Crap, I can't catch a break

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slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 10/29/2008 7:51 PM (GMT -6)   
Well for anyone who may have followed my nearly fatal situation that led to me having a permanent ostomy then you know it has been a little over 9 months since this all started.  The surgery was the greatest thing for me in improving my health back to a pre UC state.  As some of you may remember my second surgery (completion of total colectomy "sewed shut") I had complications with an infection that literally blew my front incision open.
 
Shortly after, a lump showed up further down the incision from the blow out that just kept getting bigger and more painful.  At my check up appointment today with my surgeon we had very little time to applaud how well the open incisions had healed since the focus was shifted to this now "softball" sized lump right on my waist line at the incision.  She had to do very little examining to determine that it was indeed a hernia and that with all the problems it is causing me (can't stand up straight due to pain, I fear sneezing, coughing or laughing because that is devastating pain) that it should be fixed as soon as possible.  Unfortunately that won't be until January sometime so it will be official, over a year out of work with all of this.
 
She said that it was big enough that the concern of it restricting some of my small intestine is minimal but not to do any lifting or physical work that would put strain on that area which could cause it to get worse.  I realize that I have been through a lot worse and this is a minor set back but it all has been consecutive with no chance to catch my breath or get back to living some sort of normal life.  Not to mention due to the pain (and 14" increase in my waist size, 36" to 50") I am unable to wear normal pants so I have resorted to wearing bib overalls.  I know this sounds vain but the overalls have to be a large size to accomodate the extra belly which mean I look like a beach ball in them even at 6'1".
 
The only good I can seem to find in all of this is that since I have had so many problems in other areas, and none with my ostomy, this means adapting to my "bionic colon" has been a breeze.  Sorry for the rant but I had to put my disappointment down in words to get it off of my chest.  Hope everyone else is doing great and enjoying life, I will be out there enjoying too hopefully soon.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/29/2008 8:06 PM (GMT -6)   
John,
I am so sorry for all the trials you have been through. It's been a long road for you. But, know that things happen for a reason, even if that reason is not clear to you now. I believe sometimes that reason never is clear. I have felt that way, but my shoulders must be broad cuz I have had my share of "stuff" happen to me as well. Enough Already, right?!

Keep your chin up, and stop by the board more frequently. It is good hearing from you. Besides, this is a great place to get stuff off your chest - that is what we are all here for.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/29/2008 11:16 PM (GMT -6)   
John this might sound weird but be thankful that your DR. is going to fix it.My whole right side is as big as a small watermelon.My surgeon dosnt want to do anything with it at this time because 1-I dont have any good musle left on that side.2-It dosnt hurt its just ugle.3-he thinks that repairing it might cause more problams to my bowels in the future(I cant afford to loss any more then I have).I am sorry that you have to go through a new surgary but think of it this way you wont have to walk around looking like you are 6 months pregnant on one side and I also have to wear a compression garment all day every day.Hope this post makes you feel a little better about surgary and you get a laugh out of the thought of my watermelon.
Lost half of my small intestine.Ilieostomy for 5 months then reverst,Nerve damage to right leg,part of my right hip bone removed,Cronic pain,hernia,infection in my back called discites,and depression.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/30/2008 3:49 AM (GMT -6)   
John, sorry to hear of your set back:( I know it can be a difficult thing to wrap your head around, especially when you look at it from the work side of thing (and the overalls), but you WILL be better soon!!! Sometimes the hardest part is finding the possitive...at least you hadn't already gone back to work. My two "infections" set me back six months in my recovery but I KNOW its temporary (fingers crossed)!!!

Keep us posted and remember this is a great place to rant...and then somehow we feel better.

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 11/3/2008 1:43 AM (GMT -6)   
shakehead   shakehead shakehead John want to say sorry about my post the other day I was in a bad place the last week.Uped my anti-depression med`s to twice a day that helped also have been in alot of pain for the last week(weather more then likely)dosn`t help.I should have been more suportive to you and I just wanted to have a pitty party for my self so please forgive me my post and I hope that things are better for you.Keep us posted on how you are doing and good luck. shakehead shakehead shakehead
Lost half of my small intestine.Ilieostomy for 5 months then reverst,Nerve damage to right leg,part of my right hip bone removed,Cronic pain,hernia,infection in my back called discites,and depression.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/4/2008 4:56 AM (GMT -6)   
John,
Sorry to hear that you're going to have to have another surgery. sad Soon, you will be all fixed up and will be out there enjoying life again! Since you've had to be out of work for so long, have you thought about applying for social security disability benefits? Just a thought.
Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 11/4/2008 9:38 PM (GMT -6)   
I am so sorry about your problems, John. At least the stoma is acting nicely. Like someone else said, at least your surgeon is considering operating on it. My doctor doesn't want to talk about fixing mine. Even though it doesn't hurt, it look like heck.Take it easy and remember that this too will pass.

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 11/10/2008 12:04 PM (GMT -6)   

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.

John


Total Colectomy with End Ileostomy May 27th, 2008


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/12/2008 12:03 AM (GMT -6)   
Wow, John, that is terrible. I am so sorry you had to go through all of that. shakehead Thanks for sharing your experience with us.

I have a friend with degenerative disc disease in her spine who cannot work due to the pain. She went through the torturous experience of applying for disability, too, and was denied three times. I think it's awful that the process is so grueling and riddled with problems. It puts people who are ill through more stress than is necessary, which is wrong on so many levels.

