Unsure of what to do......?

Posted , 2 users are following.

Hi to all, I have stumbled across this website thank goodness!

A bit about me, I started getting bad tummy trouble May 2006 and lost a stone in weight, I thought it was due to a sickness bug, howerver the pain got worse, I to embarrased at the time to got to the Doctors, I eventuly went adn the Doctors told me I had PILES, ok i thought at leat I know what it is...but no the pain got even worseI went back to the Doctors at least 3 times, every time he said it was Piles.

By this time I was spending more time on loo, I couldnt help out at my son school a I was rushing to loo all the time, I went to the Doctors AGAIN and this tie he sent me for tests Huray Bloods X-Ray Etc, at the Hospital he told me there nd then I had Colitis and it looked bad, he then put me on the list to have a colopsy, which I had adn biopsy taken to confirm I had Colitis.

At this point he gave a prescription for ASACOL 6 a day, adn PREDNISOLONE 6 a day when i have a flare up.

I really didnt want to taken any tablets so i went to the health food shop shop and started taking vegan omega 3,6,9 vitinmin B complex, Aloe Vera tablets, and MSM methysulphoylmethane and thing calmed down with out the help from the Doctors perscrition.....I then started getting extreamly bad headaches but as soon as I stopped taking MSM methysulphoylmethane my headaches stopped!

My condition was slowly getting worse, I still had not had any results back from the Hospital about bloods etc, as i was feeling poorly i stared the ASACOL, I had only taken a few of them, I was vionlty sick had no balance adn very unwell, i stopped takin these stright away, rung the Hospital(as my GP is USELESS)!!

So I went to the Hospital and now had COLAZIDE percribed for myself I had the same reactions to this as the ASACOL, I now had the results of bloods, appartly the lowest B12 he had even seen......which is a sign of Crohns.......I need a CT scan next week another colopoy down the throat

I am now on AZATHIOPRINE have been taking 50mg a day first week was ok but now im starting to feel very spaced out, very relxed when i have taken them,but not good when you have a child to look after, over this last 48hr it has got worse I took PREDNISOLONE for the first time only 2 of these and my head has been bad all night.

I stoped work last friday as it got to much, at thgis moment im having to go to the doctors 3 times a week for B12 injections adn once a week for bloods like i said my doctor are useless and dont take bloods at the surgey, so im tooing and frowing all the time.

Has any one else experinced the same with the medacation? I woild love to here from you all. Im getting married very soon and wanted this calm before my big day!!!!!

Thanks for listening to me i know it long....lol

Love NATB

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5 Replies

  • Posted

    I haven't had such a rough time with my meds as you, but do hate being on prednisone. However, steroids is the only thing that gets me out of a flare up. Usually it works fast if you take the full dose. I am to take all my pills all at once and do so in the morning in hopes I can sleep at night. Being on steroids makes it hard to sleep, but if you have a bunch of things you have to do, the steroids tends to give you a boost of energy. I get a bit giddy and spacy, but have managed to teach 13 year olds while on the stuff. I really don't know how your body reacts, but my advice to you would to be to get rid of your inflamation fast and take everything the doctor gave you, especially the steroids. Asecol won't help your inflamation go away once it's really bad, only the steroids. Asecol is more of a maintenance drug. The steroids should help you feel better, maybe too good in some doses. It may be worth enduring or medicating (dont use ib prophin) your headaches to rid yourself of the inflamation. If you don't, it will only get worse. Good luck!

    smile

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  • Posted

    Hi thanks for that, Could I ask with taking the steriods do you put on weight? only a pure selfish reason....I want to be able to fit into my wedding dress, Sad I know but wondered if anyone has put on weight on quick once on steriods.

    Im on AZATHIOPRINE at the moment, but feeling very unwell on tehm completly spaced out, loss of balance, palatations. Whole body aches anyway lol im just really sensetive to any meds only plus with taking AZATHIOPRINE is t5hat I havnt been sick, all the other made me really sick.

    I had CT scan yesterday got appt 10th Aug with DR, still having B12 injection 3 times a week adn blood taken once a week!

    Love

    NatB :D

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  • Posted

    Weight gain is a possibility with prednisone. I've never been on the stuff you are talking about. Prednisone is what they always give me. It can cause moon face only when it has to be I.V. ed into you...huge amounts. I am currently taking 60 mg for 4 day and reducing every four until tapered off. I am watching my weight because the prednisone makes me think I am hungry...it tends to cause anxiety and hightened appatite. However, if you are having a flare up, you may not be able to eat all that much and could be loosing weight. I advise just watching your calories and try walking 30 minutes a day for exercise but also stress reduction (which I believe is one of the main causes of onset). The streroids shouldn't cause weight gain on their own without calorie increase...only saying from what I've been told and we're talking two different types of steroids. Just be in constant connection with your doctor, be demanding to them insisting you get urgent care. A flare up is urgent, not something you can wait around for. I have experienced the health care secretaries, like this week, try to make appoitments for me a week or two a way; I said no way, lady do you understand what a flare up is? When I get pushy like this, they get me in right away. Yesterday, I had this type of conversation with the secretary and she got me in four hours later to see a doctor. The doctor got me the right dose of meds I needed to take care of this. I have learned that with this, you have to demand answers and don't stop until you are getting better. Good luck!
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  • Posted

    Thanks for that......by what your describing about the prednislone i think its best I not take it. I suffer from anxitiy attacks as it is! lol my word there make me worse

    Im looking forward to my appt as thur I was in so much pain and you have to be DYING to get into my Doctors surgery I rung NHS helpline and they said I have to wait to see my specailst...Although I did mange to get a call back from my doctors and he echoed what the NHS helpline said\"see your specislist\" I sked him if he could change the steriods I should be on as they causd me headaches....No see your specialist he told me. Roll on FRIDAY

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  • Posted

    Just a wee bit of advice - Steroids can be administered to the back passage using something like colifoam enema. There are a lot less side effects and the ulcers are being treated quicker.

    After having no sleep for days my doctor put me on this. Faster recovery.

    Good luck smile

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