Anyone had a stoma ?

[Tricky Dicky]

Don't worry if you don't know what one is (I didn't until 12 days ago), if you knew anything useful, you would know what one was.

I had an op 12 days ago leaving me with a stoma for a while. I'm having "leakage" issues, which I'm finding very hard to cope with. Just wondering if anyone had any useful info to share.

 

[Jam The Man]

My dad had one, and had a few leakage issues, I cant recall how it got better other than extra padding used.

What i would say is that after 1 year, he was offered a reversal operation...which he took.
What a mistake...it was the worst decision he ever made and he's had TEN further operations since then due to complications directly relating to him opting to revert back.

 

[symyjym]

Didn't know anything about it apart from Googling it now, so you have my sympathy on this as it sounds very depressing. On the plus side, if there is one, you say that it is only for a while and I presume not permanent so I can only wish you a speedy recovery

 

[Tricky Dicky]

Didn't know anything about it apart from Googling it now, so you have my sympathy on this as it sounds very depressing. On the plus side, if there is one, you say that it is only for a while and I presume not permanent so I can only wish you a speedy recovery

Thank you. Yeah. It is pretty tough. I had the op to get rid if a colon tumour, which I thought would be bad but bearable. I woke up with the stoma due to complications. It wouldn't be too bad if it just worked, but to be recovering from a major op and to have continual probkems with this, it is very, very hard. Fortunately, I have a fantastic sister and her husband who have moved in to help, and as she is a nurse, I do have assitstance from both of them, so that's a great help.

 

[Tricky Dicky]

My dad had one, and had a few leakage issues, I cant recall how it got better other than extra padding used.

What i would say is that after 1 year, he was offered a reversal operation...which he took.
What a mistake...it was the worst decision he ever made and he's had TEN further operations since then due to complications directly relating to him opting to revert back.

WhooH, nobody has mentioned that. They said I'd have this for 4 to 6 months while my colon recovered, then we'd look to reverse it. It sounded like a rather simpler op with keyhole, so I'm going to have to discuss and think about this.

Pretty sure I'll want it reversed, I can't imagine living like this for the rest of my life, although if we can get over these teething problems and know how to live with this in a practical way and resume some sort of life, maybe it won't be too bad.

Early days and I'm sure it will get better, but that doesn't help me a lot right now.

 

[banjo]

Don't worry if you don't know what one is (I didn't until 12 days ago), if you knew anything useful, you would know what one was.

I had an op 12 days ago leaving me with a stoma for a while. I'm having "leakage" issues, which I'm finding very hard to cope with. Just wondering if anyone had any useful info to share.

Get well soon.

 

[Since1982]

I had one for about a year when I had my colon removed and before reversal surgery (which for me was a great success). A few thoughts 1) visit www.iasupport.org Loads of practical info and a good forum where you can ask anything and get some great ideas and support. 2) 12 days is still early after surgery so there are more likely to be issues in this phase as your body heals - in my experience it gets better 3) you should be able to order lots of different seals, types of pouch etc to work out what works best for you - speak to your supplier 4) you should have access to a stoma nurse, again in my experience they were great although overworked and helped me through the inevitable issues 5) like most people, and I'm sure it will be true of you too, I got on top of the practical and emotional challenges of it all and was able to work, holiday etc etc with few issues.

PM me if you want to chat in more detail.

 

[Jam The Man]

Sincere apolgies if my post sounded scare mongering in any way. Clearly the majority of reversal ops work very well - my dad was just rather unlucky!

Hope you get well soon

 

[Since1982]

Sincere apolgies if my post sounded scare mongering in any way. Clearly the majority of reversal ops work very well - my dad was just rather unlucky!

Hope you get well soon

And it can depend on what is being reversed and how - lots of variations as I understand it!

 

[driller]

My dad had one, and had a few leakage issues, I cant recall how it got better other than extra padding used.

