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Crohn's Disease Forum » Surgery » Stoma Subforum » Loop ileostomy into a end ileostomy


05-15-2015, 09:27 AM   #1
brad1025
 
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Loop ileostomy into a end ileostomy

So here's my question right now I have a loop ileo and been dealing with leaks since I got the dang thing. And my surgeon said he's considering leaving it permitted. But from what I read end ileos are a lot more easier to deal with. Do you guys and gals think my surgeon will make loop ileo into a end ileo since it's gonna be permit?
05-15-2015, 03:13 PM   #2
UnXmas
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I had a loop ileostomy, then had that refashioned into another loop ileostomy, then (due to needing emergency surgery) had that replaced by an end ileostomy.

To be honest, I still don't understand all the reasons for using one type rather than the other. But I know loop ileostomies are more likely to be used when the stoma is intended to be temporary and end ileostomies are more likely to be used when intended to be permanent.

I don't think the differences between end and loop ileostomies relate to the likelihood of leaks though, if that's what you mean by easier to deal with.

I'm not sure that there would be justification for doing a surgery just to change from a loop to an end unless there were problems with the current stoma that warranted a surgery anyway. Or at least that was the case with me. There was no problem with me having a loop ileostomy even though there were no plans to reverse it. I only ended up with an end ileostomy after it became necessary to fix my perforated bowel.

But as I said, there are things I still don't understand about the differences. Stoma nurses told me about a few different advantages and disadvantages of one or the other, but the actual advantages and disadvantages that I've experienced were very different to what I was told! (Though I think that's because my experiences are very unusual, and that what I was told would be true for the majority.)
05-15-2015, 09:31 PM   #3
2thFairy
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I have also heard several doctors and patients say that a loop is more prone to problems with leaks than an end ileo.
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05-16-2015, 03:36 AM   #4
UnXmas
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Really? I don't think I've ever heard that. I haven't noticed any difference in leaks, though I realise that doesn't mean it's not generally the case. I've not had many leaking problems with either.

I was told I'd have less of the prolapse and retraction problems with an end ileostomy, but they've actually been even worse than the ones I had with a loop, except for one major retraction which was what led to the refashioning.

I've also had no blockages with my end ileostomy, whereas with the loop ones I had to keep to a very strict diet to avoid blockages.
05-16-2015, 11:32 AM   #5
Racoon2000
 
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Hello. Just looked at this thread as I'm being scheduled for a loop ileostomy very soon!! Been told if it's successful for me I can keep the loop ileostomy? Been told they'd regularly scope me (ewwh!) to make sure everything is ok in there.
Any advice about bags and supply ordering in the UK? The ones I've been given to 'practice' with seem really large. It's all brand new to me. Would appreciate some info from the the ones 'in the know' .
05-16-2015, 11:53 AM   #6
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I use the suppliers my stoma nurses first fixed me up with, they've always been good so I've never had reason to try any others. If you want a smaller bag, you order the bag you want but select an option that says "midi" rather than "maxi" in the description. The only complaint I have about them is that it's difficult to understand the words and terms they use and they don't have any explanations on the site - or is it obvious to everyone else that "midi" means smaller?! Anyway, I would go with whichever company your stoma nurses recommend at first as they'll probably do the first few orders for you to make sure you don't have to worry about it while you're recovering from surgery (that's what mine did anyway). But I've provided a link to the supplier I use below. They always get my order exactly right and on time and are very helpful on the phone. (Let me know if you have the same problems interpreting the bag descriptions that I have .)

https://www.charter.co.uk/

Scopes with a stoma are easy! You don't have the same horrible prep you have for a colonoscopy, and I had my stoma scoped with no sedatives and it was painless.
05-16-2015, 01:23 PM   #7
2thFairy
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Racoon2000, I have a loop ileostomy. The plan was that it would be temporary, but I've had such a great result with it that I've kept mine now for three years. I have no plans to have it reversed. Loop ileos can be a bit more problematic for some than an end ileo, but many people have had them with no more issues than with any stoma.
05-16-2015, 01:38 PM   #8
Grotbags
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Regarding supplies, I was given the option of having them delivered ( which I chose ) or collecting from local chemist.
If your not happy with the pouch you've been shown, there are many different ones and sizes on the market, and manufacturers will happily send you out free samples to try, they all have their pro's and con's.
Just google " stoma supplies " or something similar, and they will all pop up, you can then request samples online, when you find one that suits you, give your stoma nurse a call, and they will add it to your prescription.
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05-18-2015, 02:53 AM   #9
Ang71
 
