I seem to be loosing my cool, blowing my top more and more lately...so terribly unlike me...I saw the French surgeon on Thurs., who agreed that a 'surface surgery' or surgery of comfort (readlastic surgery) would help me quite a bit...I have a 2kg fat pack over the stoma and pouch and it presses down on it and causes quite a bit of stress, pain, discomfort and makes sleeping on my side difficult...it is also ugly. The skin is distended on that side too and flops over the stoma opening...I have been planning this surgery for 2 yrs now but it keeps getting put off due to other complications...so with scans, x-rays and bloodwork in hand I went to see the plastics dr who promised to do it for me...with the other doc's approval...all good...then he told me that he could suck out the fat lump but would not touch the skin...What?...what is the point? If the skin fold is already falling over the stoma and you suck out the 2kg of fat it will only flop more and completely cover it!..no go. Maybe during another surgery. ????!!!! I don't want another surgery...I want it done at one time...I've had enough surgeries as it is and they still have to fix the valve again...not to mention the risk of an outside bag (another reason that I want that lump removed and the skin tightened...how could I get a flange to lay flat???...And no...I refuse that they touch the other side!)
So I am on a mental rampage yelling, screaming and generally being a b-tch! I am miserable. Housebound, workless, useless, and now no chance of removing the fat/lump/flop...unhappy.
Sorry for the rant but only you can understand the utter dissapointment I am feeling...I just wanted something good to happen.
Sharon

Sharon...I am so sorry for your pain and frustration. I completely understand what you
are experiencing as I have been experiencing the same emotions since home with the temp osotomy for a week. My days have consisted of no sleep, skin ulcers and irritation,endless leaks(up to 6 changes a day), crying and being mean and miserable to everyone, screaming at the ostomy nurse today on the phone. I feel like I am at my wits end because I cannot seem to get any appliance to adhere without leaks and I know it is because they placed my ostomy way to close to my belly button and I have a big indent where my belly button is so all the stool pools and leaks there.

I just stopped answering my phone calls as my family keeps calling to see how I am and if it is better and why bother even discussing the situation when nothing has changed and you are too miserable to communicate with anyone.

I am praying for better days for you as I know all the emotional anguish that goes with these illnesses and surgeries truly tests our resolve to our very core. I will pray for peace for you today and days that follow and hope your doctors will pull through with the surgery you need to rectify your situation.

Sharon, I know how much you were looking forward to getting that corrected. The way you explain it sounds perfectly reasonable to me. Is he's afraid he'll compromise the stoma or something else, otherwise then what is his problem? Can they fix this when they do the next surgery? Keep hanging in there with your beautiful spirit.

Kjeane, I'm so sorry you are still having all of these problems. I can't even imagine the pain as I didn't have the blisters. Since I had a similar stoma position I'm hoping they will finally get you an appliance that works, as I know how hard it was for me. My incision stiches were under my belly button and I developed a big abcess under it, which I'm sure was from the bag/appliance always leaking/exploding right there, causing the infection. I hope you have a horizontal incision.

At least I was in the hospital, for other reasons, long enough for them to finally figure out what I needed. I remember the Ostomy nurse putting one one me, well she "helped" me, and I had my husband chase her down the hall as it immediately failed when I stood up. (We were having "the lesson" on how to put it on.)

We have caller ID that shows up on the TVs too and I know how you feel about calls. I only answer if it is medical related or from one of my kids. All the rest of the calls I wait until I have the patience to talk to them and will admit I don't return all the calls. It's nice people care but in my case they try to "solve" the problem by telling me what I should eat or whatever...and they are clueless. I finally told my mother that she had no idea what was going on, and while I appreciated her wanting to help me, that the only way to help was to let me vent and not try to "solve" my problems.

You are feeling so horrible you can't have the energy needed to explain all of this to people. As I say, "it's hard to be charming" when you feel so bad.

I hope both of you ladies feel better tomorrow and get some sleep tonight, or already did in France. As for me I'm going to bed and know in a few hours I will wake up and start my bathroom marathon. It sounds easy compared to what you guys are going though.

