That ^ is what I got instead of surgery, for Six. Weeks. In case you missed it, after chemo on Wednesday (16th), a couple of hours later, my colostomy prolapsed. These are the basics of a prolapse, and no worries, no pics.
A prolapse is much more psychologically damaging than physical. This is not at all uncommon in colostomy or ileostomy, but no one prepares you for the possibility either, which is why you end up so damn shocked, and dealing with all the mental and emotional fallout. It would be most helpful if medical would prepare for this possibility, and yes, I know there’s no desire to alarm people, but that’s a bullshit excuse in this case. Being forewarned, just in case, would go a long way in making a prolapse less traumatic.
First thing: When Prolapse Happens: DON’T PANIC.
*:Graphic descriptors begin: When the pain reached a point where I lifted up my shirt in the car to see what was going on, I saw six very fat inches of my colon protruding, completely filling the bag, and rather than the bright pink/red she should have been, Grimhild was a faded pink, with sections so faded they were white. It was with absolute shock I was staring down, and then saw that shock mirrored in Rick’s face. Fighting panic, I choked out “can’t go home, ER.” Rick was doing his white knuckled best to not speed; fortunately, we weren’t far from the hospital. After waiting too long inside a triage room the size of a fucking closet, with tears running down my face, and trying like hell to breathe when my muscles completely seized (this was almost exactly like it was post-op, in recovery after the colostomy surgery, which was freaking me out), when a nurse finally came in. She got vitals, and info, and I got that all too rare experience of seeing shock on a nurse’s face upon seeing the prolapse. I was hurriedly taken into a room. The doctor was in quickly, and they were one I had seen before, which was a comfort. I was all hooked up to every fucking thing, then the doc started poking about. I couldn’t see what was going on, but Rick was watching like a hawk*, and the doctor was doing a form of massage, working the gut back in. Grimhild wouldn’t recede past around 2 inches, but that was normal enough. I was then sent for a CT scan, which revealed no blockage, but a parastomal hernia. It’s likely I would not have surgery at all if it was just a prolapse, but the hernia will require surgery. *Rick turned out be to be very skilled at doing this massage later at home, and teaching me how to do it. *:Graphic descriptors end:.
Most people with a colostomy or ilieostomy have minor protrusions now and then, generally during a movement, as that is the natural function of your gut, to be moving things along. Generally speaking, any abdominal pain associated with an ostomy is when a protrusion happens. If you note your abdominal pain increasing, check your ostomy- if there’s more protrusion than normal, the colour, and place your hand over to check for the normal warmth. If any of that changes (lengthier protrusion, faded colour, especially if it goes gray, and cold rather than warmth), get yourself to a doctor, stat. Don’t wait to see if it gets worse. Better to get it checked and not have anything to worry about.
If you’re like me, and this just comes out of the blue, and you’re faced with something which sends you into shock, get your arse to an ER immediately. If it’s taking too long to see you, start screaming. That won’t be difficult. If this never happens to you at all, that’s a great and grand thing. That said, it’s best to know this is a possibility, and to be prepared for it. It’s quite scary to see, especially if you are utterly clueless as to what’s happening. If you know this might happen, you’ll be much calmer. This is easily treatable, and in most cases not a surgical emergency, so you don’t need to worry needlessly about that, either. Most of the time, the gut is easily and gently massaged back in. In some cases, where’s there is an excess of fluid, you might note your doctor calling for sugar – don’t have an attack. This is a semi-standard trick to get a stubborn prolapse to retreat. Sugar is sprinkled on it, which absorbs the fluid, allowing the gut to retract. I do not recommend doing this at home, leave that to a doctor. This isn’t something you want to fuck up, and end up making things worse.
If you have a positional prolapse, where your ostomy is likely to start slithering out upon standing, walking, or other positions, you can easily cope with this at home. Lie down, and gently cup your ostomy through the bag, while gently pressing in and down, massaging her back in. You’ll most likely notice retraction beginning as soon as you lie down. When you get the retraction accomplished, when you get back up, keep your hand in place over your ostomy, then get a binder, belt, pants, whatever, placed over your ostomy, and carefully go about your business. It will take more than a bit of experimentation to discover just what does work for you when it comes to keeping your ostomy in place.
I did have a an abdominal binder order placed, went and got fitted (more or less), and wore it for a while on Wednesday, when we went out to eat, and on the way home. The binders aren’t exactly made for smaller type people, and really not for seriously skinny people. Mine is much too wide – it goes over my hip bones, and impinges on my breasts, so not overly comfortable to wear. It’s also very tight, which is to be expected. One worrying thing is that while eating, I could feel Grimhild trying to move, which is natural when trying to expel something, gas or more solid. The binder was preventing this, and that you don’t want. I’m not altogether sure just how much this would prevent a prolapse, either. So, at this point, I’ll save the binder for when I’m going to be quite active and out and about walking. When I’m sitting at my desk, and Grimhild is fresh from an active massage retraction, I’ve found that moving my chair right up to the desk edge, then placing a firm pillow between it and Grimhild, is sufficient to keeping her in place, while allowing for gas and other passage. Some people make do with large ace bandages, or find that a hernia or ostomy belt is more efficient; some people find that pants which cross the ostomy with a good pressure to be workable. It’s a matter of finding what will work best for you. If you use a latch or two part bag system, you might find it much more helpful to switch to a one piece, as the latch and two piece systems can cause injuries to the ostomy in cases of prolapse. While these injuries, usually lacerations, don’t cause any pain, they might lead to infection, which you do not need.
