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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!
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

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