What i would say is that after 1 year, he was offered a reversal operation...which he took.
What a mistake...it was the worst decision he ever made and he's had TEN further operations since then due to complications directly relating to him opting to revert back.

thats it cheer him up

ever thought of holding your tongue and not saying anything?

 

[Tricky Dicky]

I had one for about a year when I had my colon removed and before reversal surgery (which for me was a great success). A few thoughts 1) visit www.iasupport.org Loads of practical info and a good forum where you can ask anything and get some great ideas and support. 2) 12 days is still early after surgery so there are more likely to be issues in this phase as your body heals - in my experience it gets better 3) you should be able to order lots of different seals, types of pouch etc to work out what works best for you - speak to your supplier 4) you should have access to a stoma nurse, again in my experience they were great although overworked and helped me through the inevitable issues 5) like most people, and I'm sure it will be true of you too, I got on top of the practical and emotional challenges of it all and was able to work, holiday etc etc with few issues.

PM me if you want to chat in more detail.

Thanks. I had my op at RSCH but live in Shoreham, so my stoma nurses should be the ones in Worthing, but the ones at RSCH are helping me at the mo. They are incredibly busy, but as I have dialysis 3 times a week at RSCH they can come and see me while I'm doing that, as she did yesterday and will do again tomorrow.

I think it's a case of finding what works for me, but is extremely frustrating trying to get to that point.

 

[Since1982]

Thanks. I had my op at RSCH but live in Shoreham, so my stoma nurses should be the ones in Worthing, but the ones at RSCH are helping me at the mo. They are incredibly busy, but as I have dialysis 3 times a week at RSCH they can come and see me while I'm doing that, as she did yesterday and will do again tomorrow.

I think it's a case of finding what works for me, but is extremely frustrating trying to get to that point.

Understand. I had more than one moment where I thought it just could never work and I had some issues with recovering from the emergency colon removal as well which rather confused things! I too was at the RSCH (level 9?). I'd stress trying loads of different gear. As I recall I ended up using a system whereby the sealant ring that attaches to the skin stayed on for three or four days and then I attached a new pouch to it as necessary. But that might be too much detail for here!

 

[Mo Gosfield]

This is all from personal experience...so I hope it helps.
The shorter the period of time that you have the stoma the better. I know that sounds obvious but I 've known a lot of people that have gone for a revesal op after 9-12 months and they almost always hit complications. I don't know whether the body gets used to a new way of working or what but I had mine reversed after three months and it was fine. Yes, your body has to get used to passing solids again but eventually it settles down.
I had terrible leakage problems, sometimes changing bags three times a day. Accidents at night and at work. I found the whole short episode extremely degrading and embarrassing. I was on edge every time I went out, not knowing whether the bag would hold or not. I would wake up at night and the bag would be bursting at the seams.
I kept complaining to the stoma nurses ( who were superb ) and they did try different bags. Don't just settle for one type. There are a number of options. Some are larger. Some have valves on the bag rather than a velcro type strip. Some have much better and wider adhesive strips round the outside of the bag. Don't just get fobbed off with the cheapest option...keep complaining...the nurses will work with you.
Eventually one stoma nurse said..." I know what your problem is...your main area of leakage is where your bag is stuck to a natural crease in your stomach..when that creases, the adhesive in that spot is under pressure and is eventually lifting." She switched me immediately to a bag with much more adhesive and it was considerably better.
I know exactly what you are going through. Its bloody awful at times and you wonder what you've done to deserve it. See if there is an option of an early reversal op. Some doctors will resist but be persistent. This is impinging massively on your quality of life and affecting your well-being. Keep changing bags until you find one that suits.
Just one quick point. Have you got to have chemotherapy? If so, they will delay the stoma reversal until that course of treatment has finished. The only way that they will do a reversal before that is if they feel your stoma won't cope with the effects of the chemo..i.e your movements will be a lot looser and it would put too much strain on the bag. It just depends how active your stoma is. They all vary at the rate they ' pump out ' liquid.
Its not easy at times but stay positive. Best Wishes.

