Considering Reconnecting - Seeking Advice on Ileostomy vs. Colostomy

Today my surgeon called and I am on a list to get pre-op but not as soon as I hoped. Maybe this is a good thing because now I heard what he said freaked me out. He would reconnect me and give me a temporary ileostomy. Yikes why? I blanked at that point so here is the question for you wonderful people. I am actually getting used to having a colostomy. If they can fix the shrinking stoma and give me a regular rosebud instead of down a hole tiny stoma I would be happy.

My thinking is all over the map because all of you with ileostomies are so brave and seem to cope well with it. But my track record of IBD and colitis and chronic constipation and enemas and lots of pain. Should I even consider reconnecting? If I can avoid a permanent ileostomy I sure would like to.

This last weekend I had a flame burger and BOY was it good. I buy jalapeños by the gallon jar so I have really been missing my spicy hot food. Well later that night I am vomiting all night, in the ER the entire next day where they say my cat scan looked like colitis. So I trust you guys. What is a good course of action?
One final thing for the pot. If and when the shit hits the fan with a colostomy I could irrigate and not worry about how many bags I have left. Just a thought...

Hi Gimo,

A good course of action? Well... ummm... you might want to start by tossing out the big jar of jalapenos!!! I don't know... it's just a thought!

Ok, seriously... if you're getting reconnected and given an ileostomy, it means you're getting a "loop ileostomy". They do that to be able to monitor your colon and give it time to heal. But it means you'll be getting a double stoma... one with two holes spaced close to each other. Imagine taking your garden hose and kinking it. Then stick that kinked end of the hose through a wall and then snip the end off. You'll have two hose ends right next to each other. That's what a loop ileostomy is like. One stoma has stuff coming out and the other stays empty and goes to your ass. Once your colon is healed up, they simply sew the two ends sticking out back together and stuff it behind your abdominal wall.

I'm not real sure what the care and feeding of such a thing is while you have it, so I'd ask the good folks on here that have one what it's all about. The question to ask your surgeon is how long will you have the loop ileostomy and what has to happen to make them reverse it so you have no stoma and use your butt regularly. I'd also ask why they want to do the loop as opposed to a straight ileostomy, where the colon is left there, but not connected. I'm guessing they want to monitor your colon easily, but I'm not sure. But you should be. Have them explain the whole process... from start to finish (reversal) and make sure you understand what you're getting yourself into. Not saying it's bad or good... I have no experience with such an animal... but you need to know before they start carving, so you can make an informed decision. Also... make sure you get a second or third opinion on the whole thing. You ALWAYS want to do that no matter how much you trust/like your surgeon. Wishing you did that after the surgery really sucks. Trust me.

;0)

Bob

Hi Bob, I was checking you out and ended up on a post you did and posted to Magog. Huh!

Anyway, I really thank you for the info. I don't think they will do a loop, just leave a piece of colon to heal, but I am not sure. I sure enjoy your thought and the one you wrote to Magoo was very insightful. I was trying to write you privately and not for any secrecy thing, but I am not a member yet. So I guess I can't. I just bought my van I am going to turn into a camper and really I spent my last dime on it. Well, banks are starting to want our quarters so they will let us bring in for free. How nice of them. So I have to wait to become a member until next month. Oh God, it is late and I am all over the board like him. Lololol

Hi Gimo, what Bob said probably gave you more questions and also some good info, but what I am asking is why would you want to get reconnected and deal with the same problems as before? Personally, I would stick with the colostomy. Good luck.

Yes, I have been thinking about that. I just need a better stoma. Thanks.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Gimo,

I'm sending you a PM, so you should then be able to reply. I think. Maybe. If admin likes you. And the stars align. Someday.

