Just when I thought I’d experienced pretty much everything I was going to with this cancer stuff. Then, without warning, my guts are hanging out. Literally. (Yuck. Even the name – “prolapsed stoma” – sounds disgusting!)
I’ve been doing really well lately, feeling better, gaining weight, keeping busy. Then, last Thursday I noticed my stoma seemed to be “sticking out” a bit more than usual. It was about time to change the ostomy bag anyway, so I went into the bathroom, removed the bag and – gasp! – there was about an inch of, well, intestine protruding out of my stoma. Let me just say this is not something you want to see (don’t worry, there are no photos for this post!).
It wasn’t painful, other than emotionally. I will admit I pretty much freaked out. I did have the presence of mind, though, to immediately phone my surgeon’s office. I got Dr. Brown’s nurse, Blanca. Usually she’s very helpful and sweet. Perhaps I caught her on a bad day. Between sobs, I described what was happening, and her rather un-sympathetic response was, “Well, that happens sometimes. If it gets worse, you should go to the hospital.”
I was choking back tears of panic. She asked me to hold a moment. When she returned, she said she’d been able to speak to Dr. Brown between patients and he suggested I lie on my back to see if the intestine would go back in on its own. She said he wasn’t too concerned if it was only protruding about an inch. If it got to be four or five inches, then I’d need to have it looked at.
I hung up in disbelief. My guts were literally hanging out and my surgeon wasn’t too concerned? However, I did as he suggested and laid flat on my back in bed for a while. It wasn’t long before the intestine began to sink back in (where it belongs, thank you!). While I laid there watching and waiting, I couldn’t help but think there has to be something symbolic about having one’s guts hanging out. But, for the life of me, I couldn’t come up with what it was.
When I finally felt like it was safe for me to get up, I went right to the computer and Googled “stoma prolapse.”
Not a good idea! I saw all sorts of gross photos of intestines popping out of stomas several inches and more. I tried to just read the text and not look at the pics, but it was impossible not to notice them. Besides, there wasn’t much explanation in the text that seemed helpful either.
Fortunately, my three-month check-up with Dr. Brown happened to be scheduled for today. I went to his office hoping to get some answers to my burning questions:
• What causes this to happen?
• What can I do to prevent it?
• Will I need surgery?
His answers were (in this order):
• Don’t know.
• Nothing.
• Hope not.
Okay, I may have paraphrased a little. Basically he said they don’t know why stoma’s prolapse, although he believes it’s often related to a stomal hernia. He felt around my stoma as I was reclining and then lifting up as in a crunch, and said he thought I might have a small stomal hernia forming. (Oh, joy…)
He said there was really nothing I could do to prevent another incidence of prolapse. And there wasn’t much I could do to prevent the hernia from increasing. He said, “You could lie on you back all the time and never use your stomach muscles, but I don’t think you want to do that…” And, as for surgery, he said he did not like to operate on stomal hernias unless it was absolutely necessary. Ditto for prolapsed stomas. If I had a persistent prolapse of many inches, he said we would consider surgery then.
Well, thank God for small favors! I am so disinclined to have more surgery (unless it concerns life or death), I was at least comforted by this last bit of info.
So, for now, I guess I’ll just keep doing what I’m doing. And keep trusting that it was a one-time incident…or at least that if it should happen again it won’t be any worse.
I left Dr. Brown’s office and had a chocolate milk shake – to reward my inner cry-baby for not making more of this than need be.
~ ~ ~ ~ ~
Okay, I can’t stand not including a photo. So here’s one I took tonight of my new neighbor. His name is Billy.
Karen,
I had similar – scariest moment of my life (Apart from waking up with a stoma).
All the best,
David (Australia)
David –
Thanks for the affirmation! I’m usually a pretty sturdy cookie, but this one sure sent me over the edge!
Hope you’re doing okay, too.
Take care,
-Karen
Karen
Sounds like you handled this with great strength and patience. Not sure I could have done the same. Hope we can talk soon! Love you Ali
Ali –
There was a cartoon in the New Yorker recently with this caption: “In order to get through this, I’ve had to find an inner strength that I never knew I had in the medicine cabinet.” 😉
Love ya, too!
-K.
HI Miss Karen,
Wow! You continue to amaze me at the beautiful way you write about such frightening moments in your life…and yet…you share and move on. ALWAYS inspiring me to walk thru challenges much less threatening than what you deal with.
And if you can’t find something in the medicine cabinet…look in the liquor cabinet.