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Mine (end ileo) leaked for 9 mths! I was lucky to go 1 day with out a leak! . I was house bound couldn't do anything but sit or lay even then it would leak sometimes. It's been a year and my skin isn't the same after having irritated skin for 9 mths. I had enough and demanded they reverse it. Good luck
05-18-2015, 05:11 AM   #10
UnXmas
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I'm sorry Ang! Did your stoma nurses or surgeon try many things to stop the leaks? When I started getting leaks with my first stoma, my nurses switched me to a convex bag and I had no more problems. With my second and third stomas, same thing, but by the third I knew what to do about it, and used convex right away. I can go months without a leak (I hope that doesn't jinx it!).

My nurses say leaks are not normal and are always fixable. They told me I should never accept leaks as something I just have to put up with. Of course I still get the odd one where I've not put the bag on right or I have really watery output, but regular leaks shouldn't keep happening.
05-18-2015, 07:21 AM   #11
Grotbags
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I finally had my first leak round Easter time, thankfully I was at home when it happened, it was right at the top, and I think due to pancaking.
But apart from that , I've had no leaks at all, as Unxmas says, leaks shouldnt keep happening, and theres normally a reason and a solution.
05-18-2015, 05:27 PM   #12
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UnXmas they all were useless. I think I was put in the to hard basket. I seen the stoma nurse twice in the 9mths she was always to busy to see me. The couple of times I seen her she quickly tried a new way of doing my bag then sent me on my way. It leaked before I even got to the car. My husband & I were trying everything. I join heaps of forums to get advice off people that are or were in my situation. They were the ones that helped me & kept me sane though my nightmare. I did heap of research spoke to the companies that made the stoma bags/products to see if they had something I hadn't tried. I even started researching in America. I tried every bag/ product/belts ect. Out there. My daily leaks took about 1-2hrs to do. I used a hair dryer, a syringe, inside of a toilet roll, you name it we tried it. I was very depressed. I just couldn't take it any longer and begged them to reverse it.
I now have my life back for how long is any ones guess. The next op will be a permanent stoma as I have hardly any bowel left. I'm just praying it's a while off.
05-19-2015, 04:41 AM   #13
UnXmas
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I can't believe they'd give you so little help. I have a team of about six stoma nurses so there is always someone available to see or speak to on the phone. It can be difficult as my hospital is a long way from where I live, but they always give me an appointment if I need one. My surgeon is good about fitting me in if I have problems too.

The company I order supplies from also give advice by phone or email. I've never had to use it but I know they offer it.
05-19-2015, 05:40 AM   #14
Ang71
 
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My husband & I couldn't believe it either. The hospital I go to only have 1 stoma nurse that's there Mon-Fri she does the wards & also outpatients. There was also a trainee stoma nurse/nurse but she wasn't on all the time. I woke up with the stoma in ICU on the fri I never seen the stoma nurse until 3 days later on the mon. By then my skin was red raw and very sore. I was having trouble with it from the very 1st day. I spent 1 mth in hospital while they tried to get the bag to stop leaking. Once they got it to stay on for 1 day then they sent me home.
I'm just glad it's over with. I never want to go through that ever again.
Where a bouts are you? sounds like they have a good stoma system..
05-19-2015, 06:58 AM   #15
Grotbags
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Thats a shocking way to be treated Ang
I live rurally and even we have four stoma nurses who are always contactable by phone, and will give you a next day appointment if needed.
No wonder you glad to be rid of your stoma.
05-19-2015, 07:18 AM   #16
UnXmas
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I live in the UK, also in a very rural area. My hospital is over an hour's drive away but there is always a stoma nurse you can call Monday to Friday, and they will make me an appoinment within a couple of days. When I had an urgent problem they and a surgeon saw me the same day I called them.
05-20-2015, 04:39 AM   #17
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I'm in Queensland Australia. I live in the suburbs about 5-10 min away from the hospital! you would think they would have there act together in this day & age! Wish the system was as good as yours
05-24-2015, 10:49 AM   #18
Racoon2000
 
