Its Amazing how quickly things can deteriorate and snowball

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Mar 4, 2009
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Long time no post. Abby has been my life and kept me away from other things. She is almost 1 year old. How the time flies.

Welp, things went from crummy to crappy to welp... where I am now.

Shortly New Years I started to feel a little run down, but nothing I was too worried about. That ballooned to a 101.5 fever and a visit to the doctor. My liver function tests were going up and my platelets were down. Several visits and blood tests later diagnosed me with mono. I have no idea how I got it, but okay... My GI pulled me off the 6-MP and Humira to let my body fight the mono and get better quicker. She is also working with infectious disease experts to determine when I should go back on my meds. Unfortunately, this past Tuesday my unmedicated Crohn's came back hard and required another visit to the doctor and an emergency CT. I had a partial bowel obstruction that luckily cleared with a clear liquid diet. Today I tried solids again, but with disastrous results. My doc now has my charts, scans, tests, etc in the hands of her surgeon for review. . While the meds did a good job supressing the Crohn's, it might be time to bite the bullet and surgically correct the mess that is my gut. A resection may be in order next week.

Hey.... I have some of the best doctors in the country and one of 22 NIH funded digestive disease practices on my side. Whatever happens, I am in good hands.

Dan
 
Sorry to hear of your worsening disease, Dan. Was the obstruction due to the fact that you temporarily came off your meds, or was this something that you knew had been building up for some time?

Dan, do you know yet how much bowel you could lose? I hope you get sorted quickly, damn this disease.

G.
 
Sorry to hear of your worsening disease, Dan. Was the obstruction due to the fact that you temporarily came off your meds, or was this something that you knew had been building up for some time?

Dan, do you know yet how much bowel you could lose? I hope you get sorted quickly, damn this disease.

G.

The obstruction was due to me being off my meds. The meds did a great job suppressing the the Crohn's, but a lousy job putting me back into remission and healing fistulas.

I'm not sure how much I will lose, or even if... I am supposed to meet the surgeon tomorrow to see what he thinks. The last time he looked at my charts and scans 2 years ago, he was ready to cut right then. But when he saw me, he saw how healthy I looked and changed his mind... My doc said on Friday that he would need to remove a "small amount" to fix the fistulas and diseased section.

Good news is that my friend who is an oncologist specializing in GI surgery knows the surgeon and fully endorses him.

Dan
 
Hi Dan -Nice to see you back but sorry it's under these circumstances!

Hope you start to feel better soon and you can get things squared away without a resection. But it sounds like you're in the best possible situation if you do end up with surgery.

Good luck!! - Amy
 
Welp... Surgery is definitely on. They are talking about a foot, but the doctor did not have a chance to see all of my MRIs and the recent CT before today's meeting. The big question is when... It all depends on the mono. They would prefer it to be gone before surgery. They will try laproscopic, but the fistulas might make it an open surgery.

Dan
 
They scheduled me for the 10th, but I let the charge nurse know that I wanted the weekend so I can celebrate my daughter's first birthday and spend time with my parents, who are coming from out of town. She understood and I am now scheduled on the 14th to have my guts rearranged.

Dan
 
Hey Dan - I'm a little new around here but ran across your post. I hope you get some relief and am glad you are going to enjoy your baby's birthday beforehand. I can't think of a better way to get ready!

Hugs,
 
bummer. But you always have to look on the bright side. The meds were doing their job for sure, but you obviously had a bad spot. Is it adjacent an existing resection site? Maybe with that section removed you will have less reliance on the meds for the next couple years?

Hope all goes well. It is nice to get those wrecked areas the heck out there so the good parts can get back to work :)
 
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Its possible that after the resection you should be able to be on less meds or at least at lower doses. No GI I've ever met is in favor of being completely off meds. Lack of meds only got me out of remission years before my resection.

You're getting about the same amount removed that I had done Dan. I wish you luck! It'll be good to not feel sick and you'll be able to spend more quality time with your daughter. :)
 
Its possible that after the resection you should be able to be on less meds or at least at lower doses. No GI I've ever met is in favor of being completely off meds. Lack of meds only got me out of remission years before my resection.

You're getting about the same amount removed that I had done Dan. I wish you luck! It'll be good to not feel sick and you'll be able to spend more quality time with your daughter. :)

I think my GI's plan is for me to stay on 6-MP and Humira long term after the surgery is done. They are pretty aggressive at Yale when it comes to treating Crohns.

This will be my first surgery, so hopefully it will make it easier on the doctors.

The crazy thing is I feel perfectly fine and normal on the liquid diet. If I went back on my meds, I am sure I could be relatively normal. But surgery is the best option right now to get me back to a "normal" state.

Dan
 

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