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Posted 5/10/2012 1:06 PM (GMT 0)
Today I see the ostomy nurse because of this mess of skin I have under my wafer.  This is all getting old now.  I have literally kept trading one problem for another since I had my surgery in November, and it is really getting me down physically and emotionally.  Right now I have a hernia on one side of my stoma, and a steroid-caused gully on the other side, due to muscle atrophy.  There is literally nothing on the left side of my stoma but a layer of skin with a map of capillaries underneath.  The muscle is not there.  The surgeon's plan is to move everything to the other side in an effort to repair the hernia and shorten my very long stoma, without having to worry about sewing it back in its original, paper-thin spot.   

When I went to see the surgeon in mid-April, we scheduled my surgery for early-mid July, but that is because I wanted to finish out the school year and we have a planned vacation the first week in July.  He would have done it right away otherwise. 

Now I am back pedaling on my decision to have it in July, and am strongly considering having it sooner.  First of all, I am completely run down and exhausted from this year, and pushing myself as hard as I did.  I don't have much more to give at this point.  Secondly, I am changing my appliance every single day again just to get to work each day.  Lastly, and to me, most importantly, if I do wait till summer I will be in the same boat again in the fall that I was in in January, when I returned to work.  I will be left with only about 6 weeks recovery time just in time to go back to school.  If I "put it to bed" now, I can hopefully start a new year fresh with all of this behind me.  Testing is over, all of the big stuff is over, the curriculum is mostly covered, and the only thing left are field trips, end-of-year matters, etc.

The big con for all of this are my remaining sick days, which are next to none.  In order for this to take place, a committee would have to meet to approve more days for me, which means the surgeon would have to write a note, etc.  I don't know if I am up for all of that either.  I like to keep a low profile, and this year has put me in the limelight enough already. 

Any thoughts out there??  I really value your opinions at this point, and since not too many people are aware of my full situation, it isn't easy to discuss with even friends.            

 

Posted 5/10/2012 1:11 PM (GMT 0)
i would opt for getting a note from your surgeon (which he will not mind doing), dealing with the committee and get more sick days and just do it now!!! why put yourself through more drama and misery??? fix yourself. fix yourself now. who knows what extra crap can happen between now and later. do you really want something else to possibly go wrong and have to deal with that on top of what is already an issue? no way jose. get it done asap and then recover and then go on vacation and enjoy some time before school without being in recovery mode!

do it now :-)
Posted 5/10/2012 1:12 PM (GMT 0)
the big con sounds like a lot less of a drama than the pros you listed!
Posted 5/10/2012 7:44 PM (GMT 0)
You've been so stressed since you had your surgery, and teaching is such a stressful and exhausting job, especially when you're not fully "on." So I think it makes a lot of sense to just go ahead with it. Hopefully this surgery will be a lot easier, but doesn't seem like you got enough recovery time after the first surgery (and from being sick before it). Seems good to give yourself the summer.

My take is that heavy pred use takes a long time to recover from.... even when the surface things seem better.... ditto for years of flaring.

Have you used up your family medical leave for the year? You are legally entitled to 12 weeks unpaid (you can take it for yourself too). Clearly better to be paid, but good to explore all backup options.

I understand that you're not comfortable w/drawing a lot of attention to yourself..... but your first responsibility is to your own health, and this is a responsible decision -- it will be better for your students, colleagues, and family if you really recover, not just keep dragging on indefinitely. Other people get to have working "original parts" digestive systems, you get some extra sick leave -- doubt anyone would be eager to trade. Illness does take us out of our comfort zones.... for better or worse....

Sorry it's so hard.... sounds awful having to deal w/the skin issues etc. Hope this surgery does the trick.
Posted 5/10/2012 9:41 PM (GMT 0)
Thanks for the replies. I met with the ostomy nurse today, and she switched my appliance to another brand and did the best she could to fix me up. She told me that there is not much she can do for the gully as I appear to be allergic to most of the items in her bag of tricks. Also, she can't put a finger on whether my skin issues are due to leakage, fungal, allergies or all of the above since there are too many factors in play.

She encouraged me to have the surgery ASAP to correct the hernia and gully. According to her, the best thing I can do is start fresh and hope for the best. They are all pretty confident that the PG won't return, and if it doesn't, all of this other stuff may resolve. The gully was apparently caused by a combo of the PG and the steroid injections.

So, there is a new, tentative surgery date for the end of May. Tonight I will email the union president and ask her about the sick bank and how to get the ball rolling for that. Being sick and all, I did something smart a few years back and paid a few sick days to enroll in a sick bank. It may just be golden this year. It will be paid leave if I am approved.
Posted 5/11/2012 8:11 AM (GMT 0)
Are you a candidate for a Jpouch or did they remove your rectum?

Would you consider getting a Kock pouch?

With as many skin problems as you've had, I'd be very nonplussed by the idea of keeping an ostomy.
Posted 5/11/2012 11:09 AM (GMT 0)
UC free, great that you have a plan, hope the sick bank works out. Also hope the new brand gives a bit of relief in the meantime.

I didn't realize you teach math. I do too! I mostly work w/college students who are planning to be elementary teachers. It's definitely less physically demanding to teach college than K-12 .... on the other hand, that enabled me to keep working about two years longer than I should have, given how sick I was....
Posted 5/12/2012 1:18 AM (GMT 0)
Theresa,

I am no longer a candidate for j-pouch, although I was. I chose not to go for the j-pouch and, based on the luck I've been having with the ileo, I believe I made the right choice. I would consider a Kock pouch as a last resort. I want to give this ileo thing one last ditch effort. I don't mind the idea of it, and I would still like to try. I think as long as the pyoderma doesn't come back I may actually have a shot at normalcy this time.

Blueglass,

I have taught math for 14 years and love it. It is a lot of work, but I wouldn't trade it for another subject area. I teach middle school, and although it is demanding, I believe it is worth it. Plus, I teach the best age group, in my opinion.

What helped me greatly when I was sick is that I am directly across from the restroom, and my neighbor is usually on an opposite schedule and could cover my class for the brief emergency. I can't believe the shape I had been in when I went to work. In the fall, when I was first hospitalized, there was a stool sample from me on the counter in the ER. It actually was just a cup of blood. My mom was there and took notice. She was appalled when she saw it because she never realized how bad off I really was. She was even more appalled when I told her that I had been going to work in that condition for a month's time. Once I hit the 20th time in the restroom one school day I thought it might be time to throw in the towel. Little did I know it would be for the last time.
Posted 5/12/2012 1:21 AM (GMT 0)
Today I took care of business and I am approved for the days, pending a note from the surgeon, which shouldn't be a problem. I have an appt with my GI on Mon to get all of the pre-op work done. I am nervous, but hopeful. At the very least I won't be dealing with the leaks. At most, I'll still be battling the fungal issue. I am still trying other appliances to see if allergies aren't the culprit. So far strike one on the supplies the ostomy nurse gave me yesterday. I was broken out in welts by nightfall. No question about that one.
Posted 5/12/2012 4:02 AM (GMT 0)
I'm just reading this post now... wow, you are dealing with a lot. I sincerely hope that this surgery will have a good outcome for you.

After my first surgery, Dr. S. told me that if I needed a note to give to my employer, he would gladly write one. I bet he will do the same for you, no problem, as you said. On a sort of lighter note... my takedown surgery is scheduled near the end of May, the 22nd- maybe we'll run into each other during hosptial stays.
Posted 5/12/2012 6:07 AM (GMT 0)
Have you tried Coloplast? It is the only brand I can use. Congrats on getting the extra sick days approved!
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