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Posted 4/22/2009 10:00 AM (GMT 0)
I think that is a good idea to have the CC look at your reports...if the doc thinks you have a shot, then you can meet in person. It isn't personal against your surgeon, but it IS YOUR LIFE and you have to be your own advocate...

Hang in there...I know how bad abscesses sux I hope they let you eat today:/
Posted 4/22/2009 10:48 AM (GMT 0)
I hope today goes a lot better for you!! TPN is great stuff!
Posted 4/22/2009 10:59 AM (GMT 0)
*huge hugs* My ostomy won't be emergent, but I'd be lying if I said I wasn't scared and half-mortified by it all!

That said, my surgeon consults with Cleveland Clinic and often refers to their "techniques." They do amazing things there! I hope some answers and comfort are in your near future!!!
Posted 4/25/2009 5:26 AM (GMT 0)

Got an appt @ cleveland clinic May 27.........with Dr. Remzi!!!!! for opinion.

Lizzie

Posted 4/25/2009 1:12 PM (GMT 0)
That's great lizzie!! Hang in there till then.
Posted 4/25/2009 5:57 PM (GMT 0)

So I need some advice....I woke up this morning and my bag was pretty full....I am still not eating much, so its very liquid and green. I noticed I had some pain at the bottom of my wafer. I looked and it appeared there had been a small leak, but there was nothing on my bed, clothes etc, just on the edge of the wafer andmy skin was all red and raw so I knew I needed to change everything. When I took my appliance off and jumped in the shower I had red skin breakdown and small red bumps all on the bottom area of my stoma. My stoma has shrunk its now just over 1 in., but smaller than 1 1/4. I am not sure if this is the problem. I was not sure exactly how to help my skin. I had the poweder, but I wasnt sure really how to use it. i could not remember and since it was the weekend I had no one to call. I dried everything and spayed the powder of the affected area and then with a damp cloth removed the excess and redressed my stoma. Ot has stopped burning so bad, but I am not sure if what I did was right? Just need your advice.....thanks

Lizzie

Posted 4/25/2009 7:31 PM (GMT 0)
if you are not eating much its green like that cause of bile, that will come out if you dont eat alot.
I sometimes have mystery leaks like you are talkign about, mostly when my output is really really watery.
I dont know about the powder, i'm sorry i wish i could help.
Posted 4/26/2009 5:16 PM (GMT 0)

Lizzie,

It is pretty much trial and error.  If you are cutting the hole in the wafer the correct size, then you are on top of things.  How does the new wafer feel?  Has the burning stopped?  The only other thing I can recommend is to use a strip of an Eakin Seal around the opening you have cut for the stoma to help prevent breakdown there.  That might buy you some additional wear time.

Posted 4/27/2009 2:21 PM (GMT 0)

HAving a day......just needed to get some emotions out. I am still not doing the greatest with this bag and still have no appetite, but I think that has a lot to do with the fact I am on vicodin still for pain, zofran, celexa, antibiotic for abscess, and xanax. they keep me going through the day, but i feel no appetite at most times. I just want to feel like myself again. I have only been out of the hospital after 16 days for four days now and I know this is an adjustment, but I have never been a very pt person. My husband and mom keep trying to force food down, but i just do not want it......still eating cherrios and yogurt and of course vitamin water and powerade zero to keep hydrated.

Just wondered how long you all grieved for and maybe its different for me because it was emergent. I had no time to cope with the idea or think of how life would change. I have skin breakdown already ( i have such sensitive skin) and they told me to use powder and barrier wipes? plus I use a strip of eakin seal around the opeinging I have sut for stoma. I am inbetween 1 " and 1 1/4" but I usually cut for 1 1/4"? Is this the right thing to do? I will try that since I change everything today. I am using a Hollister mini bag and seem to be doing fine with it....I have never not made it through the night....but I also know I am not eating normal. I have never been a big eater in general and I think that this will not change much when I get my appetite back. The noises have settled a little.....it sure smells like what you eat and I have a hirrible gag reflex. I have been using the deodorizer stuff they gave me, but I think I may try some mouth was or M9 drops. They tols me the mouth wash dries out the stoma, but if you all do ok with it then I do not see the big deal. Do you put it in after every empty?

Sorry again.....just feel so down today. I hope CC can give me some answers on May 27.....I am afraid of another surgery, but I think it would be great for me.

Thanks for all your help...I wish I was doing as well as all of you.

Lizzie

Posted 4/27/2009 2:32 PM (GMT 0)
Lizzie i hope you are getting on better today.

Your stoma will shrink over next two months.  dont you have a nurse visit you so soon out of hospital?  I had one visit 3 times.  I still am nervous about cutting the holes.  i also have very sore skin.  i think it is cause it is flat and also just over 1 inch.  i either cut too big or too small. cant get it right. i itch terribly also as i have sensitive skin and everything is quite red.  i see my nurse on friday in clinic now.

i do believe you are grieving cause you didnt have much time to get your head around the bag thing.  i had a year to think about it, but because i am free from pain etc i am happy.  though i would like to get rid of asap like you.  i do hope you feel better soon and able to adjust to painfree life.