;0)

I have a loop ileostomy, best advice for food is no hard veg. Anything green, anything with skin like tomato, onions, it's bloody hard as a chef I've never had such a poor diet! But plain simple foods is key. Only mash, maybe smashed carrots and parsnip. When I first had the op, all I ate was plain chicken, cuppa soups, cheese toasties, and boil-in-the-bag fish! I got a bit lax with my diet and added in my favourite red meat (ok it was minced) but what goes in must come out unfortunately, wasn't worth it. I have a huge list of foods I'm going to eat when I'm reconnected. Even at that, I'll never be able to eat what I want. I wish you good luck and take care of yourself, I'm hopeful we all will get there xxx

Gimo, well, it looks like I'm here to defend the poor loop ileostomy. If you need to get one temporarily, it is not the end of the world! I have been living with mine for over a year, and except for the one obstruction (which I have decided was because of me not hydrating enough), I have had great success with mine. I started with a colostomy and had a small rosebud stoma, then when they removed more bowel, I got a different stoma, quite a bit bigger. Now, my ileostomy is the smallest of the three I've had, and when I'm feeling charitable towards it (which is most of the time), I might even call it dainty. It is very low profile and easy to hide under my clothing, but sticks out enough that leaks have not been a problem for me at all. It is a slightly irregular oval shape, and you would not know it has two holes in it to look at it. I have not had any problems with food and have been able to eat anything, as long as I chew well. I do need to keep well hydrated, but other than that, it is really no different than having a colostomy stoma. I can wear my pouches for 5-6 days without changing. When my surgeon decided to remove the rest of my large bowel, I could have opted for him to give me an end ileostomy at that point, but this was working so well, I decided to stay with it. I figured why have more surgery than necessary, and my surgeon was fine with that decision.

Anyway, that is my two cents. As far as surgery decisions, I agree with Bob. Get lots of information and second and third opinions. Ask lots of questions. We may be a great bunch for some types of advice, but we aren't surgeons, and you really need to trust the professionals. If you don't trust your surgeon, go find another one!

Good luck Gimo.

Terry

I will have a better idea tomorrow as I have a video appointment with the triage surgeon. So I will ask my questions and wait and see where he slots me on the schedule.

Thanks for your input. Oh, and I can only eat certain vegetables even now, otherwise crapping goes through the roof.

Linda

Hi Terry,

Well, I have been given a lot of peace from all you guys. Your description makes it a lot more tolerable. You know, I have complained about my invisible stoma and now I fret they will give a bulbous one that would make me sad. I want dainty and a rosebud. I am not really sure that hooking me back up is such a great idea. My history of colitis, diverticulitis, IBD, and all the others makes me wonder. I used to get so constipated and then do enemas and just being uncomfortable, but since this, I get some cramps, it works, and I have come to terms with it. My thoughts are all over the place. As I shared, I have a video conference with the surgery team doc and will see what he thinks. If I don't get scheduled soon, I am going to go camping and enjoy the river. It is going to be fun seeing how Honey will handle it. She is as big as a dog at almost 20 lbs. Yeah, she is a bit fat, but her tongue is twice as wide as my last baby and her head is bigger as well as her skeleton. So call her fat, I think she is just a big cat.
Thanks for the info.

Oh, I used to drink 4 of my water bottles a day. Lately, getting 2 down is hard. Gonna look into that salt sugar thing once I am done being cut on.

God bless

Linda

Gimo, another thing I might add, diet-related, is that for me, hot sauce is one of the main food groups! I live on spicy food and have had no problems at all. When you look into the salt/sugar thing with water for hydrating, use caution. The amount of sugar that most of the published stuff recommends is way too much for some people. I was going by what the hospital recommended, and I ended up with elevated liver enzymes, weight gain, and feeling absolutely terrible, tired, and worn out all the time. I have completely eliminated the sugar and only add salt to my water. The amount of sugar I get from my regular diet is sufficient, plus I do drink a small amount of fruit juice every day, which has plenty of sugar. I recently had all my nutrient levels checked out, and everything was completely normal. Be careful with that sugar!

Terry

Hi Terry

Thanks for the heads up...

Linda