Crohn's and medication

Hi folks,some may remember me from a few yrs ago...Hi to them...I really had to come back on and warn others of what I have been put thru with ignorant doctors and so called specialists...I was diagnosed in 2004 with Crohns(now have an ileostomy with no small bowel left) and put on Immuran to help keep it at bay.Side affects include extra sensitivity to sun and trouble with spleen somewhere down the track...

    7yrs down the track........After 2yrs of being on this medication(oh no trouble at all with my spleen) I started to get a lot of skin cancers showing up...Explanation from doctors.."Oh you must have spent a lot of time in the sun as a youngster..."  So I started blaming my parents..as being a redhead I have never been a sunworshiper....I have since covered up,long sleeves and long pants and even gloves....Then as that didnt seem to be stopping them....the last 4yrs I have spent 90% of my time indoors.My friends and family can verify that...My social life can verify that.BUT....DID IT STOP THEM? OR EVEN SLOW THEM DOWN??? A big fat NO.

    In June I had 2 taken off me..1 on my arm near my wrist and one large one on my shin.Even though the doctor could see this wound was already splitting, he still took the stitches out.3 days later it had split wide open.I am on the train on my way to meet my 4 grandchildren for the first time..What was I meant to do but try my best in keeping it clean and uninfected till I got back home 2 weeks later.

   To cut this story a bit shorter...I now need more cancer removed from the shin wound.and then a skin graft...in turn 2 wounds that might not heal.(Imuran ,you have no immune system or something)...And you want to know why I am going through all this??? IMURAN.....If your doctors advises you to take this medication...PLEASE DONT!!! I cant stress enough how much you shouldnt take this pill....I was told by a skin specialist with one look and one question...Imuran is causing these things to come out....not the sun...Now I'm fighting to keep them from covering me from head to toe.When they cut one out..that place goes numb.I dont go out..they have ruined my life.I sat on an elephant when I went to America and you know what? she had better skin than me and I was jealous...I hate what they have done to me...I want to try and get through to others how dangerous this drug is as I know from experience your doctors wont warn you...Your a number and a guinea pig to them.....Thanks for listening...It helps me to vent too...Cheers..Love to all..P.S..I havent taken them since that day...Tarababy

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Sorry to hear that this form of medication causes skin cancer.  Its really too bad you can't

take it farther so more people know to stay away from this terrible pill.  Having cancer on and off for 20 years, this just breaks my heart knowing this type of cancer was man made!  

i do have a suggestion -

Pau Darco is a herb and it comes in a tea form or an extract - if you go to a vitamin shop you will find it.  You can mix the extract with the unpetroleum jelly to make up as a cream of sort or just apply topically in the liquid extract form.   I have seen cancer sores totallly disappear,  Good Luck



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  Butterfly48

Thanks Butterfy....I will give that a go.I am trying to take these specialists to court over this...but not having any luck finding a lawyer who is willing to fight a doctor..And because Im POOR....as I havent worked for yrs with my other illness ,Crohns...SHINE lawyers actually said it was because I was poor..How dare they..Like I needed to be reminded of that fact.But I will keep searching.I want these doctors and other people to sit up and take notice.Specialists get paid the big bucks to look after us...Not make us sicker..Which is what they have done to me..Yes,I'm angry...And when I finally get back up to see that particular specialist.....Im betting the cops will be called to get me out of his face....Cause I have a lot of anger to let out and he is the main target....And if I can help it..that will happen..You see there is a method in my madness...Papers are going to want to know why a woman went ape-shit in oncology ward...Then I will get to have more of a say and tell them why I went ballistic on his ass..He wants to take mine.(ass)...I'll make him a new one....What goes around comes around...Put it this way...he isnt going to be happy to see me.My arms look like an old tree root.My leg has a hole in it the size of a large coin..oh doctors just send me home telling me to look after this wound on my own...Went to the drug store(chemist) and he took one look and said get to a doctor..I laughed at him and asked how many more times??...If I can figure how to put a pic on here..I will show you all my leg...They wouldnt let a dog walk around with this kind of a wound on them...Ok later folks..I need to go find a punching bag now...lol...chow

Ok this is all I could do to let u see my leg....Not a pretty picture for a main photo..but now u can see what im going thru with just one of my wounds

I am so sorry about your medication problems.  I am also angry and upset at what we are not told about drugs- side effects and withdrawal.  Also about the advertising that tells us we need to go to our doctors and get more meds - pharmacy companies.  And, I don't have the energy to fight it all.  



About 4 months ago, I stopped seeing doctors and stopped taking medications.  I AM NOT recommending that action to anyone.  It all just became a huge problem for me- side effects and drugs creating same symptoms they were treating - seeing more doctors.   I got tired of fighting so I just quit - all of it.



I don't feel better nor do I feel worse but I am off doctors and off medications.  I am no worse without the medications.  So does that mean they weren't doing anything - I don't know.  But I am free.  There may be reamifications later but I am glad I made the decision I did.  I know drugs do wonderful things in many cases.  Other times, enough is enough.  We are told to trust our doctors but I am not sure that is always good advice.  I don't what the answers might be or if there are any answers.  But I am going to continue to do without for now - trust my and what my body is telling me.  



