May check in thread - what's on your mind?

[bcv513]

You're so sweet carrotsmakemefat. I'm glad you're feeling better.

I'm feeling much better after my freakout earlier in the week. I'm chalking it up to just a bad day. I've been fine ever since. I'm a little nervous about coming off the steroids, but I'll deal with that when it happens.

I'm so excited about my wedding! It's June 1st and I think it's going to be really nice. We have a great DJ and got a photo booth, so hopefully people will have fun. Then the next day we leave for Hawaii! I feel like now that I feel better, I can finally get excited. Before it was mostly worrying about going to the bathroom on a plane or while wearing my wedding dress.

[aimeedyan]

-My latest bloodwork wasn't great but I am not surprised; my symptoms have ramped up recently.

-I'm seeing my new GI for the second time next week. I wasn't overly impressed my first visit but am giving him another try. He wants to see me due to bloodwork so I figure it's a good opportunity to give him another shot. I really just want my old GI, back in Texas, so I'm trying to lower my standards a bit If we don't click this time, I'm going to go hunt for another one.

-I'm going to reschedule my bone density test when I see the GI. We had one scheduled in the fall but my ortho surgeon urged me to wait until I was back to normal functions again in order to get an accurate reading. I badly (BADLY) broke my leg last summer and the GI immediately wanted to check bone density due to deficiencies thanks to this damn disease. Fun never ends, right? My break was so bad, and the recovery has been so bad, that I need to make sure we do everything we can to avoid another bone snapping like that. Has anyone else had history with bone issues? Or done a bone density test?

- I need to get serious about losing weight and I'm overwhelmed. The only successful weight loss I've had was due to flares when I didn't eat for months on end. I suck at self control Sometimes I wish I were a Crohnnie that had issues keeping on weight and I know that's awful. I have D all the time yet am still fat. I've gained a lot of weight since my resection 3 years ago (which gave me full access to food again). And this is really the first time I've admitted publicly that I need to change things...

My work is ramping up for summer which always means I have issues due to the stress, activity, and lack of sleep. Hoping to get through the summer without my old friend Prednisone!

[OrangePixyStix]

Carrots, glad you are feeling better.  I always have to hound my doc about blood test results, she never calls me when she gets them in and leaves it up to me to ask about them.  I hate that!

bcv, glad you are feeling better as well!  I wish I had done a photobooth at my wedding, those are so much fun!

aimee, that really stinks about the broken leg, I hope it's not giving you any more trouble so you can start getting some exercise in to help you with the weight loss.   I've never had a bone density test but I've only been diagnosed just over a year, so I guess it hasn't been a big concern thus far.  I hate to hear that it could also cause bone issues, with all the other junk we already have to worry about.


My updates:   feeling good at the moment, have my 5th Remicade infusion at the end of the month on the 24th.   Other than that, there's not much I can add.   Just same old, same old for me.

[Deleted]

I'm struggling.

I picked a new GI office to try, but I can't seem to pick up the phone and call them. Every day I tell myself that today is the day, but then I just get so anxious and overwhelmed about it all that I put it off until it's too late and the office is closed. I really need to start seeing a therapist but that involved finding a new PCP, which is also completely overwhelming and terrifying me. I'm so tired of doctors and not getting answers and being looked at like I'm crazy. At my first appointment with her, my new PCP told me that I look too healthy and act too normal to be as sick as I say I am. I don't know if I can hear that again from someone else so soon. I have a new thought about what might be going on (A GI mentioned it to me as a possibility in the past, but we didn't move forward with testing due to a food intolerance, which it looks like may be able to be worked around now), but now I'm afraid to bring it up to any doctor I see, because I keep replaying her laughing at me and asking if I've been consulting "Dr. Google."

I am so done with doctors. But H and I are seriously considering TTC this summer or fall, and I know that I need to figure out how to get things more under control, diagnosis or not, before that can happen. I feel so guilty that I'm holding us back from starting a family.

[Deleted]

I feel great. I've had enough energy to work out every day and I haven't had a single bite of gluten since March 17. I actually can feel my triceps and biceps and I'm wearing size 4 pants (I was an 8 before surgery).

I am healthier and stronger than I've ever been as an adult (daily symptoms started when I was 16) and I just want it to stay that way. Still waiting to start the Remicade because of insurance issues, but I expect that to clear up by the end of the week/beginning of next week.

aimeedyan I've never had a bone density scan, but x-rays reveal bone loss in my mandible (lower jaw) that is more pronounced than we'd expect from impacted wisdom teeth.

[OrangePixyStix]

How's everyone doing this week? Any changes for the better or worse?


I've got Remicade in 2 weeks, and hoping I am 100% by then. I seem to have picked up a cold and have the itchy throat and nose sniffles. Hopefully it will flush out quick so they don't delay my treatment.

I went to buy my normal probiotic drink the other day and they were out of the regular Yakult so I got the Yakult Light since it was all they had in stock at that store. I guess it must be the different type of sweetener in it, but the Light upsets my stomach right after drinking it and the regular doesn't seem to do that. So weird!

[Deleted]

STILL waiting for my insurance to approve Remicade. mailed some paperwork to them last week.

bad news is that a liver enzyme is elevated since starting imuran; we have to monitor this very closely and will have to stop treatment if they're still elevated next week.

[bcv513]

May 9, 2013 16:13:17 GMT -5 tacom said:

STILL waiting for my insurance to approve Remicade. mailed some paperwork to them last week.

bad news is that a liver enzyme is elevated since starting imuran; we have to monitor this very closely and will have to stop treatment if they're still elevated next week.

Oh no that's awful!! I really hope your liver stays okay. Fingers crossed for you

[Deleted]

thank you. I hope so too. poor liver! lol

[Deleted]

I still haven't made any phone calls. :/