Having trouble coping with prolonged UC flare.

Posted , 11 users are following.

I would just like to know if anyone has some general advice on keeping positive during a horrible UC flare. I've been having this one since March; even been kept in hospital for it. I was put on steroids, but as I started to taper them off the symptoms came back worse than ever. I have an appointment soon to see my specialist, but honestly I'm feeling defeated. Any advice on how to bring myself back up again?

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  • Posted

    Hey Theresa, I had a real bad case of Crohn’s about 25?years ago. My whole world turned upside down. Had to move back in with my parents.  My relationship that I was in for 2 years ended and I didn’t see any light at the end of the tunnel.  With that being said, my dad would not let me feel sorry for myself. He forced me to get up everyday and take a 15 minute walk on the beach. For one it distracted me from the pain and gave me a chance to talk it out with him. Sort of like therapy.  At times I didn’t have the strength to do that walk but in the end it did help. Now all these years later I was diagnosed with UC. This time what keeps me sane are my dog and 4 cats. Also all these online support forums are very helpful. Your not alone with UC. I hope I was able to help. Be well. Andrew
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    • Posted

      Thank you kindly for the reply. You have helped a lot; I just need to find something to focus on. I have people to talk to, but I sometimes worry they're sick of hearing about this now. Silly I know. Thank you so much for sharing your story with me. 

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    • Posted

      Hey Theresa, I felt the same way. If they do care about you, they will listen. One thing I didn’t do was keep a journal. I think that would have been helpful.  If you can, try to get outside as often as possible.  A lot of times I would stay home and watch cooking shows to torture myself. That was crazy.  Like I said before, my pets now help me get through tough times. If you don’t have any at home, volunteer at a local shelter. I hooked up with a cat rescue.  Makes me feel good helping save our four legged friends.  Ok hope I’ve helped you some more. The  internet was was in its infancy back when I was sick plus I didn’t own a computer. Use it to your advantage. You have the entire world out there.  I hope you have a great day. Peace
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  • Posted

    This probably wont cheer you up Theresa but i always find that having the blandest but healthiest diet helps and drinking water or hot lemon with honey.  
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  • Posted

    Hi Theresa I use IB Guard the main ingredient is peppermint it is natural and safe taken before each meal you can purchase it over the counter and it works immediately
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  • Posted

    I was in the same place as you in March last year. Hospitalised as my tract was so inflamed that my body simply couldn't absorb oral meds. I needed steroids by IV to stabilise me. Key for me once home and back to oral steroids was to taper off them VERY,  VERY slowly. Many doctors, including my own specialist say to come down by 5mg a week but I know from past experience that when I get down to 15mg per day the symptoms can return. So now I subscribe to the advice (given here by someone else) that once down to that number you never taper by more than 10% of what you were taking the week before. So I will take 40mg, 35mg, 30mg, 25mg, 20mg then a week at 19mg, a week at 18mg, a week at 17mg and so on down to zero. You can get Prednisolone in 1mg tabs so make sure you get your prescription made up with 5s and 1s. It will take far longer to complete the taper but allows the adrenal glands much longer to adjust to functioning normally again so it helps too with the terrible fatigue that can accompany steroid withdrawal.  I assume you are also taking a 5ASA (Asacol, Pentasa, Octasa or similar) in tandem with the steroids and ongoing once a flare has past to keep inflammation at bay.

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  • Posted

    Can I ask have you touched antihistamines while in a flare, I’d like you to read my posts. You can risk it , but just to cover my back I’d like you to speak to your doctor, reply if you can’t find it I’ll explain on here.
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  • Posted

    Sorry to jump onto your thread, but I am in a very similar position myself....flare up started in March time and have been. Unable get it under control, at least weekly calls with the ibd specialist nurses, using a range of treatments from increased colazide, clipper,  oral steroids, steroid enemas, I was off work for 8 weeks and about to go into my fourth week of phased return, on a reduced dose of steroids to 10mg and bam, feel like I’m back to square one!!!! Fortunately I already had an appt with the ibd specialist nurse and she’s convinced me to try azathioprine, which I can’t say I’m really keen on for numerous reasons but I guess I have to give it s go. This flare up is also affecting my mental health. 

    I’m 34 and I don’t really want to take all these meds! 

    Can anyone offer any advice/support please. Thank you. 

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    • Posted

      I was prescribed Azathioprine but I had to stop taking them because of the side effects. I think the only solution is surgery. My health has been permanently damaged by steroids and I had only had uc for four years. I am now having vendulizamab infusions but am very worried about the side effects
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