• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New to forum

Hi! My name is Jen. I just signed up for this forum. I have suffered from crohn's disease now since 2005. I was just recently hospitalized for 15 days of hell. I had to have a picc line and was fed through it because my body and organs were shutting down from lack of nutrition. I had lost 30lbs. With the tpn I was able to gain 10lbs but after it was removed I lose weight when I eat solid foods. I just started renovate on top of my daily meds. Which was crazy because they couldn't start the treatments in the hospital because insurance wouldn't allow it. I had to wait until I was discharged before I could go to outpatient and receive treatment. I have had 1 treatment so far but only felt good the day I had it. I was hoping it would last longer then that? I have my next treatment Monday and can't wait because I am still experiencing a lot of D and pains when I eat. I am very frustrated because I have been on prednisone now for 7weeks also and still can't eat solids besides crackers. The prednisone has me a complete mess. I am so moody, anxious, shaky and can't sleep. Is there any suggestions to these awful side effects to prednisone?
 

Angrybird

Moderator
Location
Hertfordshire
Hello Jen and welcome to the forum, I am sorry to hear that you are struggling with the pred, on my last go round with it I also had problems with moods and sleep :( There are a couple of alternatives that do spring to mind especially as you are still also having symptoms, one is Budesonide which is also a steroid that is less 'invasive' on the system and some people do better on this than the pred. The other is something like enteral nutrition which is nearly like what you have already been on and as you have already seen this can help with weight gain and also with settling the tum without the side effects.

With regards to the other med you have now been started on can you confirm the name as I have not heard of this - could it be you meant Remicade at all?

Am glad you have decided to join, there is a lot of helpful info and support here for you.

AB
xx
 
Yes Remicade is what I just started. My auto correct loves to change it! I am currently getting my second transfusion right now. Last night was hell up all night between the bathroom and prednisone keeping me awake. I'm just very frustrated with nothing helping.
 

Angrybird

Moderator
Location
Hertfordshire
Gotta love auto correct, I have received some pretty weird txts thanks to that. With regards to the Remi some here noticed a difference near enough straight away but for others it did take a little while longer - I think how unsettled the tum is can play a part here. Definetly check out the sub forum we have for this and especially the club thread as you will get a good idea of others experiences with it: http://www.crohnsforum.com/forumdisplay.php?f=58.

Were you able to see your doc/a GI nurse today to discuss the issues you are having with the Pred?

AB
xx
 
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