We had to fire our first doctor and ended up taking our daughter to someone in Manhatten who offerd us the alternative of Methotrexate. Now methotrexate is not a benign drug either but it has been around for many years and I felt more comfortable with it for her. It worked great for almost 2yrs until it stopped working. I wish our doctor had offered us the option of EN which stands for enteral nutrition by the way. But they never said anything about it and Caitlyn was not able to do it recently when we tried it. Her doctor just keeps pushing cimzia and I keep telling him no. I had never heard of LDN it never came up in any of my searches until you wrote me about it. I am going to fight him to prescribe it for her. (I already know it will be a fight) Our appt. is this Monday coming up. Thanks for your help. I really really appreciate it.
Click to expand...

You seem very proactive and you speak your mind. I'm the same exact way. I have had so many doctors. Goodness I was diagnosed when I was 17... Man I just counted.. throughout the years, i've had 8 -9 doctors (gi docs). It's terrible that we have to struggle and argue our point to the doctors when it comes to LDN. It helps many many other disorders and diseases BUT because the FDA only has it approved for opiate and alcohol addiction, no other doctors will be told about it, just the psychiatrists. It's really a very sad situation HOWEVER I just read about a new Pharmaceutical Company TLS, LLC ...
http://ahhhhhihavecrohnsdisease.blogspot.com/search?updated-min=2012-01-01T00:00:00-05:00&updated-max=2013-01-01T00:00:00-05:00&max-results=5 It's the 1st article on the page.

They are a drug company dedicated to testing older drugs that can be used to treat various other diseases than what the drug was approved for (like LDN). Finally a drug company that wants to invest and do things differently. Read the article.. it's promising
 
CrushingCrohns, I'm with you on many of your points re: docs' motivations and influences.
I resisted drugs for Violet from dx in Sept 08 until YESTERDAY when she started Humira.
Her doc knows we will give it a THREE month trial only, and absent amazing improvement, I'll d/c it.
I maintained her on formula feeds and supplements (which she will still be getting) only for all this time; it took her active life coming to a screeching and sudden HALT in Oct for me to even consider using dangerous drugs. I still resisted from Oct until late Jan when new labs left no more doubt that her new invalid status was due to Crohn's, and if left undertreated would likely continue.
If Humira fails I may try LDN, it sounds like a safe gamble at the least. I wish the docs pushed enteral feeds more. Those, to me, are crucial especially in developing kids. V went from 59lbs/55in (after losing 20lbs in two months) at dx to 128lbs/63in presently, from stable nutrition via formula feeds.
 
I cringe when people on here define the biologics "dangerous drugs". Have some compassion for the ones that use them because nothing else worked. NO drug is just completely safe, really. And crohn's is a dangerous disease. I was never comfortable with the 'chemo drugs' or steroids that are used with crohn's either. And just because a drug is old doesn't mean its safe. Not all medications work for every crohn's patient. You have to get to the one that gets you into remission and one that keeps you there. Simple as that.
And if you have a GI that is so influenced and compromised that they prescribe drugs solely on a pharmacutical rep, then maybe you need to change doctors. Our GI cares about our son....not the drug company.
 
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BriansMom, believe me, I have much compassion as V just started Humira yesterday!
I do fear it, though, and I do feel it is dangerous. It took a lot for us to get to the place where we agreed to give it a 3mo trial.
But indeed, so is untreated/undertreated IBD dangerous.
There is no easy way for these pts.
Or for us mothers.
 
Imaboveitall, I wasn't necessarily speaking at you about the compassion...the 'dangerous biologics' is mentioned often here. I also fear it...but I fear ALL the drugs. Our GI said many overlook the dangers of steroids and act like they have no harm, for example.
Hope Violet does well on Humira.

Here's a link I shared last year that I found on the ccfa website. Its a doctor discussing the risks vs benefits of drugs that treat crohn's.
http://www.ccfa.org/webcasts/Risk and BenefitsTranscript.pdf
 
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Unfortunately, the subject of treatment is always going to cause angst for many as many people have passionate beliefs about them and rightly so. I think for parent's this is even more heightened as we have to make those decisions not only for others but for those we hold so dear.

