My 2nd surgery is next thursday and my takedown should be in nov or dec if all goes well. I read so many horror stories on here. Are there any people here that had a good experience getting their jpouches? I mean as good as a jpouch experience can be. I need encouragement
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This is a support board. People don't come here generally because everything is hunky dory. They come here for support for J pouch issues. It's the nature of the board. There are a large number of J pouch patients, probably the vast majority, who never come here because they have never had a problem and don't need support.
That being said, I have not had a perfect pouch, like many here, but have zero regrets about having the surgery. It's been 28 good although not perfect years.
@Jaydog posted:My 2nd surgery is next thursday and my takedown should be in nov or dec if all goes well. I read so many horror stories on here. Are there any people here that had a good experience getting their jpouches? I mean as good as a jpouch experience can be. I need encouragement
All depends what part of the procedure you’re referring to.
Creation of my J Pouch; well the recovery from surgery, was hell; after maybe 10 days on a high dependency unit, I thought I’d made a huge mistake; although I’d had a ileostomy for 9 ½ years, the loop ileostomy was a whole different ball game; luckily all such feelings were short lived and in hindsight, some issues could have easily been avoided.
However, other than the excruciating agony of anal fissures a day or two after takedown; a result of the anal canal or whatever it’s called, being dilated; within days I was well enough to leave Hospital and choosing the J pouch is the biggest and best decision I’ve ever made; it was all worth it, even during my darkest hour.
In January 21, it’ll be six years since my takedown surgery and there’s nothing better than catching a semi naked glimpse of myself in mirror and NOT seeing that horrible colostomy bag.
The biggest concern prior to my j pouch was how often would I be needing the toilet and will there be any urgency.
Well, right from day one, there has never been any urgency whatsoever, nor have I endured or suffered from the dreaded butt burn either.
Again, since Takedown, my BMs have been 3 to 4 per day, not every day, sometimes it could be 2 other days, maybe 4 and very rarely 5.
I often say, never less than 2 or more than 5.
There’s hours and hours between BMs; sometimes up to 4 hours; more often than not, I can go all day, up to 7 hours without feeling the need to empty my pouch, although i do tend to empty my pouch more frequently during an evening, it’s so varied from day to day, I don’t even notice or think about it.
No night-time BMs, leakage or disturbed sleep either.
During the last 5 ½ years, I’ve not experience any issues, other than bouts of fatigue, which come and go; possibly a salt deficiency.
@Former Member posted:All depends what part of the procedure you’re referring to.
Creation of my J Pouch; well the recovery from surgery, was hell; after maybe 10 days on a high dependency unit, I thought I’d made a huge mistake; although I’d had a ileostomy for 9 ½ years, the loop ileostomy was a whole different ball game; luckily all such feelings were short lived and in hindsight, some issues could have easily been avoided.
However, other than the excruciating agony of anal fissures a day or two after takedown; a result of the anal canal or whatever it’s called, being dilated; within days I was well enough to leave Hospital and choosing the J pouch is the biggest and best decision I’ve ever made; it was all worth it, even during my darkest hour.
In January 21, it’ll be six years since my takedown surgery and there’s nothing better than catching a semi naked glimpse of myself in mirror and NOT seeing that horrible colostomy bag.
The biggest concern prior to my j pouch was how often would I be needing the toilet and will there be any urgency.
Well, right from day one, there has never been any urgency whatsoever, nor have I endured or suffered from the dreaded butt burn either.
Again, since Takedown, my BMs have been 3 to 4 per day, not every day, sometimes it could be 2 other days, maybe 4 and very rarely 5.
I often say, never less than 2 or more than 5.
There’s hours and hours between BMs; sometimes up to 4 hours; more often than not, I can go all day, up to 7 hours without feeling the need to empty my pouch, although i do tend to empty my pouch more frequently during an evening, it’s so varied from day to day, I don’t even notice or think about it.
No night-time BMs, leakage or disturbed sleep either.
During the last 5 ½ years, I’ve not experience any issues, other than bouts of fatigue, which come and go; possibly a salt deficiency.
Wow thats great. I hope mine goes as good as yours. Do you follow a certain diet? How often do you eat? Do you fast? Sorry for all the questions but im trying to prepare.
I had a blockage with the loop ileostomy from eating raw carrots and you may want to avoid any large quantities of raw vegetables.
Diet is something you can control but the loop Ileostomy is problematic (although fortunately of short duration) and your focus should be on making sure you have ostomy supplies, a go to ostomy nurse and prepare yourself for leakage issues. I had mine for 3 months and it was almost constantly leaking. The ostomy nurse at Mount Sinai could get a good seal on my appliance, but I could never seem to. By the time takedown occurred I had skin issues around the stoma.