Kjeane,Thoughenough,
thanks girls...I need other girls who understand what I am going through...the not answering the phone/never calling back hit the nail on the head...I live in a world of complete silence most days...only in my world they have pretty much stopped calling...this has been going on pretty much for 3yrs here...so I have lost most friends already and the inlaws (I have NO family:somewhat lucky, I know!)do not get it at all...they have decided that if I only eat X, Y, or Z I will be fine or if I stop eating x, y, or z then I will be just fine...Yes, Tough...They don't let me rant, they try to fix me, know a doc who fixed the superintendant's sister-in-law with magical brain waves or through the laying of hands...yeeesh!
My world is just shrinking day by day...Kjeane, air, light, sun...the only way to dry out all of the hell on your belly...if the tega derm doesn't work then blow dryer, sunlamp etc..it needs to be exposed if possible...The dryer the faster it heals...I remember all of the tape holding down my flange (k pouch) with the leaking the tape ate my skin and it pulled the skin off with it every time I changed the tape..it burnnnneedd...3 months of it every time...I couldn't remove the tube so I couldn't take off the flange...the tegaderm helped but I was 'flat'...you have the bellybutton/valley problem...poor thing...
My plastic surgeon is afraid of going too close to the stoma, my sugeon refuses to do anything that is non essential due to my healing problems...so no one does anything...and I have a 1/2 pregnancy on my right side hanging over my stoma!
I am calmer today, poor hubby got it with both barrels...2 days of miserable me. He crept closer this morning hoping to not get scratched! I got a hug...helped.
This isolation is killing me....loneliness and non-comprehension by my robustly healthy inlaws here...no friends in the area, I am talking to my pots and pans now...amazing that I only loose it every 6 months!
Thanks girls
Sharon

You can talk to us anytime. I know it may not be the same as face to face conversation, but know we are here for you and care about your well being.

Hi Sharon,

I am so very so sorry for what you are going through. You are a very beautiful person and it doesn't seem fair that you have to endure all of this. Perhaps a visit with another plastic surgeon to get another opinion? I can only try to understand your anquish with all you've gone through. Life doesn't seem fair sometimes - you've gone through so much more than any of us can possibly imagine. There are lots of us here who keep hoping things will eventually turnaround for you.
One of your many friends, Dixie

My friends all have solutions for everyone else's problems but not for their own. I have found it easiest to thank them and change the subject. I think all of us are the only ones who "get it"! After a year of having a temp. Ileostomy and three years prior to that of having totally uncontrollable bowel movements day and night, I told my surgeon (after my takedown) I felt as though I could only have a B.M. if I coughed hard while I sat on the toilet. He very sweetly asked me, "Can't you just push?". It had never dawned on me to have to push.....I hadn't needed to do so in years! So...hang in there Sharon! We are on your side and really do "get it"!

I like CeCe's suggestion, smile and tell them thanks for their suggestion, regarding people telling you and us that all we need to do is eat x y & z or not! They are incapable of compromising.

Sharon, I like the 2nd plastic surgeon consult too. Don't you have another surgery coming up? Could the plastic surgeon also be in the operating room and take care of the prior surgeory messes at the same? (I have no idea, I'm an accountant.) I just don't see how all that skin hanging over is helping you. Maybe you can tell your surgeon it is making things worse, as I believe it is right?

I made it riding in the car all day today and had the seat laid back most of the time. Im paying for it now.

Hang in there!

This message has been edited. Last edited by: toughenough,

Thanks girls...I will follow your advice and call another plastic surgeon...I am just afraid that with my history no one will touch me...my surgeon refuses to work on more than one site at once...he says that I am complicated enough and the plastic guy will never do the lipo/stretch/pull at the end of the k pouch revision...I like Ceecee's suggestion too...
I was in a deep, dark, black place this week and sinking deeper from all of the stress and dissapointment...the week ended with a friend's mother's funeral and the birth of my niece's 7th baby...with a cardiac malformation...puts it all back into perspective...birth and death and disease...all in one day...
The black mood has lifted...yes, I know that there are those worse off than me...but sometimes it is just so damn hard!
I love my family and my friends (whoever is left) but there are days, like the last few, when offing myself seemed like the best idea...I hit a wall...and just couldn't see my way around it...
Thanks for holding my hand through it all...I need you to help me make it through the bad times...no one else can get it but you.
Sharon