You absolutely must check the colour and warmth of your ostomy every single day, and it’s a good idea to do it more than once a day. Any changes whatsoever, get to that doctor. You’ll also need to monitor your overall temperature every day, and be good about it, because an infection is more likely in prolapse. If you head over 99, get to that doctor.
As always, as I remember all the stuff I forgot, I’ll edit to add at some point.
ETA: It now occurs to me that I was helping to move furniture a couple of weeks before this happened. In retrospect, that was a very stupid thing to do. Don’t be moving furniture.
Thank you for this. Obviously we want to keep up with how you’re doing, but then you take the time to add in all the practical advice and information that someone should have given you before you ever encountered a prolapse. That caring in the middle of everything that’s going on for you is part of what makes you someone I look up to.
It’s bad of the doctors not to warn you about the possibility of a prolapse, it must have been terrifying. Sorry you had to learn about it by going through it and I hope it settles down now. Why did they decide not to operate?
It sounds as if some custom corsets, with an easy access to the ostomy section would be good and at least would be prettier than the binders. If you got white ones you could decorate them yourself with farbic pens, I am imagining the wonderful things you would do and smiling. Realisticly suspect that you don’t like that restricted feeling, even when you know it is keeping the ostomy in place, but at least if it fitted properly it would be more comfortable.
Seedy, thank you so much.
Jazzlet:
Because I’m still in chemo. Chemo slows the healing process, and my last cycle is on the 30th this month. It will be 3 weeks after that, that the labs and CT will be done, and my surgeon doesn’t want to do anything until then, so the surgery will be slated one week after the final tests. This will most likely push back my radiation start, which I’m not happy about, but there’s nothing for it. It’s not the prolapse which requires the surgery, it’s not usually done unless a prolapse gets truly out of control. It’s the parasternal hernia which necessitates the surgical fix, but both will be dealt with at the same time.
Oh, and I have an exquisite corset! Unfortunately, when you reach skeletal skinny, corsets are exquisitely uncomfortable to wear. They are much better when you have a comfy bit of plump going on. An abbreviated waist cincher might do the trick though, and manage to be comfy too. Gives me the opportunity to do more shopping at Corset Story. :D This or this might work well. Or a waspie.
Caine
Looking online at the abdominal binders reminded me of Japanese haramaki.
People in Japan are great believers in keeping their middles warm and there are belly-bands for everyone, babies to sumo. Maybe something like that would work for you.
https://global.rakuten.com/en/category/304009/
Chigau, oooh, that might be perfect! Thank you!
Dang Caine, to say *shit happens* is an understatement. Sounds like you have a good support group though, even if my only support at the moment is the Frasier Crane “I’m listening”. Rant away.
Thanks, Nerd. Yeah, life for me is pretty much one ‘shit happens’ after another.
Caine, if Rick feels the need to “talk to someone”, I’m sure you can give him my login e-mail address. You know my history. I’ll “be listening”.
Thank you very much, Nerd. I’ll let him know.
I think would most certainly panic in your or Rick’s situation, especially not knowing what was going on. Your description sounds scary as hell. Thanks for writing this information, better to have it and not need it than the other way around. It really sucks that no one prepared you for it.
Nightjar:
Thank you, and yes, I think it does suck that this isn’t a standard part of a “now you have an ostomy” talk, or information provided. I’m sure some hospitals do include this information, but it’s certainly not a standard part of it. Most of the research I did before writing this showed people who ended up with prolapse in a panicked run to emergency, not having the slightest idea of what’s going on. This triggers all the bad buttons, because if there’s one thing we all know, it’s that the inside bits do not belong on the outside. This hits you so damn hard on mental and emotional levels.
Oh gak, my heart was in my throat when I started reading this. I’m relived it was reduced without surgery. Did the rest of the CT look good?
And chigau, belly bands? I never heard of them. I hope it helps our Esteemed Blogger. It’s not for me however. My belly already has it too good.
Raucous Indignation:
Yes. The hernia was the only bad news. Otherwise, everything is clear and working the way it should, which was a major relief. The haramaki recommended by Chigau were most helpful. I ordered a silk blend, and then this particular compression band, which I think will be a good solution -- lighter weight than the binder, and easier to wear more often.
They look far more comfortable than a waspie, as well as being a lot cheaper and easier to wash. Good one Chigau!
I’m glad to hear you’re doing better today, but what a traumatic story. It must have looked pretty bad if you shocked an ER nurse. Sorry that it means more surgery for you. Also, kudos to Rick for learning how to manage it at home.
