Stoma exit narrowing or stricture - seeking advice

This one's a bit of a head scratcher. Looking for anyone who has had the very end (exit) of their stoma close down/narrow/form a stricture. My stoma seems to be doing that, for no apparent reason, and no one can tell me why. I've got an appointment with a good surgeon on Monday to discuss a revision, but still trying to figure out what's causing the issue. I've had them scan me, ultrasound me and scope me and no one has a clue as to why the very end (last centimeter or so) of my stoma would be constricting. There's no active disease (Crohn's) to be found anywhere, all bloodwork is normal, intestinal enzymes fine, 7AC4 testing showed normal, CRP normal.....also checked for food allergies and came up blank. So curious if anyone has had their stoma end narrow or stricture........and why? If you have.......just shout!

Thanks,

Bob

Well, shit... I cannot help with the problem but given your good-natured and helpful personality, I would like to extend best wishes from northwest Washington.

Hello Bob.

Thanks for sharing this seemingly unique situation. 
I don't have such a thing right on the end of my stoma but about 2-3 cm down it completely closes over and can cause some problems. 
After much consideration and finger-probing, my take (guess) on this was that it was probably the peristalsis muscles that had decided to stay in 'pressure' position, probably prompted by my hernia which is also around that area. I came to this conclusion as a result of forcing my finger past the obstruction and leaving my finger there for a while to see what happened.  What I believe to be peristalsis, squeezed my finger so tight it almost hurt, but if I left it in position and resisted the pressure, after a little while the pressure eased and didn't return for quite some time. Mind you, I think the hole would still be blocked if my finger had not been keeping it open.
My reasoning for the next step was purely mechanical: I figured that if my finger could achieve the desired effect, then maybe the stoma plug could do a similar job during the day and might even be able to 'train' the thing to remain dormant and open. I've been using stoma plugs ever since and found that for the most part they are relatively effective. However, every now and then the plug is forced out of the stoma and seems to get squashed on the outside (with all the supports I use to try to keep it in). Sometimes this creates a minor pain, but so far, I have had surprisingly few major leaks, so I keep using the same technique.

NOTE: In the early days, on the observation that the stoma plugs are flexible, buckle and get pushed out, I had several attempts at making my own stoma plugs out of more robust material. This was not successful, because the ones that were solid did not let gas out and, those I drilled tiny holes in, to resolve that problem, created a different and serious issue: The stoma walls acted like the skills of an octopus and squeezed through the tiny holes, then expanded on the other side. I had a really hard job getting the device back out and won't be trying that again! 

 

I will be interested to see how you resolve your problem, or at least find a way to 'manage' it.

Looking forward to the update. 

Best wishes

Bill     

Wow ouch!

Hi guys,

Turns out stomal strictures, or stenosis, occurs in about 6 percent of ileostomates and about 4 percent of colostomates........so yeah, somewhat rare, unless you're in those percentages. Seems they also don't know why it occurs, except when active disease is present, so another dead end from our medical professionals. And since they don't know what causes it.........they have no treatment for it.......so it usually results in a surgical stoma revision. Not normally a problem except when you don't have any bowel to spare for them to snip a chunk off and re-attach. So the plot thickens........

I remember as a kid looking up to doctors thinking they could fix anything......and wanted to be one. Unfortunately, I've found the opposite is true.......they can't seem to cure anything......they simply cross-reference your symptoms to the myriad of meds they're told to push........and they give you whatever comes closest to "helping" your problem. Seems like artificial intelligence could be taking over that job in the very near future! And I say "helping" because the side effects of most meds these days will make you wish you never took them in the first place. But wait........I think I'm ranting. Hold on, let me re-read that. Yeah, I'm definitely ranting, so enough of that.

I had contemplated 3-D printing a stent, like Bill explained, to put in there to keep the stoma open, but the problem with that is the bowel will constrict around the stent (and through it as Bill explained....YIKES!)........and if I were to accidentally eat something bigger than the stent opening....there'd be no way to get the stent out.....or what I ate.......and it would be bye-bye for Bobby. So not worth the risk. But I see they do make such a thing out of wire for gastric bypass patients, who have a much higher incidence of bowel stricture post-op. Unfortunately, most of them that develop such a stricture usually don't make it.........so at least I'm not one of those unlucky folks.....I got options.

So just checking with this crowd to see if anyone has had such a thing, and had any new info that I didn't. I'll see what the surgeon says on Monday, but we'll have to act pretty quickly, as my front butt exit seems to be shrinking daily. I'm working with the Small Bowel Transplant Team at Georgetown, as those folks best understand Short Bowel Syndrome and the need to spare as much of my bowel as is possible, and have some of the best surgeons on the planet (or so I hope). So it should be a good meeting, with 'good' being a relative term. It's just a good thing I had the previous surgeon install a zipper in my abdomen instead of stitching me up solid, as I knew we'd be going back in there sometime.....and it'll make the recovery much quicker. Just zip me up, hose off the blood and show me the OUT door! Thank god for stainless steel zippers!

