Im currently on medication, and its working ok, but i really dislike the medicine, it makes my head hurt and it makes sick for about 2 days. I get it once a month. Metotrexat (it might not be the english word for it, the norwegian word goes something like that)

So im kinda concidering surgery, and i was wondering how its like going to the bathroom 5-6 times a day?

I was thinking that if i had to go 5-6 times a day, i would have to go while i was in school..?

how's it like holding it, when you have j-pocuh?

Hi there,

Im new to the forums as well, but barring any complications, the feeling is COMPLETELY different than having UC. Even just a week after my surgery, I was feeling the "urge" to go, but I was able to hold on for a considerable amount of time before having to go to the bathroom.

Im about 5 months post takedown and I can regulate things pretty well at this point. If I have an early morning meeting at work, I may just skip breakfast, and in doing so wont have to go until I come home from work.

Everyone is going to be a little bit different, but I found that just the pain relief from not having a colitis-ridden colon was worth the surgery in itself.

Regards,

Bill

Bill is right on. I think when you have UC the biggest problem is the pain and horrible urgency and not being able to hold it in, not the number of times you go in a day. Because with the pouch many of us make multiple trips to the loo everyday. But a lot of us are happy and have no problem with that. Because there isn't terrible pain or urgency. For the most part, we control it. It doesn't control us. Personnally, I really don't even remember the difference between having a healthy colon or an s pouch. I just go a little more often and it is a little more loose, which is no big deal.

I guess I'm a j-pouch veteran since it's been almost 9 years since my surgery. I can tell you that going to the bathroom 6-8 times a day is no big deal! I am very active and it does not interfere with my life at all. I have excellent control and am able to hold it if I have to, although I do not recommend doing that for too long. I do not understand why anyone with UC would not go ahead and have the surgery. It is a cure! Just be sure you go to a surgeon who has done quite a few of them. The success of your surgery and life after surgery largely depends on the skill of the surgeon.

Another note for me is on good days I find myself going to pee more than anything! I also find when I go pee I will empty the pouch as well, so it may be more pouch emptying, but technically, it is out of convenience than really having to go.

Hi,
Holding in your movements for extended periods of time is really possible. If you go to school like I do, you can empty the pouch before you go to school and also take an anti-diarrhea pill like immodium. Eventually, you will become more comfortable witth your pouch with time and more experiences.
good luck if u do decide to get J'd up!!

Although the frequency varies for each person, there are things you can to control it. Certain foods will often result in less bowel movements and a bit of trial and error with your diet will enable you to fit it into pretty much any lifestyle.

The function of the pouch improves over time. These days I can eat pretty much anything whenever I want (salads and pure fruit juices can still cause problems with urgency, but that's about it).

As far as holding it goes, I could hold with comfort for about 10 minutes a couple of weeks after surgery and for 30 minutes with reasonable comfort within a couple of months. This was without making too much of an effort with diet. If I really wanted an uninterupted morning, eggs worked for me. I'm not sure what the maximum amount of time I could hold for now, but I know from experience it's at least an hour.

You'll adjust in other ways too. What I often tend to do now, is urinate at the same time I have a bowel movement. The bowel movement tends to be faster than pre-UC due to it being much looser so I tend to think of going to the toilet for a bowel movement in much the same way as I used to just to urinate.

Obviously things are difficult for a while after the surgery, but having had it I don't feel like I am having to 'cope' with anything like I did before. Life feels normal.

quote:

The bowel movement tends to be faster than pre-UC

That's another thing. When I had UC I'd be in the bathroom for soooo long, now my max has been 5 mins and that's nothing, usually it's less than that!

I hate to be the devils advocate but I wish someone was before I had my surgeries. Not that it would have changed my mind, but at least I would have known more about it. Yes they say surgery is a "cure" but thats not exactly true. Sometimes you end up with cuffitis, pouchitis, or just simply your pouch does not work correctly. I fairly good percent of people probably never come to this site because they don't have problems. So when you see all the problems that people have on this sight your only seeing the 10% or so that have issues. For me going to the bathroom often is part of life now. It seems weird but I remember with a healthy colon some days I wouldn't need to go at all. But now mostly you just go especially after eating meals. I would say barring the cuffitis and stricture I'm dealing with now I can sometimes go 3-4 times a day. Once after breakfast, mid afternoon, dinner, and either before I go to sleep or in the middle of the night. I ended up with severe complications from my first surgery but that was also because I had the surgery performed in the middle of a bad flare. If you have it done when your healthy the risk of complications is much less. By healthy I mean not on a high dose of prednisone. So just remember there are sometimes issue you still have to deal with after the surgery. My new pouch isn't a year old yet so I think as time goes on I will get much better. But be prepared to deal with some getting used to for a year or two. It's not like you wake up the next day pooping better then ever. I think thats kind of how the surgeons explained it to me, they really never talked to me about complications. So it's good your asking on here.