Posted 4/28/2009 7:53 AM (GMT 0)

Lizzie,

Use the deodorizer with every time you empty your bag, esp. with your gag reflex.  I had that too at the beginning.  And I do understand where you are coming from as my surgery was done on an emergency basis.  BUT, it saved my life and I was thankful for that.  I was hoping the Eakin Seal would solve all of your problems.  Regarding cutting the wafer. If you are in between the 2 sizes, be sure to cut the wafer in between the 2 sizes, just a teeny, tiny bit larger than the stoma.  This will help with your wear time as well.  Also, and this is just my opinion, the more that you can stay upright or lay on your side, the more the output will flow away from the opening in the flange and maybe not cause the skin breakdown so quickly.

I will you the best of luck and do keep us posted on how you are doing/feeling... take care.

Posted 4/29/2009 12:04 AM (GMT 0)

KAren and Peggy....

Thanks for your responses. I have noticed my days are pretty similar. I wake up very depressed, take my meds, feel good and move around pretty good, and then I am in pain and feel down again at night. I see my surgeon and pcp in the next couple weeks. I have to remind myself daily that this surgery saved my life....it may or may not be permanent, but I have to have a better attitude and I am trying. I have been using the deodorizer more often and that has helped alot and my skin looks a ton better already. I cut it inbetween this time and I have had no leakage. I think a big problem with my and the bag is I am ANAL.....clean freak and it is never perfectly clean :( but I try my best.

The best news......I got approved by insurance for my May 27 CC appt and then they said they will make further decisions based on their recommendations.....this is very good news considering I have had many issues with them.

Thanks you for all of your support.....you all are wonderful.

Lizzie

Posted 4/29/2009 1:07 AM (GMT 0)
thinking about you and wanting to say--keep going with the hydration and try to get some protein down. I couldn't stomach much for several weeks but it was the protein that ultimately kick started my healing. The visiting nurse idea is a wonderful one. I still have mine 2ce a week for my wound and the stoma care.

As for grieving, I think I do a little--or a lot--everyday. Have you gotten any ostomy books or been on Shaz' website or Ostomyland? Both have some great down-to-earth stories and tips that are very helpful.
Posted 4/29/2009 9:45 AM (GMT 0)
Great news Lizzie. I hope each day gets better for you. x
Posted 4/29/2009 10:58 AM (GMT 0)
hang in there honey, that's very good news about the CC, i'm glad your skin is better. one step at a time and you'll get through this.
Posted 4/29/2009 2:24 PM (GMT 0)

Lizzie,

It sounds like you might need to break the cycle of discomfort in the evening... are you taking pain meds in the evening?  Do you shower in the morning or in the evening?  You might try a warm/hot shower in the evening when you start feeling yucky.  It may help to invigorate you and feel better from the heat on your sore muscles.  I'm grasping here for ideas.  If the weather is nice, I'd say get outside in the evening - even if it just to sit outside a bit and read.  Sunshine works wonders, really. 

Keep us posted.

Posted 4/30/2009 6:00 PM (GMT 0)
HAD THE WORST MORNING EVER!!!!!!!!!! I have been crying and panicking. I woke up ans went to empty my bag and it all came pouring out of the bottom of my wafer. It got everywhere and I did not know what to do. I jumped in the shower and cleaned everything and it was changing day anyway. I measured my stoma and I think what happened is it is 1 " and my wafer was cut to big. I noticed yesterday it was pulling away from the stoma. I felt like I was going to pass out from panic. I was in pain and I am almost out of vicodin. I am just over two weeks post-op, but i have so much pain in morning and evening in belly and horriblei in back. I tried ibuprofen, but it has not helped. I have ten left out of 45.....I have been taking 2-3 in morning and same at night. I cut my new wakwe small, made sure I had a good eakin seal......what would I have done if I wasnt at home. I panicked.....it was pouring out and I am a nurse....how humiliating would that be. I think when I go back I will have to kepp an extra set of clothes and my change of stuff right in our office.

I just start to feel ok with it and this happens....I feel like I am losing my mind. I am trying so hard to be positive, but I am having so many struggles. You would think a nurse would know how to cut a wafer!!!!! Anyways.....needed to vent. Sorry for all of my complaining.

Love you all.

lIzzie

Posted 4/30/2009 6:10 PM (GMT 0)
lol just because you are a nurse does not mean you should automatically know how to do this! my husband is a nurse and had NO idea how to do anything with this!!!
Im sorry you had such a bad day today!
Posted 4/30/2009 8:23 PM (GMT 0)

Hey Lizzie,

I too have had this same thing happen newly after my surgery... And YES I panicked horribly because I didn't feel as tho I was in CONTROL of the situation.  I hate it when I can't have control over my own body.  Just so that you know, I think a lot of us have had issues like this at first.  Take a deep breath.  Just keep telling yourself that you can get thru this, one day at a time.  Try not to worry about tomorrow and forget about yesterday.  One day at a time.  I feel bad for you, but I think you are probably right about the hole being cut too big.  Be sure to measure your stoma and cut the wafer as close as possible so that you can minimize leaks.

