J-Pouch Questions

[Dukeis]

I haven’t talked to the surgeon yet, but I seen my GI this past Monday. He told me he believes I would be a candidate for a J pouch.

I’m not sure about this and have some questions for people who have and are actually living with a J pouch. The doctor said best case I would have 4-6 bowel movements a day. Is the normal for most people? Do you have a problem with being incontinent when you have a J pouch? Do you have the same sense of needing to have a bowel movement as you did before you had your colon removed? Could you tell me the good and bad of having the J pouch?

The reason all this concerns me is that this seems worst then I am now. I haven’t had a major flare that has sent me running to the bathroom all through the day in many years. I’m not having a colectomy because of a major flare, it is because the long standing Crohn’s has caused dysplasia and the colon has to come out. In fact I have been feeling pretty good the past few months as far as the Crohn’s goes. Feeling good and being told my colon has to go is the weird thing to me.

 

[2thFairy]

ChristineinDenver, Hobbes650, hangingon, Mr Bedfordshire, ameslouise are a few of the people here who have had or still have a J-pouch. Hopefully by tagging them in this post, they will see this and be able to answer your questions. You might send them messages as well.

 

[2thFairy]

I am a bit surprised that your surgeon suggested a J-pouch if you have Crohn's. Generally this is not done for Crohn's, but only for UC, since Crohn's is likely to come back in the pouch.

 

[Dukeis]

I am a bit surprised that your surgeon suggested a J-pouch if you have Crohn's. Generally this is not done for Crohn's, but only for UC, since Crohn's is likely to come back in the pouch.

It wasn't the surgeon that told me this it was my GI Doc. I see the surgeon next Tuesday. I kind of thought the same thing. The surgeon may tell I'm not a candidate for the J-pouch.

 

[2thFairy]

Oops! My mistake; I see that you did state that eariler. I have a J-pouch formed but haven't used it yet...I like my ileostomy that much. I wish you the best of luck no matter which way this goes for you. It is a mindblowing concept.

 

[Dukeis]

Oops! My mistake; I see that you did state that eariler. I have a J-pouch formed but haven't used it yet...I like my ileostomy that much. I wish you the best of luck no matter which way this goes for you. It is a mindblowing concept.

I'm leaning toward the ileostomy myself. The thought of having to go 4-6 times a day seems more like a flare to me.

 

[Hobbes650]

I'm leaning toward the ileostomy myself. The thought of having to go 4-6 times a day seems more like a flare to me.

Hi Dukeis,

Few thoughts about this. If you do have Crohns then your G.I. doctor is in the minority when he says you might be a candidate for a j-pouch. The few people I know who have Crohns and have or had a j-pouch all had their diagnosis changed to Crohns from UC after the surgery. Please note that with a j-pouch they use the end of your small intestine to make the pouch, and that's the part most offent affected with Crohns so most doctors do not consider it a reasonable option.

As for life witha j-pouch, it's certainly much better than living with a colon that needs to be removed. I would say 4-6 times a day is the average amount, but 6 being more common than four. You do have control over it, and it feels the same. At first though,the little muscles that give you control aren't as strong, so you'll go more often. They muscles do get stronger over time but sometimes they don't and you have to exercise them. Surgery to make them stronger is another way, but that's not very common. Your output will be thinner than a normal person so you won't have as much control as before, but certainly an acceptable amount. The only realy adjustment to make is you'll need to add some fiber to your diet, or take something like immodium. You'll also need to have some cream- since the ouput isn't so firm, the skin down there can get pretty angry.

When everything works well, peole with a j-pouch are pretty happy. By working well that means their output is pretty firm most of the time, their skin issues are minimal and they have good bowl control. Sometimes it takes a while to get to that point, and sometimes the problems that occur never seem to go away. Two problems that I think are more common than others are the lack of muscle strength down below, and stricturing/narrowing of your opening. If there is some narrowing, then you have to use dialators to keep it open for a while. Many people with a j-pouch have to make some kind of adjustments at some time but as long as their pouch is healthy, they are without pain and have decent control over their bowels they are happy. Those of us who have had recurring problems like chronic pouchitis, abscesses, or other problems all requiring surgery- well, if those problems always seeem to come back then the ileosotmy is a better choice. With UC sometimes the problems are caused by the disease itself which can remain in the stump of the rectum left behind (needed in order to connect the j-pouch). This can cause cuffitis (inflammation of that stump), and may also cause some pouchitis. Another reason for problems recurring is that the original diagnosis of UC was incorrect and the disease is really Crohns Colitis. Sometimes Crohns Colitis will look exactly like UC so there will always be that possibilty of Crohns when the patient has UC. That's what happened to me- we got rid of the j-pouch and went with the permanent ileostomy after a few years of fighting j-pouch problems. I then went 20+ years without problems and was diagnosed with Crohns in ileum in May 2012- thus, that must have been the reason for my constant j-pouch issues. At the time I was having the problems though, nobody really knew why these problems kept coming back so I kept chugging along trying to fix them. Ultimately gave up and then got my life back.

