Help create the "Colostomy" and "Ileostomy" wiki entries

[David]

By request, I am working on the colostomy wiki entry located here and will also be doing the ileostomy entry as well.

I could use some help. While there's some decent info out there on the web, nothing is better than first hand experiences. I'd love to help creating a good entry for folks. I'd love:

1. Complications you've experienced that I haven't listed on there.
2. Links to any threads in this forum you think are super important that I highlight in these entries.
3. Anything you think would be useful to put in the wiki entries.

Reply here (or directly edit if you like) and I'll take it from there.

Thank you so much!

 

[KazT17]

Hi David, the irritation is more of the skin surrounding the stoma, rather than the stoma itself (especially with an ileostomy). Another complication is when the stoma retracts. This causes issues keeping the appliance in place as leaks are more common.

Kaz xxx

 

[KazT17]

P.s there are also loop ileostomies and end ileostomies or is that going into too much detail? Xxx

 

[David]

Excellent information, thank you! I've edited the wiki entry and welcome further insight.

As for the types, no, that's definitely not too much detail. Can you by chance explain the difference?

 

[KazT17]

A loop ileostomy is usually temporary. The small intestine is brought out in a loop and the top of the loop removed, so that waste can exit there. This means that the remaining bowel and colon can be rested and allowed to heal.

An end ileostomy is when the small bowel is cut and the end brought out on to the stomach and attached. This is usually accompanied by a subtotal colectomy, i.e. removal of a large portion of the colon.

 

[Nyx]

Re: Colostomy complications

The complications I had were blood clots in my lungs during surgery (and yes, I suppose you could get these during any surgery), and a blood infection from the PICC line they put in to make things easier (which btw, it did not). While these complications are not directly related to having a colostomy, they are real complications that could happen during surgery and recovery.

I'm not sure if you want to include causes for such a surgery, but if you do, perforating your bowel due to constipation should be included. You should probably also include the surgery to remover your stump if your colostomy should become permanent.

 

[David]

Thanks Nyx! Updated with the potential surgery complications.

I think it'd be good to add potential causes for the surgery, thanks

Does everyone who gets a permanent colostomy get their stump removed?

 

[Nyx]

If you have a permanent colostomy (or ileostomy) you should have your stump removed. The surgeon I saw at Mt. Sinai in Toronto said that you have 10 years from your diagnosis (not your surgery date) to get your stump removed before you have to worry about a potential increase in the case of rectal cancer. I suppose that makes sense since your rectum is not really being used. I'm hoping to have mine removed in the next year or two.

 

[Terriernut]

David, you might want to add information about Proctolectomy surgery as well.

 

[maria]

I've had a end ileostomy and a loop ileostomy. With my experience the loop was a lot harder to deal with because I couldn't get a good seal because it wasn't a nice circle shape like my end ileostomy. hth

 

[katiesue1506]

Here's a good link about the different types of loop ileostomies (yup theres more than one). https://www.c3life.com/ostomy/ostomybasics/loopstoma/

I've got a double barrel loop ileostomy with the distal stoma about 3-4 inches directly above my actual (proximal) stoma. The distal stoma is also known as a "muscus fistula" and is there to provide a vent to my colon while its not being used. This was created in an emergency surgery following a bowel perforation during colonoscopy at my terminal ileum (TI). They ultimately took out 5ish inches of the bowel around the TI and pulled the two ends out to create my double barrel ileostomy. There's a picture of mine in the stoma forum for those wondering about mucus fistulas (they are kinda rare).

The reason this was done in my particular case is because I have a stricture in my splenic flexure (part of the large intestine) and the doc wanted to provide a way out for the normal mucus produced by the colon if for some reason the stricture decided to close off completely while the colon isnt being used. This way I wouldn't have a ballooning effect between the stricture and the part of my intestine that was separated at the ileum.

My stoma is very flush with the skin and also not perfectly round like maria stated.

Anyways I realize all things stoma are very personalized based on what each individual has going on... but I found it nice to know what the different types of loop ileostomies there were.

 

[David]

If you have a permanent colostomy (or ileostomy) you should have your stump removed. The surgeon I saw at Mt. Sinai in Toronto said that you have 10 years from your diagnosis (not your surgery date) to get your stump removed before you have to worry about a potential increase in the case of rectal cancer. I suppose that makes sense since your rectum is not really being used. I'm hoping to have mine removed in the next year or two.

Great info, thank you!

What would you define the, "stump" as out of curiosity?

Do you or anyone else know how long a temporary colostomy can be had before it should be reversed?

 

[David]

David, you might want to add information about Proctolectomy surgery as well.

Sounds good. Any good sources you recommend for information on it?

 

[Nyx]

Great info, thank you!

What would you define the, "stump" as out of curiosity?

Do you or anyone else know how long a temporary colostomy can be had before it should be reversed?

The stump is anything that didn't get removed from your stoma point down to your rectum. So, basically anyone who doesn't have their anus sewn up has a stump. I think the lengths of stumps can vary, but I'm not sure on that. I know that I have about 6" left inside. It was left in case I wanted to have it reversed at some point in the future. Plus, my surgery was an emergency so they couldn't very well ask me at that point if I wanted it removed...lol

As to your second question, I'm thinking that 10 years is the maximum, as your chances of rectal cancer increase after that point if you still have your stump (and obviously you can't have a reversal if you don't have a stump). That's just my guess though.