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Ulcerative Colitis
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Posted 11/28/2013 3:03 PM (GMT 0)
I still have circumferential ulcers with narrowing at 10 and 15 cm, and a pretty gnarly looking ulcerated pseudopolyp at 15 cm. Dr. was reading my history and found my first scope from 2011 showed inflammation from the cecum to hepatic flexure, so she wants to do a full colonoscopy and biopsy everywhere to make sure I have UC and not Crohn's. I don't think I do have Crohn's, but it would be a very nice thing to know before surgery. It would also open up a few Rx options.

My son is graduating in May, we have a trip booked in June, and he has an international competition in July. I have 16 vacation days and 6 sick days next year. My employer makes us eat our PTO before we take FMLA or short-term disability, so I need to make sure surgery happens after the July competition.

What can I do / take / try to delay surgery? I am mostly functional now (not anemic, getting through 40 hour work weeks, "hiking" on weekends), but I still have major urgency issues, minor bleeding, and the ulceration mentioned above just will not respond to medication.
Posted 11/28/2013 8:03 PM (GMT 0)
How often do you go? Have you asked what your GI thinks about delaying.... speaking of delaying you haven't mentioned the earliest it could be done. IMO if you believe you have last a little bit longer then go for it but always better to get everything done ASAP.
Posted 11/28/2013 9:39 PM (GMT 0)
I have one or two BMs in the morning, usually formed but thin, but every stupid bit of gas requires a bathroom trip. I have a blood/mucus accident maybe once a month. Very rarely have problems with diarrhea anymore - my inflammation is very persistent, but limited.

Earliest would be after the Holidays - since it is not an emergency. The results from the colonoscopy won't be back until the second week of December. I've not had a surgery consult yet, but I 'know' the surgeon she likes to work with.
Posted 11/28/2013 9:56 PM (GMT 0)
You know my answer.. identify the pathogens that are holding your intestine hostage. Especially since you have taken your immune sytem out of the equation and kill as many of them as your body can tolerate.

Sick people have different tolerance levels.

have you had any type of comprehensive stool test? I cant remember...
Posted 11/28/2013 10:45 PM (GMT 0)
Once your tests are confirmed that you indeed have UC then why delay surgery? If you had surgery in January or February you would be fully functional for your son's graduation in May, your June trip and the other event in July. You can hang on to the ileostomy (assuming you are going for a jpouch) for as long as you like then schedule the other steps. You would be UC free for all those upcoming events. Just food for thought. :)
Posted 11/28/2013 11:05 PM (GMT 0)
If I have the surgery first, I won't be able to do all of the other things because it will use my PTO for the year. The two trips take 11 of my 16 vacation days. I'd rather use my vacation for vacation than sitting in the hospital.
Posted 11/28/2013 11:55 PM (GMT 0)
Can you use short term disability instead of PTO? Is it legal for an employer to insist you use your PTO first? it doesn't seem fair. It's not like you' want to have major surgery.
Posted 11/29/2013 12:04 AM (GMT 0)
I have to be really honest, although I generally agree with Marianne that I think you ought to just get it over with, but I also have to say... you are in much better health and enjoying a much better QOL than a lot of people when they opt for surgery. Is your signature accurate that you're not even on steroids? I think the only thing you really need to do to "buy time" is eat a "safe" diet (whatever that means for you) and be patient. You might want to look into the low FODMAP diet and try reducing those foods specifically because they are the main culprits for gas production, and it sounds like excess gas is the main problem causing your QOL issues right now.

Are you in the US? My colectomy was elective (not emergency) and it was scheduled in literally five days -- my GI called the surgeon's office on a Friday, and I went into the OR the following Wednesday. She had to make the call on my behalf (the wait time that was quoted directly to me was four weeks, I think) but there is usually a way to get yourself moved up. No matter what you decide about the logistics you should have your consultation ASAP: it will get it out of the way and the surgeon may have good advice for you as well. Doing it now would make the holidays this year kind of a wash, but as Marianne said, you'll be UC free and can enjoy whatever stuff you want to do with your ileostomy next year, including all your PTO days!
Posted 11/29/2013 12:47 AM (GMT 0)
Yes, it is legal to take all PTO first before FMLA / short-term disability. They think it is a benefit to us, since we get full pay first before we get into partial or no pay days. My coworker took seven weeks worth of short-term disability for her Crohn's surgery two years ago. I've been talking to her about what she went through with HR. She said short-term disability was easier to deal with than FMLA.

I am just tapering steroid enemas. It took me over a year to get off of oral steroids. This is the first doctor who was able to get me off of prednisone. She wants off of enemas before my upcoming scope, so I am probably tapering faster than I really need to, but the prep and recovery will be rough next week anyway.

I did the FODMAP elimination diet this spring. I avoid onions and garlic especially. I did antibiotics for SIBO, but it did not seem to make a difference in functional symptoms. My gut is usually pretty happy with a low residue diet, but my mouth isn't :). Gas is my biggest annoyance, for sure!

I kind of don't want to do the recovery during DS's senior year, if that makes sense?

PK, I have not had a comprehensive stool test. I'm pretty sure my IBD specialist is not 'into that'. Would my PCP be able to to order it and help me, or would I need to go see another doctor? What type?
Posted 11/29/2013 12:59 AM (GMT 0)
Then I think toughing it out makes sense. I think it's awesome that you are feeling well enough to plan to go on trips and keep working and stuff. I would still do the surgical consult ASAP though because these things can turn on a dime sometimes and you should be prepared to schedule in a hurry if things go downhill. Hopefully you can delay until it is convenient.
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