Does it get better?

Akk,
I know that it feel like a really long time and that from illness until now it just might be but in the grand scheme of things you are just in J pouch infancy...your whole digestive tract has been cut, stitched, shortened and twisted to a whole new usage...so it will take time to get things to work right...there are very few of us who are 'up and go' within the first few months, most of us have a serious adaptation period that lasts up to a yr or longer...your system is still immature and needs you to baby it, stick to easy to eat and digest foods that don't irritate your system and if you need to stay off of fruits and veggies for a yr then it might be the price to pay for it to finally work...
That said, 9 months is rather long for things to not have adapted enough to allow you some simple fruits and veggies.
By now you should be able to eat bananas, apples, squash, potatoes, sweet potatoes, possibly some dark leafy frozen greens like creamed spinach, zucchini, mashed peas etc (mashed, blended, grated...)You can also make vegetable souffles with eggs and a bit of flour or omelettes with cooked veggies in it...all good and well balanced foods without too much food danger...
give it time and up the potassium with the potatoes, bananas and tomatoes or tomato sauce and the dizzies may go away..
sharon

It does take time. And it does get better for most. Focus on what you can do...and learn your new normal. Above all stay hydrated. Get a WHO level rehydration solution and if you need to drink it everyday. I drink Ceralyte when I get low. It really helps. And chew, chew, chew. I suggest pureeing up veggies and adding them to food.

Thanks! My doctor has me drinking Pedalyte because it keeps you hydrated but has a lot less sugar. I guess we all get discouraged time to time. Just lately I have had SO many problems with diarrhea and it doesn't seem to be getting better with treatments.

It's tough because my husband is in Afghanistan until April so I have to do everything on my own and worry about him being on the front lines. After he gets home we are moving to Germany so I am not looking forward to that plane ride.

I found that I simply had to stay on antibiotics for pouchitis treatment all the time. Once I accepted that reality things became very good for me. I have no idea if that applies to you, but I know some folks resist whatever treatment they might need to feel well.

It does get better! But its a lot of trial and error with the food and the exercise. But you cant give up. You've I'm sure been through some crap!! This is the point things can start working! I always recommend trying gluten free. It changed my life and not a single doctor ever even mentioned it. And small amounts of exercise, like 10 minutes at a time.

and what does better look like? Does anyone sleep through the night? Does anyone not have urgency intermittently? does anyone go less 8 or less times a day regularly? Does anyone not have leakage? What can be hoped for? Can people keep their weight stable (without losing too much weight?)

I've been lucky and do all of those things. Just woke up from a full night's rest, and that's pretty usual for me. I've stayed between 115-125 lbs for years now (I'm 5'2"). I average 4-8 times a day (but it IS affected by what I eat, at times...but I'm totally continent, so I don't get hung up on the number). I haven't had leakage in years... Only time I have is if I get REALLY GI sick, then, I might in a deep sleep, but have learned to just wear a pad. I was 19 when I had my surgery. Four months after takedown, I was in nursing school having a pretty normal college experience.

I ate EVERYTHING I wanted, for years (am a bit cautious these days with nuts, seeds, corn, and mushrooms), but can eat salads, fruit, you name it.

Why have I had an "ok" time after all of this? I don't know. I did nothing special. Of course in the beginning, there were challenges (right after takedown, had to use ointments for irritation, and went to the bathroom 10-20x a day, and did have night leakage (Kegel'd a lot), but it got better over time, and fairly quickly for me.

I have some issues as I get older, but pouch function still is quite good, pretty much still my norm 90% of the time, with bumps in the road here and there. For me, it's been way better to have this vs. accidents all the time, bloody diarrhea, and colitis, which is where I was right before surgery. I was a slave to the toilet... Failing treatment... (Though treatment options were way limited then; many medical strides today). Most people doing "ok" aren't on a support site (I came back r/t my intrasphincteric fistula, to get support for that, not so much for my pouch). So keep that in mind when you visit. When things are good, most people aren't on a site like this. And those people ARE out there. It CAN get better... Does it always, no. But sometimes it does.

Your comments about the surgeon reminds me of my surgeon. He was worse than a used cars salesman. Dont be worried about a long flight overseas. Just make sure to get an aisle seat, close to a bathroom if possible. There is a website where you can look at plane seat layouts, so you can get an idea what seats would work best for you. I like an aisle seat in far as back as possible. Works great for all those trips to the toilet. As far how the plumbing ends up working, everyone is different. On a good night, i still have to get up twice to hit the restroom. I havent had a good nights sleep in over 20 years. But i deal with it by trying to take short catnaps, and rest extra on the weekend. Try working with the diet to see what may help out. For me, a no sugar, no wheat, high protein diet helps tremendously. Plus acidophilus supplement. Ive even been trying acidophilus and pepto enemas, which seem to help some also. Dont be afraid to experiment to see what may help. Best of luck

My wife is 6 months out from takedown. She has felt absolutely horrible up until the last few days. Up until now, she felt exactly like you describe. We were told that she could expect to go back to work within 2 weeks from takedown, HAH. What a joke.

My wife ended up living with an undiagnosed outlet stricture that probably contributed to 90% of her misery over the past several months. We finally ended up in the hospital and it still took 4 days to diagnose before treatment. After treatment of her "extreme" stricture she was told by several docs that they were shocked that she had lived that way for so long. She is home now and is beginning to feel as though she might be getting her life back.

I have learned a couple of things through our experience that I hope will help you.

1) Do not settle. This surgery was sold to you as a way to achieve a good quality of life. I would highly recommend getting several opinions until you hear one that makes sense to you. During the past few months, we were told several times that the symptoms that we were experiencing were due to possible Crohns, adaptation and the worst most ridiculous diagnosis of all, IBS. In the end we had one of the most common complications with this surgery and it was mis-diagnosed on several occasions.

2) Pouches are unique. Most surgeons that perform J-Pouch surgery perform less than 5 per year. The most experienced surgeons in the country perform 12-15 per year. You need to have the best care possible. Travel to Cleveland Clinic or Mayo Clinic if possible. We never did, but were about 2 days away from getting on a plane. Most people 90-95% have very good long term outcomes. Many people, around 20% have complications along the way. These numbers are important to remember. One final comment on doctors. Most competent doctors will give their opinion and it will be perceived to you as absolute fact. There can always be other things going on and more simple explanations that often make more sense.

I hope that the end of your struggles are near. After everything you've been through, I know that "hope" is tough to come by. It is ok to be patient and wait for things to improve, but make sure that you have a plan. Never settle.

Daniel

I had my surgery at Cleveland Clinic and am now seeing Dr. Shen who is a pouch genius! Where I live they wouldn't perform the surgery because they don't know what it is.

I guess everyone has their down days where they want to be "normal" again. I remember before I ever got sick, I took it for granted, but I guess good things and bad things come with life.

Thanks for all of the comments!