It is difficult to read the words dangerous drugs, even though this is not the intention, as it not only highlights what our children put into their bodies every day, week or month but at times I also think it conjures up feelings that heartbreaking decisions that have been made were perhaps done hastily or were ill thought through.

I am one of the parent's that never had time on their side. I really thought I did when Matt was diagnosed so very quickly and that we would in fact avoid what Sarah went through but alas it was not the case. I read of so many that have had the opportunity to try EN and the milder drugs and wish that my children had had that choice but it wasn't to be. That however does not stop me from rejoicing in your successes and wishing more than anything that they would last a lifetime.

What a dangerous drug is can be a very subjective thing. I could google what a dangerous drug is and immunosuppressives and biologics don't rate a mention. I well imagine illegal drugs and the legal (alcohol and tobacco) fill the lists partly because of the nature of their use and that also raises a very valid point. How dangerous are IBD drugs when they are used under constant evaluation and monitoring. No one denies that most of the drugs used to treat IBD do have the potential to cause very serious side effects but these serious side effects are rare and used in the context of untreated or under treated disease then the risk takes on another meaning.

I come from the angle of coming within a whiskers breadth of losing my daughter to this disease. They were very dark days indeed and ones I never wish to revisit. We all make our decisions based on what we have experienced, what we have read and what we see in front of us. There are no wrong decisions here, only choices that hopefully give our children not only life but an ability to enjoy it and live it to the full. That is their right and that is what each and every one of us is striving to do. I don't think the most important thing is how we get there but that we do.

Kudos to you all for surviving what is the most difficult thing a parent has to face, watching a child suffer and all the while knowing you can never take it away from them and make it your own.

Dusty. :heart:
 
It is the cruelest position in which to put a mother: having to choose between two options, i.e., unchecked disease or drugs with dangerous adverse effects ( and yes, BriansMom, I include steroids in that category. I refused them unequivocally for her).

I still have PTSD from the time just prior to dx when she was near death, so Dusty, I understand you, too. She was so weakened from starvation that she was having cardiac effect and had significant cachexia. Her weight loss, from 78 to 59lbs, was life threatening.
People don't realize (I didn't, and I have a med/sci background) how serious Crohn's can be.
 
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imaboveitall said:
CrushingCrohns, I'm with you on many of your points re: docs' motivations and influences.
I resisted drugs for Violet from dx in Sept 08 until YESTERDAY when she started Humira.
Her doc knows we will give it a THREE month trial only, and absent amazing improvement, I'll d/c it.
I maintained her on formula feeds and supplements (which she will still be getting) only for all this time; it took her active life coming to a screeching and sudden HALT in Oct for me to even consider using dangerous drugs. I still resisted from Oct until late Jan when new labs left no more doubt that her new invalid status was due to Crohn's, and if left undertreated would likely continue.
If Humira fails I may try LDN, it sounds like a safe gamble at the least. I wish the docs pushed enteral feeds more. Those, to me, are crucial especially in developing kids. V went from 59lbs/55in (after losing 20lbs in two months) at dx to 128lbs/63in presently, from stable nutrition via formula feeds.
Click to expand...

:ywow:WoW!! Violet has beeen through a lot.. geeez. She's strong. I think that having someone to support her the way you do, is sooooo important. It's a blessing to her and you advocate for her well, seeking what is in best interest for her.
Humira was the other option I could have gone with last year. I choose Remicade and I do believe that they are pretty much similar in chemical makeup. It took me a few infusions to feel somewhat better, but to tell you the truth, I never felt fantastic & STILL had constant BM's, which poses a problem if you want to have a life. I do believe that the medicine did work, but not as well as I was hoping... for the risk I was taking with all the possible side effects. Around the time that I went off the Remicade... It was at least 6 months into treatment, my hair started coming out like crazy. I'm sensitive to everything, my body just rejects some chemicals and I started to really take that into consideration when considering treatments. It's important to listen to our body, ya know? I really hope
I've never hear of formula feeds?? What exactly is that. I rememeber when I was extremely sick in 2007, I couldn't eat anything. It hurt to drink water and I ended up eating baby food because it was so milk. I was a mess.

