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Warning! Danger Approaching

Coralie fullSome interesting stuff about Coralie:

I’m from New Zealand. I’d love to visit Italy after seeing the film ‘All you need is love’ plus I just happen to have read alot of stories recently that are set in Italy. I like to paint but haven’t been inspired too much lately because of family issues.

Her Colitis Symptoms:

Currently, I am managing ok with a gluten free diet and drinking lactose free milk. Digestive aids seem to help with lactose intolerance also. Sometimes when I’m out I have panic attacks – where’s the nearest toilet? And very occasionally I don’t make it to the loo in time – luckily this has always happened at home. I also have back problems and you can be sure that as soon as I lie down on the yoga mat and start to do my stretches, I have to get up and make a run for the loo. What’s that song? Life is a battlefield? Yeh baby!

As this entry was to notify and inform fellow UCers about what can happen if you become sensitive to Remicade I won’t repeat my story in here. Perhaps I should have put today’s entry somewhere else?
I know I will sing the tune to Bonanza
Dum diddle dum diddle diddle diddle dum Bonanza
Dum diddle dum diddle diddle diddle dum diddle diddle diddle dum dum dum
Dum diddle dum diddle diddle diddle dum Bonanza
Dum diddle dum diddle diddle diddle dum diddle diddle diddle dum dum dum
Bonanza dum da da da
Did ya like that? Yes, I’m crazy.
Oh, that’s not enough words. How about:

Trailers for sale or rent, rooms to let, fifty cents (wrote fifty instead of 50 to use up more characters)
No phone no pool no pets
I ain’t got no cigarettes
Ah but, two hours of pushing broom
Buys a eight by twelve four bit room
I’m a man of means by no means
King of the road

Third boxcar midnight train
Destination Bangor Maine
Old worn out suit and shoes
I don’t pay no union dues
I smoke old stogies I have found
Short but not too big around
I’m a man of means by no means
King of the road
I know every engineer on every train
All of the children and all of their names
And every handout in every town
And every lock that ain’t locked when no one’s around
I sing trailers for sale or rent…

Rooms to let fifty cents
No phone no pool no pets
I ain’t got no cigarettes
Ah but, two hours of pushing broom
Buys a eight by twelve four bit room
I’m a man of means by no means
King of the road

I can’t believe that’s still not enough words. Man. There. Did it.

Medications and some more info:

I haven’t been on the site for a few weeks as been through the mill with my two sons. Remember that cool programme ‘My Three Sons’?. Well, I wish it would come back on air. It was a Nice programme and Uncle Buck was always good for a laugh. Back to why I am here today. Remicade, otherwise known as Infliximab.

I have been on this drug since about October 2011. It is administered every couple of weeks initially by infusion at the hospital and then every two months. From the very first dose I wondered if it had caused my head to itch. But I couldn’t be sure because I had just dyed my hair and thought it might be that. But each time I was given a new dose my head began to itch minutes afterwards but it would go away. All of that time my skin has been excessively dry. I have had to use emollient on my legs and wrap them in cling wrap throughout the winter months. I scratched my back raw. I thought it was just old age. I’m 52. Then in October I had a dose. After a few minutes I went bright red from the neck up and my head and back itched profusely. The nurse stopped the drip. They put cortisone in the drip and gave me antihistamine tablets. After about 30 mins the redness faded and the itching eased. They continued the drip. On the 12th Dec I had my last dose. After a few minu tes I felt a strange sensation in my throat. I didn’t hesitate to push the buzzer to summon the nurse. This was lucky because another minute or two and I couldn’t talk or lift my arms off the bed. My throat felt constricted and I opened my mouth to make breathing easier. My face swelled so fast it was like inflating a balloon. I was scared. I couldn’t communicate apart from nodding or shaking my head. I was in tears and the nurse told me not to cry as that would make me breath faster. The curtains were pulled around my bed and after the nurse checked my vitals and stopped the drip she started to leave the cubicle (for good reason) but I wanted to call out “Don’t leave me!” and I couldn’t. I was becoming drowsy and everything felt heavy. I could not lift my arms off the bed. Different body parts were suffering random violent spasms. I heard my phone receive a text. I didn’t even have the wherewithall to ask the nurse to check it for me. Shortly thereafter a doctor arrived. “What seems to be the problem”? “The problem seems to be that I have a man posing as an incompetent doctor at my bedside!” Then he started shouting at me to open my eyes and lift my arms. He shouted repeatedly at me and I couldn’t do as he requested so I just managed to say “I hear ya”.

Eventually things returned to relative normal but they kept me in overnight in case I had a delayed reaction. A delayed reaction?!!!!! What was that I just had? The precursor to the delayed reaction?? I ask you.

So, if you are put on Remicade or Infliximab and you get the itching don’t dis it as hair dye or old age or anything else. Take it seriously. It’s the drug! Keep a close watch and heed the warning bells. If I hadn’t pushed the buzzer when I did, I wouldn’t have been able to and would have gone into anaphylactic shock because the curtains were closed around my bed and nobody could see me.