I wish you strength in your future adventrues and improved health for you mind and your body.  I hope you will continure to let us know what is happening with you.



dawneagle

Living with Your Ostomy | Hollister

Thanks for this response...I been at it all morning ringing around talking to people...Been told there is no lawyer in Cairns that will take on a doctor..What a joke..No wonder they walk all over us.They think they are god.Well this woman is going to see them sorry...I have gone off that pill as soon as I heard....I also found out that Omega 3 fish tabs work a charm for Crohns..So now I take them...I feel very much like you dawneagle...tired of being sick and sick of being treated like I dont matter-Doctors who only want your money...Doctors who dont give a shit about you.What most dont know about me is when I get a bee in my bonnet.....I fight till the end...Even though I feel lost and alone...I know I'm not..I really dont know how much more I can handle though...I hurt all over...And I know I have many more to be cut off me...I know I have a lot of pain and discomfort ahead of me....Nothing can ever make up for what they have done....But some financial help would have been good...So keep fingers and everything else crossed that I can find a decent lawyer that will put the work in and help me..Thanks...

Tarababy,



I am also sorry for what you are going through. It is a crime all in itself!!!

Doctor's are only taught how to dispense medication to different diseases, not truley understand that these drugs may cut the Crohn's symptoms but reak of creating other diseases in the proccess!! Yet we will still suffer, not them!



I may sound negative but I really do not care. The medications are killing us as much as the disease.

For Crohn's patients an ostomy is not the cure and we will still suffer with our disease at some point after. I understand for many it was a life saving surgery, as it was for me.

But it is not the end of our symptoms!



Ok the end of my little rant...



Ever give LDN a shot?????

well if you want to look into it, it may help with more than the Crohn's

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www.lowdosenaltrexone.org



Yes it is another drug but with out harm to any other organ and CHEAP!

I hope you could just take a peek at the info and see if you think it could help you...



Prayers~~~

Thanks Bluezz,written down and will suss it out today..You know whats bugging me more than anything at the moment?..As soon as anyone sees my leg,they say right up.."Oh go to the doctors!" Or Go to the hospital...Both places keep sending me home...They look at me as if I;m lying and that a hospital or a doctor wouldnt send me home like this..

Anyway I have also rang the complaints dept at the hospital and guess what??Its only going to take 3 months for them to get back to me and  let me know if they can chastise this specialist..What another joke...I have lost any faith in the medical system or the legal system...But I am making a site where us aussie can go ,we"ll start with Cairns people first...where you can go and find out about a certain doctor and see what the public say about them..Wether they were helpful or just right out hopeless....Can see there being a lot of dikhead doctors out there...And I'm going to love doing it...cheers...Only got 4 more days to find out if I get operated on....xxxxx

Hey tarz yeah as our email i have voted darlz i was on same medication as you as of so many medications i went on for ulceratative crohns disease and had a small skin cancer on my head which i had burnt off many times so far so good fingers crossed good luck tara will keep in touch talk later tonight mooza xxxx

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Thanks Mooza, didnt know you were on that! I wish mine were just sun spots...mine are raised-hard- some soft,  dry and crusty and damn sore...and I'm praying that now I'm off that dangerous drug...they will stop coming..Having to put bandaids all over my hands so I can sleep without bumping them or even touching some...The leg?! Well Monday I'm hoping to get an answer ...Something,anything a response from a decent doctor..even this skin specialist..So far she seems to be the only one who knows what she's talking about...Here's hoping anyway...But gee,its really putting me to the test..the leg...the skin...the 'attitude' of all in the medical industry....the whole situation.Its been just one slap in the face after another....Wish with all my heart there was a lawyer out there that had the balls to fight and stick up for an underdog......xxxcheers

Hey sweet Tara.....xoxo....sure have been worried about you girl......and btw YES that med you've been on is said to have produced blood and skin cancers in patients, it's not likely from the sun

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   the same goes with the meds Humira and Remicade!!! .....and now that my Crohn's is flaring again, Doc wishes to put me back on Remicade but I am not at all liking that idea and cannot make up my mind what to do, Remicade risks are "considerably higher" regarding severe reactions, cancers and death if put back on it having been off it for awhile....SCARY STUFF....your medicine falls into those risky catagories too.......such a shame we fight to tackle our Crohns and then have the 'remedy' cause more destruction to our bodies........I hate what you're going through girl

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  wish I was there to help you out somehow, wish we all lived closer xoxoxo

Hi Laura, thanks for the concern..Im still amazed at the comfort and support I get from my dear friends on line..Thank you thank you thank you!!!!!!!To everyone......

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..Went and seen how the biopsy results came back and seems there is no cancer there...BUT, even the skin specialist said she doesnt believe it..So, I am booked in for a skin graft.When I dont know..But I'm on the waiting list..So its a start...Now Im off the Immuran...I should start healing better...and hoping these nasty things stop growing....They will also be taking a few more nasty ones off me while they have me laid out and knocked out...Boy wasnt I pleased when she said "she will need a general"...Oh you bet I will need a general lady.....Any of them touch this without morphine or me knocked out will result in one of them being knocked out..Get my drift??!!!

   So now I sit here waiting....and trying to keep this as clean and as protected as I can...And as far as trying to fight these bastards...well not even laywers will go there...So I guess I have to give up and they win again.....Cant believe how doctors get away with so much damage that they do...and still go on to do it to more people....Hate them all...But I love you all....heheheh..cheers folks...

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