May be having a stoma - what to expect?

[gracifer]

So my surgery is schedule for the 9th November, and I've been told that I may be having to have a temporary stoma/colostomy, depending on the mess I am inside, which having had the disease basically run wild for the past 3 years I'm not holding out much hope. So I feel I should at least try and get my head around it, so I thought I'd ask you guys..
What should I expect mainly? Is it painful, especially when you first get it? It is hard work to control? Do you get lots of accidents? Anything that I should be aware off?

 

[Terriernut]

Hi Gracifer. Sorry to hear that you have been having so much difficulty and that you are needing surgery. You said the disease has been running wild for 3 years? Oh dear.

Any surgery is painful yes. If you are having open surgery, more so. The heathier you are going into the surgery, the better off you will be and the quicker your recovery time. What did the Dr say, and where is the worst part of the colon?

Have a nose around in here for our stories. We have a wicked sense of humour. Is the stoma hard to get used to? Well...yes and no. It depends on the stoma! They all have their quirks, as you will find out. Its kind of like a new baby when it arrives. But, once you get used to each other, it's a breeze.

Mine saved my life, and there are quite a few of us here that were in the same shape as me. My life is 100% better than pre stoma. There are 'tricks' we use to make things better for ourselves, like tegaderm tape for instance, if you are worried about leaks. But I have never had leaks like I had emergencies before. You get to know when things are going to be a problem. Not like when you didnt have a stoma and you never knew when you were not going to make it to the loo.

Dont worry Gracifer, you wont be going into surgery alone, and you wont be alone afterwards either. We're here.
:hug:

 

[gracifer]

Thanks Yup, had it for 3 years, where they put me on pentasa but it's really done nothing and so for the past year they didn't realise I had a bowel to the bladder fistula which then turned into a bowel to stomach wall fistula, so I'm already having to deal with poo coming out of a hole in my stomach currently. It's all in my small bowel, but its strictured and inflammed, and they want remove the end of my small bowel, appendix and illium, but if it's too inflammed / messy they will want me to have a temporary stoma, because they'll fix it up again to the large bowel.

Unlike many on here, I don't find myself running for the loo often, which is why it's all a bit of a shock. Everyone says to me (none of them have stoma's etc btw) say that what I'm coping with at the moment, the pain and the unpredictability of my fistula, will mean coping with a stoma will be easy. I just don't know.
Is it always a liquid that emerges? do some things make it more active? how often do you have to empty it? what do people mean when they have to burp it?

Thank you for being so kind it's always nice to be able to talk to people who know what's going to happen. It's quite a relief to hear that people don't find it awful and it's actually a relief to have one. Personally I just want to get better, it's been far too long, and I know I will never get rid of Crohns, I just want my life back!

 

[Thunderstruck]

Im with terriernut. My stoma saved my life. I had multiple loops of small bowel that was obstructed and was vomitting feces I was in terrible shape pre-op. As in, I was given less than 72hrs type of shape! So yes, recovery was very difficult for me. BUT, I have to admit it was a GLORIOUS feeling not having the abdominal pain. You have the surgical site pain and soreness of course, but I didn't have the cramping and burning pain of Crohns. I have to admit I was angry when I woke up from surgery, I didn't even remember being in the ER let alone going under the knife. Then as the days passed, I though, man it's nice not dropping everything and running to the bathroom. Or making extra sure there is a restroom within 1 minute of where I was. You will find you have more freedom in the sense of bathroom breaks. Yes, its still nice to have one close by in case your bag fills up. As terrienut said, sometimes there are more accidents without an ostomy! I can vouch for that.

Finding the right appliance is kind of trial and error. My skin around my stoma will start to dislike an appliance after too long then I need to try a new one. Have an open mind. Try all the products if you wish, some work great for me, some don't.

Onve you get the hang of changing/draining your pouch you will do just fine. Maybe ask your Dr if you can speak to an ostomy nurse prior to surgery JUST IN CASE. It's better to be prepared. And if you don't end up with one, you'll know all about it!

I wish you luck, whatever you end up getting we'll be here to support you!

 

[maria]

I think the most thing I would consider bad would be the embarasement of it. If you can overcome that then I will say living with an ostomy let me live. No uc problems. I remember before surgery in my mind it was such a struggle everyday and after my mind was pure quiet. Having a ostomy is like changing a diaper you have your leaks and problems you just go through appliances and and find what works best for you.

 

[Karen g]

Hi I've recently had a colostomy bag as an emergancy so ididnt have time to prepare for it,at first I couldnt look at it but now it doesn't bother me at all, it's a bit painful to start not much though as long as you take it easy you be fine,everyone has leaks but there's so much available to help prevent this you be surprised.I always used to say I would never have a bag but it really does make things easier,no more running to find toilets in public.xx

 

[Terriernut]

"Is it always a liquid that emerges? do some things make it more active? how often do you have to empty it? what do people mean when they have to burp it?"

Where are they doing your surgery at Gracifer? Which hospital?

