Questions about a possible colostomy

[ejl10]

Hello everyone,

I've been battling a seemingly impossible bowel program now for quite some time. I've been completely unable to have a bowel movement in my commode despite trying for roughly the last 5 months a couple days at a time with no results, followed by one day doing it on my side in bed with very large results. In the meantime, probably due to heavy fiber intake I just get constipated and live in discomfort. My belief is that myositis ossificans in my upper right quadricep is extending into my pelvis and somehow in the sitting position pinching or otherwise blocking my intestinal tract.

As a result, I've decided to explore a colostomy. I am currently at a post acute rehab facility in Omaha called QLI, with the stated objective to leave here fully independent. Obviously an independent bowel program is a key part of that! As such, I am meeting with a colorectal surgeon tomorrow, Dr. Maniamparampil Shashidharan to
discuss (someone selected by the staff physiatrist here). A couple of questions come to mind.

1) Since I'm really out of town right now and away from the exemplary Boston medical community and my normal trusted doctors, what should I look for in a colorectal surgeon to ensure that this goes well? Does he need to have experience doing the procedure on folks with SCI? Further, if I'm right that the ossificans is causing issues with my intestine, does he need any particular expertise to ensure that the placement is effective? Anything else I should be thinking about or asking him tomorrow?

2) I've heard a lot about all the upsides of a colostomy, but what are the downsides? For example, I found this video (https://youtu.be/QpRTIdKaWOE) of a C6 saying that one year after her ostomy she started defecating through her rectum again uncontrollably and had to go in to the hospital for a week. She believed that it was leftover stool from prior to her ostomy, but that doesn't ring true to me. Is this normal? Also, I'm on a heavily modified and restrictive diet right now, and I'm curious if that gets any more flexible with a colostomy, or if the same threat of constipation will prevent me from ever eating cheese and the like again. And, of course, I have no hand function but I do have wrists. I assume that I'm going to be able to manage myself, but am I overly optimistic?

I'd love to hear some perspective here! My bias right now is to just tell the surgeon tomorrow that I want the colostomy done as soon as possible, but please warn me if I'm going down a bad path!

Thank you,
Emmett

[SCI-Nurse]

Hello everyone,

I've been battling a seemingly impossible bowel program now for quite some time. I've been completely unable to have a bowel movement in my commode despite trying for roughly the last 5 months a couple days at a time with no results, followed by one day doing it on my side in bed with very large results. In the meantime, probably due to heavy fiber intake I just get constipated and live in discomfort. My belief is that myositis ossificans in my upper right quadricep is extending into my pelvis and somehow in the sitting position pinching or otherwise blocking my intestinal tract.

Have you had an Xray or CT of your HO showing that it involves the abdominal or perineal muscles?

As a result, I've decided to explore a colostomy. I am currently at a post acute rehab facility in Omaha called QLI, with the stated objective to leave here fully independent. Obviously an independent bowel program is a key part of that! As such, I am meeting with a colorectal surgeon tomorrow, Dr. Maniamparampil Shashidharan to discuss (someone selected by the staff physiatrist here). A couple of questions come to mind.

1) Since I'm really out of town right now and away from the exemplary Boston medical community and my normal trusted doctors, what should I look for in a colorectal surgeon to ensure that this goes well? Does he need to have experience doing the procedure on folks with SCI? Further, if I'm right that the ossificans is causing issues with my intestine, does he need any particular expertise to ensure that the placement is effective? Anything else I should be thinking about or asking him tomorrow?

It is a plus if he has done elective colostomies on people with SCI/D, but not necessarily required. I would want to know how he would determine what area of the colon yours should be placed. Have you had a transit study done? If no, you might want to discuss doing this to help determine which parts of your colon are functioning normally and which are not.

