Most successful J-pouchers have unrestricted diets after an adaptation period. I certainly do. Some restrict their diets for various reasons, just as many folks with intact colons do. You'll probably do better than 4-8 BMs daily, more like 4-6, but an estimate of 4-8 leaves less room for disappointment. The key for me is that there is no urgency. Go when it's convenient. I *started* martial arts and scuba diving after getting my J-pouch. Before the surgery I was too sick to consider it.

Good luck!

Thank you! No urgency would mean so much for my daily life as well. I'm studying to become a real estate agent at the moment, ungency sucks pretty much when you have to be outside of the office for longer periods.

I would always advise people to try smoking cannabis twice daily just in case it works for you prior to surgery. It has helped me a lot during the 26 years of having a j pouch and I have always wondered if it would have been beneficial prior to surgery. I had UC in 1978 and it disappeared for 10 years after taking tablets. UC returned in 1988 and for 2 years I tried everything except cannabis. This time it could not be controlled and I had J pouch surgery inn 1990. I know it helps a lot of people after surgery....definitely worth a go before

Surgery is a very personal choice until it isn't a choice any longer...then they decide for you...so best take control of the situation and do things on your own terms when you feel that you and your body are both ready to face up to the challenge. Nothing worse than having this done in an emergency situation!

I have a k pouch (the ancestor of the J pouch, same pouch with a different exit) so my concerns are different but similar.

Yes, most of us go back to a normal if not 'better than before' life. Most of us live our lives without coming back to the site other than for an occasional 'hello, again, I am fine'...those of us who do come here often are usually the ones who have had complications or problems so do not take us posters as a sample...we are the exception (mostly).

I exercise daily (other than when I have back problems), live a very active life and have a family that I care for...so my pouch usually does not control my life, I do.

Yes, I must empty it more often than most 'normal' human beings do  but I have just integrated that into my lifestyle...no one really notices any longer.

You will have to deal with the first 3-6-9-12 month periods. Improvement does not count in days (most often) but in months...so be prepared to be patient the first year, take things slowly and do not expect too much of your body too soon...give it time to heal. That is the big one, your body needs to heal and that takes time. (but you may very well be one of the lucky ones who finds that by the end of the first couple of month that you and your pouch are just dandy!)

Once it is healed you should be better than before and able to live your life.

Sharon

Thanks for sharing, really appreciate it. There's so many thoughts going on right now. For me especially about what I'll be able to eat. I've tried various og diets now, and none seems to work, and tbh it kills me (well it's not THAT bad but you know that i mean) that I cannot eat the same things as my family. Bringing my own box of food for birthdays kind of sucks and makes me in a bad mood. I'm 179cm tall and weighs 65 kg, so its not that i'm adicted to the sugar or anything, it's more the social aspect i guess.  

I agree with Sharon - surgery is a very personal choice and every situation is different. I didn't have a choice about having surgery - my surgery wasn't emergent, but UC hit me severely and out of the blue, and after a month of living in the hospital with nothing working, surgery was it.

I have four thoughts -

1) I agree that it would have been nice to get used to the idea of surgery before it happened. It didn't really bother me that it had to happen and I knew it would be better afterwards, but I had lost 40 pounds in the hospital that I couldn't afford to lose in the first place plus was on TPN and blood transfusions... I didn't really feel fit to have surgery but it was going to happen anyway. As Sharon said, having a strong mental mind going into surgery will definitely help the outcome - you will control it rather than letting it control you.

2) For many folks with UC, my understanding is that surgery will be necessary eventually. I've also read that it's somewhat bimodal in that it's severe gets more severe when you're young or more severe when you're older (50's? 60's). I honestly feel blessed that surgery needed to happen when I was young (25-26 years old from colectomy to takedown) - even though it was shocking and severe, I've healed wonderfully. It was a bit of a ride and there's a lot to learn, but I have a normal lifestyle now and things like eating right, staying hydrated and exercising only make me feel better, as its supposed to be. If you have your surgery at 22, there's a great chance that your youth and current physical health will be an advantage.

3) I was very lucky to end up at a place with world class surgeons of every kind. I didn't get to choose my surgeon or GI doc, but they have both been phenomenal and I haven't had any complications from my three surgeries. You will have better outcomes with a highly skilled surgeon that you have confidence in. If and when you choose to get a pouch, find a phenomenal surgeon and this will only be a hiccup in your life rather than any kind of upset. Shop around and know that you have a choice.