I have so cherished our conversation last week.
Loving you,
Karenda J
Karen –
Did you receive any information about hernia belts or support binders? I too have stomal prolapse and a hernia – #3. Three surgeries (related to hernia – partial obstructions) – I can only find a company in the UK. Did your surgeon or his nurse have any suggestions?
Never thought I would appreciate the bag, but I at least I can’t see the stoma!! Still haven’t gotten use to it!
Colleen –
I know how hard it is to find info on stomal prolapse. Mine was so moderate, my surgeon didn’t really offer much in the way of advice except that he didn’t think there was anything that would prevent it. So, no, we didn’t talk about hernia belts, etc. So far, I haven’t had an incident serious enough to warrant another doctor’s visit. Fingers crossed that it’ll stay that way!
Sorry to hear you’ve endured three surgeries around this issue. It seems pretty challenging once you have to go down the “repeat surgery” road. I’ll keep you in my thoughts. If I learn anything new, I’ll be sure to pass it along.
Well glad to see others commenting on this. I had gone to my PCP for some regular blood work and had a follow up about 4 days later. In between that time my stome went from what I considered normal to sticking out about 2 inches and swollen like a baseball. When I went for the follow up my PCP told me to start a predisone taper and when that was over to schedule an appointment for a specialist. Well, that wasnt gonna fly! So I went the next day and made the appointment myself. When the specialist saw it he immediately called the surgeon that did the surgery the first time and he got me an appointment with her that day!! When she saw it she had scheduled a surgery for me. I will be having it Monday so wish me luck. But what they are going to do is make an incision around the current stoma, remove the prolapsed area and reattach it and also make the hole a lil smaller by stiching an edge a tiny bit with a couple stitches. It will be in slightly more of a tear drop shape. My surgeon was not surprised or seemed too worried when she saw it. But she did say that it needed to be dealt fairly quickly because, lets face it; like th author of this comment said, having your guts hanging out is not right! SO I guess when you think something doesnt look or feel right its best to “go with your gut” haha
Drew –
I absolutely will keep you in my thoughts on Monday as you have your surgery!
I’ve been lucky enough not to have more problems with this, but I can sure tell from the number of hits this post has generated that it must be a fairly common issue for ostomates. And most folks are not getting the answers they need.
I’m glad you trusted “your gut” and were able to see your surgeon ASAP. I agree with you: if it doesn’t look right or feel right – insist on having it looked at! No guts, no glory (sorry, I couldn’t resist).
Best of luck to you on Monday. I hope it goes smoothly!
-Karen
Well thank you very much! I wasnt expecting such a quick response but I guess thats twice this week that I simply ask a question or say one little things and the response is almost instant. Thank you very much and we will talk to you next week
I’m glad to see that it wasn’t as bad as what I went through. About a month after my original colostomy, my stoma began to prolapse and just like Karen I began to freak. My surgeon had the same response and said it was normal for it to come out a bit, which at the time was about 1-2 inches. It didn’t bother me much except when it came time to replace the pouch. I figured out that if i sit in a reclined position it would eventually go back in. Unfortunately some pouch changes would take 20-40 min’s because of the waiting.
Over the course of the next year the prolapsing got worse and eventually prolapsed out as much as 12 inches. This was an everyday occurrence and I got used to dealing with it but it was extremely frustrating at times changing pouches. It would also get pretty uncomfortable when it was completely out giving me what felt like a really dull tummy ache.
I ended up going to the Cleveland Clinic for corrective surgery when my surgeon finally saw how bad it was. I was told that it was the worst they’d seen which made me feel better knowing that maybe not many people had to deal with what I did. The surgeon who performed the corrective surgery did it very well and the stoma was completely flush with my belly which made pouch swapping a breeze.
Unfortunately over the last couple of months its begun to prolapse again but its not nearly as bad as before but it can cause me issues when replacing the pouch. Usually when I wake up in the morning, its flush from laying down all night so I immediately go to replace it before it begins to “roll” out.
It’s a big pain in the butt to deal with and I have found little information about how to deal with it other than a blog where someone says that they sprinkle brown sugar on their stoma and it reacts by rolling back in. I never tried because I generally don’t keep sugar in the bathroom but who knows, right?
Sugar, whether brown or granulated white, works as an osmotic agent to draw fluid out of the stoma – remember, it’s the colon’s job to absorb moisture.
Apply sugar repeatedly while lying down, and as it gets wet replace it with new sugar. Do this for upwards of an hour while also gently pushing the stoma back in and it should work.
