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Last Chance!

Hello All!!
I am a 26 y/o mom of two wonderful girls, Wife, Full Time Nursing Student, and Full time Tech at University of Kentucky Hospital.
I got diagnosed in 2007, 6 months after the birth of my oldest. During this 3 YEAR FLARE, I tried Asacol, Pentasa, Flagyl, Remicadee, Humira, 6MP and the lovely Prednisone off and on for the entire 3 years. The first three didn't work, I did good on Remicadee for about 6 months, and then a few hours after my infursion I had a really bad reaction to it, so I couldn't take that anymore. Humira- I had really bad joint pains with ( which is sort of funny since it's a med also used for arthritis ). 6MP is what I was taking when I went into remission.
I've done really good, and I guess a remission of sorts ( never officially remission by a Dr or anything, but doing really good )
Now as of about 3 months ago or so, BAD. I haven't had ONE solid BM in two frigging months. Literally not one. I feel exhausted all the time (which really sucks since i'm also a night shifter) I am having stop-you-in-your-tracks pain where I cannot even stand straight no matter what I eat. I am eating only carbs and soups pretty much, and having pains like this. I'm going up to 15x day.
So I went to my GI 2 months ago, and the earliest she could get me in for an upper GI & colonoscopy was yesterday, and in the meantime started me on 40mg of Prednisone (UGH!) All the prednisone did was get rid of the mouth ulcers, that's it, Which I knew I was going to get bad news with that alone.
My results:
Upper GI: Hiatal Hernia, and redness throughout
Colonoscopy: redness throughout, terminal ileum Severely diseased,(she rated it as a 10, on a 1-10 scale), and polyps in my colon(she removed)
She called me today, and said we can do a resection, or give one more "college try" as she said and try combo therapy of 6MP/Cimzia combo, if that doesn't work, we do surgery.
I really don't know what I want to do. I surely don't want to get cut open, but I know that it could possibly put me back into remission, but I know that also- when they start cutting, it does keep on going to other areas, and if we start when i'm only 26...just doesn't sound very hopeful of me having a lot to work with when I'm 50.
On the other hand, I know 6MP takes 3 months to start working, and I don't know what my life will look like in 3 months if I keep going downhill as fast as I am. Maybe Cimzia starts sooner that that? I don't know much about it? I also know both medications are bad on your liver, that doesn't sound good either to take TWO medications that damage it?
Another thing that is worrysome- The poyps in my colon. My grandma & my dad both had colon cancer, she passed away from it. She was 60 & he was 42. I know my chance of getting colon cancer is also increased even more by having Crohn's, is it bad that there are already things popping up in there?

Sorry this is so long, just stressed to the max, and in pain :(
What do you guys think of all this? What would you do?
 
LoveArt - sounds like you are having a really tough time of things. I'm glad to hear you've got a doctor involved who's trying to get to the bottom of things for you. When you say you only eat carbs and soups - what kinds of carbs are you eating? I'd recommend perhaps avoiding anything gluten- or diary-based for a few days and see if that helps. Those two things can be very irritating to the GI tract, especially during a flare. That being said, there are people on this forum who've had resections without recurrence in another area. Each person is different and the tough thing about auto immune diseases is that they are so unpredictable.

In reference to your polyps - I've had one precancerous polyp myself, and so have my mom and my sister. You'll need to have more frequent colonoscopies to monitor for more, but the good news is, once the polyp is out, that particular incidence won't get any worse. The more frequent scopes will monitor for any new growth and remove as necessary.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the community. My concern with the resection route is that you're so inflamed through your entire digestive tract. Did she say if there was severe stricturing where you NEEDED surgery?

How about 6MP, Cimzia, and enteral nutrition or parental nutrition? It sounds to me like you're so inflamed that throwing that additional dietary treatment option in might be worthwhile. Have you ever tried it?

All my best to you.
 
I have been eating breads, rice, noodles, cheese sticks, yogurt, noodle soups, plain chicken, crackers & Peanut butter. I really can't tolerate anything else, those foods even cause me pain going down ( and come back up too half the time )
I was actually thinking about asking my GI about TPN or something like that. I had to have TPN during my last pregnancy. It wasn't actually related to Crohn's. I had severe Hyperemesis, and could not keep down even water from about week 5-birth (32 weeks) I really think that is something that may help!!
She was talking about removing the part of the ileum that was really badly diseased only. Are you thinking that since the other areas are also inflamed, that surgery on that one part only wouldn't put me into remission?
I think trying medications would be my best bet, and like she said give it one last "college try", that way I know I did everything I could.
 

David

Co-Founder
Location
Naples, Florida
Yes, my feeling is that surgery of just the most diseased part of the ileum would not put you into remission based upon what you describe. But if that diseased part of the ileum is highly strictured like many people have, then you're going to need surgery sooner or later anyway. Either way, they're likely going to need to change up your medications and I think something like enteral nutrition or TPN in combination with those meds may be in your best interest. I'd also ask to have that hiatal hernia fixed as that's no doubt no helping things.
 
It might help to keep up with the rice and chicken, cutting out the gluten-based (noodles, breads, and crackers) and the dairy-based (cheese and yogurt) foods. See if that causes any improvement. IT sucks to be so limited during a flare, but at least if the pain and other symptoms decrease it can be worth the effort.
 
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