I am at the end of my rope with all of this. not for once, not ever, can a single thing just go right. I feel like I haven't slept in weeks. they opened me up like, 5 days after my first surgery because they thought there was an obstruction. there wasn't, they didn't really know what was wrong like usual, so then recovery is even longer. well, then I get a would infection and this thing is gaping open. then my picc line got infected. I'm home, but I'm exhausted, I feel like I'm going to throw up 24/7, I can't sleep, these stupid convatec moldable wafers WILL NOT stick for more than a day, and my ostomy nurse is not doing much to help me with this. I am bawling my eyes out at the drop of a hat because I just cannot see the light at the end of the tunnel. I feel so hopeless and lost. I keep questioning if surgery was a mistake. I'm not sure of anything. I would give anything to sleep for more than an hour, or not have to worry about this wafter lifting off.

Chelsea,
I'm so sorry you're having such a rough go of it. Just keep working with your E.T. nurse and I'm sure you'll find something that will work for you. Hang in there, I know it's terrible right now but I have hope that it will get better and all this will be behind you and you can start enjoying your life.

I actually had similar problems with finding the right bag to work for me. We couldn't get one to stay on and I spent an entire Christmas Eve sitting in the shower letting the stoma run because I couldn't keep a bag on it. And I was bawling.

Do you have good friends and/or family around you to bawl on their shoulder? If not, you're more than welcome to call me and I'll provide a shoulder through the phone
We're all rooting for you to get through this!
PM if you need a shoulder
Lori

Chelsea,

I am so sorry for what you are going through, no one deserves to suffer so. Just remember, this too shall pass. I wish you all the best.

ChelseaWrz,

I highly recommend this adhesive barrier to apply on your skin before applying your wafer. This stuff worked so well for me when I had my ostomy and helped me make the wafer stick like it is supposed to do. Please try this if you can. It's made by Torbot group.

Mark

Skin-Tac-H

I am so sorry this has been so tough for you. Just wanted you to know that there are people out here praying for you, and you WILL get through this.

Hugs to you.

Chelsea,
Things sound like they're really tough right now Hang in there. If you can't go one day at a time just go one hour at a time. It's okay to feel sad, what you're going through is not something that anyone should have to deal with. I'm thinking about you and I hope things will start to slowly get better. I hope you can get some sleep soon, the exhaustion is probably really compounding everything. I hope you find an ostomy system that works, just keep trying different things, Eakin seals were a real blessing for me. Hang in there, you're a very strong person

Been There. You have my sympathy/empathy

It (stinks)-I did not sleep and the good-intentioned Ostomy nurse was against the belt-which is a lifesaver/pouch wear-extender.
Unless you experience this you just do not know

You WILL find something that works
I experimented with all brands and types of rigs. Received & tried the free samples from all manufacturers.
Check my posts and especially JasonPa's for a long step by step method.

My abs went from a (mostly/near) 6pack to a minefield, looks like a cracked bowl that is upside down and missing a piece (a Crevice), nothing adhered for the first 4-6 weeks.
Now:
I use Keraya powder (for aggravated skin and to prevent its return), then permatype cement, then an Eakins seal, then a Hollister convex wafer (stays on better than Conavtec if you have a misshapen bumpy area like me, then a Convatec 'snap-on' pouch with velcro closure (Yes, I mix brands-I swab the same cement on the 'tupperware' prior to snapping in/on), then wear the 'white' belt; and have gotten up to 7 days though I average about 5 days.

My Surgeon told me it took 2 months for 1st phase of swelling to go down and things would stay on better and he was right.

I was ready to jump off a cliff and JasonPa talked me down and was a great coach.

It is tough to be patient, believe me, I know.

You get great advice here and it helps to read other posts and see you are not alone.

Good luck/good health

hey chels,

It sucks you're having such a rough go... I'm using the moldable things right now too... One thing I've found is that they never stay on- but, if you use some ostomy belt, you can really fasten it down... This will probably work better for you.. You could also try a 2 piece system by Hollister, and manually cut the hole, and try using a Hollister Adapt ring underneath of it.. When I had an end ileo, this was my preferred system. I've used it with the loop right now, and it also works great.. Stays on MUCH better than the moldable wafers... I hope you feel better soon

Hi Chelsea,

I'm so sorry that you are still going through the mill. It's really not fair but as everyone has said things do and will get better, especially when you have found the right ostomy system that works for you.

When I first had my j-pouch removed I had so many problems/complications that I, like you, started to second guess my original decision to have the j-pouch removed. I had gaping ulcers all around Wee Willie because of contracting MRSA and was actually hospitalised again because all my wounds had started to break down. I couldn't kee a wafer on more than a few hours and was having to do 3-4 changes a day.

I hated my life back then but look at me now! Wee Willie is just as much a part of my life as washing my hair or brushing my teeth. I really don't dwell on him and certainly don't regret getting him now. This will come to you too, I promise.

In the meantime, we are all sending good vibes, prayeres, healing wishes and crossed body parts for things to get better than perfect for you.

I really do hope that you turn that corner soon. We are all here for you.

Luv & hugs

Shell

CHELSEA

I think most of us here can empathize with you. I cried everyday for a month, when I had my ileostomy. It is a very emotion thing, especially for someone young. Image means a lot. Good thing is most people won't even know you have a bag. It's nice to be able to really take advantage of the handicap bathroom. I loved it when they had a sink in the stall. Makes everything easier.

My doctor started me on an anti-depressant when I was first diagnosed at 25 years old. It is called Elavil. I started with 25mg, now I am up to 100mg. This medication also helps with sleep. I had insomnia. Recently I have read that it helps with pain. Maybe this or some other anti-depressant would help deal with all of this? I know it helped me. It is great to be able to sleep the whole night through. Sleep is very important to the healing process. There are several new sleep meds out now. I hope you find some sweet dreams soon.

It has been 14 years since I had the ileostomy, but I think I remember using a hair dryer to dry the skin really good before applying the wafer. The bathroom can be very humid after you shower, if that is when you change the bag.

Take care, Barbara

Chelsea . . . a big hug to you, and know you are surrounded by caring folks here who would sit by your side in a heartbeat if we could.

I would see if I could find a more supportive ET nurse. I had to try several before finding the "one" who could read my mind when I could no longer speak audibly.

The only thing that got me through the long bouts of nausea was using medical mj. I know it is not legal in MA, but if you have the chance to try it, you might find it helps.

I might also suggest you ask for something to keep your panic level down . . . I call it that because your post sounds like me when things are quickly sliding down the slope. I take Ativan when I get like that now, because I believe it helps me breathe and think a little better when everything feels like it is falling apart around me. Your crying at the drop of a hat sounds like me on prednisone . . . if you are on it maybe you could get weaned off. I might have progressed to seriously nuts had I remained on it any longer, I had such a bad experience with it.

I hope you see a light at the end of that tunnel soon. Sending you hugs . . .

this is too familiar
chris felt the same
try calling convatec 800 number
they have an rn you can speak with
i'll e mail yo
call me if you want to

Chelsea, you have gotten all the best advice here. I can only say I am so sorry that this not only has not been an easy recovery, it has been the opposite for you.

You have my sympathy...

Jan

Hang in there Chelsea, we are rooting for you. Be kind to your self...

Chelsea,
Sorry you are feeling so bad....I hope each day brings you some improvement physically and emotionally...try to rest as much as you can and take it easy on yourself...I have read many of your past posts and know you are strong willed.....you CAN do this.....thinking of you..
Char...