UOAA Discussion Board

I have a 23 yr old son with Down syndrome who has had a colostomy bag since he was 9 years old. We haven't had any real issues until about a year ago. He started having smears in his underwear which we first thought was rectal discharge. As time went on it changed....still some days it's smears in underwear of dark brown smelly stuff BUT then we find stool in his underwear. For example, he had a barium drink for a scan....that night colostomy was neon green in color....underwear smears were neon green. He drinks water flavored with fruit...one afternoon, there were food particles like tiny skin of the berry in the poop in his underwear. I could go on and on. It's developed into him needing to change his underwear three times a day since it gets dirty so much with stool. He actually stood last week and there was liquidy poop dripping down his inner thighs.
Docs assume it is a fistula but they can't find it. has had scans....and Tuesday he had a huge surgery..sigmoidoscopy, colonoscopy, and opened his belly up going through all the loops of bowel but can't find it. Was in operating room from 7:30am to 6:30pm. Docs are perplexed and agree this is real poop we are seeing. (i send them pics of underwear) BUT they can't find cause. He is still in hospital recovering from surgery. Anyone ever had a fistula that was never found? Anyone ever have stool coming out caused by something over than a fistula? My mind can't wrap itself that we see poop but no one can find cause. Thought I'd come here to maybe hear someone has had experience with this!

Thanks!

Angela

HI Angela,

Does your son have an ileostomy or a colostomy. I have a permanent colostomy as my rectum is 100% gone. I'm sewn up back there. If your son has an ileostomy , he may still have his rectum and I've heard where sometime, BM will come up. Generally it is rare, but it can happen. If he does have an ileostomy, where that loop is could be the problem.

Not sure if this helps or not.

Nickolas

Fistulas can be tricky to find on exam or on CT or MRI especially if they are small. I definitely had one but not one as your son's. Mine was a rectovaginal fistula that developed from cancer. I had a diversion colostomy to make radiation and chemo easier to tolerate. I passes stool from my vagina but we never clearly saw the fistula tract with any method of testing. And I had them all. During one exam under anesthesia the surgeon saw a dark spot that he thought was the fistula and tried to insert a very thin probe but it wouldn't advance so he left well enough alone. I decided not to pursue corrective surgery and kept my colostomy so if the fistula is still there it is not presenting a problem. But the issue your son has will be an ongoing one if the tract remains open. As long as stool is of liquid nature it will enter the fistula. Formed stool is less likely to pass through. MRI's are supposed to be the most sensative test to find fistulas and gastrografin studies as well.. I hope you and your son get an answer and resolution.

Hi Nikolas for your reply....my son has a colostomy but still has his rectal pouch and bum is open. I'm so confused as how stool is coming out but we don't know how.....

You may have got your answer thanks to Ornery. I've never had a fistulas, so I really don't know a lot about them.

Good luck, hope your son is on the mend.

nickolas

thanks ornery....it's so hard. He had a barium drink and MRI but we were only there for afternoon...no one watched later how it went through his system that night when he produced stool in his colostomy neon green and the underwear stool that was smeared was also neon green. While in surgery, they did sigmoidoscopy, colonoscopy and flushed him but nothing. it's been driving me nuts since I was really hopeful surgery would find it. We go through lots of underwear and logically there must be a reason for the stool to come out. It's a mystery.....

Izzy momma:
What an unreal and ongoing ordeal . . . for both your son and for you.

That the oral neon-colored contrast was later visible in the recral discharge “smears” is both telling and concerning.

I was first of the thought that your son’s discharge was from disuse colitis of the remaining and retained off-line lower intestine. An off-Line intestine is not a happy intestine, especially intestine that has been hibernating for 23 years.

But the noticeable neon-colored oral contrast in poop smears several hours after swallowing the contrast does give credibility to a possible fistula. Fistulas can be sneaky and difficult to locate. They can be minute and the diameter of a pin hole, too small to visualize with the eye.

Any benefit from your son’s recent exploratory surgery?

