Need some questions answered before ileostomy reversal

[Anthonyx07]

I originally posted this in the stoma subforum but everyone thought I would get more answers here so I am going to re-post here.

I've had my ileostomy for a few months and everything is going great. I just have to get a couple biopsies done before the surgeon can decide whether I can keep my descending colon/rectum area or if I have to get it removed and do the J pouch. I had to get my terminal ileum, ascending colon and transverse colon removed so all I have left is the descending.

I have a few questions before I get this done. I am terrified about how many times I am going to be going to the washroom after I get this done. Before I had the surgery I was very normal, once a day. When I go to empty my bag it is pretty much always liquid so when I get re-attached will the descending colon be enough to get rid of most of the liquid so I only have to go a few times(I will probably be taking imodium or something like imodium as well I'm assuming)? If I have to get a J pouch done how many times will I be running to the washroom? I am terrified I am going to have a bunch of accidents or something.

I was even contemplating keeping my ileostomy if I have to do the j pouch because I don't have to worry about having accidents or running to the bathroom 5+ times a day but I don't know how bad it will be.

Please help, I appreciate all your responses

Thanks.

Anthony

 

[David]

Hi Anthony,

Let me first say I cannot relate, all I can do is relay information I have read from others. You will likely not be taking imodium. However, I know that some here have had great success taking psyllium husks for their short bowel to reduce the number of trips to the bathroom.

Hopefully others will come along who can provide you with more information and maybe relate. Sorry I can't offer more but I wish you all the best.

 

[giftedbyadoption]

Anthony, My doctor said most people go up to 20 times a if you dont have the colonstomy pouch and just get reconnected to the small intestines.

I to fear the 20 trips and the accidents so am not sure which route I will go I have had the problem of NOT going so mine is the pain of not being able to go for 30 days and losing 30 pounds no eating because I cant go nausea vomiting and ect... so if I have surgery and then just run to the bathroom then I will just lose more and I am only 96 pds now. How long have your had the pouch? Are you use to it? If you have had it and your life has come to live with it you may want to ask your dr and just keep it?
I wish you the best.

 

[Anthonyx07]

Anthony, My doctor said most people go up to 20 times a if you dont have the colonstomy pouch and just get reconnected to the small intestines.

I to fear the 20 trips and the accidents so am not sure which route I will go I have had the problem of NOT going so mine is the pain of not being able to go for 30 days and losing 30 pounds no eating because I cant go nausea vomiting and ect... so if I have surgery and then just run to the bathroom then I will just lose more and I am only 96 pds now. How long have your had the pouch? Are you use to it? If you have had it and your life has come to live with it you may want to ask your dr and just keep it?
I wish you the best.

Yah If the surgeon says he wants to do a j-pouch I think I'm probably just going to keep the bag. If he says I am able to reconnect to the descending colon I'll probably just do that, I just don't know if the descending colon is enough to get rid of most of the liquid with help from medication, I'm assuming it wont be that bad so I'll probably reconnect if I can keep the descending colon.

I've only had the bag for over a couple months but I'm pretty used to it by now.

 

[giftedbyadoption]

Yah If the surgeon says he wants to do a j-pouch I think I'm probably just going to keep the bag. If he says I am able to reconnect to the descending colon I'll probably just do that, I just don't know if the descending colon is enough to get rid of most of the liquid with help from medication, I'm assuming it wont be that bad so I'll probably reconnect if I can keep the descending colon.

I've only had the bag for over a couple months but I'm pretty used to it by now.

With me they can only save 6 inches or so and connect to my small bowel, your small bowel doesnt hold things long and it all comes right back out.... They have to take all my colon but I really want them to anyway my sister and both my aunts and granny had colon cancer as well
I hope it works out for you and which ever way is easy and you get relieve

 

[Anthonyx07]

With me they can only save 6 inches or so and connect to my small bowel, your small bowel doesnt hold things long and it all comes right back out.... They have to take all my colon but I really want them to anyway my sister and both my aunts and granny had colon cancer as well
I hope it works out for you and which ever way is easy and you get relieve

Sorry to hear about you and your families troubles, I hope everything goes well for you all

I just really want my surgeon/GI specialist to say that my descending colon will be enough so that I wont be scared of having accidents all the time and I'll have a semi-normal bathroom routine, that would be the best news.