Nobody can predict what course you will have with a j-pouch, but it's really not a good idea to get one with a Crohns diagnosis. If the diagnosis is UC then it's certaintly a reasonable option to try, but be aware going you may have future problems. By that I mean if you get one and then, say, you have to move to another state for work, the first thing you want to do is find a surgeon who can help you out should you have any problems. That's not too hard, but certainly something to be aware of. Hope things work out soon for you!

 

[Hobbes650]

I'm leaning toward the ileostomy myself. The thought of having to go 4-6 times a day seems more like a flare to me.

Remember though, when you have a j-pouch you go more often but you still have control, so it is not the same as having a flare up. With and ileostomy you will easily go more often than 4-6 times per day (I go 6-8). Not only will you have control, you won't spend nearly as much time trying to push everything out- your output is thinner so it takes much less effort. A flare up is painful and you when you lack the control you rush to the restroom. With a j-pouch or an ileostomy you can go back to walking. No rush.

 

[Dukeis]

Hobbes650,

Thank you for the very helpful information. I still wonder why my GI thinks I would be a candidate for the J Pouch. They did an ASCA test and it was positive for Crohn's. We questioned him about this and he said his reason was my Crohn's has always been in my colon. It will be interesting to see what the surgeon has to say next week about this.

 

[Hobbes650]

Hobbes650,

Thank you for the very helpful information. I still wonder why my GI thinks I would be a candidate for the J Pouch. They did an ASCA test and it was positive for Crohn's. We questioned him about this and he said his reason was my Crohn's has always been in my colon. It will be interesting to see what the surgeon has to say next week about this.

Definitely want to get another viewpoint. Mine was in my colon and I had over 20 years of remission. But when I had the j-pouch, I had LOTS of problems. Your doctor's explanation MAY make some sense- I do know of people who still have their j-pouch even thought hey have Crohns. But as I mentioned, their Crohns was discovered after their surgery. One in particular had lots of issues at first but her issues were not from Crohns. She may have to give up her j-pouch at some point, but for now the remicade and MTX seem to be keeping her in remission- so, I could see why a doctor could recommend the j-pouch if it was just the colon. I'm curious what your surgeon has to say, especially about doctors who recommend j-pouches with Crohns patients.

Some day the drugs for Crohns may be so good that if only the colon is affected, the j-pouch would be an option- believing the drugs would keep the disease in remission for a long time. I'm no sure we're at that point yet, but it does seem like we're moving in that direction. Your doctor could very well just be a little ahead of the curve in his thinking- but even so, that wouldn't do you any good if the medicine is still a ways behind.

 

[Dukeis]

I just found this it is just an abstract not paying $31.50 to read the whole thing:

http://www.seminarscolonrectalsurgery.com/article/S1043-1489(12)00050-4/abstract

I wonder if this is along the lines of thinking that my GI Doc has. It states mainly patients without perianal and small intestinal diseases. I would fall in that category.

 

[Hobbes650]

I just found this it is just an abstract not paying $31.50 to read the whole thing:

http://www.seminarscolonrectalsurgery.com/article/S1043-1489(12)00050-4/abstract

I wonder if this is along the lines of thinking that my GI Doc has. It states mainly patients without perianal and small intestinal diseases. I would fall in that category.

Yep, that's exactly what I was saying so it seems this discussion has already started.

Think of it this way, if you don't have any illness other than in your small large bowel, then your illness will be gone once you have the surgery. BUT you will not be cured, and you'll know that going in, which in my opinion is the right frame of mind to have going into j-pouch surgery. IF problems come up then you deal with them, just like I had done. I was young and since we didn't know what was casuing all my problems we kept trying to fix them, until I got tired of it all. Knowing that you have Crohns would suggest you and your doctor won't have as much patience, but when problems do occur you'll start discussing shall we try and fix it or go to the ileostomy? That's the real question you'll want to discuss with your doctor now. Maybe it's worth a shot and if you go 10 years without any problems that's great! But if you get problem after problem in the first couple of years, that's not so good- can you deal with that? Would you quit the first time a problem comes up? You just don't know what the future is going to hold so the question then becomes, how much do you put up with when things go bad? How much can I afford financially? How much time can I take off from work, etc, etc. If you can set comfortable limits then it would help. It's a difficult thing to start on one path and then realize after many years, you wasted all that time with the wrong decision.

