J-pouch question

Hi, BenB. 

I think it might have something to do with mindset. My surgeon and my doctor said I was a good candidate for a j pouch because I was 100 % committed to the idea of a j pouch. They knew I would do everything I could to make it work. They didn't want me to be "one-foot-in, one-foot-out" frame of mind. 

Winterberry posted:

Hi, BenB. 

I think it might have something to do with mindset. My surgeon and my doctor said I was a good candidate for a j pouch because I was 100 % committed to the idea of a j pouch. They knew I would do everything I could to make it work. They didn't want me to be "one-foot-in, one-foot-out" frame of mind. 

Sounds like we are very similar. When I first asked about surgery my GI really didn't want me to do it but I had already done my research, I knew what surgery ment and it's what I wanted. I essentially demanded to see a surgeon.

The next few meetings where almost pointless because I was 100% set on it. I'm ready for the J-pouch. I'm not sore, not bruised, stitches are removed etc.. I'm just really good, feel like I could go in for my next operation tomorrow

I'm very stubborn, once my mind is made up, it's difficult to change. I personally think that's how you need to be, if I wasn't my GI would just have me trying different medication every few months.

Is there any indication of how well you might do with a J-pouch? For example, I empty my stoma 2-3 times a day, does that translate over to going to the toilet 3-4 times/day with a J-pouch? (Hopefully that makes sense)

I'm excited and eager for my next meeting with the surgeon

I can't understand why your surgeon made such a statement, everyone who wants a J pouch wants it to work forever; although, if it doesn't work, worry about that when it's not working and see what's available then, such as more advanced techniques, procedures or medication, who knows.

There are risks but if we don't try, we'll never know.

I've only had my J pouch since Jan 2015 and without issues;  it's one of the best decisions I've ever made and if it all goes wrong in the future, then yeah, maybe they'll be no choice but to revert back to a Stoma.

Remember, I had my Stoma for 9 years.

Since full recovery and takedown, I empty my J pouch rarely less than twice per day and very very rarely more than 4 times per, so on average, 2 to 3 times per day sometimes 4,, not everyday, it varies, I guess depending what I eat, drink and when I wake up.

When I remember, I take 4 Imodium per day, which thickens and slows my output, if my output is more  loose than what I regard as normal, I take an extra Imodium, maybe 2.

I only think of toilet use when using  it or when writing about it on this forum.

strange posted:

I can't understand why your surgeon made such a statement, everyone who wants a J pouch wants it to work forever; although, if it doesn't work, worry about that when it's not working and see what's available then, such as more advanced techniques, procedures or medication, who knows.

There are risks but if we don't try, we'll never know.

I've only had my J pouch since Jan 2015 and without issues;  it's one of the best decisions I've ever made and if it all goes wrong in the future, then yeah, maybe they'll be no choice but to revert back to a Stoma.

Rememver, I had my Stoma for 9 years.

Since full recovery and takedown, I empty my J pouch rarely less than twice per day and very very rarely more than 4 times per, so on average, 2 to 3 times per day sometimes 4,, not everyday, it varies, I guess depending what I eat, drink and when I wake up.

When I remember, I take 4 Imodium per day, which thickens and slows my output, if my output is more  loose than what I regard as normal, I take an extra Imodium, maybe 2. 

I only think of toilet use when using  it or when writing about it on this forum.

Emprying my J pouch never interferes with my day to day activists, nor does it impact on my intensive self defence training

 

 

 

2-3 BM's/day would be amazing, have been reading that the average is 4-8.

How is your urgency or can you hold it need be?

No urgency whatsoever.

Some days  more often than not, can be as many as 4 BM per day and on very rare occasion 5, but never more than 5 or less than 2 per day;  no day is ever the same.

Very rarely do I awake from my sleep either, has happened  once or twice  but I do tend to sleep through for 8.9 or 10 hours without issues.

My Surgeons said 4-8 BMs per day is what is regarded as ideal.

