Post flare up

[browny68]

post flare up

hi im new on here. ive reciently out of hospital where i have had iv steroids im now at home. it was the worst flare up ive had in 16 years of having crohns. they marked the flare up as severe after a colonoscopy. i was at home ill for 5 weeks before being hospitalsed taking prednisolone.but they had no effect.the doctors want me to try ramicade but i wanted to have a month or so to recover before. the thing that is most worrying me now is the extreme tiredness and fatigue that i am experiencing some 10 days after returning home.has anyone experienced tiredness like this.

 

[kiny]

Have they checked your iron and B12 levels?

 

[browny68]

no ihavnt had any specific blood tests done. in hospital the doctor said pottasium levels were a bit low.

 

[kiny]

Meh, they honestly should have been testing for those things. Especially if you're going to get remicade, they often add B12 and glucose.

My experience of B12 and iron deficiency is lightheaded all the time, wake up feeling dizzy, bending down feeling dizzy, whole body feels tired, often light headaches.

 

[David]

Hi there and welcome to the forum, I'm really glad you joined It sounds like you've been through a lot lately, I'm sorry to hear that A few things:

1. If they knew your potassium levels they no doubt indirectly checked your iron levels so don't worry about that. However, it's always good to followup, get your actual levels, and start to keep track. Educate and empower yourself: take control of your disease.

2. I agree that it's a great idea to have your vitamin B12 levels tested. People with Crohn's Disease are commonly deficient and it can indeed lead to fatigue and much worse. Vitamin D and folate are two other common deficiencies.

3. If you're planning to get the Remicade, you may want to do it now rather than wait that month. It should help you recover whereas if you are in a severe flare, you may have trouble with that recovery without help.

Again, welcome. All my best to you.

 

[Angrybird]

Hello and welcome to the forum. I can only agree about getting those B12 levels checked and getting onto the Remi as really you need to be on treatment sooner rather than later. Can I just clarify that you have been sent home with some pred and it is not working? If so is you GI aware of this? There is another steroid (budesonide) that can be prescribed that may work better.....

I hope you can feel better soon, keep us updated on how you get on.

xxx

 

[browny68]

hi. i am reducing with prednisolone now . no it was prior to me going to hospital that steroids didnt do anything i had a rapid improvement after 6 days iv 400 mg per day.then back on pred remained ok. its the fatigue issues and tiredness that i have not experienced on this scale before.will ring gp tommorow to get blood tests done.
thanks.

 

[Angrybird]

Ah I see, thanks for confirming I would now definetly say though that it would be best to still be on the steroids when you start the Remi so there is some cross over so don't delay too long beings you are now tapering off them.