Total Colectomy with End Ileostomy May 27th, 2008
First, I apologize for my absence on the board lately, it was two fold. First, my computer developed a virus that almost knocked it out permanently (thank goodness I know a little about computers or it would have been a funeral for my laptop) and second this news really hit me hard so I sort of pulled back into my shell. When it rains, it pours.
Mom9mom, there was nothing wrong with your first post. Seeing how it could be a different circumstance helps me to see that there is positive in the way that this is being handled. Even though right now my situation seems bleak it could be worse. I have constant pain in the area so maybe that is why my surgeon wants to fix it. I am unable to stand upright since it causes that much pain, this unfortunately puts a toll on my back so I can only stand for a few minutes then I need to find somewhere to sit. The surgeon was certain that the reason for the hernia was because of the infection so that is why she feels just going in and resuturing it will fix it, if not then she will send me on to a general surgeon to do the mesh fix.
Flchurchlady, thanks for the suggestion, I already filed and wow is that about the most messed up system that we have in America. I will try to keep this short and still hit the main points. I filed back in February before all of this fiasco started. I had come home (from driving over the road) for a couple days home time when my UC went into overdrive. Since I was spending everyday in the restroom from the time I woke up till mid to late afternoon, it was apparent that working any job was going to be impossible. Now I am a very "proud" man so applying was a tough decision but since I was the sole bread winner I realized it had to be done for the family. I applied on line and then was given an appointment to meet with my local representative. I fasted two days prior to try to avoid having any attack symptoms but that was pointless (still had problems that day). The drive was 45 miles and I showed up wearing an adult diaper (not proud of having to do that) five minutes late. Well guess what, the lady handling my case had already left not one but two messages on our home phone explaining that I had been denied due to not making my appointment (we got the messages when we got home). Anyway, she said since I made it we could go ahead and reprint the paperwork (yes she had supposedly already trashed all of the copies that I filled out on line) and file the appropriate forms to get the ball rolling. During all of the questioning and typing she did she decided to enlighten me on the fact that her husband had the same disease and works at a nearby auto plant. She explained that once he stepped on a nail while running down into a ditch to go while on the way to work and how he has to use the restroom numerous times a day at work. Well I had enough of her "I understand what you are going through" speech while trying to associate her husbands mild UC to my severe UC so I said "I bet your husband's boss is real proud that he pays a worker four plus hours a day to crap". This comment may or may not have had any influence on the decision of my case.
I know I said I would try to make this short but it was an ongoing mess. They said since I was prior military that I needed to apply for benefits through the VA also which I did. Then the trip to the ICU thing happened. My wife updated this rather hateful lady every change that took place with names of all of the 37 doctors that dealt with my case and what hospitals and procedures that had been done. This is significant because NONE of these doctors were listed on the denial letter. Well three days prior to having the first surgery was when we got the denial letter. I called this lady, left a message to which she then returned my call to reassure me that neither she nor her office had anything to do with the denial. I guess she thought I wouldn't call the main office to get answers, well she was wrong. I knew something was wrong when they had no idea of my case since they had nothing to do with the denial. I explained some of my situation to this very helpful lady who I guess oversees all of these branches. She was dumbfounded that with my case and all of the circumstances that it was denied (I guess having to wear adult diapers in public normally makes the case for disability with UC). She told me to get a hold of the first office because with new information (or in my case old information that was never used) that the case could be overturned. The catch is to contact the angry lady requires us to call a different office and leave a message for her to call which normally resulted in her calling back within a day or two. Something apparently happened because she would not return our calls but we started to get a flood of paperwork generated from her office about supposed "new" info she needed addresses and phone numbers of doctors that we had already provided. This is when I got a lawyer involved. Thanks to the laws, which I understand are to protect a citizen from being taken advantage of, all a lawyer will do is submit to have an appeal hearing. If the case is overturned in an appeal that is when the lawyer gets paid, not if it is overturned prior to appeal. This means he wants to have nothing to do with passing on any information at this time that might jeopardize it being overturned prior to appeal resulting in him not being paid a dime. He said it should go to appeal somewhere around the summer of 2009. I tried to tell my bill collectors to wait till then and I would pay them but they are not as understanding of the process as I am forced to be.
