Retract/prolapse

[UnXmas]

Does anyone else's stoma do this?! My stoma goes from about ten centimetres prolapsed to completely retracted (no stoma visible at all) and everything in between, constantly changing. My first stoma retracted and had to be surgically corrected because the output couldn't get out. My second stoma was quite flush, then prolapsed a couple of times but I put it back in. Now I'm on my third stoma and it's doing this.

I really just want to know if it can be dangerous to have a stoma prolapsing this far. I've googled it, and not found anything, but if you google "retracted stoma" you don't come across anything about output not being able to get out, but that happened. I do tend to have unprecedented things happen that Google doesn't know about. My stoma nurses and surgeons hadn't come across that retraction problem before either.

So besides how gross it looks having that much bulging intestine hanging out of your stomach (this stoma doesn't seem to care about being discreet ) has anyone heard of a prolapsed stoma, or a stoma that continually switches between prolapsed and retracted, being dangerous or leading to problems in how it functions? It spends most of the time prolapsed, then every couple of days or so it disappears back inside. It actually functions far better than my previous stomas - they used to block the moment I ate any fibre, but with this one I've been eating fruit every day with no problems. The surgeon said I'd have less problems with blockages with this one because it's an end ileostomy not a loop, but she also said it wouldn't have the same tendency to retract or prolapse, and she was definitely wrong there.

So far the only problem I've had is that sometimes I have to put a new bag on because it's either stuck under the baseplate when it's trying to prolapse out or it retracts and goes under the baseplate. I've had this stoma since September and it started prolapsing several weeks ago, first retracted a few weeks ago I think, but it's doing both more and more frequently and the length of intestine visible when it prolapses is getting longer and longer. I have to pick it up with one hand to post it through the hole in the bag when I put a new bag on.

I'm starting to wonder if I'm heading towards another surgery. I don't think my stoma nurses will have the expertise to advise about this. Is it worth making an appointment with my surgeon now in order to prevent complications later, or are there other people who have stomas that prolapse this far?

 

[VeganOstomy]

I wish I could offer you insight. I think that if your docs want you to have a fourth surgery to correct this, they need to find out why you're having this tendency to prolapse first. From what I understand, as long as it's not creating any issues, it's not something you'll want to mess around with.

Sent from my SM-N910U

 

[UnXmas]

Thanks. I've always had a tendency to prolapses - I used to get rectal prolapses before I had the ileostomy. It's related to my other medical conditions.

Having thought about it a bit more, I think, since I can't contact my surgeons directly, I might ring my stoma nurses and see if they think an appointment with a surgeon is necessary. Last night my bag leaked because my stoma had retracted while I was asleep, and the opening of the stoma had gone under the baseplate. So even if this isn't dangerous, it may start becoming inconvenient. Maybe a stoma nurse will know of some type of bag or other accessory that could help with this.

Btw does anyone have any idea of the etiquette in this situation: I've had the same surgeon for years, he's operated on me many times, did my first two stoma surgeries and is a wonderful doctor who's helped me so much. But my last surgery, when this stoma was created, was done by a different surgeon because it was an emergency and she happened to be on call. Everything I saw indicated she is also a wonderful doctor, but even so, I want to stick with my usual surgeon. Will it be alright to ask to see him even though he didn't create this stoma?

 

[UnXmas]

I measured the prolapse yesterday and it was 12cm. It seems it retracts every night - a doctor told me that you can help make prolapses go back in by lying on your back; I usually sleep foetal position in my right side, but I guess lying down might be causing it to go in and that's why it does it especially at night. But then it goes through a couple more retract/prolapse switches during the day. In the evening, which is when my stoma is most active, seems to be when it is most prolapsed - the 12cm I measured yesterday evening. The retraction seems to happen very quickly usually: it can be fairly prolapsed and then suddenly go right in, whereas when it's going the other way, the prolapsing is slower.

I haven't had any more leaks because I seem to be able to feel when it changes usually. When it goes in, it feels like a lot of gas is coming out, but like the stoma is having trouble getting the gas out and is really forcing it out. When it goes out I get a painful pinching sensation (maybe because it often gets trapped under the baseplate?). Both these feelings only last a moment, but they're usually strong enough to wake me if I'm sleeping, and the leaks don't start right away as it takes a while for output to get right under the baseplate, so I have time to go and change it. It results in changing the bag very frequently.

But I was a bit worried by how it looked when prolapsed yesterday evening. That was a lot of intestine hanging out. (Doesn't help that it was moving around and looked like a snake, with the end curling round like the snake was moving its head... has anyone seen the film Tremors ? It made me think of the moving snake-like tongue things that come out of the big monsters' mouths .) How much is too much? Is it possible I'll end up with a load of intestine hanging out that can't get back in? And is it harmful for the intestine to be outside the body? I mean, is there something special about the intestine used to make the stoma that makes it ok to be out that wouldn't apply to the rest of the intestine?

 

[2thFairy]

Intestine can be outside of the body just fine as long as it is kept moist and protected, so in the case of ostomies, the bag keeps it moist and healthy.

 

[UnXmas]

Thanks. I'm going to ring the stoma nurses tomorrow now the holidays are over and see if this needs sorting out.

 

[Muppetgirl]

Thanks. I've always had a tendency to prolapses - I used to get rectal prolapses before I had the ileostomy. It's related to my other medical conditions.

Having thought about it a bit more, I think, since I can't contact my surgeons directly, I might ring my stoma nurses and see if they think an appointment with a surgeon is necessary. Last night my bag leaked because my stoma had retracted while I was asleep, and the opening of the stoma had gone under the baseplate. So even if this isn't dangerous, it may start becoming inconvenient. Maybe a stoma nurse will know of some type of bag or other accessory that could help with this.

Btw does anyone have any idea of the etiquette in this situation: I've had the same surgeon for years, he's operated on me many times, did my first two stoma surgeries and is a wonderful doctor who's helped me so much. But my last surgery, when this stoma was created, was done by a different surgeon because it was an emergency and she happened to be on call. Everything I saw indicated she is also a wonderful doctor, but even so, I want to stick with my usual surgeon. Will it be alright to ask to see him even though he didn't create this stoma?

I can identify with not wanting to offend people who we depend on in a medical crisis. Though its absolutely fine to see your usual surgeon. Neither of them will bat an eyelid.

I'm curious as to why you cannot contact them directly? If you don't have the contact details for the individual surgeons, could you ring the department and ask?

 

[UnXmas]

I've never had a consultant you can contact directly (and I've seen an awful lot, in all sorts of different areas of medicine!). If it's a consultant you've seen before, you can ring their secretary, though usually only about booking appointments, etc., not with medical enquiries. After being discharged from an in-patient hospital stay, you can ring the ward you were on and ask the nurses about medical matters, and there have been a couple of times when I've done that and the nurse got my surgeon to ring me back because she couldn't answer my questions, but that's an exception rather than the rule. Generally if you want to speak to a surgeon or consultant, you have to either ask their secretary for an appointment or ask your GP to refer you again (usually you need the GP to do it if it's a consultant you haven't seen often or haven't seen for a long time, but it depends what arrangements the consultant made last time they saw you).

So I could ring either surgeon's secretary and book an appointment, though the waiting list is usually several weeks for non-urgent appointments. The stoma nurses I can ring and discuss medical matters on the phone and they can book me an appointment to see them face-to-face if necessary, usually their waiting list is a few weeks long, though when my first stoma retracted they saw me the next day because it was urgent, and then when they saw the problem they got the surgeon to see me that same day as well, because when they saw it they realised it was definitely urgent!

 

[Muppetgirl]

I hope whoever you speak to, that you get good care from them and they help you figure this out!