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No holds barred

hello folks, been reading the downsides of having a stoma thread and appreciating the lighter side of things with one , but wondering after the op what you actually went through,pain, annoyance wise and if anyone regrets it?,i have to face facts that my large bowel is no longer able to be rejoined because of a large abscess in between the two areas that were due to be taken out,, this is why an op was cancelled recently because the surgeon sensed what my reaction would be, if anyone wants to comment on the recovery/ niggles and downsides please feel free, as i kinda feel ill be putting myself through hell for the sake of other people

thanks
 
I have absolutely no regrets! The surgery recovery is a bit difficult, as your body is really fighting to adjust without a colon. It's a shock to the system. I was very fortunate in that somehow I'm a freak and had very little pain from the surgery, but I did have problems with dehydration, ileus, and an extremely high heart rate that all caused a prolonged hospital stay. Adjusting to a stoma is a bit weird, but for most people it really just starts to be a common thing after a few months.

So for me....no regrets.
 

Nyx

Moderator
I have no regrets either. Like 2thFairy, I had very little pain as well, but did have a few complications from the surgery. I developed 2 blood clots in my lungs, and wound up with a blood infection from the PICC line they put in. Adjusting to the stoma was pretty easy once I got the right appliance and a routine. It was mostly just nice not being in pain every time I even thought I had to go to the bathroom. And eating anything and everything is pretty cool too...lol
 
It's the same for me I have no regrets about having my stoma. It's like i have a new lease of live as i don't have to think as much as i did about toilet stops and i get to choose (to a certain extent) when to go and empty my bag.
I did suffer with a bit of pain for about a week after the op but I has dehydrated and no one could get a needle in any of my veins to give me the drugs I so badly needed but once i got that sorted it was game on so to speak. I now have to have a stoma permanently and I know it's for the best as the symptoms with my rectum are returning slowly and the GI has said the drugs are no longer working to be able to save it.
I do have to think about the clothes i wear just so i can feel comfortable but i wouldn't go back to the way I was for love nor money.
 
thanks for the replies folks, guess ill find out whats happening in a few weeks after i get this drain out of my large bowel abscess, still holding on to the hope that there will be some normal tissue for the surgeon to work with, but at the mo i cant see past the "cons" against the "pro;s" at the mo, just not one to take to changes, too much a creature of habit must be, lol

thanks again
 
I have had mine for 25 years. Life or Death choice, so, I can't really regret. But, it gets to me sometimes knowing I really should not be here. But, maybe that is just me. Pain, hurts like hell, but a few weeks after you'll be fine. You certainly won't miss the pain of having diarrhea all the time, that for sure. I healed fine from first surgery. Second surgury, when the completely removed the rectum, I got an infection in the sutures on my stomach. Not good. Also, the healing time for the rectum was long. Lots of packing and waiting for it to finally heal up. And if you don't pack it well you can get pockets of infection and you have to start over from that point.

As far as getting use to the illiostomy. It is a learning curve. You'll have spillage, your bag will fall off, you won't always get the pad just right. Like previously stated, you'll learn you need to wear different clothing, watch how you sleep, don't lean on, etc. I think the thing I miss the most is sleeping on my stomach. Don't feel bad if you have an incident, I still have them from time to time, especially when I am feel well and can be active. Sometimes I will just bend the wrong way and next thing I know it is leaking out the side of the pad.

But, not having that nasty old colon trying to kill me anymore makes all the work worth the effort. Beside, my cousin is a paraplegic, so it is all relitive. Life is what you make it.

You will be fine.

Peace and love.
 
thanks higbonzo, exactly what i wanted to hear, cant see myself putting up with certain things like you described, had my share of packing wounds before and i will avoid it at all costs lol, the sleeping etc is another currently cant sleep on my front for the last two weeks because of a drain tube and its absolute hell, may as well be a zombie due to the lack of sleep and losing interest in everthing, thanks for the honesty in your post
 
thanks higbonzo, exactly what i wanted to hear, cant see myself putting up with certain things like you described, had my share of packing wounds before and i will avoid it at all costs lol, the sleeping etc is another currently cant sleep on my front for the last two weeks because of a drain tube and its absolute hell, may as well be a zombie due to the lack of sleep and losing interest in everthing, thanks for the honesty in your post
You are welcome.

