New to this and scared...

new to this and scared...

Not only am I new to this forum but new to dealing with crohns which was diagnosed april 1,2011....which is NOT a good april fools joke if you ask me! I am actually happy that it was diagnosed though so my doctors know what to treat because for the past 5ish years, since my appendectomy, I have had loose bowel movements on average 5 times a day sometimes more and had no idea what was going on. A couple years later after a year into my college career and missing many classes due to uncomfort, loud noises, and the urge to go, I had to ask my doctor at the time to figure out why!? well she didnt do much other than check for parasites and just diagnosed me with IBS. The next few years I had just used psyllium fiber to try and control my symptoms the best i could. After graduating with a BS and having to re evaluate my future plans as far as a career because of the disruptions my symptoms had with my schooling (im not usually a bad student...I was a B student) and having to lose friends because I wasnt comfortable going out and rushing to the bathroom, I decided to go see a GE because things just ARENT NORMAL! Finally after a barium small bowel series and upper endoscopy which were both normal other than rapid transit time I was given a colonscopy on april 1, 2011. My GE said there was ulcers, inflammation, and "cobblestoning" throughout my entire colon which from his experience is characteristics of crohns. I had a blood test to confirm this diagnosis and it came back "on the fence" of ulcerative colitis and crohns but my GE thinks its just crohns. I am currently on apriso and was just on 2 months of entocort...I thought I was going into remission (not there yet) but when I went off the steroid it went straight back to how I was before my colonscopy...thats where I am now...lost and scared but hopeful for remission, someday. I am probably going to put on prednisone which I dont want because of the horrible side effects I heard about and the relapse after tapered, but I am really interested in the helminthic therapy! So hopefully Ill be able to figure out whats best soon! I need my life back!!

Hey there. Sorry to hear about your diagnosis, but like you say, it's good to know what's wrong and have a management plan to get into remission. I know you're a bit disappointed with your results, but I think you've done very well considering you were battling the disease.
Glad you found your way here. Being with my forum friends and tapping in to their wealth of knowledge and experience has taken a lot of the fear away for me

Hi Court and welcome! If you do go with helminthic therapy, please update us often! Is it even approved in the US? If not, do you have a plan on how to get and administer it? Is your GI on board? Sorry for all the questions, it's just a rare course to take but an intriguing one never the less!! Good luck!

Grumbletum (love the name ha ) i hope to gain friends and other to talk to about crohns because I dont know anyone with crohns and have lost many friends...my parents thought i was just making things up!!

Dexky- i dont mind questions! Helminthic therapy is not approved in the US, my brother saw something on tv about it and his friend is going to canada to get some worms to help with his allergies...I have done a lot of research on the little wormies and have read many success stories and a handful of clinical trials with a high rate of people going into remission. My plan is to try prednisone first (my doc said would be next since entocort didnt do the job) then if pred doesnt work Ill try the worms....I mentioned something to my doc but havent said I wanted to go that route yet but I have a feeling he wont be on board....

Let us know how you get on Court!!

Welcome, Court! I have heard many people have started to flare as soon as they stop pred or entocort. I am sorry you had to experience this. To avoid this in the future, be sure your doctor doesn't step you down too quickly. I hope you have success the next time around. Good luck!