So in Sept Violet was diagnosed (was she sick and flared) and she was not on any medications at all up until now? Not even prednisone (horrible drug)...A lot of doctors a prednisone pushers and it's fine, SHORTTERM... longterm prednisone has many terrible long term side effects. For me, I have Osteoporosis AND it's VERRRY hard to get my body to not flare when weening off of the darn stuff. I'm basically prednisone dependent so it's necessary for me to taper at a snails pace.
Have you ever taken Violet to a naturopathic doctor or an Integrated Medicine doctor? They think more along the lines as we do. Integrated Docs have knowledge about medicine and natural therapies. ALL doctors should have the knowledge and teaching like Integrated Medicine... It's logical and will open up more options to treat an illness. Usually, diseases or conditions begin with some kind of nutritional deficiency.. But of course they don't treat that issue... they diagnose and prescribe. Very sad. Sorry for the negative words... I'm just to my wits end with our medical system. It disgusts me, but on the brighter side, there's enough people that have caught on and are catching on to make a difference.
Well, I hope Violet begins to feel improvement. I noticed when I was 17 when first diagnosed with UC, my body recovered quickly because I was that's the joys of youth lol. Violet will get her life back soon. Just keep being a good advocate for her and try to understand her the best you can (my family has no interest in understanding my illness.. LOL my father :bat:says "We don't want to know what it is, we just want to get rid of it". Yeah, he's quite heartless. I just laugh at his ignorance:rof::yfaint:.
Let's us know how she does. :hug:
 
Sept of 2008.
And yes, no meds, from then until now. Just formula feeds via NG and "buckets" of iron as she is always anemic.
She did do a month of Pentasa in Oct when she started with the extreme malaise. It was a fail.

Note, though, that her labs/cap endo/SBFT were ALWAYS ABNORMAL and consistent with ACTIVE Crohn's and ongoing inflammation, the entire 3.5 years. She was ASYMPTOMATIC, yet had active Crohn's. The formula feeds brought about a clinical remission but NEVER biochem remission.

She led an active, normal life, though, so I chose to let her live with undertreated disease for this long as long as she had QOL. Knowing full well the risks inherent therein: stricture mainly.
Yes, I was THAT afraid of drug effect. And still am.

But now that she has NO QOL, the drugs seem more reasonable to try.
 
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Violets mom, I was told that Pentasa (and the like...Asacol, etc) can take months to work. (Its long term, not acute) Izzi was on it at varying doses for 6 months before we called it quits.
I know a lot of people haven't had much with these drugs but I have a friend at work that has been symptom free for 5 years with Asacol and diet modification (he avoids fruit/vegetables).
His sister was trying to avoid drugs and has had 2 colon resections.
(I know that everyone is different but just sharing different sides to the story :))
 
Thanks, IzzisMom.
She developed rectal bleeding after the month on Pentasa, and ocular migraines.
Within 12hr of d/c'ng it, the rectal bleeding stopped. She's never had it before or since. If not for that, I would have tried it longer. It's so benign compared to the other stuff.

Julie (trying to remember to start putting my name at the end of posts!)
 
imaboveitall said:
She developed rectal bleeding after the month on Pentasa
Click to expand...

It's funny, but the only time EJ has bled since his treatments began 12/09 was when we tried to discontinue Asacol. We have cut it by a third and may try to taper it further still...hmmm.
 
Dexky, it's the only incident of that she's ever had. The doc agreed it was an adverse effect of Pentasa. She also had an ocular migraine the same day the rectal bleeding happened.
Is this not the most screwed up disease ever? It could at least be consistent in its presentation for God's sake.:mad2:
 
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imaboveitall said:
Sept of 2008.
And yes, no meds, from then until now. Just formula feeds via NG and "buckets" of iron as she is always anemic.
She did do a month of Pentasa in Oct when she started with the extreme malaise. It was a fail.

Note, though, that her labs/cap endo/SBFT were ALWAYS ABNORMAL and consistent with ACTIVE Crohn's and ongoing inflammation, the entire 3.5 years. She was ASYMPTOMATIC, yet had active Crohn's. The formula feeds brought about a clinical remission but NEVER biochem remission.

She led an active, normal life, though, so I chose to let her live with undertreated disease for this long as long as she had QOL. Knowing full well the risks inherent therein: stricture mainly.
Yes, I was THAT afraid of drug effect. And still am.

But now that she has NO QOL, the drugs seem more reasonable to try.
Click to expand...