Now I am controlling my UC symptoms with a gluten free diet and digestive enzymes to help with dairy products. Plus I am still on Pentasa.
Merry Christmas everybody : )

written by Coralie

submitted in the colitis venting area

17 thoughts on “Warning! Danger Approaching”

  1. Oh my gosh! That is absolutely horrifying! I am so glad you managed to push the call button when you did. Dr’s are idiots sometimes! “What seems to be the problem?” Like you were faking an allergic reaction? UGH! I am happy to hear you are taking charge with your diet. Is it helping? I have tried a gluten free diet on and off for years, amongst other things. Nothing seemed to help long term, I always flared no matter what I ate. So now I take 6mp, which is also horrifying. I’ve been in bed for three days with nausea, vomiting, aches, tiredness, etc. I am not a happy camper. I’m dehydrated like crazy and am considering going into ER for IV fluids. My heart is pounding out of my chest, I’m weak and lost about 7 lbs in a few days. :(
    I hope you are feeling better. Remicade sounds evil, like most, if not ALL drugs.
    Be well,

    1. Stay away from 6mp if you start to get leg pain n fever!! I was on for 3 weeks and just got out of the hospital . I got a rare side effect of pancreatitis and high fever leg cramps and such pain. I am home and still tapering off prednisone and refuse to go on anymore med’s of immune blocking and such dangerous side effects. I am on pain med’s and miserable! I don’t want to scare you, but just beware of pains and side effects, I thought I had flu.
      I am starting the diet and probiotics tmw. I hope you feel better soon!

      1. Hi Laura

        I hope you are feeling better now. I know in the states you have your summer holidays mid year but do you have a break during the Christmas New Year season as well? I hope you have been able to catch up with family and have some relaxing time. I have actually written myself a list of things to do today. I find that I just meander through the day most of the time. I mean, I see to my daughter’s needs but if I don’t have goals for the day, I just get engrossed in a book and can easily waste the day away. Yesterday, I went for a walk to the supermarket with my daughter. She was in the wheelchair of course. I thought I was ok but as soon as the thought of my bowel entered my head, about 20 metres from the house, I started to panic. I was able to control it until we got to the supermarket (self preservation set in, is what I mean) but only because I know there is a restroom attached to the cafe at the supermarket. Trying to get my 30 mins of exercise each day is such a challenge but I am going to make myself do it even if it means walking out to the garage (which is about 7 metres from the house) 20 times. There is a loo in there. Lol Alot of my problem seems to be psychosymatic (sick in the head) because if I am preoccupied and not thinking about my insides, I’m fine. It’s like a trigger. Anyway, I don’t think we get offered 6MP in NZ. I’ve never been offered it anyway. I started off on Prednisone and Pentasa. Then Azithioprine was added to the mix. After a year and half I was off the prednisone and azathioprine which wasn’t working and put on Methotrexate injections. That was a laugh in itself. I would tell the kids, Right I’m going in my room to inject myself. They knew that was their cue not to bother me. I would go into my bedroom and clear an area on my dressing table. Then I would lay out all the equipment I needed and after putting the needle together with the syringe would back up to my bed and lean on it to give me anchorage. Then after a couple of calm breaths I would grab some stomach fat between my thumb and forefinger and stab myself in the guts. Hang on a minute, was that one supposed to be on the left or right of my belly button. Remembering to do this every Tuesday at 3pm was extremely difficult and on alternating sides. Too much to take in. Then I would remember that I had been holding my breath and let it out. My kids never watched me do this. Maybe I should have let them. Anyway, that wasn’t really controlling my symptoms at all so after 9 months I was put on Remicade which didn’t work either. So I have run the gammet, gammit, gammut, gammot, (one of those myust be right) of nasties to satisfy the professionals. Now it’s up to me. I must say, it is good to ‘vent’ here. I hope no one minds. We’ve been invited to a picnic tea tonight and Imm sure it will be nice but you know what’s going through my head before I start, so I won’t. Love ya.

  2. LOL! Hilarious! Trying to use up all the words!! You are magical!! Oh, and Uncle Buck? One of the BEST movies EVER!! I sure do miss that John Candy…Back to your story.

    Remicade…MP6…humira…prednisone…asacol…lialda…I say NO NO NO!!! What on earth right do the doctors have to prescibe this dangerous stuff to us???

    We should not be treating UC with these sorts of drugs. The scientists and doctors are barking up the WRONG TREE!! These drugs will only hurt us in the long run, not help us or make things better.

    I believe we must treat this condition with diet, probiotics, NATURAL anti inflammatories like vtamin D, etc. It is the ONLY way. Someday, I will be vindicated…I just knmow it!

    Please take care of yourself…the doctors don’t care about you, so YOU have to!!


