now I'm being admitted to U of Chicago Hospital

Hi gang,
I had a very good appointment with Dr. Rubin, but my partial obstruction issues are not particularly resolving. They are going to admit me for more tests, but Dr. Rubin suspects that my issues are more related to scar tissue instead of inflammation. He is thinking I may be a better candidate for resection surgery instead of biologics. His theory is that I've probably had Crohn's for many years, and that what I call "IBS" has always been slow simmering Crohn's. (OK NCOT....you already suspected all this, I know) So, I'm waiting to be admitted. They did promise me a private room with an extra bed so my husband can actually stay with me. It's a very fancy state of the art hospital with a whole wing for just IBD patients. (a big change from my little rural town) But I grew up in Chicago, so it's not all that foreign for me. Dr. Rubin actually attended my neighboring high school. I won't know if they want to do surgery now or at another time until they complete testing. Sooo
1. I think I'm in the best place I could possibly be
2. I'm scared to death anyway.

I'll keep you informed!! Thanks for coming on my journey with me.

I'm glad to hear you're getting good attention Gumby.

I've had some limited interaction with Dr. Rubin at conferences where he is often a speaker. He seems very sharp. He wouldn't know me though, so don't ask if he knows "beave"!

I think you're in really good hands with him. Good luck and I hope they can really help you.

Post Edited (beave) : 5/14/2014 4:20:05 PM (GMT-6)

Best of luck to you Gumby! Keeping you in my prayers!

Thanks....somehow having all of you to write to takes the edge off the fear. I'll let you know what happens tomorrow after the tests. Thanks soo much for all your kind thoughts and support! The IBD wing was full, so I'm in a different room until they get an opening. It would be interesting to me to actually meet other Crohnnies in person....I know I have all of you, but still...

Good luck Gumby!

You are in my thoughts. Wishing you best of luck, Gumby

Hope it all works out for you and you feel better soon.

Wow!  This sounds like the best possible outcome for you.  Very happy that you are getting better care.  I know that the thought of surgery is frightening, but I must say I think having had my emergency resection in 1990 is what has given me so many years of remission.  You are inspiring me to move forward with more care if that makes you feel any better too ;-)

Keep us up to date!

Thanks to everyone for your support. Things haven't gone as smoothly as I had hoped. They didn't have a bed on the IBD unit and put me on a medical floor far away from the attending physicians, so I just had one GI resident,that is difficult to work with.(I'm too tired to even explain!) At any rate, they did a repeat SBFT and it is showing two severe strictures that are probably a combo of scar tissue and inflammation. Surgery is the recommendation but they don't know when the best surgeon will be available to do it, and since I can tolerate liquids, they don't see it as an emergency. So I am waiting to see if they can do surgery in the immediate future, or if they will schedule it later (3-4 weeks) in which case they will send me home and then re-admit for surgery later. (Which means driving 6 hours home and hoping I don't obstruct again in the meantime) They don't quite understand why I have trouble with even things like instant breakfast. So this is certainly not optimal....I don't know how I'm going to function on so few calories. I'm doing my best to advocate for myself, but the system is so challenging to navigate. I'll update as I go along. UGGGGGHHHH

Oh dear indeed :-/

Are both the strictures in the terminal ileum? (Just being purely nosy now.) It is possible to live on a liquid diet for a few weeks; I did it. Just stuck mostly to Fortisips, with soup and smoothies for variation. Calories weren't an issue; each bottle of Fortisip was 300 calories. As I don't think Fortisip is available in the US, you can substitute Ensure or something similar. If you are too scared to even drink liquids, then you need to let the hospital know this.

But hopefully it won't come to that; fingers crossed you can get surgery straight away.

Thanks ever so much for all of your support, and welcome to my roller coaster of a world! So now the only available surgeon at U of C is a general surgeon who specializes in bariatric surgery, not the IBD surgeon as they originally bragged about. So I have made arrangements for the best surgeon at home to do the surgery on Tuesday. That surgeon has trained at U of Michigan for med school and Mayo Clinic for his surgery fellowship and seems more qualified than what they are offering me here. I called my home GI at 8:00 PM last night, and he called the surgeon at home and made it happen. Dr. Rubin is talking with my GI at home and Dr. Rubin's team will help manage follow up and surveillance after surgery. It sounds like they do Flagyl for a few months after surgery and then in 6 months they do a follow up colonoscopy and fecal calprotectin tests on a regular basis to make sure the disease does not recur. They do not do the fecal calportectin at my home hospital, but apparently U of C does, so they can make that happen. So this has been an exhausting experience, but I do feel like I'm getting the best of both worlds...we can go home so my husband can go to work, and I'll still get the expert follow up of U of Chicago. Sooo let's just hope surgery goes well on Tuesday, and I'll keep you posted.
NCOT--the two strictures are very close together in my terminal/distal ileum. It sounds like it is about 9 inches of bowel that needs the resection. It's still pretty scary for me, but everyone seems to think this is my only logical option and it may buy me a long remission.

ITA with NCOT. Fingers crossed for you Gumby!