By the way, I loved your response to that lady! wink

Cecilia

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 11/15/2008 10:00 PM (GMT -6)   
Dear John:

What a nightmare! I was on Social Security DBL, I was accepted right away but I was in the ICU during the time my disability began through the time that my paperwork was processed (yes, over six months). That being said, I am the only person I know of who was granted disability benefits on the first attempt. It seems you have to apply and reapply several times unless you are literally on death's door. Don't give up! And don't feel backward about applying. This is a benefit we pay for as taxpayers, plus, you are former military. I can't think of a more appropriate recipient of this benefit than you.

As for the incisional hernias I can also relate. My surgeon doesn't want to touch mine since I had so may abdominal surgeries and my muscles are shot. I have been wearing a "slimming" wrap my wife found on Dr. Leonard's site. It helps a bit, especially during more active periods. The hernia belt rides kind of low and doesn't support the area north of the navel.

Hang in there, try not to get discouraged. There's wonderful support on this site and I am sure you will find it helpful. You'll be in our thoughts & prayers here in NY.

Richard
Indabag
 
Ileostomy in August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. Reversal May 2008.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/15/2008 11:46 PM (GMT -6)   
Wow that is horrible! It's crazy how hard it is for sick people to get the help they need from the government! i tried to file a complaint for being fired do to being really really sick and was told i had to make a trip over an hour and half away and sit in an office and hope i got an appointment! i gave up. and my Dad had to wait two years to get his disablity, even though he had worked his whole life and was in such bad shape (post polio) that at that time he could hardly walk! i hope that you can get this straightnened out there is a reason we all pay taxes!
I am suprised about the VA thing though, i have two uncles who both get (well one died but he got healthcare there and help with other medical stuff) help from them. My uncle who is still alive was in active duty in vietnam, for i think two years, andhe doesn't really have anything wrong with him. Just anytime he gets sick or needs to go to a dr he can either go there, or if for some reason hecan file stuff with them and get some money back. i dont understand it all.

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 11/21/2008 2:37 AM (GMT -6)   
John good to hear from you again.I have been off line for awhill myself because first my computer did die(my Dad bought me a new one I would not be talking to you if he had not I dont have the money)then I had to have my gallblader remove on the 13th.I got out of the hospital last monday.I am so sorry about your fight with S.S.I. Like Richard I only had to apply 1 time and also like Richerd I was in ICU. for 3 months and only had a 10% chance of living. Guess that means that you have to almost die before thay will part with money fast.Please don`t give up keep fighting for what you deserve.The only reason so many people are denied is because most people give up after the second try.Any way good luck. Debbie.
Lost half of my small intestine.Ilieostomy for 5 months then reverst,Nerve damage to right leg,part of my right hip bone removed,Cronic pain,hernia,infection in my back called discites,and depression.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 11/26/2008 3:47 PM (GMT -6)   

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.  rolleyes shocked rolleyes

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.

John


Total Colectomy with End Ileostomy May 27th, 2008


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 12/1/2008 1:55 PM (GMT -6)   
John I do beleave you about the collections.I have not had one that low but I have gotten bills for $1.10 before.I would like to give you one tip on your collection bill.Keep all bills stamped PAYED IN FULL for at least 4 years.I have had more then one come back on me after a few years saying that I still owe them money.Funny thing is I have had the same P.O. box for 26 years.If I ask them why thay took 3 years to send me a bill if I still owed them thay always claim that thay could not find us.I dont know how you manage to vacuum, I am slowly starting to be able to do some house work but every time I vacuum my back about kills me.I have to wear a 50 mcg/h Fentanyl patch for my cronic pain and I still can not stand to vacuum.Good luck on your surgery. Debbie
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 12/4/2008 5:18 PM (GMT -6)   
mom9mom said...
I dont know how you manage to vacuum, I am slowly starting to be able to do some house work but every time I vacuum my back about kills me.I have to wear a 50 mcg/h Fentanyl patch for my cronic pain and I still can not stand to vacuum.Good luck on your surgery. Debbie

 
Debbie,
 
It was tough, it hurt, I could only do one room at a time and had to sit down after.  My surgeon had me on pain pills at the time so sometimes I would have to take one or two to help ease the pain.  I have always had probems just sitting around so it was more me trying to do things I wasn't suppose to just to feel like I was contributing to the household.  Thanks to having a cold now I have coughed and sneezed the hernia even bigger.  I felt it tear the other night (from a coughing fit) which was the most pain I have felt in a long time.  Now becuase of all of that my wife has me on a no work and very little moving schedule.  I just hope I don't go crazy in the next month and a half from doing nothing, LOL.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 12/5/2008 4:32 AM (GMT -6)   
You need to find a sit down hobbie!Have you ever thought about knitting(just kidding).I love to read so that helps.Bad thing is that if I do anything for to long I hurt like heck.You could try cross word puzzles.Jigsaw puzzles,maybe one of those model car kits(that might be fun).How about writing?Iread 3 to 5 books in a week(this I have always done)so you would think that I could write alittle bit but I cant,I have tryed and all I get is about one page of junk.I have my 4 kids that are in school and 3 granddaughters + there dad(my oldest son who is 27)and my husband so I get to help them do there homework after school everyday,also I have to make sure thay do there chores.I am proud to say that my 5 year old daughter who is in kindergarden can read at the begining level and she can do simple math.She is very very smart but I know that some of it is because I have the time to help her every day.My 8 year old granddaughter received the best grades she has ever had since she started school on her last report card.Hope your cold gets better soon. My husband just came home from working his last midnight(he`s on a 7 day rotation) yesterday morning with one to.He do`s not get sick very often so he feels horrable.Wish I could help you think of things to do sitting down how about tieing flys? Debbie
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.

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