The VA application was just recently denied (I really didn't expect anything since it wasn't service related and the fact that I only spent six years active duty) and I assume the same ignorance that is taught to the disability workers is also taught to the VA board. They typed out an entire list of reasons that I was only 30% disabled and that I had to be 60% disabled to receive benefits. The problem with it was that it was chalked full of lies (I call a spade a spade) about my case. Things like I was only a level one or two UC sufferer. I am not sure but I would guess they are trying to say mild to moderate but doesn't it seem odd that they can't come to a defining conclusion on which one it was? Not to mention if that is all it was then why was there a rush to have my colon removed and why was my little sepsis incident linked to my UC? Level 1 or 2 wouldn't cause that much havoc. Again they also quoted only two sources, my PCP (all she ever did was refer my case to a specialist) and the GI doc who took my case right before my ICU incident. I guess his conclusion might have been flawed since he stated very few signs of UC but two weeks later I was on life flight. Either he was wrong or all 37 doctors that treated me in the ICU were wrong, myself I would lean toward him being wrong but not disability and the VA, I guess they believe 37 specialist in many different fields are dumber then one, practicing for two years, GI specialist.
The only thing I have left is to write one of my elected officials and hope they feel the same as I do that the system is flawed and hope that they can put a boot in someone's butt to get this going. If not I have no choice but to try to find some employment where I think I can keep from doing to severe of damage to myself prior to the surgery. It seems a no win choice but there is no way we can make it on the small paycheck my wife now gets since she returned to work. The system seems to be set to try to "starve" people out that truly are not disabled but in the process they starve out the ones who are disabled too. I guess the phrase "throwing out the baby with the bathwater" fits real nicely on this one.
I bet you wish you would have never opened up that can of worms Cecilia, LOL. See with all of that on top of all that I had been through I was hoping that somehow the surgeon's appointment could have come to some conclusion of wearing a hernia belt that would have fixed everything (I know I dream big) and I could have been released back to work so I could have started to catch up all the financial mess that has resulted from my incident. This situation has hit me on so many different levels that it is hard to keep my head up.
Thanks everyone for your words of support, they really have helped. I still have no date on when the surgery will be but I should hopefully hear something this week. Sorry for the dramatic novel but maybe it will let someone know how prepared they need to be if they apply for disability.
Thank you everyone for all of the encouraging words. It really helps me through all of this.
mom9mom, the sad part was I almost did die after I applied. I was life flighted and arrived at the hospital with all my major systems shut down due to sepsis, I too was only given a 10% chance of living. My wife kept them informed while I was in ICU but apparently that fell on deaf ears. I won't give up though, the surgeon keeps telling me to do nothing and by the time it is all done it will be well over a year that I have been down so even if I don't get a settlement until after I am able to go back to work it may help catch up all that has been neglected so far.
My surgeon's nurse is keeping me in line though. I called the office the other day because the pain pills they had put me on were almost out and I was still having a lot more pain then I would expect. I had purchased a hernia belt and modified it for my stoma but all that did was cut down on the pain I have when walking. She said she could reorder more pain pills but I told her I would rather not continue on that if we could figure something else out. She then asked me what kind of daily work I did. Well, it isn't much but basic housework, which I thought would be fine. Needless to say she was not happy with my activities. Seems I wasn't suposed to be doing things such as vacuuming, dishes, picking up things and she even said that bending over was a big no-no. That will be pretty hard for me to resist those activities, they were the few things I thought I could do to contribute to the household and make me feel like I had a worth. The problem I see is this information will again fall on deaf ears (with disability) but so be it.
I did recieve some comedy this week. I got a letter from a collections agency from one of my bills from the ICU thing in March. Even though I never recieved a bill from this billing agency it has been passed on to the collection agency. Now for the total unpaid amount, 50 cents. I about wet myself laughing, not to mention the pain it caused in my hernia. The funniest part is it had to have gone before some supervisor to be sent to collections, the cost of sending that on in postage alone was probably more then 50 cents, then the collections agency spent almost 50 cents in postage to tell me I owed them 50 cents. It is no wonder our country is in the finacial mess it is in with billing agencies working like that, spend two dollars to collect 50 cents, LOL. This is no joke, I actually have a bill from a collections agency for $0.50.
Everyone have a great Thanksgiving. I will be doing all the cooking (against doctor's orders) since I really do love to cook. I will make someone else move the turkey for me since my nurse said lift no more than 5 pounds. I will keep you all updated on getting a senator involved in all of this (disability).
My surgery is set for January 22nd, my surgeon is going out of country for the month of December (I guess she made a killing with my two surgeries, LOL). If a general re-suturing doesn't work then she will send me on to a general surgeon to do the mesh fix, let's hope the re-suturing does the trick.