Any of you have active lives that you are able to maintain?
Please let me know as I my mind is so foggy right now.
First off, welcome.
I have had a k pouch (like a j pouch but it has an abdominal stoma + catheter instead of the normal exit) for 35+yrs.
Basically j pouchers need things thicker and us k pouchers keep the contents thin...but a pouch is a pouch more or less.
Life is good. I work like a demon as a University professor, walk everywhere, got married twice (not at the same time but both post pouch creation), travel, go out, have friends and a family.
My plumbing is not normal but I am. I make allowances for my pouch's needs, avoid certain unfriendly foods and drinks and enjoy the others. I test out new foods before diving face first into the plate (I tend to be a bit bulimic so I need to be careful and pace myself when I encounter new, tasty goodies until I find out how they'll come out), sometimes when feeling ill (normal people get stomach bugs too) I go onto a couple days of liquids only...soups and smoothies. I feel better after that. I exercise, swim and keep active...love yoga and pilates too (do not ask me to climb a mountain, not my thing but others here run marathons, win all sorts of races and generally are super-human-walking-miracles in my opinion)
No, I am not normal, but I am as good as I can be all considering my disease and its ravages on the body. I do a lot and usually much more than most normal people that I know...so do not consider this the 'end' of life but the begining of a new life (kind of like your psudo!)...
No matter how sick we are, taking the first step is still scary and painful. It takes time and reflexion to finally make the choice and move forward.
Some of us live their lives "better than normal" while others will deal with post op complications, long term problems or punctual difficulties. There are no promises...just hope.
I wish you luck in your choices and future plumbing
Most J-pouchers live ordinary, healthy lives and have little interest in J-pouch support forums. The vast majority of J-pouchers are glad to have had the procedure, and would do it agan.
The rest come here.
Okay, that's a bit of an exaggeration. Nevertheless, this is a suberb forum to find out what can make a pouch difficult. It's not a very good place to find out about the typical J-pouch experience.
I have an essentially unconstrained diet, including popcorn. I took up Japanese Ju-jitsu after my pouch surgery, and I now teach it, and I similarly took up scuba diving. The pouch never stopped me from enjoying alcohol in moderation, which is all I was inetersted in. We have marathoners, skiers, and everything-elsers here.
J-pouchers will have more BMs daily than coloned people - about 4-6 per day is typical. Much more important is that a healthy pouch will cause no urgency to run to the bathroom for these events. The stool will be softer than a colon produces. J-pouchers are more prone to dehydration than folks with colons, but most just need to drink enough water. A healthy J-pouch may function better if helped with judicious use of Imodium or Lomotil (if you need to go longer before the next BM), and/or soluble fiber (like Metamucil). Some use neither of these, but their use is pretty common.
Folks vary in how long it takes for a pouch to mature. Many are back to work in six weeks or so, but the pouch is still adapting at that point and further improvement is likely.
Just thought I'd take 2 minutes to tell you that yes, my life is good. Great, actually. I feel very normal. My diet is the same as it was 19 years ago when I got the j-pouch (probably healthier now) but I don't eat apple peels anymore. I'm not a drinker, but never have problems when I have the rare cocktail AND I can still eat popcorn.
Yes, you can get 'lucky' and have an amazing outcome. The hard part is not knowing what's to come, but when the disease makes life unbearable it becomes an easy decision.
Do I feel normal? Yes, but I have a new definition of normal and that is OK with me. Life is not perfect, but I travel, hike and do pretty much what I used to do. I am more limited by my arthritis than my j-pouch.
You can have a "normal" life with a jpouch, where that means you can live the lifestyle yuo want with little to no issues due to the jpouch. I do not have that, and many others do not. Whereas most people throw around a "over 90% satisfaction" number, I really doubt that. 10% will be rediagnosed with Crohn's, 10% will get chronic pouchitis, others will get chronic cuffitis, and others will deal with other issues. The problems with it are understated by surgeons and GI's. That said, I think odds are in your favor that you will have an "acceptable" outcome.
I would encourage you to stay away from surgery as long as possible, and when you do have surgery, try a "temporary" end ileostomy before making a decision about jpouch or ostomy. Ostomies have their downsides, but tend to be a much more consistent means of eliminating GI symptoms and UC.
My life has returned to normal like it was before my UC dx thanks to my j pouch. I may go to the bathroom a few extra times a day but I'm not sick anymore, I can eat real food again and I don't have to be on any medications. The procedure has a high success rate. There are a small percentage who don't fare so well. I did NOT want to live with an ostomy if I didn't have to. I'm extremely grateful for my j pouch.
Our cute little in town cinema has free refills on the big bucket (yes, that one). Been pouching for close to 30 years and I can't count the # of times I've polished off both the first bucket and the free refill.