My surgeon discussed the potential complications to the point I didn't have the surgery when my GI first advised. Five years later I was diagnosed with cancer and had the surgery. Again, I almost kept the ileo bag because I was so disgusted with the thought of incontinence, infection, etc. I ended up having the surgery and going "5-6" times a day is wonderful compared to the 15-20 with UC prior to surgery! So far I've been very fortunate to have a healthy pouch, able to sleep through the night most nights, and NO incontinence-even just after surgery. Best of luck to you whatever you decide!

Hei på deg Korny! Welcome to the boards! I think we're the only ones in Norway
I was operated at Aker sykehus in August '06, then had TD in January '07. I never had methotrexate but I had Remicade, which sadly didn't help. Surgery was a long and very difficult path for me, but it was the best thing I could have done. I feel healthy for the first time in years. I go to the loo a lot (more than 5-6 times a day) but the big difference, Korny, is that now YOU decide when you go. No more "Oh god, 30 seconds to lift-off and counting....". You feel that you need to go and can walk off to find a toilet without panicking. No pain, no blood, no meds. (Assuming your surgery is successful like mine was.) Small problems aside - like a bit of wind, looser stool than most people, the odd attack of hemorroids - life is great!! Feel free to PM me if you have Norway-specific questions.
ps: You can PM me in Norwegian, no probs!

Hi...Have you been on "literally" every medication out there? Unfortunately sometimes people end up with more problems then when they had with UC. A different set of problems, but problems none the less. Going to the bathroom 5-6 times a day I think is for the luck ones. Do your research, and give it alot of thought.

Hi Korny,

I'm one of the "lucky" 90-95% of J-pouch patients that only go 5-6 times a day. I had my surgeries in 2004 and in September 2005 I took an all day helicopter tour of the Grand Canyon. I was a little apprehensive about how long I could go without emptying my pouch - but when you're faced with the prospect of using a portapotty in 110 degree heat - you only go if you absolutely have to! I only went to the restroom once the entire day - along with the rest of the tourists on the trip.

There really isn't any comparison with your UC trips to the restrooms. I have no pain, no urgency, no anxiety at all. I just start getting a sensation like I'm getting "full", similar to how you feel your bladder getting full.

Good luck with your decision. Keep in mind that, like you, most people visit this site to find information/support about problems they are having. The percentages of people with problems appear to be skewed because of the nature of this forum. (Please don't get me wrong - this is the best site ever!)

Well, the thing is that im currently in a good periode. I go to the bathroom from 0-2 times a day (usually 1). But i feel like the problem is as much the meds as it is UC. I got prednisone resistant. Currently im on remicade and methotrexate. Its working quite good, the doctor is even concidering stopping remicade. The problem for me is that when i get methotrexate i feel a total sencation of illness for about 2-3 days. Methotrexate i get about once a month, and it kinda feels like it gets worse each time. At the moment i get it on fridays so to not miss any school, but it takes out my whole weekend.

Now im just considering whats best. But with the pouch i guess you pretty much avoid the casual pain when pooping, and the urgency to go, like you said.

Trying to decide when enough is enough and the time has come for surgery, is really hard. It all comes down to your general quality of life, I think. I don't mean to sound flippant, but some women have 2 or 3 days knocked out of every month through painful periods. You just get used to it. Others would probably have opted for surgery to get rid of these awful, painful days if this had been possible. Going to the loo once or twice a day is really pretty good...but if each time involves blood, pain, urgency etc. then for many people this will be intolerable over time. Unfortunately, noone can say in advance whether surgery will make you feel better overall than you are feeling now, with UC. If you feel generally under the weather a lot, the UC interferes with your daily life and stops you from taking part in activities that you'd have like to do, then surgery may well be best. But if you're not suffering on a daily basis I'd be inclined to wait. After all, you can get surgery done later. Once it's done, you can't change your mind.