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Diagnosed with crohns april 2016... need help

Posted , 6 users are following.

tina57873
tina57873

Hello im new to this... i was diagnosed with crohns in april 2016 after suffering for years i was rushed into hospital may 2nd with crohns flare up which led to sepsis i spent a week in hospital then... and recovered ok... on the 28th may i was rushed back in with suspected blockage and spent 2 weeks in hospital then... the surgeon did a laprascopic procedure but decided not to operate at the time due to me being on high dosed steriods etc and she said by taking parts of my intestines out at that time would make me more poorly... anyway came home after 2 weeks to recover and stay on my medication azathoprine and pentasa and to reduce my steriods... i finally came off my steriods just over a week ago and these past 3 days i keep being sick cant even tolerate water at the minute... feel really unwell and drained in myself.... does anybody no if this is the crohns bein active again... please help because its really getting me down with only being diagnosed since april and been hospitalised twice... so not sure what to expect

0 likes, 8 replies

8 Replies

  • craig84609
    craig84609 tina57873

    Posted

    Hi Tina, I am sorry that you have this disease. I have it as well and I can say that when you are in a state of active flare your doctor needs to monitor your chemisrtry often. They should be checking you for anemia and low B vitamins as both of these are problematic with CD and will result in lack of energy. once you get into remission they don't need to watch you as much. I have been on Prednisone for 10 years now as it has been the only drug that helped me. I am thankful that I have been in remission for this time, but I still go through a lot of pain daily from it as ones nerves tend to become hypersensitive to stimulous so they over react to normal situations and create pain. Hang in there it will get better, but talk to your doctor and let them know about your lack of energy. Also watch the bleeding as you can pass a lot of blood leading to anemia.

  • Alfielefoo
    Alfielefoo tina57873

    Posted

    Hey Tina,

    if you cannot tolerate water you need to go the hospital.

    you could dehydrate.

    also being sick is a sign of an obstruction.

    i hate the hospital too. But you really need seeing again.

    x

  • sheila51371
    sheila51371 tina57873

    Posted

    Hi Tina

    I am sorry you are having such a bad time of it at the moment. I have a feeling that as you are trying to reduce your intake of steroids, that this is the reason for your sickness. Someone told me once to take my time when  trying to reduce the steroids. It took me two years would you believe, but it was worth it in the end. I have no knowledge of the other drugs you are on because these days they use totally different drugs ie the azathoprine and pentasa.  Try boiling the water and putting it back in the fridge to make it more acceptable to you, From the sound of your letter you are also suffering from the bile duct playing you up, which could be causing the nausea. Crohns does make you feel very washed out and you certainly don't have the energy that people have, who are healthy. Don't knock yourself up trying to be ok for everyone, realise that Crohns is a nasty complaint that  you are unfortunate to have and take your time to do all the little jobs which your illness has prevented you from doing.  Best wishes and with much love

    Sheila. Keep strong.   

  • thi20955
    thi20955 tina57873

    Posted

    I feel sorry for you and I also feel scare too. I am having CD but it is mild but I do feel like suddenly I have no energy and the most annoying thing is Pentasa doesnt do well on me. My dr describe me Budenosine which cost 200 bucks for a month. I asked him for predisone but he refuse for I am old and I may not cope with side effect. At the moment, I have to eat small meals though I wanted to have big meal. Another problem is I have not much gas but very uncomfortable if it doesnt get out. I use charcoal but not helping much. My stomatch gurgle whenever I eats and whatever food I eat, it gives me gas and I have to go toilet. My waste is floating and I knew there are lots of gas in my GI track. We all suffer one way or another, this crazy illness drives me nut. Sometimes, I think of killing myself. What is the point to live long when you cant afford to live and what is the point to live long when you cant enjoy life but yet I have to hang in there hoping someday the scientist will invent something that cure the disease. I hope it doesnt pass on my daughter. I think you should  ask the dr at the hospital the questions that you are in doubt. Good luck.
    • Alfielefoo
      Alfielefoo thi20955

      Posted

      Im so sorry to feel how sad you are.

      i have sad days too, but whenever we get to rock bottom, the only way is back up.

      enjoy the small things , the sun in the sky, a good film.

      you are stronger than this disease. Xxxx

    • thi20955
      thi20955 Alfielefoo

      Posted

      Thanks Alfielefoo for your advice and hugs. It gives me hope that there are plenty of good heart and compassionate people out there. I dont know what you suffer but you seem strong. I need to be strong and I keep praying to be strong at this challeging time in my life. xxx
  • Jokuar
    Jokuar tina57873

    Posted

    That sounds dreadful for you Tina.

    I had a bad reaction to Azathioprine after being on it for 2/3 weeks which sounds similar to your symptoms. I had nausea and flu like feeling the whole time. The steroids will in most cases stabilise the Crohns symptoms so I think this may be a reaction to the meds you are on.

    I wish you well

    Regards

    Pete W

  • craig84609
    craig84609 tina57873

    Posted

    That is also something I forgot. You could be having a reaction to the meds. I was on several and some didn't work while others made my illness worse. Imurane put me in the hospital. It gave me intense knee pain and then I was running a high fever. My doctor freaked out and told me to go to the ER right away, as he was concerned that I had developed a serious infection, but it was my body reacting to the Imuran. When I stopped taking it the fever broke and I could walk again without pain. So it could be the meds. That is why I have been on Prednisone for so long as it was the only thing that worked for me.

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