2) I've heard a lot about all the upsides of a colostomy, but what are the downsides? For example, I found this video (https://youtu.be/QpRTIdKaWOE) of a C6 saying that one year after her ostomy she started defecating through her rectum again uncontrollably and had to go in to the hospital for a week. She believed that it was leftover stool from prior to her ostomy, but that doesn't ring true to me. Is this normal? Also, I'm on a heavily modified and restrictive diet right now, and I'm curious if that gets any more flexible with a colostomy, or if the same threat of constipation will prevent me from ever eating cheese and the like again. And, of course, I have no hand function but I do have wrists. I assume that I'm going to be able to manage myself, but am I overly optimistic?

The only way that a person with a colostomy could start putting stool out through their rectum again would be if they had a double barrel colostomy and/or developed a post-op fistula from their colon to their rectal stump. This would be most unusual. I wonder if what she was actually experiencing was a discharge of mucous, which still is formed in the rectal stump/distal colon. We recommend a monthly Fleets enema to remove any mucous residual like this. The mucous can also dry out and cause a mucolith, which is like a rock, and irritates the rectal stump, causing it to make more and more mucous.

Do you have a tenodesis? Do you have access to an OT where you are now? Before you have the surgery, I strongly recommend meeting with both the ostomy nurse and an OT together to determine if you will be able to manage the appliance changes and emptying by yourself, and which appliance would make this the easiest for you. The ostomy nurse will determine the exact location for the stoma, and should ideally evaluate you both laying in bed and sitting in your wheelchair to do this as well. It can be a disaster if your stoma ends up in a fold of skin, or where you cannot reach it with the hand function you do have.

I'd love to hear some perspective here! My bias right now is to just tell the surgeon tomorrow that I want the colostomy done as soon as possible, but please warn me if I'm going down a bad path!

Thank you,
Emmett

(KLD)

[pfcs49]

T12 complete, 25 years, 73yoa: got my colostomy in 2012 when had a stage four pressure wound on the butt and wound care/bowel program collided and colluded!
For two years post I celebrated-what a great different it made in my life. Got my shit right where I could handle it (intended!), no need for TV in the bathroom anymore , plenty of spare time.

After two years of bliss, some grief: rampant butt snot, apparently caused by the leftover bowels not getting fed by feces (the colonies on the linings of the lower intestines live off the junk passing through; the condition is similar to colitis if not in fact colitis)
I needed to wear a diaper and slept on a chux.
I consulted with 3 GI docs who had me shoving expensive stuff up my ass to no avail; concuss was get leftover intestine removed.
Did so in 2017. Problem is not totally solved but is manageable; sleeping on a chux. When I wake up, I put my hand under a corner of the chux and wipe my butt then do a little digital stem thru the chux while grunting, coughing, and straining like I had a fecal impaction This usually gets some butt snot out and usually there's no BS in my pants, but maybe every 3rd or 4th day a little.
So my experience isn't that rosy, but all in all, I prefer this small deficit to the problems of a gimp doing BPs, and in my case very rare episodes of diarrhea, which, if you can't stand up to clean up, are worse than death!

Shittin through the butt? Reversible colostomy, maybe? I know they told me they could do permanent or reversible, that reversible was prone to herniation, that it was easily reversed. Maybe they leave the intestine intact excepting at the site of the ostomy and "stuff" can take the long route?
They also told me that a permanent colostomy could be reverted but it was somewhat more complicated surgically.

IMO given your temperament now, just go for it. Care is fairly simple. I think a C6 quad can possibly handle all aspects of bowel care but having a partner or helper is certainly good. I change my "flange" (a rounded squarish giant band-aid with a hole in it and a snap opening like a Tupperware) and swapping bags is a "snap" (intentional). If you were real curious, have them get you a bag and a flange and pretend there's a hole in your gut. Worst case, I can mail you the stuff to try.

Good luck
PS: I think my situation with excessive butt snot is fairly uncommon. Grill you doctors/nurses for information!

[KevinH]

61 y.o. T8. Got a colostomy 2.5 years ago. Works great for me. Strongly recommend for bowel/skin problems.