If anybody here was kind of in the same situation as me would you be able to shed some light on the whole situation so I can ease my mind a bit. I think about it all the time and I stress myself out. thanks

 

[giftedbyadoption]

Sorry to hear about you and your families troubles, I hope everything goes well for you all

I just really want my surgeon/GI specialist to say that my descending colon will be enough so that I wont be scared of having accidents all the time and I'll have a semi-normal bathroom routine, that would be the best news.

If anybody here was kind of in the same situation as me would you be able to shed some light on the whole situation so I can ease my mind a bit. I think about it all the time and I stress myself out. thanks

I hope someone answers for you. I am glad you are getting answers and HELP young wish I would have I am 42 and this has been going on my WHOLE life it sucks and has ruled my whole live. I know what you mean I just sit and think about when will my dr decide what to do and will I get the pouch or not and ect...I am so tired of the pain and not being able to eat.
I to am on Remicade and was on Methotrexate nasty drugs there to. How have you been with it?? any bad reactions? I had blood on the brain and lost all my spinal fluid fluid from remicade I had to go off of it for a year

 

[Anthonyx07]

I hope someone answers for you. I am glad you are getting answers and HELP young wish I would have I am 42 and this has been going on my WHOLE life it sucks and has ruled my whole live. I know what you mean I just sit and think about when will my dr decide what to do and will I get the pouch or not and ect...I am so tired of the pain and not being able to eat.
I to am on Remicade and was on Methotrexate nasty drugs there to. How have you been with it?? any bad reactions? I had blood on the brain and lost all my spinal fluid fluid from remicade I had to go off of it for a year

I'm only on Imuran right now but when I was on remicade and methotrexate I never had any bad reactions, every was fine it's just that the methotrexate didn't really help me out at all. The remicade was great but it stopped working after awhile. They had me on the maximum dose and it didn't even last a month so I had to stop taking it.

I was in a lot of pain before I got the pouch and I couldn't eat anything so it is a great relief to be able to eat and be pain free with the bag. The only downside is that I have a bag hanging from my stomach now not that bad of a downside though. Now that I've had it for a couple months I'm kind of happy that I got it, it's not that bad.

If you do get it you will feel great after, you will be able to eat as much as you want a couple months after the surgery and you won't be in fear of not going to the bathroom hopefully

 

[giftedbyadoption]

I'm only on Imuran right now but when I was on remicade and methotrexate I never had any bad reactions, every was fine it's just that the methotrexate didn't really help me out at all. The remicade was great but it stopped working after awhile. They had me on the maximum dose and it didn't even last a month so I had to stop taking it.

I was in a lot of pain before I got the pouch and I couldn't eat anything so it is a great relief to be able to eat and be pain free with the bag. The only downside is that I have a bag hanging from my stomach now not that bad of a downside though. Now that I've had it for a couple months I'm kind of happy that I got it, it's not that bad.

If you do get it you will feel great after, you will be able to eat as much as you want a couple months after the surgery and you won't be in fear of not going to the bathroom hopefully

Ya Remicade can do that stop working I fear that because I am on it for RA and nothing else helps my RA I am on a low dose right now though because of my bad reaction. So you have the pouch that hangs not the small one thats stuck to your stomach??... I look forward to being able to eat I have 3 men to cook for well a hubby a 21 year old son and a 9 year old son who eats like a man, and its hard cooking all the time when you cant eat it.
My counclers son has chrohns he is your age as well I know he suffers a lot and struggles in college

 

[Anthonyx07]

Ya Remicade can do that stop working I fear that because I am on it for RA and nothing else helps my RA I am on a low dose right now though because of my bad reaction. So you have the pouch that hangs not the small one thats stuck to your stomach??... I look forward to being able to eat I have 3 men to cook for well a hubby a 21 year old son and a 9 year old son who eats like a man, and its hard cooking all the time when you cant eat it.
My counclers son has chrohns he is your age as well I know he suffers a lot and struggles in college

Yah here's an example of what mine looks like on wikipedia: http://en.wikipedia.org/wiki/Ileostomy

The pouch just hangs off my left side, I tuck it into my pants when I go out, you can't even notice it.