We’re having issues with abdominal binders here, too. Mr. Voyager needs to wear one for the next 3 -- 4 months to keep his newly repaired bowel and hernia from tearing. He says the support feels good, but the damned thing keeps folding up at the back He’s quite round through the middle and the fabric at the back doesn’t get as taut as the fabric at the front so it bunches up. Maybe a belly band would fit better. I’ll have to check them out. Thanks for the info chigau.
I hope it helps.
I do not know what the standard informational procedure on ostomies is around here and I hope to never find out, but I really think that “not wanting to alarm people” is bullshit. It is the same line of thinking that gives us the wonderful “abstinence only sex ed”. It is never helpful to not know what might happen.
I am glad you are at home and somewhat OK for now. Bad about the hernia. Keep safe and yes, do not lift heavy objects up to and including furniture whilst your abdominal wall ist compromised.
Voyager:
I noted my surgeon wasn’t over enthused when mentioning the binder; I enquired, and all he’d say is “they help some people”. I did notice that when we were out eating, that sitting in the booth, there was a notable gap, right over and to the side of Grimhild, where the velcro closures are. I can only think what a problem that might be. There were a great many belly bands at Chigau’s link specifically for men, and they seemed to have more of a compression element than those for women. I have to be seriously pushed to shop at amazon for anything, but I found that nifty compression band by searching ‘haramaki’ there.
I think, from my very limited experience, that abdominal binders cause people more problems than they help, which is why there are so many alternatives to them when you go looking. The other good thing about the compression band is that I can actually cut that down if it’s too wide (most things are, I don’t have the standard space between ribs and hips) and easily hem it. That goes for the haramaki, too. I’m all for things which can be easily customised! I really hope you find something better for Mr. Voyager.
Chigau:
I have no doubt it will. It’s beyond helpful to have friends who can come up with such great alternatives, thank you so much!
Charly:
Thank you. That was an incredibly stupid thing to do; one thing you have to be aware of is your desire to be able to do regular, normal stuff can overtake your common sense. I’ll certainly be aware of it in the future, but it would have been better if I’d stopped to think before the stupid hit, especially as Rick was quite worried, and kept asking if I was okay. I got much too stubborn for my own good.
Holy crap that sounds terrifying.
When my mother had to go to the ER due to the dressing on her biliary drain slipping and the flow stopping, we realized that due to the placement of the drain and my being across the room when the dressing was changed (sterile procedure), neither of us was quite certain what the dressing was supposed to look like! We were both pretty certain that the bit where the tube entered her body shouldn’t be all out in the open air, though. When it was replaced the nurse suggested taking a picture of it, and I don’t know why that wasn’t suggested the first time it went in, since the thing is unusual enough that nobody at her local hospital could change the dressing.
Incidentally her tumor markers are a tenth of what they were when she started chemo, which has to be good, right? The surgeon said responsiveness to chemo is the biggest factor as far as survival goes, so we are cautiously optimistic.
Hope everything stays where it is supposed to now. I honestly don’t think I could have driven to the hospital, faced with something like that. Rick has all my admiration.
Ledasmom:
Jesus Christ! That’s unbelievable. How in the hell are you supposed to take care of things when you don’t have the slightest idea of what to do? That had to be quite frightening for you both, especially as infection is such a concern.
Yes, that’s great! And yes, the response to chemo is crucial. I’m hypersensitive to it, so my dose was reduced for these last two cycles, just to get me through. Between the hydration and the reduction, I’m finally managing okay, and my tumor markers keep going down, so that’s all good.
It was all very disorienting because how are you supposed to know what is normal about an artificial outlet from the body? It’s not like there’s been a lifetime of figuring out what that’s like. I have never had such a feeling of constantly trying to catch up and understand what was going on.
What my mother found most irritating was the “it’s blocking- you have to go to St Cloud right now- really right now- yes you can drive if you really don’t want the ambulance” and then nothing gets done until well into the next day. I understand they did take her vitals and so forth when we arrived, but there really needed to be more communication to the people who arrived at about two in the morning in a worried state.
My mother found her first, emergency transport to St Cloud by ambulance traumatic, therefore we drove.
That must have been so very frightening. :-( Really sorry you had to go through that, it really sucks. I’m so glad Rick was there! That guy is amazing. You two are so lucky to have found one another!
Ledasmom:
That seems to be standard procedure; it was tried on me with the prolapse. “Okay, you need to stay here, then tomorrow…” Out came a very firm “No, can’t do that, I’m not prepared.” (Sometimes living out of town is handy.) As it turns out, if I had stayed in hospital, it would have been at least noon the next day before I was told “no big deal, go home”, and I would have been bored out of my mind and absolutely furious. Unless it’s a scheduled surgery, I fight hospital stays.
Kestrel:
Yes, he most certainly is, and I’m past lucky. Even better, all this? It happened the day before his birthday. Some present.
On the other hand you are a walking monument to the discredit of intelligent design.
Busterggi:
:snort: That I am.