well to start off I had to have step1 redone after 2yrs of problems and didnt not expect it and it has been a nightmare with leaks from the wafer from to much drainage my et nurse is not nice or helping me . every time my home care nurse sees a problem they tell the doctor . then he says there is no problem with out seeing me . seeing another doctor can't not happen in mich where I live all of them have refuse to see me because all of the problems that I have at they do not want the problems aka liablity .

So fed up I dunno what to do anymore today I call them and the doctors office of course he is never around and they say they tell him I told them how I feel , I feel like they just throw me in the gutter.

I,m an auto tech I feel like , If I half arse fixed someone car they left and ended up walking home and the car got worse and they asked me to fix it right and I ignored them or told them to get bent...I don't do that to people what I mean I don't leave them hanging no matter how hard of the problem or what it may be I do not leave people in the dark or screw them over . Thats how I feel right now.... from them.

A few weeks ago I been telling my et nurse I ,m short on supplies she replies no problem we will take care of it never does . I run out of supplies call her she says I will be right over , never shows up

I had a towel on my stoma for hours and in the shower had poop all over me.. I taped a bag no wafer nothing to my stoma to catch some had no choice until morning. still never heard from her called the docs they didnt say much because they supplies came that day still I wasnt happy because of how she left me like that..


Now atleast 4 times a week a wake up to poop all over me in my hair my face from the bag coming off . I have no idea what to do but rant here now as my life sucks because of them ignoring me and not doing anything for me . I like to see them go through this mess .
The sad part is i,m scared to go back to work because every time I SEE a doctors badge on there window who knows I may not feel like going out of my way or fixing there stuff anymore ahahahah.. anyhow thanks for reading my rant.

Jeff,

For once, I am actually pretty much without words. I am so sorry that the medical/nursing professions have left you feeling so totally abandoned. It is not supposed to be like this. Folks in these fields are supposed to have compassion and empathy, even if they cannot solve all your problems. It brings tears to my eyes to know that not only were you not helped, but you were told help was coming, then were completely left in the lurch. It makes me ashamed as a nurse to hear stories like this.

All I can say is I am sorry you are having to deal with this. Is there any way to get a different ET nurse? This one sounds like she is worse than useless. Phone calls to your doctor may not be enough. You have to make an appointment or just tell them you are showing up and refuse to leave until you are seen. It shouldn't be that way, but sometimes you have to push (without being aggressive or too pushy).

Again, I'm sorry,

Jan

Jeff,
What if you just went to the doctor's office or ER or whatever and sat there with your bag...or lack of a bag and let poop get all over their floor? Maybe someone would take note and help you. This is terrible! You need an advocate and someone to speak for you! Could your wife or any family members help you be heard.

I agree with Jan to go and sit there until you're seen. And if you are seen try to communicate to them the best way you can what's going on without name calling or pointing fingers because that won't get you anywhere. Just focus on the future and what they can do NOW to help you. Try to focus on what they haven't done just get some help...any help that you can.

I'm so sorry...

I called again , again and again until I got an answer today and they are gonna see me tomorrow we will see what happens finally something, far as a et nurse sadly this is the only one we have that is home care. But the hositol has 3 but I have to go there. Far as family they don't understand any of this and none of them live in my state. They live other side of the country besides there used to be taking care of them they can be selfish as they have been not much help. My wife has been ok but I think we are heading for a devorce as I have ED thanks to the surgery and all the pain i'm in we have no love life its been 5yrs since we had a love life and been married 6yrs.

ThE other day was our 6th yr anniversry I was so much in pain and unhappy I didnt even realize what day it was until she reminded me the next day and sadly we cant afford to do anything anyhow. Ya you dont need money but we can't do anything together becuase of my condtion even when she tries to hug me I end up in pain as she touches my stomach life sucks sometimes...I just wish this battle would end soon.....I miss work , friends , life everything I know there is a end but this 5yr battle seems forever and the doctors empty promises seem to be nothing and so far away.

Thanks you guys/ gals for the nice words I know there is a end for all of us just a metter of when...I will let ya know how tomorrow goes...

I hope my truck makes it there my newer suv the trans went out while I was in surgery. Its wierd every time I have surgery 1-3 of vehicles ends up breaking down with major repairs and sadly there in great shape grrr to bad luck....

If it were me, I'd have my ET nurse visits at the hospital and give the home care one her walking papers. Plus, I'd also file a complaint with the visiting nurse association that hired her. It is important that they know that she is not providing appropriate care. I know it is an imposition to drive to get your care, but I think you would feel better about it and more in control.

When you see your doctor tomorrow, do not suck it up and try to paint a pretty picture. Make sure he knows how much pain you are in, how frustrated you have become, and yes, how your marriage is becoming affected. There is time to salvage your life. Don't let him get away with, "just be patient and things will work out." Ask him for help with coping with the here and now. You need solutions.

I will keep my fingers crossed, both for your appointment, and for your truck.

Jan

Jeff, I am with Olive Oil. In fact, I have done what she suggests and I can tell you that it works. (And I wasn't even doing it with a bag full of s@@@--I just had an ear infection that was about to rupture my eardrum. I walked into the waiting room, started crying, and saw a previously "unavailable" doctor in about 15 minutes.)

I'm also wondering whether there might be some other source (besides the ET nurse) for your supplies. My insurance company makes me order them from one particular place, which is none too quick on the uptake either, but even a big slow shop has got to be better than one person who apparently forgot what she said she would do. Is it a possibility?

I am thinking of you and hoping the best for you. Hang in there.

CPG

So sorry to hear of your troubles. My visiting nurses have been great, so it seems so very unfair. I agree about showing up (to EM or Dr office) and just sitting there until you get help. Maybe you need a different brand of bag and wafer.
Jenny

Well I seen the doc today and it see's the problem from all of the stool going in the wound so much from all of the bags coming off daily I have a infection also they moved my surgery up to may 21 for take down instead of waiting 3 months so they can grau late sp the wound or something while they are there so.

I,m so worried there rushing it we waitied 6 months last time we had to but 2 months scares me to death but monday I go for my x ray to see if the pouch is ok to go. I hate that x ray very messy yuck but oh well I been through worse. Sounds like good news but scared to death this time . Last time was not scared until the monet I was going to sleep... because of the coma the surgery before. Anyhow thanks for the support and advice you guys are awesome.

Sounds to me like they have made a wise decision. You have to consider that it is all about weighing the risks vs. the benefits, and at this point, your ileostomy is nothing but a liability. You are ahead of the game compared to last time because your diseased colon is long gone. That should help improve your healing capabilities. When intestines are sewn together, they heal up within a few days. The extra time given is for being extra cautious, especially if there is any tension on the suture line at all. Remember that it is not unusual to skip the ileostomy altogether (1-step). Of course you are going to be nervous, with your past history. But things are much more likely to go better this time.

Good luck!

Jan

Hi Jeff,

Well at least there is a plan in place. I will keep my fingers crossed that your pouch is ready for use so that you no longer have to deal with your stoma and the open wound.

I can't believe how shabbily your ET nurse has treated you. She has been really unprofessional and I agree with Jan that it would be better all round if you were to see one of the ET nurses at the hospital rather than waiting for your community ET nurse to stand you up again.

I really do hope that you get your takedown early and this is the turning point for you. My heart breaks for what you have been going through.

Take care and keep us posted.

Shell

Thanks shell and jan I sure will let ya know. Thanks for the support. You guys are all have since my family sucks...So I thank you for being there when I need it.

Well, we can't physically hold your hand, but at least we understand what you are dealing with (well, sort of-- I have been fortunate enough to never to have had an ostomy).

Jan