I would shift the focus of your preparation to appliance issues. If you eat a good diet of readily digestible food and don't go crazy with nuts or popcorn or raw carrots, you should be fine.
@Jaydog posted:Wow thats great. I hope mine goes as good as yours. Do you follow a certain diet? How often do you eat? Do you fast? Sorry for all the questions but im trying to prepare.
Ask as many questions as you like (obviously relating to life with a J Pouch and not too far off track)
No special diet, eat absolutely anything but healthily, I still eat pizza, ice cream, burgers, fried chicken etc but in moderation.
I don’t tend to eat spicy foods or curry but thats a personal preference and nothing do to with my J Pouch; I don’t tend to drink alcohol either, again personal preference and when I do.
I still drink fizzy drinks but in moderation and it makes no difference to the J Pouch; well suppose it increases my output and it's more loose.
I certainly don’t fast: I don’t understand the need.
I eat normally but not that much; I was advised to eat many small meals though-out the day, rather than three main meals (referred to as grazing) which I initially followed but fell be the wayside. I guess such a meal plan is suggested to help reduce BMs rather than to amass energy.
@CTBarrister posted:Your focus should be on making sure you have ostomy supplies, go to ostomy nurse and prepare yourself for leakage issues.
I would shift the focus of your preparation to appliance issues. If you eat a good diet of readily digestible food and don't go crazy with nuts or popcorn or raw carrots, you should be fine.
Yeah, one of the issues I experienced, was the seal of the temp loop ileostomy appliance around my stoma.
My stomach and the area around my stoma was relatively flat but due to the stoma appliance provided by the Hospital and the wrong advice from my Pouch Nurse; I developed skin erosion around my stoma, which was absolute agony.
However, although excruciatingly painful for a couple of days and questioning whether I’d made the right decision; it was easily cured by the application of ilex paste around the stoma and reverting to the ConvaTec, stoma appliance, the type I’d been using for years.
Within seconds of applying the ilex paste onto the festering and oozing skin around my stoma; I felt an instant cooling relief and within days, my skin had completely healed.
I had the loop ileostomy for 6 months and I continued to apply the ilex paste around the stoma as a preventative measure, right upon till takedown; I never experienced any further issues and I continued to use the ConvaTec appliances.
I stopped using the products provided by the Hospital, they were rubbish.
I was never aware of the ilex paste, wish I had used it. I too developed severe skin issues around the stoma, which only resolved when I had takedown. The ilex paste sounds like a possible useful tool in the toolbox for Mr. Jaydog.
I am coming up on 6 months. I've had some frustrations and its far from perfect, however, this week I've been going 8-10 times a day, slept through the night 3 nights in a row, eat anything except have not tried raw veggies or salad, or corn. I have good days and bad days but this week have accomplished the above with no meds, just occasional gas pill. I get discomfort in my rectal area sometimes but I can hold it, no leakage or urgency. I have a ways to go and wish I felt better. My surgeon said hes seen much faster recovery and much slower. But it does keep improving! My best take aways from this forum have been measure success in months, not days, and stop being afraid of foods. Try new things! Ive gained 7 much needed lbs in the last few months. Best of luck!!
To add, the above references my j pouch takedown. The loop ileostomy is challenging. I dealt a lot with leakage and bad burning around the stoma, although really not much butt burn after takedown. So make sure you find a good appliance for you. I did not have dietary limits with either ostomy, end or loop.
My pouch was operating as it should from the beginning.
I consider myself completely recovered from takedown surgery by mid August; my old stoma site had completely healed by mid March or thereabouts.
Other than the excruciating pain of anal fissures not long after takedown, I’ve not suffered from butt burn, rectal pain or discomfort; although I do apply the ilex paste the moment I feel the slightest itch or burning sensation.
There was a time, that every so often, I suffered from anal fissures but its been so long ago now, it’s a distant memory and difficult to recall, although wiping after BMs still causes discomfort from time to time.
Ask your surgeon to give you a bit of length to your stoma so that it hangs out and away from your stomach. Like sticking your tongue out. This is so your stool will fall directly into your bag, instead of dribbling and pooling around your stoma opening. If your (acidic) stool pools around the opening, it will burn and create many skin problems and pain. Google "stoma" for pictures of retracted (ouch) and hanging stomas.