 

[maltaseagull]

To all of you who have gone through this experience, you have both my sympathy and respect.

It just makes me realise how lucky I am to have good health.

 

[Tricky Dicky]

Understand. I had more than one moment where I thought it just could never work and I had some issues with recovering from the emergency colon removal as well which rather confused things! I too was at the RSCH (level 9?). I'd stress trying loads of different gear. As I recall I ended up using a system whereby the sealant ring that attaches to the skin stayed on for three or four days and then I attached a new pouch to it as necessary. But that might be too much detail for here!

Yup, level 9A for the gastro stuff, and I have to say, pretty much everyone up there were terrific. Considering it was a big op, I had that on a Thurs, was moved out of the acute bay the following weds, and home last Fri - so just 8 days. Was supposed to be keyhole, but they couldn't do it, so opened right up.

We tried a ring yesterday - weird stuff, strange consistency, not easy to work with. When that leaked it took ages to get the waxy stuff off my skin before we could pit a new bag on.

 

[Tricky Dicky]

This is all from personal experience...so I hope it helps.
The shorter the period of time that you have the stoma the better. I know that sounds obvious but I 've known a lot of people that have gone for a revesal op after 9-12 months and they almost always hit complications. I don't know whether the body gets used to a new way of working or what but I had mine reversed after three months and it was fine. Yes, your body has to get used to passing solids again but eventually it settles down.
I had terrible leakage problems, sometimes changing bags three times a day. Accidents at night and at work. I found the whole short episode extremely degrading and embarrassing. I was on edge every time I went out, not knowing whether the bag would hold or not. I would wake up at night and the bag would be bursting at the seams.
I kept complaining to the stoma nurses ( who were superb ) and they did try different bags. Don't just settle for one type. There are a number of options. Some are larger. Some have valves on the bag rather than a velcro type strip. Some have much better and wider adhesive strips round the outside of the bag. Don't just get fobbed off with the cheapest option...keep complaining...the nurses will work with you.
Eventually one stoma nurse said..." I know what your problem is...your main area of leakage is where your bag is stuck to a natural crease in your stomach..when that creases, the adhesive in that spot is under pressure and is eventually lifting." She switched me immediately to a bag with much more adhesive and it was considerably better.
I know exactly what you are going through. Its bloody awful at times and you wonder what you've done to deserve it. See if there is an option of an early reversal op. Some doctors will resist but be persistent. This is impinging massively on your quality of life and affecting your well-being. Keep changing bags until you find one that suits.
Just one quick point. Have you got to have chemotherapy? If so, they will delay the stoma reversal until that course of treatment has finished. The only way that they will do a reversal before that is if they feel your stoma won't cope with the effects of the chemo..i.e your movements will be a lot looser and it would put too much strain on the bag. It just depends how active your stoma is. They all vary at the rate they ' pump out ' liquid.
Its not easy at times but stay positive. Best Wishes.

Thanks Mo, that's interesting and useful. I was told my body needs to fully get over this op before attempting another, and they estimated 4-6 months, although then there could be a waiting list for the reversal. I am complicated given that
I have renal issues too.

Not sure yet about chemo, visually they think they got everything, but I need to wait for the results from histology.

 

[The Oldman]

All the best TD. Full of admiration for folk who have to have a stoma. Do hope that things get easier for you soon.

 

[DIFFBROOK]

Tricky PMd you

 

[Tricky Dicky]

Tricky PMd you

Read and replied. Thx.

 

[BlockDpete]

Best wishes TD,

My Mum had a stoma for a while, after her bowel cancer op. Better than having cancer of course, but I don't think she ever got used to it. Though she was quite hesistant at having the reversal done as the original op was very tough. She went through with the reversal though, and it was fine.