 

[giftedbyadoption]

Yah here's an example of what mine looks like on wikipedia: http://en.wikipedia.org/wiki/Ileostomy

The pouch just hangs off my left side, I tuck it into my pants when I go out, you can't even notice it.

Thats a large bag for sure!! Whats the difference between that and a Jpouch until
I joined here I never heard of the Jpouch....

 

[Anthonyx07]

Thats a large bag for sure!! Whats the difference between that and a Jpouch until
I joined here I never heard of the Jpouch....

Well that bag is pretty large, mine is smaller then that one but it gives you a general Idea. There are a lot of different bags you can get. One piece, two piece (I use two piece). One time use bags, bags you can empty and use over the course of 4-5 days (what I use). I use the smallest one since I'm not that big of a person (5'9")

This is what a J-pouch is: http://ibdcrohns.about.com/od/pelvicpouch/g/j-pouch.htm

He told me he would do a jpouch if my descending colon is still infected and he can't reconnect it. I don't know how he is going to do it though because it says that they use the terminal ileum and I don't even have one anymore. Guess that it on my list of questions to ask my doctor now

A Jpouch is suppose to imitate the large bowel since people with J-pouches dont have the large colon. It is just used to hold more stool I think but I've heard of people that go to the bathroom almost 20 times a day with the J-Pouch so I'm kind of hesitant on getting that

 

[giftedbyadoption]

Well that bag is pretty large, mine is smaller then that one but it gives you a general Idea. There are a lot of different bags you can get. One piece, two piece (I use two piece). One time use bags, bags you can empty and use over the course of 4-5 days (what I use). I use the smallest one since I'm not that big of a person (5'9")

This is what a J-pouch is: http://ibdcrohns.about.com/od/pelvicpouch/g/j-pouch.htm

He told me he would do a jpouch if my descending colon is still infected and he can't reconnect it. I don't know how he is going to do it though because it says that they use the terminal ileum and I don't even have one anymore. Guess that it on my list of questions to ask my doctor now

A Jpouch is suppose to imitate the large bowel since people with J-pouches dont have the large colon. It is just used to hold more stool I think but I've heard of people that go to the bathroom almost 20 times a day with the J-Pouch so I'm kind of hesitant on getting that

Ok so the Jpouch is internal thats why I had not heard of it .... thats the one they plan on do for me from the beginning but I am not sure I want it because I cant get my weight back as it is. I am 5-8 and 96 pounds I usually weigh around 125!

Thanks for all the links and answers...... what state do you live in?

 

[Anthonyx07]

I live in canada actually. Vancouver BC

 

[giftedbyadoption]

I live in canada actually. Vancouver BC

LOL.... boy I think everyone does on here, this is a huge surgery over there it appears maybe I should move there ha..ha..:dance:

 

[Anthonyx07]

LOL.... boy I think everyone does on here, this is a huge surgery over there it appears maybe I should move there ha..ha..:dance:

Yah there are a lot of amazing GI surgeons in vancouver. My GI doctor got me a surgeon that does this type of operation on a daily basis so I was pleased with that.

 

[giftedbyadoption]

Yah there are a lot of amazing GI surgeons in vancouver. My GI doctor got me a surgeon that does this type of operation on a daily basis so I was pleased with that.

:heart:

 

[maria]

Yah there are a lot of amazing GI surgeons in vancouver. My GI doctor got me a surgeon that does this type of operation on a daily basis so I was pleased with that.

My dream come true. I wish I was there! :ybiggrin: