New to forum...not to Crohns

[rachel28star]

I've been pretty sick for just about four years now. Had three surgeries, the final one in October 2010 gave me the crohns diagnosis. Since then I have not worked (aug 2010) and have been trying different treatments: humira, prednisone, and currently remicade. This week I will receive my fourth infusion. Nothing has really worked. Felt pretty good the first few weeks on pred but it was all downhill from there. Family friends and my boyfriend really don't understand my disease. Many think I need to change my diet (which I have, many times) but I never really know if something's going to hurt me until after the fact. I'm in pain and nauseated all of the time but as people have said, crohns is an invisible disease. Just looking to see if there are people to talk to, commiserate, and celebrate good days with....I'm pretty sure even if you have crohns you don't understand it, let alone not having crohns.....

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear you are still having problems with symptoms. Have you noticed any improvement at all on the Remi? Are you still on the Pred or has this now stopped, what dosage of this seemed to work before the tum got unsettled again? Whilst you have tried different diets have you ever gone onto liquid only at all? I have seen mention here that enteral nutrition can really help with calming the tum down whilst still getting the required nutrients and calories into the system. After you have been on this a while you then very slowly introduce foods so you are better able to pick out problem foods.

Also if you don't mind me asking what surgeries did you have to have? Is the pain you still get now in a specific area or all over the abdomen? When was the last time any tests were done to see how things are looking inside?

There is a lot of helpful info and support here so please do have a good look around.

AB
xx

 

[David]

Hi Rachel and welcome to the community! I'm so sorry to hear you haven't been able to get in remission

Where specifically is the pain? And do you have any symptoms besides the pain and nausea?

All my best to you.