Mind my stupidity here.... but what is QOL? Sorry!
I was exactly the same way when I was young and had UC. I'd have flares that didn't interfere with my life and I would be able to "abuse" my body (with the things I ate, drinking alcohol ect.) and still recover nicely and in a quick amount of time. As you age, the body starts to not recover as quick, it's unable to tolerate certain things that it used to.
I guess we can call that..... getting old lol.
What does she eat?
 
imaboveitall said:
Dexky, it's the only incident of that she's ever had. The doc agreed it was an adverse effect of Pentasa. She also had an ocular migraine the same day the rectal bleeding happened.
Is this not the most screwed up disease ever? It could at least be consistent in its presentation for God's sake.
Click to expand...

:yfrown: I'm sorry!! I totally feel your pain. & to answer you. NO, It's not predictable and it bascially has a mind of it's own. That' why a lot of people are confined to their homes, due to the fact that at anytime Crohn's Disease may decided to show it's face and stay for as long as it wishes. It's extra difficult having a family that doesn't understand any of that because of their lack of interest and care. Then when I say I'm not feeling well.. they are totally astonished and in shock. My father is the worst because of course in his eyes, I eff'd up some how. We hardly talk because all he does is say negative things to me. Ever since I moved in this house in October. Thank God you believe her and stand by her. Hang in there:rosette2:, you never know what tomorrow will bring :hug:
 
CrushingC, she eats anything and everything.
Her doc never imposed any dietary restrictions, not even at dx when she was on the feeding pump 24hr/day for 30 days. She eats quite a lot. In her case, food intake has no bearing on gut function, though I know for many it does.

And I know what you mean about people not "getting" it. She looks the picture of health, well developed, great color, toned muscular body...but she's like a dishrag.
 
Julie...crazy that drugs meant to treat the disease can make it worse (also the reason we did Pentasa at varying doses and d/c it for a bit here and there to make sure it WASN"T worsening her symptoms (she gets bloody stools frequently)).
Izzi looks healthy too (steroid side effect) even when she feels so poorly she lays on the floor in pain :(
She was 63# before diagnosis and went from gaining an average of 8# a year to losing weight in the last 12 months (despite being on steroids...I wonder how much she will weigh when she weans again)
 
It feels even more wrong to give strong drugs to a healthy looking kid.
I know this makes no logical sense. It just "feels" that way.
 
That's the worst thing about an invisible disease hun and what makes the decisions and choices all the harder, looks can be deceiving.

Hmmm, have I said lately how much I hate this disease! :voodoo:

Dusty. xxx
 
It IS like a mind f**ck, Dusty.

It reminds me of a film called, "The Reflecting Skin", wherein every scene is a visual treat, beautiful cinematography, most scenes could be stilled and framed. But everyone in the fim is either evil, foul, deranged or horrible in some way. It messes with your mind to watch it; the gorgeous imagery coupled with unrelenting horror and ugliness of behavior.

Your kids' stories are especially noteworthy due to the sudden onset and severity. V's doc has told me of seemingly "fine" kids who show up with horrible stricturing and end up with SBS.
 
Well, Dusty does keep it limited to the member section...and the pm's....and....so....be a little discreet:)
 
DustyKat said:
That's the worst thing about an invisible disease hun and what makes the decisions and choices all the harder, looks can be deceiving.

Hmmm, have I said lately how much I hate this disease! :voodoo:

Dusty. xxx
Click to expand...


It's like living with a miserable person that has a mental illness... maybe something like Bipolar. Ya never know how you're gonna wake up and if the Crohnie will want to ruin your day.
I HATE that its so unpredictable.... & yes being misunderstood is probably the most frustrating when it comes to Crohn's.

I think of different ways I can wake people up to my reality and words do not work. PICTURES WILL!!! People respond to visuals. They can see what it looks like and how nasty it is. I've never tried images before.. why not. what's the worst that can happen... they still are ignorant and in denial about our reality. I'll take it to the next level and take a picture of the toilet filled with blood. Then maybe just maybe they will sort of get it.
Overall, people want to beleive & accept what they want. It doesn't even matter how you try to educate certain people :ybatty:. Those are the people you need to do that thing.... like in that song... Brush it off your shoulders:whistleinnocently:. They will just frustrate you and it's not healthy for you to get stressed and angry. Don't let people get you to that point. :bigwave: If they can't listen, accept (or at least try) and support you in some way, they:eek:rder:are not worth your time. :heart:
Hang in there:hang:
 
imaboveitall said:
Dexky, it's the only incident of that she's ever had. The doc agreed it was an adverse effect of Pentasa. She also had an ocular migraine the same day the rectal bleeding happened.
Is this not the most screwed up disease ever? It could at least be consistent in its presentation for God's sake.:mad2:
Click to expand...

