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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.
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I'm not sure what an SCD diet is but I am on a "see-food" diet. I have found nothing that I can't eat. Seriously....I eat like crap!! I'm sure if I tried a pound of celery or something it would be a different story. My advice.....just take it slow and find out for yourself. Some people do have trouble with certain foods while others don't.

I was down to around 130 pounds before I begged them to take the miserable jpouch out of me. Now I'm a fat 195. I'm working on losing a few though. I lift weights and run.

As far as quality of life goes, I am WAY better off than I was when I had UC. The only inconvenience is emptying the bag every 3-4 hours and I worry that I will make some weird fart noise in a crowded, quiet environment. It's never happened but I still worry about it. I could wait longer on emptying but I never know where I will be so I take advantage of it when I can.
Ethumb, all right well, maybe if you can eat like crap and do all right there's hope for me! On my way out the door my surgeon said, get ready because you're gonna gain weight Lol. I was 79 lbs at my worst now 111 and I could stand to gain a few

My stoma has been making loud noises randomly throughout the day. I hope it settles down so I don't have to wear like 5 potholders over it to muffle the noise in public! Glad to hear you haven't had much of an issue with that
Hello! I'm sorry to hear about your emergency surgery. My perm. ileo. is now 3 months old and I have found the noises and all have settled down. I too was eating the SCD (or GAPS Diet) leading into my surgery. However, post surgery it was recommended that I eat basically the opposite: eat no raw fruits, veggies, seeds or nuts but do eat white bread, rice, pasta, Gatorade. Say what?! My poor little system went into shock for that reason alone (just kidding). I tried to eat the easy stuff for the 6 weeks, but now I'm just about back to a 80% SCD/GAPS. I feel so many benefits to it and I like my energy level. I was told I have Crohn's, so I don't want it to show up in my small bowel. Real food (most of the time now- before I was hard core and never cheated once) is my choice now.

My jpouch was 15 years old. I had a 4cm mass next to my rectum/j pouch plus r/v fistulas. What a mess I was! Feeling really good now and hoping that was my final surgery!

Be well!
Laura
Hi Laura, thanks for the reply. Your situation sounds similar to mine. I was also dealing with r/v fistulas. I sure won't miss those!

It does feel weird going off SCD but it would be nice not to have to be in the kitchen cooking all the time! I think I'm also going to go with a modified SCD/paleo type diet, maybe add rice and potatoes or even gluten free bread and see how that goes. I guess if I ever start to have any issues I can go back to a more strict diet.

Glad to hear you are feeling well and your noises settled down too! Smiler

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. 

Last edited by LBA
@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???

Last edited by Lauren Of Emerald City

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!

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!!

@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

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 ..

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