My temporary stoma was too short, and it would retract and hide under the skin level, like an innie belly button. Retracting stoma is normal, you will see it moving in and out like a Whack A Mole. But ensuring a bit of length will help and it won't hurt. Also, you will experience leakage so just accept that it will happen, carry extra supplies if you're away from the house, learn to change your bag like a pro, clean your skin, and move on. It happened to all of us.
Remember it's okay to be nervous before your surgeries, and know that each day things WILL be a bit better than the last. Avoid insoluble fiber, spicy foods, carbonated drinks, popcorn, mushrooms, raw fruits and vegetables. Drink lots of vegetable or bone broth (home-made, if possible) for hydration and potassium and sodium. Don't go for low sodium anything: now is when you'll need sodium. Costco has all sorts of organic broths and soups and they are good for adding chicken or rice for a soothing, easy, hydrating soup.
Always have a supply of ostomy appliances in stock. I ran out completely one day and was panic-stricken waiting for the delivery. Sign up with ostomy appliance suppliers now so they can begin sending you lots of samples. Ask for sample creams, powders, sprays, ask for sachets of deodorizer to put inside the bag to solidify the contents. Ask for a BELT. Wearing the special belt will help you feel more secure wearing the bag, and it won't droop, flop, or feel heavy. You can google "ostomy belt" to see what it looks like and how it is worn. I wish I had known about the belt early on. You could look into ostomy covers too.
When they teach you how to put on your appliance, make sure you press all the way around, listen or feel for the "click" like sealing a Zip Lock bag. This means you have a 360 degree seal and it won't leak. If you don't feel it "zip locking" into place, it is not completely sealed! Changing your appliance before breakfast is a good quiet time: before you eat and before your digestive tract wakes up and starts pushing out stool while you're changing your bag! Also, after you press the sticky wafer onto your stomach, place your warm palms on it for a few minutes. This will help the adhesion take. This will all make sense once you start.
My pouch is almost five years old; pouchitis twice in the early weeks; fissures early on due to frequency but none since. I am very happy and healthy, no issues. I eat anything, even corn and spicy foods, but nothing raw: everything cooked. You will be okay. Ask questions, get support. Good luck next Thursday. Bring a big water bottle to the hospital and drink!
My pouch is a 100 % success! I'm 3 1/2 years since takedown and I've never had any problems with pouchitis, fissures or obstructions. I don't restrict my diet at all. I always pass gas easily and safely.
I agree with the others that having an iliostomy can be brutal. Just remember how it's temporary.
Man i tell ya this website has been so great. Nobody could possibly understand what something like this is like unless they went through it themselves. I really appreciate all the responses. I have end illeo now and 2nd surgery this Thursday. My takedown will be nov or dec. Thanks for all the great advice
@Kangaroo can you pass gas standing up without any issues?
Elf - yes. Passing gas is the same experience as it was with a colon.
@Kangaroo do you use any anti-diarrheal meds like Imodium or loperamide? Do you take fiber supplements?
Elf - I take 3 Imodium before going to bed or I would have nighttime incontinence. I think it helps that I empty my pouch when I need to. I've never held on to it in order to stretch my pouch. I empty my pouch around 7 times a day. With a pouch, I pretty much only have gas if I'm emptying my pouch or need to empty my pouch. It doesn't happen randomly as it did when I had a colon.
@Jaydog posted:I have end illeo now and 2nd surgery this Thursday. My takedown will be nov or dec. Thanks for all the great advice
Jaydog,
If you have an end ileo now I am assuming they left some colonic rectal cuff on the other end to attach the J Pouch to? Is that correct?
@CTBarrister posted:Jaydog,
If you have an end ileo now I am assuming they left some colonic rectal cuff on the other end to attach the J Pouch to? Is that correct?
CT, the whole rectum is generally left intact during Stage 1 of a 3-stage procedure. It gets trimmed down to a cuff (and attached) during Stage 2.
OK I had the 2 step procedure and fast forwarded through that part. It makes sense to leave in the whole rectum and then trim it down.
Through out my time with the end ileostomy, I tried every stoma appliance on the market and ConvaTec and their delivery network, Amcare, is by far the best; no other company comes close.
I used the ConvaTec 2 piece appliance; the Esteem Synergy, which has the option of clickable or self adhesive bags; I chose the latter, there’s also the option of drainable or closed bags; I used the closed bags; don’t choose the bags with filters though, the ever so mild leakage from the filter stained my clothes.
I never considered wearing a belt to support the colostomy bag, the very thought of it makes me judder, it’s on par with a pipe and tartan slippers, I opted for high waist unisex stoma support Boxer Shorts from Comfizz, which look like cycling shorts.