[HACKNSACK44]

47 year old c3c4. I have had my colostomy for 6.5 years. Works great for me. My bowel care doesn't run my life anymore. Strongly recommend!

[Tim C.]

Hack
who does your colo care ?

[ejl10]

Thank you KLD!

Have you had an Xray or CT of your HO showing that it involves the abdominal or perineal muscles?

I have had several x-rays, but none have been reviewed by an expert for this type of issue. Frankly, the doctors I've worked with haven't really bought into my hypothesis that there is any connection with my MO. As such, I also haven't been able to get any imaging with me in a sitting position yet.

Have you had a transit study done? If no, you might want to discuss doing this to help determine which parts of your colon are functioning normally and which are not.

Wow, I didn't even know that transit studies existed! I will definitely ask for this, though it sounds like it might be painful for a week.

The only way that a person with a colostomy could start putting stool out through their rectum again would be if they had a double barrel colostomy and/or developed a post-op fistula from their colon to their rectal stump. This would be most unusual. I wonder if what she was actually experiencing was a discharge of mucous, which still is formed in the rectal stump/distal colon. We recommend a monthly Fleets enema to remove any mucous residual like this. The mucous can also dry out and cause a mucolith, which is like a rock, and irritates the rectal stump, causing it to make more and more mucous.

This sounds pretty reasonable. I had a feeling that it would be unusual for a stool to pass this way.

Do you have a tenodesis? Do you have access to an OT where you are now?

Yes to both (functioning as a C6/7)! I'm keen to get the ostomy while I'm here in part because I have access to nursing and therapy during the learning period.

Thank you again for all of your excellent advice, and for the quick response!

[ejl10]

T12 complete, 25 years, 73yoa: got my colostomy in 2012 when had a stage four pressure wound on the butt and wound care/bowel program collided and colluded!
For two years post I celebrated-what a great different it made in my life. Got my shit right where I could handle it (intended!), no need for TV in the bathroom anymore , plenty of spare time.

After two years of bliss, some grief: rampant butt snot, apparently caused by the leftover bowels not getting fed by feces (the colonies on the linings of the lower intestines live off the junk passing through; the condition is similar to colitis if not in fact colitis)
I needed to wear a diaper and slept on a chux.
I consulted with 3 GI docs who had me shoving expensive stuff up my ass to no avail; concuss was get leftover intestine removed.
Did so in 2017. Problem is not totally solved but is manageable; sleeping on a chux. When I wake up, I put my hand under a corner of the chux and wipe my butt then do a little digital stem thru the chux while grunting, coughing, and straining like I had a fecal impaction This usually gets some butt snot out and usually there's no BS in my pants, but maybe every 3rd or 4th day a little.
So my experience isn't that rosy, but all in all, I prefer this small deficit to the problems of a gimp doing BPs, and in my case very rare episodes of diarrhea, which, if you can't stand up to clean up, are worse than death!

Shittin through the butt? Reversible colostomy, maybe? I know they told me they could do permanent or reversible, that reversible was prone to herniation, that it was easily reversed. Maybe they leave the intestine intact excepting at the site of the ostomy and "stuff" can take the long route?
They also told me that a permanent colostomy could be reverted but it was somewhat more complicated surgically.

IMO given your temperament now, just go for it. Care is fairly simple. I think a C6 quad can possibly handle all aspects of bowel care but having a partner or helper is certainly good. I change my "flange" (a rounded squarish giant band-aid with a hole in it and a snap opening like a Tupperware) and swapping bags is a "snap" (intentional). If you were real curious, have them get you a bag and a flange and pretend there's a hole in your gut. Worst case, I can mail you the stuff to try.

Good luck
PS: I think my situation with excessive butt snot is fairly uncommon. Grill you doctors/nurses for information!

Wow, a lot here to think about! This is the kind of perspective I really value, as I want to be prepared for what might go wrong. Incidentally, my ex-girlfriend had colitis, and it was absolutely miserable. Very good to be thinking about this. Thank you so much!

