This is an old string so I may be talking to the wind, but I stumbled across it and thought I'd chime in in case anyone finds this string in a search.  I had a jpouch for 30 years that was pretty manageable although had to take Cipro the entire time.  Last few years fistulas and anal canal narrowing caused lots of problems and I got a permanent ileo.  7 mos out now and I'm the healthiest I've ever been.  My blood work is normal and I'm not on meds.  RIght after the surgery I started eating anything - ie gluten, sugar.  Got some serious skin issues said to be Crohns related, so realized I'd be better off sticking to healthy eating.  That for me is loosely AIP Paleo. Typical meals- pastured eggs/salmon/olive oil, soaked/sprouted nut butter/dark chocolate, Instant Pot ground beef stew, lots of fish, baked carrots/olive oil, casein A2 butter, sourdough bread, strawberries (heated in micro to make sure no blockage issues) with yoghurt, sauerkraut juice.  There wasn't anything out there about diet 30 years ago when I got diagnosed w UC/Crohns then 6 mos later had my colon out/jpouch, so I do sometimes wonder if I could have saved my colon, but overall wherever you are in your journey, I strongly believe diet and managing your microbiome makes a huge difference.  I now do GI Map tests to monitor my microbiome every 3-4 mos and use natural antibiotics (like wild oregano oil or olive leaf) if I need to keep things in check. Good luck to everyone.  I know it can get dark at times with these conditions, but I believe the body can do remarkable things to heal. 

@BeenieBaby posted:

I just had emergency removal of my 9 year old jpouch due to an infection outside the pouch that was starting to go into my bone. According to an old MRI scan the infection started 9 years ago as a tiny abscess outside the pouch. Anyway, before this doctors were saying I have crohn's but after the tests and surgery they changed it to indeterminate colitis and let me go without any IBD medications. I am just a surprised and not sure what to think. Does anyone know what the prognosis is after getting an end ileo as far as quality of life? Also, I was following the SCD diet which helped before but now that I have an ileo is the SCD diet no longer needed? I am glad to be rid of the complications from the jpouch. I was getting so tired and it was hard to go to work or even go shopping toward the last couple years.

I wonder why they never caught the abscesses?! Did they take biopsies during the pouchoscopys??? Where did the infection come from and how did it start???

The best thing getting rid of myjpouch .. it was sheer hell , I can basically eat anything now .not restricted with what I can do . The windy sounds will settle down , it’s a pity that someone hasn’t made a larger bag for night time .. getting up frequently at night is tiring..

@powder posted:

The best thing getting rid of myjpouch .. it was sheer hell , I can basically eat anything now .not restricted with what I can do . The windy sounds will settle down , it’s a pity that someone hasn’t made a larger bag for night time .. getting up frequently at night is tiring..

Agree 100%%%%

I am getting my jpouch removed in 3 weeks! I have had my pouch since 2007 and it has been nothing but trouble! Been through all the drugs and none has ever put me in remission! I am now 66 years old and so tired of the accidents at night and cramping throughout my days and especially night! Aching in joints and pelvis is always an issue! I have so few days of feeling good and not worn down! I am so hoping to live the rest of my short life with a lot less pain, cramping and not changing pads and underwear several times a night! I am hoping that since 2007 that the supplies used in ostomy care are better and easier to care for! I remember well the absolute hell of a loop ostomy! A permanent one with a straight cut won't be the nightmare that the loop was! I had to deal with blisters on skin and leakage back then, a whole lot! I pray that this will go far more smoothly! I would wish this horrible disease and the life we must endure on anyone! I can't imagine what a pain free, accident free and life without severe cramping, would be like! I pray that I might get to know such days! God bless each one!

