Adventures in Crohn's disease..my trip to Chicago

Hi everyone!
I've been in Chicago since last Friday. We went there for my nephew's wedding and I also scheduled an appointment with Dr. Rubin at U of C. The past few months I've been struggling with pain at my anastamosis site, gas, and periodic "poop-a-thons." While we were driving there my side was hurting so bad that I kept making my husband stop the car so I could walk around. (6 hour car drive) By the time I got there I was very sick and started having very bad D. I made it through the wedding not feeling great...I got to know the hotel bathrooms very well! Anyway, by the time I got to Dr. Rubin on Monday, I was very sick. The last time I was there, he had to hospitalize me and I ended out needing a resection. So it was a bit embarrassing to come back very sick again...I think he believes my home doc is incompetent, but it really wasn't all his fault this time!

Anyway, it turns out I tested positive for the evil c.difficile again!! He put me on Vancomycin for a whole month! Last time, with my doc at home, I only took it for 10 days. Scifi...since you are our c.diff expert (others chime in too) is this normal? Luckily, I have great insurance, so I only had a $10 co-pay, but the actual cost was $3500.00!!!! He also ordered a fecal calprotectin test (my first one). I will get those results in about a week. Anyway, he suspects I might have scar tissue or adhesions around the surgery site, and he said he can fix that with a balloon during a colonoscopy. If the fecal cal test comes back with high inflammation, he may want a colonoscopy as soon as I get past the c.diff. He wants to take over my care completely for awhile because he believes my local GI keeps mis-managing my care. I know he's probably right, but it is going to be really uncomfortable for me to tell my local doc. (Kazbern....I can imagine you rolling your eyes right now)

Anyway, it's been quite the exhausting "vacation." I really am getting sick and tired of my very uncooperative body. But of course at the wedding, I got to hear how "fabulous" I looked as I continue to lose more and more weight. Sheesh!

Hope the vanco helps and you get to feeling better soon!!

Thanks everyone. Ides, I'm glad your mom is ok now..that sounds scary! I guess a month of the Vanco isn't that out of range then. Thanks for the info.

Hi NCOT,
I'm glad to hear that you are getting the MRI and flex sig, but sorry you have to wait another month. Don't let them forget to schedule it! Nag if you don't hear from them. How are you feeling these days??

NCOT...does it feel like adhesions? I think I'm going to let Dr. Rubin do the next colonoscopy even though it is a pain in the ass (pun intended) to travel so far. I do think he knows more what he is doing. I hope I don't insult my GI too badly...he really is such a kind guy, but rarely ends out actually helping me. Anyway, hang in there....I can only imagine how frustrating this all is for you!

Thanks Erin!
I have an appointment with my local GI on Monday, and I have decided to tell him that I want the Chicago doc to manage my care until I am more stable. It will give me the impetus to visit my 87 yr old dad more often in Chicago! How are you doing??

gumby44 said...
NCOT...does it feel like adhesions? I think I'm going to let Dr. Rubin do the next colonoscopy even though it is a pain in the ass (pun intended) to travel so far. I do think he knows more what he is doing. I hope I don't insult my GI too badly...he really is such a kind guy, but rarely ends out actually helping me. Anyway, hang in there....I can only imagine how frustrating this all is for you!

I don't know what adhesions feel like... :-/

Nah, you didn't insult your GI. Tbh, I feel exactly the same way about my GP. Lovely man, but doesn't always seem to know what he's doing... My GI just feels like a more competent doctor in general and obviously a far better Crohn's doctor. But I haven't seen him for a year. God knows when I'll next see him again. I'm probably taking it too personally, but I just find it a bit depressing he can't even see me twice a year for a routine checkup, especially after all I have been through.

Good luck with Dr Rubin, gumby. He sounds competent, so I think you are doing the right thing in transferring your care wholly over to him. Crohn's is quite a complex disease and too many docs don't really know how to handle it.

NCOT...can't you request to see your GI?? The NHS at least doesn't leave poor people dying at the side of the road like we do in the US, but it does seem screwed up! Is there any way you can call and request to see him??

Erin, (Habs)
Grief takes forever it seems. Try to be kind to yourself, and you have every right to complain! My mom died of lung cancer that metastasized to her brain 3 yrs ago. I know it's not the same as losing a sister, and you hardly had any time at all with her, but I do understand at least a little bit of what you may be going through. I'm glad you are going to seminars and the Crohn's support group too, and I hope that you will be feeling a little better as time goes on. And don't be a stranger here, unless it is better for you to take a break. I'll look out for your posts. Much love, your buddy Gumby.

I'm sorry to hear that you have cdiff again, but I am glad to hear you have a doctor who is going to get you through it and not fob you off with IBS or bacterial overgrowth with no testing.

My husband was on vancomycin and honestly he did better on vancomycin than on flagyl. Be sure to do florastor, and maybe like husband you should just stay on the florastor to prevent recurrence - that is what my husband ended up doing, and so far, knock on wood, he's been cdiff free for over 4 years.

At least you know what's up. I hope the Crohn's is and stays quiet and once you are past cdiff, you'll be able to enjoy some good health and cheer for the holiday season.

You are in good hands with Dr. R. He is wise and caring. Our doc too. I follow him on Twitter for updates and to find out where his teaching travels lead him. Getting in is not easy now a days, but his nurse and support staff are very good. Loving the new hospital too. Will be revisiting it Dec 5th, when my daughter has her 2nd surgery. He works well with other docs too, as we have been with 3 other GI's while in college(his peers haven't been jealous or outwardly green with envy, as he is known as one the the smartest,hardest working GI's in the biz). He does like to control the sequencing and testing before advising, so it is best to get as much done at U of C as possible.

I think you'll always get the worst stories on an internet forum, gumby. I've said this several times before, but it really is true; back in the old days when my disease was mild, it never crossed my mind to join a Crohn's forum. I don't think we really have any idea of how the vast majority (who don't post on forums) are doing.

For me though, I've given up hope of being "normal" again, physically or mentally. Been through too much. But hopefully there's still hope for you.