As I've said before.......you gotta love being an ostomate. Because no matter what..........it's sure never boring!

;O)

Bob

Hello Bob.

Thanks for the further information. I hope everything works out well for you.

Best wishes

Bill

Wow Bob, you have been through a lot of unusually difficult things. I don't blame you for the rant. I agree that the doctors are guessing so much of the time. I wish you the best and hope you get answers and relief from this soon.

Hey Bob - sorry you are going through all of this. I think ranting is helpful - at least it is for me. I've been ranting about docs and meds ever since I learned to use the f-bomb. I will be thinking of you on Monday and am hopeful you meet up with some great docs - I know they are out there - it's just really hard to find them! Keep us posted when you can. jb

Good luck for today. I hope you get a solution. X

Hope you team up with some great docs and all goes well!

Howdy gang,

My meeting with the surgeon went well. He's a very talented surgeon for sure. But what surprised me the most was his willingness to deal with it non-surgically. He liked my idea of self-dilation, as well as using a homemade stent... and suggested we hold off any surgery until it's our last option. That was basically my plan, but I wanted to get some face time with the guy in case I ended up in his ER and was dropping his name. So we had a good chat. I forwarded him a historical pictorial record of my stoma since getting my shitbag, as well as my list of questions as a read-ahead, and he appreciated that. So we'll play it by ear, and if the shit hits the fan I'll just show up in the ER asking for him in between screams of pain. We both agreed it would probably be at the worst possible time... like 4:00 pm on Christmas day... or 11:00 pm on New Year's Eve... so we both laughed at that. Seems there isn't much this guy hasn't already seen... which is good. He explained that he'd be prepared to open me up, but would first just cut the stoma free, see if he could pull it out a bit, snip off the stricture and sew the stoma back to my abdominal wall. I think we both know it won't be that easy, as I'm not that lucky, but I think he wanted me to relax and not worry about it until the time comes. So it was a good meeting, and I accomplished what I wanted to.

Today I was online looking for some good dilating tools. I was thinking tapered drift pins, and will order a set to modify, but was quickly steered toward cervical or uterine dilators. I wish they tapered more, but I can fix that with a grinding wheel and a buffer. So will order a set of each, and then saw the Otoscope tips. Interesting and cheap, but might taper too quickly. I'm checking those out now. And surprise, surprise... there's a myriad of sex toys that I guess people stick in all their holes that also dilate those regions... there are some real sick people out there. But maybe I can capitalize on their weirdness! And it is amazing what you can find on Amazon and eBay!! So not sure how this will all play out... but as always... it'll be interesting!

;O)

hello Bob.

Thanks for the update, It sounds like you've found one of the good guys in the medical profession.

When I needed to dilate my stoma, I also did a bit of searching for an appropriate 'tool'. Having already used an anal dilator in the past I contacted the hospital to see if I could get another, but with no joy. Eventually, I found the best device was a good quality stainless-steel garden 'dibber'. I know it sounds a bit far-fetched, but if you have a look at them, and compare them with all the other possibilities, I think you will find that it compares very favourably for what is needed to dilate the stoma. it also has the added advantage of being easily cleaned. 

Best wishes

Bill

Yay on you - agree with Bill - sounds like you found a good MD - they are rare.

Not familiar with sticking things in a stoma but sounds like maybe a turkey baster might work - and probably cheaper than sex toys!

I am happy that you found a good surgeon that was willing to listen. Good luck

Hi Bill,

A garden dibber? I've never heard of that... but I did just look it up... and I think you're on to something!! It's a tricky thing to get the dilator just right because the taper has to be gradual enough to stretch and not push, yet the overall length becomes a problem once it's inserted since the bowel isn't straight. So I'm going to be trying a lot of things, I'm certain. And I just added a 'garden dibber' to my list. I can make one easily enough, and I'll make a few different profiles. Much thanks for the suggestion!! As for the rest of the folks... I can't believe you guys didn't run with the "sex toys" jokes... must be a slow night on MAOM!

;O)

Hello Bob.

During my investigations I did explore the sexy toy angle (no joke!) but none of them were the right shape for my needs and I would have had to have bought a whole set of different sizes to get anywhere near the desired effect. Anyway, they were far more expensive than a 'dibber'. By the way, the dibber I bought was made by 'Draper' tools.(Garden Dibber (36981)) because the end of it was quite narrow (finger size) and would fit into my stoma to start the process of dilation of off. The tool can be viewed on their website https://www.drapertools.com under DIY/gardening.-> Planters and dibbers.

Best wishes

Bill

I had my first emergency surgery on July 12, 2017. I lost my whole lower bowel. It was very odd but I never seemed to have a lot of output and constantly had severe stomach pain. 7 months after having the original surgery, I fell ill again and went to the emergency room. After several CAT scans, I was rushed into surgery again due to the first ileostomy stricture shortly after receiving it. Had I waited a few more hours, my overfull small bowel would have burst and I would be gone! The doctor told me it was the worst stricture he had ever seen in his career. He also said I was full of adhesions and he just started cutting them away. It was really horrible! I am much better now but it was a very frightening time.