That's kinda my thing. Problem is, "Some love me for it, and Some hate me for it"

I hold back a bit on this site, I really do understand what it means to have a chronic illness. And I don't want to scare people But, I try to make sure people get the point, or the "just" of what they are up against.

I got this saying, If you can say "this is my worst day ever, it is not your worst day ever" Same goes for your best day. No one can see the future. I try to focus on the possitive because it tends to make me miss the negative when it comes around.

Take care.

Later
 

Nyx

Moderator
Higbonzo...why can't you sleep on your stomach? I've had my stoma for 3 years and I sleep on it all the time without any problems at all.
 
Higbonzo...why can't you sleep on your stomach? I've had my stoma for 3 years and I sleep on it all the time without any problems at all.
Do you have an Ileostomy, or Colostomy? Giant diiffernce between the two. Mine is an Ileostomy.

My intestines are way to active. If I fall to sleep on my stomach one of two things will happen. 1. I will feel like I have blockage and will start having pain which should wake me up. 2. If I don't wake up, the pressure will blow my wafer off. It so bad that if my PJ's elastic gets over my stoma, or I have a pillow lie on the stoma, it will blow the wafer sides out. If I have a real thick food come through and I don't get it to move down off the wafer and into the bag, and then it is follwed up by a liquid discharge, it will blow the side of my wafer out.

I get out of my stoma what I put in my mouth, tomato juice in, tomato juice out, triscit in, triscit mush out. It needs emptied all the time. I can get some foods through me so fast I don't even know how it is possible. And some things come out with great pressure, I can easily squirt the distance of the tub if it is really on a roll.

So, that is why I can't sleep on my stomach.

Later...
 
I sleep on my stomach with an ileostomy. I always load up on water before bed so that I will have to pee bad enough in the middle of the night to wake up and empty my bag before it becomes an issue. I also make sure the bag is to the side of my body more than completely under it.

My surgery was not planned. I had a bowel perf during colonoscopy and woke up from exploratory surgery with a bag. The surgery itself I don't remember of course, but recovery wasn't super awesome. I did have some pain and I use morphine the first day after surgery with a pain pump button. After the first day I had toradol through my IV every 6 (maybe 8 hours?) and that was enough to control the pain for the next two day or 3 days. After that I was only using Tylenol because I refused to use anymore narcotics. I was fine (I didn't think I needed anything stronger than that but I also NEVER say I'm in a 10 of 10 pain... the highest number I used to describe pain after surgery was 7 and I stayed at a constant 2 or 3 with the pain meds/tylenol).

The worst part for me was the NG tube afterwards. I only had it one day but they put it in all coiled in the back of my throat and didn't believe me when I said it wasn't in right. So it sat that way for a while till I complained enough and they took me for an xray and found it coiled. This coiling caused me to get nauseous and so even though it was in my stomach and sucking up the stuff in there, I was dry heaving after surgery and it hurt SO bad. But ultimately it was nothing Zofran and Phenergan couldn't fix.

I didn't/do not have dehydration issues because I refused to get dehydrated. I drank a ton of water and gatorade for the first month afterwards. The docs at the hospital told me I would be coming back dehydrated and that they couldn't let me out so I had to stay for an extra 3 or 4 days. WELLL I wanted to prove them wrong, so I did. :) Stay up on your liquids and electrolytes and you'll be fine (you'll just pee ALL the time)

Like someone else said: you will have leaking in the beginning, you will put some piece of the bag on wrong or not well enough, you'll deal with skin issues. BUT having a stoma is not that bad. I know if I had to have one the rest of my life, I would be okay.

Mine is being reversed in January.
 
thanks again folks, yep its basically the pain bit after the op that im not looking forward to, as ive had just about enough of it lol, and know that packing wounds etc and dealing with the skin rashes is enough to make me quit,it isnt the actual stoma itself im worried about, but the good news is that maybe if this abscess on the transverse large bowel calms down there will be enough good stuff left to do a "join up"keeping my fingers crossed, thanks again.
 
well, appointment was for 9.30 am today , they forgot all about me lol, waited till 1 pm then asked about what was going on, told to go home and theyll phone in the afternoon, never happened, so still dont know whats happening, want to get rif of this drain if poss as it absolutley stinks, frightened to go into shops at the mo, gonna be a phone call tomorrow morning
 
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