[ejl10]

61 y.o. T8. Got a colostomy 2.5 years ago. Works great for me. Strongly recommend for bowel/skin problems.

Fantastic, this is what I'm really hoping for! Independence, and improvements in health. Sign me up!

[ejl10]

47 year old c3c4. I have had my colostomy for 6.5 years. Works great for me. My bowel care doesn't run my life anymore. Strongly recommend!

Excellent to hear! I certainly read a lot about folks with lower level injuries, but it's great to hear a positive reaction from somebody with a cervical injury as well. I think I could smile a whole lot more often if this stopped running my life, too!

[ejl10]

I met with the colorectal surgeon today. After discussing the case, he seemed to feel that a colostomy is my best bet. He didn't have much interest in doing a transit study (he didn't think we'd learn anything useful from it), but agreed that a CT scan was in order. Interestingly to me, he doubted that my myositis ossificans has anything to do with my inability to have a bowel movement in the sitting position. Incidentally, I'm trying right now and as usual zero results, though as always I feel a great deal of pressure and there's no doubt in my mind that stool is rearing to go! Instead, he said he believes that as a result of my SCI somehow my sphincter has stopped working when in the sitting position. That seems really odd to me, so I'm not sure how I feel about it. What's more, the implication from that belief is that a stoma at a regular position should be effective even when I'm sitting. I worry about what might happen if it doesn't work properly, especially given that, when I asked about reversibility, he said that the reversal procedure is difficult and often has severe side effects, and therefore I should consider this a permanent procedure. Any thoughts?

[Patrick Madsen]

If possible, see if you can get one on the left side; like a Sigmoid loop colostomy. It's the descending part of the colon just before the rectum. The stool will be more firm and less watery than if on the right side, ascending part of the colon.
I'm T6/7, 47 years post with a Sigmoid Loop colostomy probably 6 years or more post. I usually carry three extra bags with two paper towels wrapped around it each and placed in the brown disposal bag included with the box of bags. Takes about 30 seconds to change out if needed.

To help offset the watery stool and make it more firm, I take one Imodium a day. So far, fingers crossed no problems at all. I used to think I'd rather die than have a colostomy; well all most did die and had to make the decision to get one or not. It turned out to be a good choice. So much so, I had to find a hobby to take up the time i used to spend on the pot. Also nice not worrying if a bathroom is accessible or not cause you can change it out anywhere, within reason. The gas does smell big time so I have a bottle of M4 deodorizer in my bag to hide the smell if needed.

[SCI-Nurse]

This may not be advisable if a transit study shows an an area of poor or non-existent peristalsis in the more proximal bowel.

(KLD)

[HACKNSACK44]

The gas does smell big time so I have a bottle of M4 deodorizer in my bag to hide the smell if needed.

I think it depends on what bags you use. I use this bag and the only time I smell anything is if I get stool around the filter. And that doesn't happen often.

https://products.coloplast.us/colopl...ainable-pouch/

[Patrick Madsen]

I was referring to when a person changes out the bag or, in some cases, burping the bag. I use the Hollister with charcoal filter. Probably much like your coloplast.

[beckman]

Diversion colitis is a risk, not sure how big a risk but I have it. Has to do with the diverted part of the colon not getting proper nutrients any more (i have a sigmoid loop colostomy). Causes a lot of abdominal pain and occasional diarrhea at least for me. I’m currently being treated with expensive pharmaceutics, I think like pfc was referring too. The symptoms are much reduced right now but not gone. Working with a gastroenterologist on this right now.

stool pancaking around the stoma has become a problem for me too, I always have to push the stool manually down to the bottom of the bag it doesn’t, just slide down on it’s own. Sometimes hard to do with c6/7 hands.

[HACKNSACK44]

I was referring to when a person changes out the bag or, in some cases, burping the bag. I use the Hollister with charcoal filter. Probably much like your coloplast.

Sorry about that. I agree with you on changing out the bag.