Just joined, dropping in to say hi and share my story

I found this site while researching Humira as my new GI wants me to start it right away.

I got diagnosed in 2008 right before I graduated from high school. My symptoms started about a year before I was diagnosed. I had occasional diarrhea and passed small amounts of blood but was in no pain so I couldn't convince my parents to take me to a doc. That changed when I developed an abscess. Went to a relative who was a colorectal surgeon he found that it was a fistula that had abscessed and I promptly had a fistulotomy. That never healed up and after about 5 months of trying different things to get it to heal he final decided to do a colonoscopy but didn't go into my terminal ileum and didn't find inflammation. So he referred me to a different colorectal surgeon but he couldn't see me for a month. During that month I had a kidney stone, passed a lot of blood, and started having more pain. Got told that it sounded like Crohn's and I needed to go to a GI. Got to my first GI and he ordered a Barium X-ray, blood tests, and another colonoscopy. All tests showed that I had Crohn's and I was put on Prednisone, Imuran, and pentasa. I absolutely hated Pred I got all of the side effects insomnia, moodiness, weight gain, moon face, (osteopenia any longer and it would have been osteoporosis) I swore I would never take Pred again, but it did get me into remission.

The next fall started my engineering degree and made it through ok, only times I had issues was when I was stressed out before a test and appendicitis my sophomore year. I was also an idiot at this time and stopped taking my meds. Graduated in 12 with my BS in Mechanical Engineering and finally got an engineering job in March.

Since then I think the stress of truly moving away from home and starting this new job combined with a horrible nasty cold that I took quite a bit Ibuprofen for, bad idea, has caused me to to flare. I have been having some of the worst cramps they top my appendicitis pain. And I have been passing blood and starting to live in the bathroom. My GI did a colonoscopy and came back and said that my Crohn's was very active. So he now wants to start me on Humira. He wrote me a prescription for Pred but I have been debating whether or not to get it filled, I probably should but I really don't want to go through all of the Pred crap again...

So that's my long winded novel. Next step is to get authorization from the insurance company for a drug that scares the crap out of me (not that I need any help getting the crap out)

Hi Matt:

My daughter is 20 and was diagnosed five years ago. She has taken pred in the past and has the same love-hate relationship that you have with it. She only takes it if her only two choices are (1) take pred or (2) go to the ER. She has been on a variety of meds over the years but decided to stop all meds in October of last year. Her GI is pushing Humira but she said no way. She's had ups and downs since stopping meds (Remicade) but she's working with a natural doctor who is helping her get the right combination of probiotics, vitamins and other supplements to control her symptoms.

If you ever need to talk, just post a note here or send me a pm.

Wishing you all the best!

Lisa

Welcome to the forum!

I'm sorry to hear what you're dealing with. It's very frustrating. I had similar experiences (I was also diagnosed in 2008, in the beginning of my junior year of high school, and had a very difficult time with Prednisone as well). Is your doctor aware of how hard Pred was on you the last time? If it was prescribed to you, you definitely need to either take it as directed or let your doctor know you're not going to. The more honest you are with them, the better they can treat you. I'd suggest you ask about alternatives - you could try enteral nutrition, which is an entirely liquid diet that's effective at reducing inflammation. You can read about that here.

You've probably already noticed that Ibuprofen is hard on the stomach. You can take Tylenol, though, as it's not an NSAID like most similar medications.

You can also read up on Humira in the Humira section of the treatment forum, here. A lot of forum members are on Humira and have had good experiences with it.

I hope things go well for you!