If you have an ileostomy, it is always going to be more liquid. If you have a colostomy, it will be porridge like consistancy. I think you will have an ileo to be honest.

Some foods will make it more runny yes, and you will find out what they are! We are all different. I empty mine when I have to pee. Not every time certainly. Burping can be fun, and that is done with a two piece normally. You can clear a room in no time....queing...a thing of the past! :whistleinnocently: You just open the top a wee bit and release the stink! Yes...farting at will!

 

[gracifer]

Hi everyone!

It's nice to know that everyone has had positive experiences with them! Makes it a bit less scary

Terriernut - It's UCH (University College Hospital) which is up in London. The consultant I have also works at St Marks and is meant to be quite good, I know he's going to be doing the surgery, but only met his registrar at the moment!
I did ask the guy there what ostomy I should be having, and he said colostomy. What's the difference between the two, sorry, am a bit thick on this side of things!

Aw Ok cool - I guess it's how your body reacts I suppose. Did healing take a while with it? Or was it quite simple?

 

[Thunderstruck]

Colostomy is attached to the colon. Ileostomy is attached to the small intestine. I have an ileostomy and the output is more liquid (depends on what I eat) Colostomy is more formed depending on which part of the colon its attached to If you're prepared, and it sounds like you are, recovery will be fine. I wasn't prepared so it was more difficult. You can't feel the stoma itself, as there's no nerve endings. The inscision will be sore for a few weeks. Give yourself 6-8wks for full recovery. After my surgery, my labs normalized(not sure if yours are off) and I returned to a healthy weight. Went from 86lbs to 140lbs in a few months. I slowly regained my muscle mass as well. Just take your time, eat healthy and drink LOTS of fluids. The output will be more frequent and liquid in the beginning

 

[Terriernut]

The healing took a while for me. Mine was open surgery. (I was the xmas turkey that year) Open surgery 6-8 weeks recovery. Lapro, a bit shorter. Again, it depends on how sick you are before you are going in. I was almost dead, therefore it took ages for me. Or it seemed that way at the time! If you have complications like infection or such, it can take longer. I had some complications. Staff infection and a chest infection. Took me 8 weeks to go back to work. By then I was climbing the walls! (and I was mad as hell at my body!) My brain was much faster than my body was. That was the hardest part of recovery for me...learning patience!

Then again, I work on commission so I was counting all the money I WASNT making!

You will find with a colostomy that your poo will get a bit thicker. Reason being the colon is in use, whereas with an ileo, it bypasses the colon completely. (colon absorbs the fluids) You poo will be very liquid for at least the first 6 weeks more than likely. You will have to patient (theres that word again) as your bowels settle.

 

[gracifer]

Weird q, what is the likely hood of this disease coming back? If they take it all out.. I know there's remission, which is where you get a few or no symptoms but as my Dad just said, surely if there removing the diseased part why would it come back? Or is this another case of denial? I know no-one really has the answer.. because Crohn's is different for everyone, but since you've had surgery has the major symptoms stayed. I've had one fistula and I have an amount of bowel that's strictured! I was just curious.

 

[Terriernut]

Gracifer, with crohn's yes, it can come back. It can come back from your mouth to your anus. It is very possible that with removal of the colon or the diseased parts that yes, you will remain in remission for a very long time. You have a good chance of staying in remission for a long time, as so many here have done.

 

[Samboi]

My suggestion to you - if you get the opportunity to measure up or mark where the Stoma will go - get them to actually rig you up with a prototype of the equipment you'll be wearing.
Mine sits about an inch too close to my belly button. Liquid gets under my wing at that spot and my poor little belly button has a permanent but painless rash in that spot.
If I ever need another Stoma after this one is reversed - I'll have the nurse measure it up with the equipment on so I can avoid this happening again.

 

[robbo87]

So my surgery is schedule for the 9th November, and I've been told that I may be having to have a temporary stoma/colostomy, depending on the mess I am inside, which having had the disease basically run wild for the past 3 years I'm not holding out much hope. So I feel I should at least try and get my head around it, so I thought I'd ask you guys..
What should I expect mainly? Is it painful, especially when you first get it? It is hard work to control? Do you get lots of accidents? Anything that I should be aware off?

What should you expect? I don't remember it being painful at all. It was a very surreal feeling when I first looked at my stoma. The thing you have to remember is the first few weeks are the hardest, and as time goes by, Your stoma will just be part of you life, like brushing your teeth or having a shower is.

I found it hard to clean at first mainly because I didn't have a clue what I was doing, and because I'd try changing soon after eating(bad idea for me, it starts spurting everywhere) But the stoma nurses and people around here helped me out loads, and once I got used to it, It was a lot easier.

accident's do happen. But they also happen a lot when you have crohns. You can go a long time without having problems once you find an appliance that suits you best and you learn the tell tale signs of needing to change , i.e "The Itch" as it's known. I think it's common knowledge that when things start itching, it's time to change before it's too late.

Like I say, the first few weeks are the hardest. but as time goes by, things settle down. Good luck

 

[2thFairy]

The itch... ha! indeed.