To restrain the stoma from further prolapsing, wear a rib belt (available at medical supply stores) or a prolapse belt with a flap to cover the stoma available from Nu-Hope.com.
Wow! Thank God for the Internet. I am four weeks new to all this and noticed my stoma was slightly “out” on one side. I had no idea what might be coming down the road. Fortunately you all have posted your information and I see that I am in no way unusual, in no potential immediate danger and … importantly, I see that I may be in for more surprises. Thank all of you for your help here.
Hi Angela –
I’m so glad these posts and comments have been helpful for you (and others!). I’ve been fortunate enough to not have continued problems with prolapse, so — perhaps — you might not be in for more surprises! If, by chance, you do have more issues with it, I’d definitely get to the surgeon sooner than later to see what can be done. The only other thing I can add in the way of possible prevention is to not strain your abdominal muscles by lifting heavy things. I think, for some of us, treating this a bit like a hernia and protecting yourself from stressing the area of the stoma can help.
All the best to you!
– Karen
Karen – I don’t know if you view this any more, but you made me laugh! (even if my prolapsed stoma was extending further!). Seriously, my recent experience was not unlike yours but mine was out about 3 to 4 inches! will see about getting a belt, my surgeon did not seem too concerned…
Hi Allen –
Funny you should mention it… I haven’t looked at this blog in a long time, but just happened to take a “look back” a few days ago as I’m approaching the 3rd anniversary of my surgery! I’m so grateful to report that I’ve been cancer-free, healthy, and have had no problems with my colostomy/stoma. (No more prolapse either!). I feel very blessed.
I’m also glad to know that my brand of humor about this subject has helped a few folks smile, but I’m sure aware that it’s no laughing matter for many. Thanks for your comment — and I’ll keep a good thought for you that you’ll have no more prolapse problems!
All the best,
~Karen
Wow, what an enlightening site this was to find tonight. My son is visiting us this Memorial weekend. He just had an ileostomy April 8th and today he had his first prolapsed stoma. Freaked us all out. We called the Mayo Clinic and spoke with the on call surgeon. They too did not seem too concerned. Said to lie down on his back, use ice on it and keep a close watch and note the output.
Our son uses a stoma flex belt-sort of like a hernia belt. Usually wears it daily, but because this is a holiday weekend, he thought he would go without. We first thought it was diet, eating too much at one meal, instead of the 5-6 small meals a day. I wish you all the very best. Sometimes it is very hard to stay calm.
Take care, Jackie
Jackie –
Hope your son is doing okay! I totally hear you about it being hard to stay calm sometimes!
I hope some of what you read here was helpful to you and your son. I haven’t done much with this site since I regained my health, but every now and then someone like you stumbles upon the blog and it makes me hopeful that I’ve helped others a little bit. I’ll be sending good thoughts that your son will be as fortunate as I have been and won’t have any recurrence of his prolapse.
All the best,
~ Karen
Karen
Nice to hear you are doing better.
I know everything will be okay. Just another scary road he needs to travel down. Sad that his chron’s has had to take this turn. We hope that some day or in the next few years that he will have a take down. Never stop worrying about your kids!!
Thanks for your reply
Jackie
I appreciate this post from Karen. I have a stoma leaking fluid, blood, puss, and falling out approx. 1 inch. I went into complete trauma mode.My colon surgery was in January 2013. Due to infections, my hospital time lasted 30 days. I am going today to meet with a stoma nurse.
Teresa –
Sure hope your visit to the ostomy nurse is helpful. It’s definitely not fun when your stoma is troubling you. I’ll keep a good thought for you that things begin to improve! Be gentle with yourself!
~ Karen
I had a prolapse today, scary, i called my surgeon, he asked me to not panic and come in to see him. Mine was pretty long, he simply pulled it back inside and told me to learn to do it myself if it happens again.
These comments have been soo helpful tonight! Im taking care of my mom who has cancer and her stoma has been sticking out all the time but “only” and inch or inch and a half but that bugger is big!! I freaked but no doctor was in! lol Now I know whats happening puts me at ease. One question though…The hole area of the stoma sight is bulging…is that normal?
Christine,
So glad this helped you know what was happening with your Mom. I would definitely get her in to see a doctor if it persists. I’m not sure about that “bulging” spot…probably best to have it looked at. But, meanwhile, no need to panic! I’ll be keeping a good thought for both you & your Mom as you’re going through this ordeal. All the best,
Karen