And that is why this is controversial with Crohns. Many doctors would say don't bother. Others would say that it's really the patient's choice. Having an ileostomy removes all of this doubt and dealing with flare ups while with an ileostomy is certainly much easier than with a j-pouch because your pouch still gives you control. But the ileostomy is disfiguring and can be hard to accept mentally/emotionally, and there is that "stigma" so people will feel "sorry" for you. Personally, I could care less. But remember, no matter what surgery you have, a proctocolectomy is a life-saving procedure as well as a life-improving procedure. The life-saving part is easy to forget since you don't sound like your going to die tomorrow unless you have the surgery. But when you really think about it, if you don't have the surgery only bad things would happen later on and then what? Which type of surgery is a tough choice, but if anyone says to have the j-pouch because it's better than wearing a bag that's just not true all the time. There are other things to consider too, as mentioned above. I've had this ileostomy for so long that if some procedure existed that was 100% effective and allowed me to get rid of my ileostomy I still would keep mine. I've had enough surgery (14 total due to IBD) and I feel my life is very normal so I have absolutely no desire to try something new. I want to keep enjoying things and more surgery for me is a step backwards. I'm 44 now. I don't regret having the j-pouch at 19 since it was a very rational decision to do that when we all thought it was UC. I guess the million dollar question is, if you do choose to have the j-pouch but then choose not to deal with the problems for very long, why bother going there in the first place? Only you can weigh the pros and cons. The cons of the ileostomy are definitely understandable and there is nothing wrong with giving a j-pouch a shot so to speak. After all, you will feel more "normal". But you do feel "normal" with an ileostomy too. It's just different. Easier to say this now than when I was in my 20s though.

 

[Dukeis]

Hobbes650,

That you so much for your informative and thought provoking incite into this matter. My wife who is a Registered nurse is on the side of the ileostomy, but said she will support what ever choice I make. She has seen some of the bad things that happen when the J pouch has a lot of problems. She also said she wouldn't really know how people that it works out okay for fair because they don't come into the hospital.

I have dealt with Crohn's for over 20 years now and the thought of not worries about where the next bathroom is seems very good to me. Like I said I haven't had a big flare in over 10 years and the thought of having to go 6 times a day doesn't seem appealing to me. I think I can get use to the bag. My biggest problem now is in the morning I tend to run to the bathroom several times after I eat. This makes it real hard to just leave the house on short notice. To think I could tell everyone else to get out of bed and lets go somewhere sounds really cool to me. The body imagine thing is not a problem either to me. I'm a 49 year old man and by no means a super model.

I just want to educate myself as much as I can before hand for I don't look back and think I wish I would have done something different.

 

[Hobbes650]

Hobbes650,

That you so much for your informative and thought provoking incite into this matter. My wife who is a Registered nurse is on the side of the ileostomy, but said she will support what ever choice I make. She has seen some of the bad things that happen when the J pouch has a lot of problems. She also said she wouldn't really know how people that it works out okay for fair because they don't come into the hospital.

I have dealt with Crohn's for over 20 years now and the thought of not worries about where the next bathroom is seems very good to me. Like I said I haven't had a big flare in over 10 years and the thought of having to go 6 times a day doesn't seem appealing to me. I think I can get use to the bag. My biggest problem now is in the morning I tend to run to the bathroom several times after I eat. This makes it real hard to just leave the house on short notice. To think I could tell everyone else to get out of bed and lets go somewhere sounds really cool to me. The body imagine thing is not a problem either to me. I'm a 49 year old man and by no means a super model.

I just want to educate myself as much as I can before hand for I don't look back and think I wish I would have done something different.

Sounds like the negatives of the ileostomy aren't a concern for you, so that makes the choice pretty clear. There is a learning curve with the ileostomy and we all have our share of "accidents" in the beginning. But we get the hang of it pretty quick. Some people do get up a night to empty the pouch but if you stop eating early enough, you can get a full nights' sleep without the pouch needing to be emptied. There are also LOTS of resources to tap into besides the hopsital nurses. The best resources I found (besides this forum) are the ostomy specialists - many of the pouch makers have them and they love educating patients. Will even send lots of free samples- which is the best way to find out what you like best. You'll find lots of conversations in the stoma subforum here which are also helpful. Either way though, your days of running to the restroom seem numbered, and that's awesome!

 

[CourtneyHK95]

I have UC and I have a j pouch and it seems to work good for me, they give you medicines that you take as needed if you use the bathroom a lot. My sister also has crohns and has a j pouch too, and she has been doing amazing, she lives a completely normal life and doesn't use the bathroom much at all. My surgery is more recent so I go about 3 or so times a day depending on what I eat but on days I take my med (limotal) I only go once or twice. I hope this helps give you a little more info on a j pouch from another person that has one.

 

[maria]

Careful they might not do the reversal if you have crohns.. Mine said they would do my reversal but after taking my colon they changed their minds. I got so upset! I fought for a year and finally convinced a different surgeon to do my takedown. It was so scary but I was so set on getting back to myself physically. After getting my takedown yes you do have to use the bathroom a lot, The feeling is still the same as before but the bowl is very loose which causes the butt burn. So I guess I do dread going to the bathroom. When I eat I have to empty my jpouch about 10 minutes after. Then about 20 minutes later I have to go again. This is the process for me every time I eat something. If I don't want to deal with bathroom I just don't eat. When I pass gas For the most part I can tell between a bowel movement and gas. If I hold it in it hurts! like major pressure.