I'm thinking about you.

Posted 4/30/2009 9:38 PM (GMT 0)
hang on Lizzie--you've had quite a day! Do you have some family looking in on you or staying with you for a few hours each day? That has helped me immensely. My mother was here again today to restock the fridge, help with laundry, make sure I stay hydrated, help me cook a meal. But the best is how her company keeps me from panicking and takes my mind off the pain.

Are you using a heating pad for your back and changing positions every few hours? As for pain meds, they will work better with food so please try to eat at least a little broth, bread, cheese. The best advice I got was to "eat what you crave." That started me out well.

I wonder if you've found your local United Ostomy Association support group--they should have a visiting program and could send a visitor out to to you and set you up with a few more email buddies. I attended my first meeting (which was a presentation on appliances) at one month--I was in pain through the whole thing but it was worth it b/c it was just amazingly helpful to meet people with ostomies and hear them ask the questions that were in my head!

Thinking of you!
Posted 4/30/2009 11:46 PM (GMT 0)

Lizzie-here's a few things I picked up from your last post...

Are you only taking 3 Vicodin in am and 3 at night?  You should stay ahead of the pain and taking 2 every 6 hours could do that...four doses a day...Plan them so you take them right before you go to bed and right when you wake up then twice during the day.  By letting your body ache during the day hours makes it harder to catch up.  This isn't a permanent solution and once your body starts to heal without the pain you can cut back a little at a time!  Don't worry about asking for another script...many of us have had to!

If you can eat some crackers/pretzels during the day you should be able to thicken your output so it isn't all liquid...the liquid pulls on the pouch and weakens the seal faster.

If you aren't an ostomy nurse so how would you know?!!!  Don't be so hard on yourself nono   You'll get through this difficult time and will be out and about before you know it!!

Posted 5/1/2009 4:24 AM (GMT 0)

Thank You all for your replies.....my day just kept getting worse, but I have made it through. My husband ws laid off with his next day being next Friday (but they need him back in Sept), my work screwed up my short term disability and they owe me 2,200 dollars. Then tonight I tried to burp my bag and did not realize it was active and got it all over AGAIN!!!!!!!! I started crying.....I think my poor husband does not know what to do anymore.....I have so much to be happy for yet I focus on the negative. I have to realize I am still grieving.

Thanks OHIO for the vicodin advice....I will try that....I just was so afraid of getting addicted. I have been in so much pain tonight tummy and back. I am going to call tomorrow for more pain meds. I just do not want them to think I do not need them. I hate narcotics, but I need them right now and ibuprofen doesnt kick it.

I will figure out this bag sometime, but for not I am afraid to leave the house.....I cannot imagine these leaks happening when I do not have the clean-up ability I have at home.....thanks so much for all of your advice, help, and suggestions. I do not know what I would do without this site.

Lizzie

Posted 5/1/2009 5:35 PM (GMT 0)

BAck to the Emergency room....talked with my surgeon this am and told him of my continued nausea, peeing only twice a day, and pain in belly and back both on right side. He wants me to have a CT scan. Pray everyithing is ok......i hope it is. I cannot go back into the hospital.

Lizzie

Posted 5/4/2009 4:29 AM (GMT 0)

So, I do not know what to do......

Here is my situation. My bag is leaking very other day. It leaked Fri and then again tonight and my poor skin is paying for it. I had one of best friends who is also a nurse come over and watch me change it tonight....what we have noticed is now my stoma is a tight 7/8'' and room around the 1''. Also my stoma is more swollen at top and flatter on the bottom where it alwyas leaks. When I put the eakin seal on right away you can see it does not completely cover or adhere and it pulls away from the wafer. I tried tonight putting extra eakin seal strip around the bottom where it is leaking....I am just so frustrated. I think I will call the ostomy nurses tomorrow.

Also, i was in ER Friday. I still have small fluid collection and having pain still and horrible back pain. I will be three weeks post-op tomorrow. They gave me fluid and dilaudud in hospital and did CT scan obviously per my surgeon. They changed my meds to Percocet fro vicodin and added compazine to my zofran for nausea. Still not eating that well, but trying to for healing.

Just wondered if any of you had any sugggestions.....just cannot do this every other day.

Lizzie

Posted 5/5/2009 2:23 PM (GMT 0)

Hey Lizzie sorry to hear about probs with the bag - it shrinks so rapidly in the early weeks - i had some leakig problems too but - once when out - but i knew it was becasue i had put it on without cleaning the glue off and once too much barrier cream.  it needs to be so snug around hte stoma and together with the washer rings underneath (same as eakin seal?) it should help.  i cut my rings in half and mould them and put them straight over the stoma so it fits well, then i put the bag on top of that - i find that better than putting the ring on the bag as at least i can see and mould the ring around the stoma better. 

i also have a rather flat small stoma and i am trying a convex bag when my nurse sends it to me as i have bad skin around stoma but it is getting better now as i am getting better at cutting. lol xxx

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