Anyone with crohn''s? how do you manage it?

[PinkTower]

Whitby,
I know your will have a wonderful trip. I hope you can get to a computer and let us hear from you. How long are you gone?
I saw your post last night, and I pulled some of my bloodwork, but I did not see that. I may have had the test and just not have seen the results.
Do I understand you correctly, that you do NOT take an autoimmune supressant? It sounds like you may have to start, huh?
I take one called Imuran, you might do some research. It was a bit ominous, I had to sign a release and have it witnessed to get the drug. I am confident it has given me my lifestyle back, as much as that is possible with Crohn''s. It enabled me to be weaned off the Pred. The Prednisone weakened the bones in my spine considerably, according to bone density tests. I am so grateful to be off of that drug.
I do take Pentasa, but that does nothing to ease the inflamation, at least for me. I guess it helps. At least it seems harmless, so I don''t intend to stop taking it to find out if it is helping me.
Anyway, I encourage you not to be resistant to the immune suppressants if your tests indicate you are starting to flare. It took me well over a year to get over the flare I had eighteen months ago.
_ pink

 

[whitby_2773]

hi pink

thank you so much for looking up your results - i really appreciated the effort.

re meds, as soon as my GI can decide whati have, i''ll be happy to go with whatever he suggests; i have a *lot* of faith in him. i had my gall bladder removed (eroneously, as it turned out) in australia about 13 years ago, and my GI here in NY thinks i now have type 3 sphincter of oddi. i''ve also had esophageal spasm for about 25 years, which is a huge pain. detangling all these threads to work out how to treat it going forwards is tough, and the likelihood is that i will have another capsule study in a while. altho i showed ulcers in my terminal ileum originally, i was clear at the second capsule study and the GI doesn''t want to medicate me for crohn''s when a large % of my stmptoms are coming from other things; sphincter of oddi, esophageal spasm, hiatal hernia, GERD and so on. so at this point he''s still trying to work out the best way forward for me. it''s all pretty exhausting, tho, and i''ll be pleased when he settles on a course of treatment.

i''m glad the meds you''re on have been helping you and that your life has stabilized. i hope things continue well for you. pls keep in touch re this as things progress and time passes.

and now i''m gonna go finish packing! i woke up this morning and said to tim "good morning. would you like to come visit the other side of the world with me today?" he said he would, so we''ll be off this afternoon.