I forgot to mention this before when I read this post. There are clinical studies that say Pentasa is not an effective treatment for Crohn's and UC.

Pubmed.gov or com or org (cant remember which 1) has a lot of research material if you'd like to read about specific medications and their effectiveness

:heart::soledance:
 
imaboveitall said:
It feels even more wrong to give strong drugs to a healthy looking kid.
I know this makes no logical sense. It just "feels" that way.
Click to expand...

Find the healthy ones and then you'll feel a little better about giving them their meds each day. In addition, have peace of mind!:rosette2:
 
imaboveitall said:
It IS like a mind f**ck, Dusty.

It reminds me of a film called, "The Reflecting Skin", wherein every scene is a visual treat, beautiful cinematography, most scenes could be stilled and framed. But everyone in the fim is either evil, foul, deranged or horrible in some way. It messes with your mind to watch it; the gorgeous imagery coupled with unrelenting horror and ugliness of behavior.

Your kids' stories are especially noteworthy due to the sudden onset and severity. V's doc has told me of seemingly "fine" kids who show up with horrible stricturing and end up with SBS.
Click to expand...

I'd probably like that movie.. The way you describe it, reminds me of this video I saw yesterday.. Deceivingly beautiful, but really deranged. This video I like to call it :evil: Sickness w/ a Smile :devil:
http://youtu.be/3xKUiva2WSQ
 
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imaboveitall said:
CrushingC, she eats anything and everything.
Her doc never imposed any dietary restrictions, not even at dx when she was on the feeding pump 24hr/day for 30 days. She eats quite a lot. In her case, food intake has no bearing on gut function, though I know for many it does.

And I know what you mean about people not "getting" it. She looks the picture of health, well developed, great color, toned muscular body...but she's like a dishrag.
Click to expand...

I have had 8 or 9 GI docs over the years and none of them know how important diet is with Crohn's or any digestive disease for that matter. They are not trained about diet in med school. My sister is doing Pediatric GI right now and she tells me that the education is about medicine, chemicals.

Diet is crucial & I bet if she made some small adjustments and excluded dairy, grains (rice is ok and you can buy anything from rice ice cream to cheese to rice bread) Nothing seedy like cucumbers, tomatoes, seaseme seeds, basically a gluten and lactose free diet for a little while will help greatly. Looks into the GAPS diet or SCD. :thumleft:

PS: stay away from boxed food, premade stuff, frozen meals.. :goodluck:
 
izzi'smom said:
Julie...crazy that drugs meant to treat the disease can make it worse (also the reason we did Pentasa at varying doses and d/c it for a bit here and there to make sure it WASN"T worsening her symptoms (she gets bloody stools frequently)).
Izzi looks healthy too (steroid side effect) even when she feels so poorly she lays on the floor in pain :(
She was 63# before diagnosis and went from gaining an average of 8# a year to losing weight in the last 12 months (despite being on steroids...I wonder how much she will weigh when she weans again)
Click to expand...

Izzi is on prednisone, humira & remicade?
 
crushingcrohns said:
Izzi is on prednisone, humira & remicade?
Click to expand...

No...She failed remi, is weaning from pred, and on Humira. She has refractory disease and has been on pred almost constantly for a year (her symptoms usually worsen either while being weaned or within a month after weaning).
 
izzi'smom said:
No...She failed remi, is weaning from pred, and on Humira. She has refractory disease and has been on pred almost constantly for a year (her symptoms usually worsen either while being weaned or within a month after weaning).
Click to expand...

My body does the same with Prednisone and it's so bad taking it longterm. Hopefully she'll be able to get off of it by being on Humira.
 
Hi Kim,

Maybe I've missed something somewhere...:) but, was just wondering how Caitlyn is dong? Has she been feeling better? :)
 

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