If not, then I would suggest a more detailed MRI with contrast isotope tracer or a dynamic fluroscope of the small bowel with gastrograffin. A dynamic MRI or fluroscope study would be of more value than a static study. Large/urban hospitals with speciality GI motility Centers have imaging capability that allows to scan the intestine and function over a span of several hours. That is, a dynamic imaging study follows the tracer as it passes through the intestinal tract with time. Images are taken at several intervals. A functional study might show evidence of a pin-hole fistula. Fistulas can be very frustrating to find. They can be very elusive.

I hope you get some answers soon,
Karen

Angela,

Is it possible to firm up his stool a little by way of bulking agents? When I was dealing with my fistula before my colostomy, when my stool was firm it didn't come through the fistula. It only came through when it was loose and this is often the case with small fistulas as solids can't work through a tiny opening. This may not be wise in your son's situation but perhaps you could ask his doctor.

When bypassed, some fistulas will heal without surgery. An ileostomy or colostomy is sometimes created to allow a fistula to heal and then reversed. But in your son's case, without knowing from what section of bowel the fistula began, it wouldn't seem wise to divert at an earlier segment.

I hope you can get another opinion on how to locate the fistula and Karen's suggestions would likely yield you the best outcome. Having a colostomy and still having to clean up poopy pants is a bit much.

Hi Angela,

I am sorry to read about your son’s problems. You don’t need this.

I think that Karen and Ornery have it exactly right, based on my personal experience. To explain:

I have exactly the same setup as your son - colostomy with intact, disconnected rectum - and I think it is a big coincidence for me to read this board today and see this, as you will see below.

I have a couple of complications. I have what seems to be chronic diverticulitis and I have diversion proctitis. I manage the diverticulitis via small meals, low fiber/residue, and using Miralax to keep my output relatively thin - never normal consistency or heaven forbid consitpation. I manage my proctitis with mesalamine suppositories and fecal transfers.

To go back a bit further, I had emergency bowel surgery in 2012 that led to all of this. A few months after the surgery the powers to be at Mayo Rochester decided that I had one or more fistulas. There can be various sorts of fistulas, communicating between various places. Mine supposedly went from someplace in my bowel to the disconnected rectum - so there was a pathway for contents of my gut to pass into my rectum, and out. Then a few years later a really great colorectal surgeon at Mayo Arizona reviewed my case, went in and looked and told me that she saw no evidence of fistula. So be it. Until yesterday.

I had a minor diverticulitis attack on Saturday. When this happens I cut way back on food and crank up the dose of MIralax to really thin things down. I had been doing great on a new oral mesalamine pill that they were trying me on for the ongoing diverticulitis pain, and my gut felt so perfect that I decided to revert to a more “normal” consistency. Well, I think that is what brought on the attack. (You don’t really need to care about this level of detail about my diverticulitis, but I post it for the future reference of others and in the hope that others here might have some sage advice for me.)

So yesterday I went golfing. When I got home I had an urge to evacuate my rectum, which I thought strange since there shouldn’t have been much of anything in it. What came out was pure, semi-liquid crap, not the normal mucus/blood that I have when my proctitis is active. Four hours later, same thing. There can be no doubt that this is fecal matter and it has to be coming from a fistula, there is no other way. I have to conclude that the folks in Rochester were right and that the doc in Arizona was simply not able to see anything when she examined the rectum, that the fistula was hiding.

My guess - and I have no idea how this might apply to your son - is that thicker output not only caused diverticulitis pain, it somehow disturbed what had been a closed fistula by creating higher internal bowel pressures in order to keep things to move along. Then the super thin output had a path to the rectum. I am hoping that if I get things back to normal the fistula will gradually get better.

I don’t know what to suggest, but I am pretty sure that your son has a fistula, if my experience is any indication. What other way of getting from point A to point B could there be, I don’t know. If your son is otherwise doing fine, maybe things can get better on their own...? I am old and one thing that I have learned in life is that T-I-M-E can sometimes work wonders.

Good luck!

I want to apologize for the cluelessness of my note yesterday. I am embarrassed. I woke up yesterday, looked at this site, saw the topic and knew right away what it had to be about, and was so pre-occupied with my new problem that I just started writing. Sometimes I get so wrapped up in my own problems that I am not a good reader. I did not see the *extent* of the surgery that your son has just come through(!) until I carefully re-read your first note this morning. I am sorry that I wrote what I wrote and am so sorry for you and your son that they didn’t find anything. Maybe things got juggled around by the surgery and this will help. I hope so.

