www.incontinentsupport.org

1,000 things have happened since I posted here last. Got a lot of stuff figured out with my Ostomy. I have set up appointments with doctors and I have a bunch of new stress in my life.

My disability insurance company is going to do a reclassification audit in October; meaning that I have to get everything paperwork set in place for them.

The big issue is that they want documentation from all of my doctors and not just my PCP.

Well, that is somewhat of a problem because my Gastorenterolodist is not responding to messages from my medical case manager with the hospital to get seen. (Should have already been seen twice since my ostomy surgery but GI is too busy to see me) so I have an appointment with a physician's assistant and not my main GI doctor. My hope is that this PA will be able to get the stuff I need done set up. Dehydration is a big thing so I need to be set up to get IV infusions to keep that handled. I also have to get paperwork, follow-up appointments, and any other test/blood work set up because, again, should have been seen to address my nutrition and other things twice already.

My case manager is very upset with GI and next month when I go in I am going with the assumption of asking to speak to the head of the GI department about the issue and not taking no for an answer.

Too many tests and labs were put off since I had this surgery to let this go.

I had a very long conversation with my parents about what needs/should happen next. My dad talked to my surgeon post-surgery so was aware that this last surgery would likely not fix enough and I would need more stuff done. One thing that my dad said that I thought only I was told was the possibility of a long hospital stay after the next surgery that I will need. It will also mean I will likely need other things for the rest of my life.

There is a big choice to make about things.

Right now paperwork is a huge thing. My PCP is not an issue but GI will be. I am hopeful that everything works out and that my insurance sees that this last surgery was just the start.


Also when talking to my parents I let them know that I want whatever is going to have to be done to happen ASAP as my life sucks right now with all the spasms being back. (I always feel like I have to have a BM but as I have an ileostomy there is nothing there to push out but the spasms make me push)

It sucks on an epic level because the next surgery will be to take out my whole bowel which will have lifelong side effects. Right now my ileostomy could be undone but once this next surgery is done there is no turning back.

I have started making a list for my doctors as well as day-to-day logs so they have an understanding of how things really are.

I just want this all over with so I can get to whatever my life is going to be.

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Focus of what is important
Capture the good times
Develop from the negatives
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Praying for you! To have annoyances on top of very serious choices to make is not fair to you and I am so sorry you are going through that.

What options are available to you if you don’t remove your bowel?

Thank you for bringing us up to date. Feel free to vent as much as you need to; the crisis you are enduring promises to make that necessary.

Sadly nothing. I had no improvement with everything else we tried so there is no point in re-trying it. Also because I still have my bowel it still makes mucus which is used for natural lubricant but because I have pelvic floor nerve damage it either just leaks out, or when my muscles spasm then it builds up into a lump that is very hard to pass. It also hurts a lot when that happens.

Most days the spasms feel like I need to pass a basketball-size BM but I do not have anything to pass.


So in September when I see my surgeon it will be to get the paperwork done and set up the next surgery. The doctor already knew that it was very likely that this would be needed but hoped that my muscle would relax once they were not needed.

_________________
Life is like a camera
Focus of what is important
Capture the good times
Develop from the negatives
Take another shot!

Hi, 'FLGuy. I'm so sorry that you have had a horrific medical journey. I have a history of bowel problems as well - a couple of surgeries over the last few years - but nothing like you've been through. It appears that your parents have gotten on board with your needs. As I recall, they were not very supportive in the early days of your issues. I'm happy to learn that appears to have resolved. I hope all goes well w/your continuing treatment, that your condition stabilizes to a liveable quality of life, and that the medical documentation proves satisfactory to your insurance carrier so that you can be relieved of the financial anxiety as well. Best wishes for a satisfactory outcome overall.