I am extremely grateful to have found this site—I am from a small town the support for Crohn's here is nearly non-existent.
My story is similar to a lot of yours. I have had symptoms for years and was actually scolded, for lack of a better word, by my family doctor for not coming to see him sooner. It took getting the flu and finally going to the doctor about it after being sick for two weeks to start my diagnosis.
I was first diagnosed with IBS in January of 2007 and told that it was just flaring up due to the flu. I was given Librax for the IBS 2X’s a day and went from Zantac to Prilocec for my acid reflex. I literally suffered until December of 2007 with the flare up to the point where I didn’t leave the house. My dad took my son to school, would stop at the store for me etc… I did manage to get to work, yet would miss about three days a mouth with uncontrollable diarrhea, cramps, nausea, etc… My family doctor started testing my gallbladder (ultrasound) and did an upper GI to diagnose my acid reflex.
After the bloody diarrhea became persistent I was FINALLY referred to a GI doctor. He thought it was Crohn’s based on the initial visit and ordered a small bowel x-ray, MRI with barium enema and a colonoscopy. He was not 100% sure which it was and passed my case to my current GI doctor (my first Dr. just retired) where after a few more months of blood tests, Hida Scan and getting my gallbladder removed he diagnosed Crohn’s.
So…here I am trying to figure this disease out and how to live my life. I am starting to decline my Endocort from 6mg a day to just 3 mg a day and am taking 400mg of Acacol 3 tablets 2X’s a day. I just finished iron therapy due to my iron count being back to normal for two months.
Hi there, LMills is right on. Lots of people confuse how you look on the outside and presume you are not all that sick on the inside. Some Dr.'s do too. I have had some say " well you look good , can't be so bad" Ha! Alot of times i make myself get up and get dressed just so my kids don't see me as "always sick"
Anyway, a low residue diet seems to be the common thread beteen most cd patients. Just try new things when you feel well and if they agree ok, if not- don't eat them. Not much help but everyone is so different. I have recently gon gluten free, and can't believe how much better i feel. I wish i had the disipline to do the SCD but i don't so i just do what i can.
Probably the best advice i ever got was if you feel tired- rest, don't push yourself- you'll pay in the end. Good luck to you, hope you feel better soon.
Thank you all for your thoughts and the warm welcome.
I believe that most are simply ignorant about this disease and like a lot of you have said just don’t see how “yuck” we feel on the inside. My family very female dominated and we are expected to do get though the day no matter what, which has helped me tremendously as far as getting though my days. I have established over the last about 5 years “down time” with my kids. We are in the house and getting around for the next day by 7 or so. We will finish up odds and ends for the next day, go though what we are going to do the next day, lay in bed for reading and then go to bed.
I actually find it easier to admit that I am tired or having a bad stomach day since I have been diagnosed. It has actually been liberating to realize it is not all in my head.
I recently didn’t go to my cousin’s birthday party because it was a 40-minute car ride and I just was tired. I thought about taking some Imodium and just going, however I thought better of it because it was a Sunday and the week before school started for my kids. I knew the next week was going to be full of open houses, running to the store in the evenings to pick up extra school supplies, etc… Also, it was the week the college students came back to campus and working in the Registrars’ office means being on my feet a lot that week at work. My family didn’t say anything about this and my folks took my kids, so it all worked out.
I am declining the Endocort and have more pain across my mid-section at the one-week mark. I am going to tough it out a few more days to make sure it is just withdraw from the medication. I have been on it since January, so I have to believe some withdraw is normal.
35/f proud single mom of 2
Diagnosed with GERD/Acid Reflex 2002
Diagnosed with IBS 2007
Diagnosed with UC, then Crohn’s 2008