4) Kids. You're young and I'm not sure if you've envisions having children in the future. Your fertility will likely decrease after surgery if you get the pouch simply because the surgeries take place in your abdomen. I best source I've seen estimates a 50/50 chance of women with pouches convincing naturally (chances increase with IVF). Great surgeons who know you want children eventually will do their best to preserve your reproductive system (mine was wrapped in anti-scaring material, for example), and I'm sure that a laparoscopic approach would be beneficial. I think that, for me, *potential* difficultly having children is the only thing that sadens me when I think about my surgeries, but I have hope.

I wish you the best best!!

If you have the op then you can be reasonably happy that is it, no more flare-ups. I personally would also prefer to live without taking the meds and their side-effects. It depends how often you are ill. If it's all the time then yes, the op is a good idea.

Nothing I did involving food helped my UC in any way. In the end I had a flare-up that simply wouldn't go down and so ended up having the op that way.

With the pouch, I can eat anything except peanuts. I go 5-6 times every 24h. I have no urgency or leaks. I'm not on any medication.

Best wishes

Thank you Guys.

It's kind of odd, it's not like my UC is killing me. I study and Work from 8am-5pm every day. Having hard times untill midday, feeling kind of sick, and it feels like I can't quite relax, maybe 2-3 BM's with a Little blod from 8-12, then after lunch it's a bit better, feel like i can relax. and maybe "only" 2-3 more BM's for the day. So it's like my UC is there on some kind of low, i mean i can go to school and have a job, but it's been like this for the past two years now, so im starting to Wonder if op would be the best, as my doctor recommends me. I do skip some morning classes cause of the UC every one in a while, so it's not like im totally fine. It's there, it doesnt have as much impact as on others. But i guess those whos UC has more impact in their daily life than me, are the ones getting a surgery.

Nicolas, there are two key factors driving surgery: quality of life and cancer risk. Active UC dramatically increases the risk of colon cancer. People differ in how they deal with the second factor.

I've had my j pouch for 6 years now. I failed all the meds and my UC was severe. So surgery was was really my only choice left. BEST THING I EVER DID! I have no diet restrictions, no urgency, no meds, and I use the bathroom an average of 4-6x a day. No more UC! 

The surgeries are tough....not going to sugar coat that but for me it was totally worth it. There's an adjustment period after you're all connected that may try your patience but with time you can go back to life as usual. Best of luck with your decision! 

Nicolajs posted:

 

Of course everyone reacts differently, but will I be able to eat normally - espacially wheat, milk meat, anything really - do you guys think about what you eat?

The doctor told me I would have to go like 4-8 times a day, is that too high or too low or is that pretty much right?

I used to be doing various numbers of sports before I got UC, and generally I was in very good shape, something I havn't been able to be especially over the last two years due to my UC.

Hi Nicolaj!

First and foremost, welcome to the site! I'm sorry to hear you're having issues, but everyone on here is super friendly and ready to help, which I'm sure you've noticed by your thread's lovely contributors already. I'm just adding my two cents, since it's always good to hear from a wide range of people. I don't have UC, though; I have familial adenomatous polyposis, so I don't know how our diets might differ, but I do have the j-pouch, so I'll give it a go, anyway:

For your first question--I don't really think about what I eat too much. I can't have certain uncooked vegetables and that's about it. Raw broccoli, cauliflower, corn, and asparagus make me have bowel movements every half hour or so until it's all out of my system. And as you already know, every body is different; my mom is not affected by corn, but is affected by mushrooms. If the veggies can easily be squished between the fork prongs, or if they wiggle like cooked spaghetti, I know I'll be fine.

4-8 is accurate. You'll find while you're recovering that you're learning your body's signs all over again. Right now, you know when you have to go. With the j-pouch, you feel it start to fill up and it feels like you have to go, but there's something subtly different about stuff entering the pouch and actually having to go to the bathroom. Same with telling the difference between BM and passing gas. So at first, you might even be going 10 times a day while you figure out those differences, but after about seven months I was going 5 or 6 times a day. Now, I do about 4. 

I don't have much to offer on the sports front; I'm not a particularly active person, but I do go to the gym and I have no problems there. I have joint pain every so often, but my knee brace helps a lot. 

Always happy to help, and all the best,

Leah