First "big" mtg with GI tomorrow, crohns dx

first "big" mtg with GI tomorrow, crohns dx

Hi there. Tomorrow I will visit my GI doc for the first appointment since a colonoscopy that revealed stricture and inflammation in my terminal ileum. I also have some perianal pain as well. I have been reading a ton online (probably a good way to freak myself out) about crohns, and yes, I am very scared of what lies ahead.

I am 41, I have 2 beautiful little girls and loving wife, and no past history with any health problems, or so I thought. My current situation involved getting more tired, more abdominal pain, and severe cramps everytime I had a meal. I knew I should go to the doctor for a long time before I did because I was afraid they would say I just had gas. Finally, I went, and the docs took me seriously and ordered a CT scan. A few days later, I went to the ER b/c it was getting worse. A few days later and I had a colonoscopy. And so here I am, with the GI saying to my PCP that he's 90% sure its crohns, but has to see the biopsy results.

So tomorrow, I go to see this doctor and find out what he thinks the treatment should be. I can see that it will likely involve a lot of strange medications, dietary changes, and maybe even surgeries. Its a bit overwhelming. Thanks for the advice from a few of you. I know I will take a look at the list of questions available on this forum. I will definitely post tomorrow after the big visit.

Thanks so much.

Adam

Hello Adam and welcome to the forum :bigwave: You have come to the right place to get really helpful information about the disease and treatments. There is also a lot of support here for when those tough times occur I hope the appt goes well today for you and that a treatment plan can be started quickly, pls let us know on how you get.

Wishing you well soon.

AB
xx

Hiya, Adam. I caught up with you in your other thread, but I wanted to wish you luck today and to encourage you. It can all be daunting. I hope you find this forum to be as helpful as I have. There are lots of great people here who can truly understand you and have been through the weird tests and strange symptoms you might not be ready to tell the rest of the world about.

Hey, Adam. I hope all goes well for you today.

Hi Adam and welcome to the forum! I'm so glad you joined

How did your appointment go?

That you have active disease in your terminal ileum and fatigue makes me think you may be deficient in vitamin B12. That's where it's absorbed and people with Crohn's Disease in their TI are commonly deficient. One possible symptoms is fatigue so I'd suggest asking your doctor to test for it.

Again, welcome

Hello all-

Just a followup. The Crohn's diagnosis is official. The doctor who seems know to what he's doing wanted me to start entecort, start humira (since ins. turned down remicade) soon, and see their nutitionist, who is great. The steroids aren't too bad, and my diarhea is already improving. Its strange, though. One day I'll have good energy and feel able to do a lot, and the next, I'll feel tired, achy, and have mild pain in my lower right side. I know I am just starting treatment, but I wonder- will this be the norm...good day...shitty day...etc.? I hope not.

I do feel like I am slowly getting used to the idea, or accepting, that I have this disease. In a way it does have its blessings (please don't throw a tomato at me) b/c I have quit smoking (I knew I could not have a surhery if I needed one without quitting) and somehow, I have to re-evaluate so many aspects of my life that the important ones, like time with my girls, is more clear & important to me. Don't get me wrong, I would trade the crohn's back in for my ignorance in a heartbeat.

Thanks for all the support and information.

-Adam

It sounds like your follow-up went well, in terms of getting all the details and understanding your doc. Good job!

I'm on Entocort currently and I noticed a definite period of time at the beginning where I was wondering how well it was working. After a week or so, I stopped wondering and started feeling better. I didn't notice an alternating pattern per se, but there were a few days I was hoping for better results. Those better days came quickly for me.

Great news, sorta. Bad for Crohn's, good that your doc is actively trying to help you. Most of the meds take time to work. I still have good days and bad days, but my bad days are far less often than they used to be. Mostly, they are because I ate something I shouldn't have. For example, I was low on Magnesium so they put me on supplements. Bad idea. Magnesium can cause diarrhea. It's a process of learning.oo:

Adam, glad to hear the appt. went well. You should start having more "good days" the longer you treat. I have had it since college, and have always worked full time, if that makes you feel any better about things. Frankly, just being in my 40's now, I have good days and bad days that just are, without the Crohn's, lol! You are taking it seriously and keeping informed, those are HUGE with Crohn's.