    1. You go girl! Let’s keep our fingers and toes crossed for a healthy new year and new natural treatments/cures.
      UC’ers with vouces and Doctor’s with ears!
      :-) Shelly

    2. Hi Bev and other kind people who have replied to my comments re Remicade. Yeah, it was scary and I think these drug companies have alot to answer for. I wonder how well they are tested before they are given to us. I have just bought Adam’s books and I have to say that when you read his testimony his case was as bad as anyones. Thanks Adam for setting up this website so we could all have a moan and a b…. so we can stop feeling sorry for ourselves. Lol. Diet most certainly does seem to have a large role to play in our recovery and I wonder when Chrohns and Colitis first came into being. I wouldn’t mind betting it was about the same time that people started eating refined, processed, packaged foods full of stuff that was never designed for human consumption. Or not long thereafter. So if this theory stands up it also stands to reason that the way to remedy the situation is to go back to eating simple, hand prepared foods without addditives and to eliminate the known allergens like wheat and dairy as much as possible. I can tell this is gonna hurt. I’ve given up the wheat already but cutting out dairy as well? Actually when I think about it, maybe it won’t be so hard if I can kick tea and decaf coffee. Glad you all liked my singing, by the way. : )

  3. Great post! I too am allergic to all those nasty drugs and luckily didn’t have as severe reactions. My favorite parts are how they still like to blame everything else, but the meds…REALLY?? :-) I now have reminders of all my meds and their allergies from a rash/bumps to hair loss to neurolgical stuff! What a funny road we travel and thank goodness we all have a serious funny bone!! :-) that’s a funny oxymoron!
    Oh, love the tunes…right to the Bangor, maine:-)
    Best of health in the upcoming new year! shelly

  4. OrdinaryWorldWhereRU

    I am a Remicade patient and for me it was the cure for a case of the hives. I had written earlier on this site about my adventure with hives. I was sent to an allergist/immunologist who started testing to see what could have caused the hives but he warned me up front it can come with the disease. I know there are many people dead set against any of these drugs but so far it has allowed me to keep my colon and lead a relatively normal life but every one’s body is different. At first I worried that the hives were caused by my infusion but when I got the next infusion it stopped all the itching as quick as snapping my fingers. I am so glad they were able to stop it before it progressed any further. I can appreciate how scary it can be. I was rushed to the emergency room after being injected with dye for a CAT scan. Like any drug administered via IV, all they can do is inject you with antihistamines and hope for the best since it is throughout your entire body. Again, so glad you are OK.

    1. Hey Ordinary…good to chime in and hear a positive and your update. I had 3 good years on it for uc …higher dose every 4 weeks…OK and maybe gave up my gallbladder for it, but…? I say if it works and keep a good monitor of yourself….continued success!

  5. Hi Shelly in Maine, I knew what you meant. Lol Maybe you can help me. I find that I cannot reply to what someone else has written until a third person has replied to them. Then I click on that link to reply to the original person. I don’t get a reply button at the end of new entries. Am I missing something?

    1. Not sure…try a couple of different ways. Once and a while it won’t post my reply-it loses it in space! Sometimes it helps if i restart my tablet/computer. Keep trying. It should eventually work!

  6. ahh geez! what you experienced is really scarey. i was on remicade, too, but luckily never had any crazy reaction like that. it gave me a 3 month remission which i was SO thankful for. i was able to finally work again. of course, i stopped responding to it, but i wish it hadn’t.

    i definitely would not take it again if i were you! i had a delayed reaction to my iron infusions. i already had 8 and on my 9th one, all hell broke loose.

  7. Hilarious! “Eventually things returned to relative normal but they kept me in overnight in case I had a delayed reaction. A delayed reaction?!!!!! What was that I just had? The precursor to the delayed reaction?? I ask you.” That made me laugh and laugh. Yeah, they wanted to put me on remicade last year. I read up on it and the side affects. No WAY would I let them put that drug in my body unless death were the only alternative. Thanks for posting. It helped me feel happier with my decision.

  8. Hi Wendy

    Well, I have good news and I have been trying to spread it like wild fire. I wish the docs would listen. I have been on the SCD since February. One week on it and my life was turned around. I have not had any symptoms since then. I am 100% better. No gas, no rushing for the bathroom, I can sleep on my left side all night. My bowel motions are regular and normal. Normal looking and normal smelling, something I never thought would be possible for me again. I no longer have to find out where the nearest restroom is when I go somewhere. I don’t eat potatoes or kumara, any flour or grain of any kind, no lactose and no added sugar. I stick to the legal foods. That’s all I do. Get the book, Breaking the Vicious Cycle by Elaine Gottschall. It’s all you need. Available from libraries or from, cheap as chips. Adam’s book is good too. But the first one tells you the science behind the diet, has testimonies from heaps of people, recipes and foods you can eat. There is no need for people to suffer with these horrible bowel diseases. I was at my wits end. I had an accident at my girlfriend’s house, in front of her teenage daughter. No drug has ever given the results that this diet has and there are no side effects, well, only great ones. I have just come home from a 21st. People much younger than me commented on how much energy I have.
    (Adam, I hope you are in complete agreement with this)

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