Bill:
I do not see that you need to apologize. The information that you shared of your own unexpected rectal discharge and likely correlation to a fistula speaks to how unsettling a fistula is.

I have had the misfortune to have had a long string of inaccurate diagnoses and sequela of physicians who then assumed “group think” and carried forward inaccurate diagnoses because no physician was willing to look at my symptoms with a fresh perspective. I am a poster child of the need to challenge assumptions and challenge medical providers if your body stands in continued protest to care you are receiving.

Medical science is not all-knowing. There is much that medicine has yet to understand about the workings of the body. And mistakes in diagnosis and treatment recommendations do happen.

Your description of events is a powerful first person narrative of how a fistula can first present. Fistulas are sneaky. And they cause significant emotional distress for the very circumstances you describe. An off-line rectum or sigmoid Colon or similar will be susceptible to a fistula over time (4-5 years or longer). It is similar to the plight of an abandoned house, boarded up and uninhabited by owners. Floorboards creek, water pipes drain. A de-functionalized rectal stump is susceptible to development of a fistula due to tissue weakening and the disruption of the regular flow of intestinal plumbing.

I have a short 1/2 - 1 inch rectal cuff and retained anal sphincters. It has given me little problem until the last few months. I am now 7 years post ileostomy for a peroration and continue with daily reliance on corticosteroids. I have been using a large gauze pad between my butt cheeks to absorb discharge that is a clear liquid, 12 x a day. MRI shows that the rectal cuff tissue is atrophied and dry and thin . . . With a fistula that is draining normally found tissue fluid from a retroperineal space.

I wasn’t going to write about my fistula here . . . It is a new finding last week and I am a bit overwhelmed. But your experience of a “gush” of leaking fluid is similar to my own situation where I now have necessity to place and change a complexly soaked large gauze pad 12 x a day. It is messy and emotionally taxing. The fistula formed simply because the rectal cuff tissue decayed from disuse.

Anyone with an aging rectal stump or rectal cuff, become familiar with fistulas. I certainly have been surprised and caught off guard, myself. I was not given good odds to survive my original perforation . . . and I am here, 7 years out. I just do not have it in me to entertain any further surgery.

Ugh. Fistulas.

Anywho . . . The raw emotion of your first person post and sharing of a fistula will be beneficial. I empathize. And it gives the originally posting mother an additional avenue to pursue in looking for an answer to her son’s distress.

Nameste,
Karen

Karen/Button -- and Izzymomma,

I know very little about fistulas except they're sometimes hard to locate and not fun. Karen, am sorry to hear you developed this. Your persistence and knowledge are amazing. I hope it doesn't get you down. It's a mildly snowy day here in the DC area with most things closed down. For some, maybe that's enjoyable. To me, it's UGH. So I'm sending you (and me) waves of cheer.

Izzymomma, I hope you find answers soon. I spent most of my life trying to figure out the reasons for my constipation and distention. I prefer my mysteries in books, movies, and theater. Wishing you a workable solution -- and soon!

Diane C

I am so sorry hear about your new problem, Karen. It sucks.

BillGK wrote: 2019-02-21 09:18:00 I am so sorry hear about your new problem, Karen. It sucks.

Thanks, Bill.

This newly identified fistula is disconcerting. I do not mind my ileostomy. But the constant drainage from this fistula is a whole different entity to deal with.

A deactivated and defunctionalized rectal stump or rectal cuff (as in my case) is subject to tissue decay over time. It is like an abandoned house, where floor boards may begin to creak or water pipes may begin to leak. My long use of corticosteroids does not help my cause. It is what it is.

But I will say that I do now understand the anguish of a fistula. Where does all of this body fluid that is exiting come from? It is emotionally taxing to deal with.

I am not an ideal surgical candidate, as my health is seriously compromised. I am 5’2” and 80 pounds, more child-sized than adult-sized. I live a quiet and simple life. My treatment options, are limited. I have been through a lot and do not have any appetite for more medical procedures or medical interventions. Whatever I choose as a treatment for this
fistula, it will be simple.
Karen

I didn't know that there were options for treatment other than surgery.