I also eat absolutely anything and whenever; my diet now and how often I eat, has always remained the same, just as it was before my bowel was removed and during the 9 yrs with the Stoma 

strange posted:

No urgency whatsoever.

Some days  more often than not, can be as many as 4 BM per day and on very rare occasion 5, but never more than 5 or less than 2 per day;  no day is ever the same.

Very rarely do I awake from my sleep either, has happened  once or twice  but I do tend to sleep through for 8.9 or 10 hours without issues.

My Surgeons said 4-8 BMs per day is what is regarded as ideal.

I also eat absolutely anything and whenever; my diet now and how often I eat, has always remained the same, just as it was before my bowel was removed and during the 9 yrs with the Stoma 

 

Great to hear you have had such a positive outcome, hopefully I can get something similar 

BenB posted:

Almost coming up to a month since I was in hospital and had my large bowel removed. Currently have an ileostomy which I'm getting on with fine, it's easy enough. I'll be discussing with my surgeon in a few weeks about a J-pouch.

I think as it's an option available to me, I'm young, fit (as much as I can be) I've got to give it ago. I feel good, really good. 

All my symptoms have gone completely gone (TOUCH WOOD) 

One thing the surgeon said to me the first time I saw him, you shouldn't go into having a J-pouch with the mindset that if it wasn't to work, you could just go back to a stoma. Any idea why?

Benb.

I believe what your surgeon said to an extent is true.  Especially in my case. 

I wasn't committed to making it work. Really just thought it would work on its own. It didn't. 

But. From what I read in your post. I think.... And it's Just my 2 cents.... You can do it. I think someone can tell. To a point. If it will be the right thing to do. 

The seed of doubt was planted long before I even tried by my gastrointestinal Dr. And I think deep down that led to its failure. Although I don't blame anyone at all. Just the nature of the beast as they say.  If I were younger and healthier mine may have worked. I was 58 when I did it. I'm 61 now with an end ileo. Which is what I know now I should have done. My UC was in the first few inches of my  rectum.   You wouldn't think that would be much of a problem. Trust me. It doesn't take much to make a person miserable. 

Back to what you were saying. 

Knock on wood and go for it. Your healthy. Young. And have a positive attitude towards it. Sounds like the right combination to me anyways. 

Richard. 

You go for it. 

I had a full reversal after many years of extreme symptoms, which I'm sure your aware. Finally the surgeon I saw told me he would cure me! I cried. Full throttle I went through the process in about 9-12 months. Fully committed to trying it. 

Mindfull as always of their advice.  I can tell you best thing every (or suffer... duh!).  

I go about 4-8 which is my average. As said by others dependant on food. I eat all sorts of spicy things. Be mindful of processed stuff.. trial everything you like. 

I have between 2 to 8 loperamide a day. 

Where they joined my tube back up from my stoma, the join is slightly narrower, waste passes through, makes a bit of a noise, and sometimes (I think wind mostly) passes through and causes uncomfortable moment. Usual indicator for me to pay a visit!!

when I do pass it sometimes stings. I have gotten used to it, they say use barrier creams. Vasaline works well. I tried to get my skin used to it a bit. Still, be careful due to wiping more than your average still!

you try what your happy with. My father didn't due to age.  I've had mine four years now. No urgency. Such a good move. 

Good luck, you sound positive. That's the best way. 

Hey BenB,

Glad things are going well for you.  Nine months out and I did a 5k today, got up at 7:30, had my breakfast, took 2 Lomotil, did the 5 k at 11:00, had lunch and never used the toilet until 3:00 in the afternoon.  Only started to feel uncomfortable about 45 mins. before, but had to drive home.  So, most likely, based on my pattern, will probably only go one or two more times today.  I only take Lomotil on days I need it, once a day and Immodium before bed.  Doing really well!  Not everyone has the same results, so really happy with mine!  Just knowing I can hold it for a while is great!  

