Life update.

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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.
 
Hey @ThatFLFuy;

I wanted to quote a part of your post that I resonated with on so many levels.

"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)"


----

In regards to this; when I have bad bladder spasmsv- that's exactly what it feels like. Sometimes there is nothing there to push; but the spasms make me push. Thus, I have incontinence episodes on really bad days due to my bladder continuously filling and discharging urine.

Im sorry you have to go through that with your bowels. I have IBS so I can relate to inconsistent bowel movements - sometimes painful; but I haven't leaked (thank God) in a very long time.

Are the spasms painful? I've found with my bladder on bad days - bladder spasms can be quite painful. I hate the feeling on feeling dependent on a diaper; but that's the feeling that spasms in general have created for myself anyway.

In regards to ostomy or illeostomy - I'm not familiar with the difference in regards to it - so I understand what a "J Pouch" or Ostomy bag is - but not familiar with the differences of what an illeostomy is.

Blessings In Christ,
Honeeecombs
 
All the best to you, FlGuy. Life sounds very challenging, but you sound like you know what you want and need. Hope everyone comes through for you
 
boasammy said:
All the best to you, FlGuy. Life sounds very challenging, but you sound like you know what you want and need. Hope everyone comes through for you

Hey @boasammy;

Long time no see; any life update yourself? Hope you've been well -

Blessings In Christ,
Honeeecombs
 
@Honeeecombs

I get both bladder and bowel spasms.

Yes, the spasms are painful. My bowel is like I need to pass a basketball but have nothing to give. With my bladder, it is all the time. ( I cannot ever feel when my bladder is full it so this happens all the time and causes a total void)

My ileostomy does involve an ostomy bag. How an ileostomy is different than a colostomy is that an ileostomy is pulling the small intestine out and creating a stoma where my bag attaches using a barrier (A big sticker that the bag clicks onto). I have to empty the bag a few times a day/night so sleep sucks and I still have something bowel-wise that I have to deal with. It can make a big mess when leaks happen or I have to get up and I am too tired.

The worst part is that my last surgery will be a walk in the park compared to this next one.

On top of all this, I had this last surgery with the hope of not needing the next one, but I am not getting that lucky.

I told my mom again today that I just want to get this next surgery over with because my quality of life went right back to suck-Ville.

And that Suck-vill may mean not getting to go to Florida again this year to see my siblings for Thanksgiving/Christmas.

So, Yea. I am in pain all the time. My back still hurts all the time because my stomach muscles do nothing to help hold me up. My bowel and bladder spasms suck. Yea I do not crap my diaper anymore but I do not feel that the Ostomy bag is better With how often I have to deal with it but the medication I was on before the Ostomy made me, well, not me and did not do the job anymore.

I just hope that everything gets done and doctors see how bad things are.
 
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