@fisherdan posted:

I am getting my jpouch removed in 3 weeks! I have had my pouch since 2007 and it has been nothing but trouble! Been through all the drugs and none has ever put me in remission! I am now 66 years old and so tired of the accidents at night and cramping throughout my days and especially night! Aching in joints and pelvis is always an issue! I have so few days of feeling good and not worn down! I am so hoping to live the rest of my short life with a lot less pain, cramping and not changing pads and underwear several times a night! I am hoping that since 2007 that the supplies used in ostomy care are better and easier to care for! I remember well the absolute hell of a loop ostomy! A permanent one with a straight cut won't be the nightmare that the loop was! I had to deal with blisters on skin and leakage back then, a whole lot! I pray that this will go far more smoothly! I would wish this horrible disease and the life we must endure on anyone! I can't imagine what a pain free, accident free and life without severe cramping, would be like! I pray that I might get to know such days! God bless each one!

Good luck Dan! I think you will be happy with how things work out for you.  There are indeed a multitude of different pouch options to help you lead a nearly carefree life with an ostomy.  I've had my end ileostomy for 15 months (with my jpouch in retirement/disconnected but not removed) and feel the best I have in decades. I just booked a 3 week overseas vacation for next year. At 66, you could very well have another 20 years of healthy, happy life ahead of you.  Sending you good healing wishes!

thank you so much! I pray you again begin to enjoy a healthy and blessed life!

Fisherdan, you will be amazed at how good you are going to feel, keep your fluids up, no more sore butts, ask for plenty of help from your ostomy suppliers, there are lots of new products to use, lots of luck to you, now for the living to start

Thanks for your encouragement! I really needed it!

The ostomy supplies are so much more improved than they were 28 yrs ago (when I had my first temp ileostomy).  Convatec has moldables which have really worked out well for me, after trying all the others.  It seems like each hospital has their own "favorite" they start you with, but you should feel free to experiment with others if you don't like the gear they put you in.  Trial and error, but you'll get there, and you'll feel sooo much better.  Good luck, and please keep us updated!

I loved my J pouch but I did not love those nasty peri-anal fistulas. The best thing about losing my J pouch is not having to use my butt! It is such a nice thing to not feel the pain/discomfort/pressure/etc in that area. The worst thing about losing my J pouch is the need to drink, drink, drink. Best of luck to the new ileo peeps!!

You will be feeling wonderful in no time , if everything is chopped up small , chewed up properly you should be able to eat anything .. no more pain soreness , A small price to pay to keep hydrated.. lots and lots of good luck on your road to healthyness

Dan have you had the op yet ?

@fisherdan posted:

I am getting my jpouch removed in 3 weeks! I have had my pouch since 2007 and it has been nothing but trouble! Been through all the drugs and none has ever put me in remission! I am now 66 years old and so tired of the accidents at night and cramping throughout my days and especially night! Aching in joints and pelvis is always an issue! I have so few days of feeling good and not worn down! I am so hoping to live the rest of my short life with a lot less pain, cramping and not changing pads and underwear several times a night! I am hoping that since 2007 that the supplies used in ostomy care are better and easier to care for! I remember well the absolute hell of a loop ostomy! A permanent one with a straight cut won't be the nightmare that the loop was! I had to deal with blisters on skin and leakage back then, a whole lot! I pray that this will go far more smoothly! I would wish this horrible disease and the life we must endure on anyone! I can't imagine what a pain free, accident free and life without severe cramping, would be like! I pray that I might get to know such days! God bless each one!

Fisher Dan,

I am in a similar situation to yours.  Pouch since 2008, 74 yr old guy, frequent  accidents.  I wish you well, and am considering the same reversal.  I know I will have to do this eventually and feel that major surgery for any condition should be done before 80.

I had the j pouch problem. Colon too.

Have had an ileo 5 years.

Funny remark so please don't take it the wrong way.

I had a dream the other night when I was "normal".

Not making it to a bathroom. It was a short dream and I woke from it.

I am just happy I don't deal with any of it any more.

J pouch or colon. It was not a pleasant time.

But the dream reminded me. I'm fortunate.

I have had zero dreams about any of my experiences before. Kinda weird when it did happen.

Richard.

@Mysticobra posted:

I had the j pouch problem. Colon too.

Have had an ileo 5 years.