@Mysticobra Ill be giving it ago for sure. I'm 24 so hopefully youth will be on my side 

@Shippie That's great to hear. I have barely tasted any foods if I'm honest due to being worried that it would set me off. Have been out of hospital 3 weeks now and have tried various things which is awesome. It's such a good feeling to be able to eat stuff without having to worry what might happen later on

BenB it get easier very quickly. I relaxed into knowing what sets things off quicker. Also knowing what might sting. 

If I know things will move quicker, after something I fancy, then I will compensate with loperamide. It's gauging that level you are comfortable with, how often is ok to 'go'!

it is a good feeling, to eat what you want. 

You now have some sense of normality. 

It would be no question had I been 24 at the time. 

It was no question when I did decide. But I know I may get feedback on this but I don't think I was a good candidate for it. And my age was a factor. I was too old. I think I was. But that's just me. 

Good luck man. I really mean that. Being only 24. I wish you the best. And making me feel old! Lol. 

Richard. 

Benb, I think you doc was saying that if the NHS goes through the expense and effort of getting a jpouch then you need to make every effort to get along with it.  It's not a trivial matter to remove it again.

I think he just managing expectation, perhaps you did you wanted to 'try' the JPouch and he was trying to explain its not like taking a car for a test drive!  It's more like buying a house!  It's considered permanent (it can be undone, but that is not the aim of the objective)

Ben do not go crazy on the food yet.  I know it is a relieve that those foods you used to eat might have made you sick.  But do not go crazy and eat everything.  I would stay away from extreme fiber and nuts and a bunch of raw vegetables for sure right now.  Pop is not a good thing either because of the carbonation.  I have had a j pouch for 23 years and truthfully after having the pain of Ulcerative Colitis I think everyone should have a j pouch lol  Just be careful...let your body get used to it.

One more thing the best toilet paper in the world is Charmin with aloe Vera..costs more but it works so much better than normal toilet paper.

Pilot Debby makes a very good point. 

Things need to settle down first. Body needs to adjust. Simple foods to start with. You and your body need to learn what is ok, and not. 

Carbonated drinks ouch... after four years, I only have them on occasions. 

As for toilet paper, have done wet wipes, moist toilet wipes to hand. It is a relief. 

I'll have to try the Charmin, even after this time I try all sorts.  Something with a bit of substance that isn't ruff!!!!

Tip.1 always check paper situation before you sit down. Especially when your out. (Have a small packet yourself)

I had a small pouch (scuse the pun) to start with. Essentials. Wipes, barrier cream and dry toilet paper, oh and coins for those toilets to pay to enter. 

There wasn't the sense of urgency, but I was still in the mind set of searching out for a toilet wherever I went before I settled. I was comfortable then. 

Bobish posted:

I think he just managing expectation, perhaps you did say you wanted to 'try' the JPouch and he was trying to explain its not like taking a car for a test drive!  It's more like buying a house!  It's considered permanent (it can be undone, but that is not the aim of the objective)

That's a very good point Bobish.

@Bobish That makes sense. Just a poor choice of words on my part. Ill make it clear to him next time we have a talk. It's 100% what I want and I'm positive it's going to be successful. No point doubting it, that's half the battle

@Pilot Debby I'm still cautious and taking it easy instead of stuffing my face like I want to . There are so many things I always wanted to try but never could

Ill have to remember about the toilet paper

@Shippie I have tried a few drinks such as coke, I let them air for a bit just to get some of the fizz out but other than a small amount of gas there hasn't been any problems. Literally just now and then, that stuff is terrible for the body so ill generally stay clear of it

Surgeon said at least 3 months between surgeries, means roughly 2 more months (hopefully). Seems so far away, I'm ready to go now 

2 more steps to go

I had 7 mos. between first and second surgeries and another two months to takedown.  It really wasn't so bad.  My surgeon was very upfront about how long he said it would take, 9 mos. from start to finish, and it was.