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I use the suppliers my stoma nurses first fixed me up with, they've always been good so I've never had reason to try any others. If you want a smaller bag, you order the bag you want but select an option that says "midi" rather than "maxi" in the description. The only complaint I have about them is that it's difficult to understand the words and terms they use and they don't have any explanations on the site - or is it obvious to everyone else that "midi" means smaller?! Anyway, I would go with whichever company your stoma nurses recommend at first as they'll probably do the first few orders for you to make sure you don't have to worry about it while you're recovering from surgery (that's what mine did anyway). But I've provided a link to the supplier I use below. They always get my order exactly right and on time and are very helpful on the phone. (Let me know if you have the same problems interpreting the bag descriptions that I have .)

https://www.charter.co.uk/

Scopes with a stoma are easy! You don't have the same horrible prep you have for a colonoscopy, and I had my stoma scoped with no sedatives and it was painless.
Thank you. Sorry I've been off line for a while. Yes. I googled and found lots of companies with lots of different appliances. A whole new world!!
I got totally confused with the sizing on their websites? Is the mm measurement related to your stoma? It's all very confusing!
I'm one of these people who really likes to be super independent so not taking too well to the idea I'm not going to be for a while post operatively.
My tummy isn't super flat so my recent worries are all related to leakage and skin problems.
05-24-2015, 10:52 AM   #19
Racoon2000
 
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Racoon2000, I have a loop ileostomy. The plan was that it would be temporary, but I've had such a great result with it that I've kept mine now for three years. I have no plans to have it reversed. Loop ileos can be a bit more problematic for some than an end ileo, but many people have had them with no more issues than with any stoma.
Thank you. That's good to know. Do you have colonoscopies more regularly with your loop?
It's the one I hate most out of all the scopes.
05-24-2015, 11:20 AM   #20
UnXmas
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Thank you. Sorry I've been off line for a while. Yes. I googled and found lots of companies with lots of different appliances. A whole new world!!
I got totally confused with the sizing on their websites? Is the mm measurement related to your stoma? It's all very confusing!
I'm one of these people who really likes to be super independent so not taking too well to the idea I'm not going to be for a while post operatively.
My tummy isn't super flat so my recent worries are all related to leakage and skin problems.
The mm refers to the size of the base plate/flange. The number given by the products usually refers to the maximum size of hole that can be cut in it, which is cut to be the right size for your stoma to fit through, so yes it refers to the stoma size. I've probably made that sound more complicated than it is - your stoma nurse(s) will measure your stoma and order the correct bags for you and show you how to measure and cut them. You can also select an option to have them cut for you when you order them.

I've had very few leakage problems and no skin problems. Try not to worry prematurely - you only need to cross those bridges if you come to them. I didn't understand much about stoma bags and looking after a stoma when I tried to learn about them online before my surgery, but as soon as I'd had it and could actually see how to apply the things I'd read in a real situation, I picked it up very quickly. And it also helped an awful lot to have the stoma nurses there telling me only the information that was relevant, instead of me searching through a hundred websites to try to find the answer to on question. My stoma nurses were very keen to get me looking after my own stoma right from the start, if all goes well you'll be independent very soon.
05-24-2015, 11:35 AM   #21
Racoon2000
 
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Thank you for being so kind and for all your information too. I really appreciate it.
Haha, yes you are right. It can be a bit of information overload! My stoma nurse is really nice but don't want to bother her before my surgery, they're so busy.
It's good to speak to people who have actually been through this though. Tips and advice are invaluable to me.
Thank you again.
05-24-2015, 05:27 PM   #22
2thFairy
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Thank you. That's good to know. Do you have colonoscopies more regularly with your loop?
It's the one I hate most out of all the scopes.
I have no colon, but do have a rectal stump, so I have a flexible sigmoidoscopy done every other year in my surgeon's office.
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