Funny remark so please don't take it the wrong way.

I had a dream the other night when I was "normal".

Not making it to a bathroom. It was a short dream and I woke from it.

I am just happy I don't deal with any of it any more.

J pouch or colon. It was not a pleasant time.

But the dream reminded me. I'm fortunate.

I have had zero dreams about any of my experiences before. Kinda weird when it did happen.

Richard.

I miss you! Hope you come on here more often! Glad you are doing well still

I do come in here often. But I don't say much.

I guess when we get things figured out most don't come back.

But I have this site bookmarked to remind me to come in and read. Which I do more than reply. I do relate to alot in here. Some I don't.

There are wonderful people here. I know.

I'm here just in the background more.

One thing. I can make a change last 7 days now. It's amazing. Took awhile to get that figured out. It doesn't happen all the time. But 90% of the time it does.

And when it doesn't. I don't freak out. I just change it. Lol.

I've said it many times. I'm fortunate.  It's not where I ever thought I would end up but it works. And I'm gettin fat! I don't like exercise.

Side note to those facing pouch removal and going to an end ileo.

Don't be afraid. It can work. And it can work well.

Acceptance is a big part of it. Then it's becomes a new normal.

Thanks. You made me feel good saying that.

Richard.

@Mysticobra posted:

I do come in here often. But I don't say much.

I guess when we get things figured out most don't come back.

But I have this site bookmarked to remind me to come in and read. Which I do more than reply. I do relate to alot in here. Some I don't.

There are wonderful people here. I know.

I'm here just in the background more.

One thing. I can make a change last 7 days now. It's amazing. Took awhile to get that figured out. It doesn't happen all the time. But 90% of the time it does.

And when it doesn't. I don't freak out. I just change it. Lol.

I've said it many times. I'm fortunate.  It's not where I ever thought I would end up but it works. And I'm gettin fat! I don't like exercise.

Side note to those facing pouch removal and going to an end ileo.

Don't be afraid. It can work. And it can work well.

Acceptance is a big part of it. Then it's becomes a new normal.

Thanks. You made me feel good saying that.

Richard.

Okay sounds good! Glad you are here

Still doing 40winks

I get 40 winks everyday!

@Mysticobra posted:

I get 40 winks everyday!

How long???

We can get our life back .. it will never be the normal like before ..but life can be good ... I still eat late if we go out so I do get up frequently to empty..soon back to sleep .. stay hydrated . Eat what you like .. smile it could be worse as time goes by the appliances can only get better .. try all the different.. wipes sprays ect and don’t be afraid to ask for help from your stoma nurses ..

@powder posted:

We can get our life back .. it will never be the normal like before ..but life can be good ... I still eat late if we go out so I do get up frequently to empty..soon back to sleep .. stay hydrated . Eat what you like .. smile it could be worse as time goes by the appliances can only get better .. try all the different.. wipes sprays ect and don’t be afraid to ask for help from your stoma nurses ..

@Former Member posted:

How long???

20 to 30 minutes a day   really don't sleep.... Just rest... But it works . Some days I just skip it.  But days like today I will get 40 winks. All depends on how busy the day has been..

Richard.

@Mysticobra posted:

20 to 30 minutes a day   really don't sleep.... Just rest... But it works . Some days I just skip it.  But days like today I will get 40 winks. All depends on how busy the day has been..

Richard.

Yeah, with our situation its hard to sleep!!! Hope everybody in your family is doing okay.

Everything is good.

We are retired and happy.

Can't get any better than that... Except to be rich and worry free. But I don't think that's possible. Lol.

Hope all is as well as can be on your end. No pun intended.

Richard.

Wow this is an old thread.... 7 years old..! Yeow..

Do you mean my thread being old ?

@Mysticobra posted:

Everything is good.

We are retired and happy.

Can't get any better than that... Except to be rich and worry free. But I don't think that's possible. Lol.

Hope all is as well as can be on your end. No pun intended.

Richard.

Glad to hear it! Me too I am just focusing on the things I can change.