It'll come quicker than you think. 

Then you can put a lot of this behind you. 

I forget at times how bad it was. Thankful for the opportunity.  

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With my Stoma, yeah fizzy drinks frothed up and filled my bag quite quickly.

I don't drink alcohol, so if on a night out, I tend to drink pints of Coke, yeah pints and before the J pouch; due to the fizzy drinks I'd have to change the bag twice over a 2 hour period or maybe I'll have to leave early, depending on venue, cleanliness of toilets or whether a McDonalds was close by and open.

Other than contents of bag being of a pure liquid Coca-Cola type consistency and ballooning and an annoying inconvenience, I managed, I had to.

Since my J pouch, I tend not to go out so much or drink fizzy drinks, especially CocaCola and in such quantities but I can drink a full can of Coke or similar without issues  

I think how you recover really depends on your health at the time of your surgeries.  My colon perforated and I had been sick in the hospital for weeks so I was already very weak.  It was very tough for me after the first surgery and they did not even give me a 50/50 chance of surviving the original surgery.  My doctor years later told me it was so nice to see me doing so well that when he sent me home he did not think I would make it, I could not even barely walk around the house.  Now here I am 24 years later and I have my ups and downs but anything is better than having ulcerative colitis.  If you are healthy going into the surgery for a j pouch it makes it much easier and I would not trade my j pouch for anything now.

It definitely is better to have the surgeries if your healthy. I say this because before both surgeries I definitely wasn't healthy. I once almost passed out at my surgeon's office, luckily my mom and the nurse was there. I also haven't had much of an appetite in a while but that was a side effect of metformin. Plus I was prediabetic at the time and I had IBS so couldn't keep any food in me. I also ended up with gastroparesis which means I had to change what I eat and drink. I used to throw up a lot because of gastroparesis but now it's not as bad. I still am very weak and have almost passed out many times. Which if I get close to passing out, I try to stand still for a little bit until it passes. Since I'm so weak I can't lift much now, good thing I have a good support system. I can't keep any food in me still but my appetite has gotten a little better. I guess the side effects of metformin are not gonna go away. I still don't eat much but I eat as much as I can handle. Otherwise if I eat too much I throw up because if my gastroparesis. I refuse to give up though because I know I can do it. Oh and I was only 24 when I got the surgeries but being healthy would've been better for this. I had the first surgery on October 11 of last year and the second surgery December 12 of last year.  I also had to have a cyst removed via surgery on April 11 of this year. Plus I have to get polyps removed  via EGD due to having precancerous polyps the day after my birthday (my birthday is May 30). So hopefully no more surgeries for me for a long time. I am excited about my birthday though because this will be my first birthday without a colon and with my j pouch. Sorry I'm rambling on, but the point I'm trying to make is surgery is better if you're healthy. If you have to get surgery when your older or are unhealthy just do your best to make it through. Oh and it's good idea to know what to expect after surgery. So do research before you get surgery because I didn't as I thought the surgeon was gonna explain it to me. She didn't explain much too me and my GI only told me I was going to be going to the bathroom a lot. If I had known that I would've done some research but I didn't even know this website existed. I stumbled upon it by accident. Of course i probably didn't do research because I didn't realize how serious these surgeries are. Plus I am almost always naseous and dizzy ever since the first surgery. So that probably kept me from doing any research and I really thought my surgeon would explained it to me. Also it probably didn't help that I really didn't want these surgeries and wasn't ready to get such major surgeries. Yeah I had time to prepare but I guess I wasn't ready to accept the reality. The day I found out I had to get these surgeries I almost cried. Plus while I was unhealthy before I only had to deal with IBS not anything like Crohn's or UC. I only got the surgeries because I had hundreds of precancerous polyps on my colon. So I would've died from colon cancer close to or at age 40. So before any major surgery you're ready to do it, I wasn't ready to do it though. I don't regret it though because it'll be okay someday.