I'm not going to say that every day is sunshine and roses or that recovery from the surgery will necessarily be easy. Mine wasn't, and I went through a lot with the 3 step process. There are bad days and there are bumps in the road. There are annoyances and inconveniences (like feeling that you have to buy shares in toilet paper - LOL - and not being able to find an accessible bathroom at the airport due to construction. UGH). But truth be told, the vast majority of the time, I do not think about my pouch. I work full time. I ride horses, run, and do yoga. I just recently ran my first 5K race with the pouch and did really well within my age group. I do have to watch my diet, but that has less to do with pouch function and more with the fact that I have scar tissue/adhesions that have caused obstructions in the past. But I am very happy with my pouch and with my overall quality of life. Not a single day has passed that I have ever missed my ostomy, and compared to having UC, I feel like a million bucks.
Honestly, to have had 22 years of nearly no issue was worth it, and my current issues pale in comparison to what full blown IBD was.
My diet and life are pretty much not affected by my pouch as a whole.
I'm 3.5 months out of my last surgery (takedown). I came to this forum when I first was told I needed the 3 surgeries. I was diagnosed with UC only just before this, however, I was always aware something wasn't right, as in, really not right. When I first started reading about the negative outcomes some people had I was super nervous (obviously) about how my outcome would be. I play music for a living and I was home on July 2nd this year from the hospital after my takedown and I played a 45 minute show on the 10th of July. I know people who have dealt with pouchitis etc, I personally don't even think about when I eat or what I eat now, I don't drink all the time, but when I do it's generally in a sizable amount and I get a bit gassy if I'm drinking beer, but other than this I have no dramas with it. I've been meaning to write a post about how well mine turned out for me, but I don't think many people that come to this forum have had the same result, but the idea was to let people know that it can work out without sounding like I'm bragging.. I had the roughest 2 years of my life before this surgery just like anyone else, but I am very happy I had this surgery done and the group of surgeons at the Peter Laugheed Centre in Calgary Canada are elite at what they do. I'm a single 34 year old male who didn't cope well at all with the ostomy as it got in the way of my personal life, so to speak.. Now it just looks as if I've been shot and there is a little scar where the bullet went in and they had to do a few surgeries to fix the damage (that's what I jokingly tell people at the pool at least). I hope this at least gives you some hope as I intended it to. Good Luck!
I had my takedown surgery in June of this year. My quality of life has drastically improved. It's amazing how quickly I was able to notice a difference. I'm sure there will be bumps along the way, this site has shown me that but in comparison to my life before the j pouch, it seems to be worth it. I haven't modified my diet. I eat whatever I want. I have noticed that when I eat a lot of sugary foods then I go more and get butt burn. It hasn't proven to be severe enough to stop me from eating sugary foods! I really should do that. I don't take any medication now. I occasionally use Imodium; that's usually when I have a longer drive to make and helps me with the UC anxiety I am so accustomed to. All in all, I would recommend the surgery.
I am 14 months post take down - and I have my life back! I loved the ostomy too, but I definitely don't miss it now that I am doing so well. It was rough for the first 8 months or so, I am pretty sure I had a fissure that wouldn't heal. Now, though, I feel pretty normal. I did try the low fodmap diet to deal with gas issues - but I can pass gas - which is pretty awesome. I cut out a few things and I've sort of made connections on a few foods, but I don't stick to a strict diet. I eat a soudough bread, get lactose free icecream sometimes, still eat too much chocolate - and I finally drink alcohol again which might not be the greatest, but it feels good to unwind now and again. I actually go less the night and day after I drink. I go about 7 times a day - but they are not stressful and feel normal - it feels like how I remember. I do need 1/4 teaspoon of metamucil twice a day, and two loperamide a day - thats it, and yogurt - 2 a day just cause I'm nervous about pouchitis.
I agree ATX! Not dead is awesome and every day the sun comes up is a great day. While my surgery was not strictly an emergency, I definitely was circling the drain.
I think it is a much tougher transition for those with FAP, cancer, or a dysplasia diagnosis, but in otherwise good health. Hard to embrace something that will change your daily life when you feel well.
Yes absolutely! I should have added too - my surgery was an emergency and I would have died if my colon wasn't removed. That puts a lot of things in perspective!
I'm about 3.5 months out from takedown, and I'm amazed at how great I feel. I was so sick for a year--had to go on medical leave, couldn't leave the house without having an accident (or fearing one), couldn't take care of my daughter the way I wanted to. Now I'm back at work, planning a long road trip next week to go to a conference, and have taken my daughter to the beach, Disneyland, and baseball games all since my last surgery. I eat pretty much whatever I want (still haven't tried corn or popcorn), I have a glass of wine with dinner, and go to the bathroom about 4-6 times a day. I do usually wake up at night to go, but this is about my only complaint.
The surgeries are hard (I had minor complications after each one), but worth it. I also know that I could develop problems at any time, but so far I'm so grateful for the surgery.
Good luck with your decision!
I had my take down surgery on June 19th of this year, so I'm almost to the 4 month marker. Like Elisa, (the comment above me) I am amazed at how quickly I noticed a change for the better. Within two weeks of surgery I felt physically better than I had in years. I had a horrible 2.5 years before my surgery. I had a few hospital stays, a case of c diff., and I was on every biological there was. I knew I wanted surgery. The idea of biological drugs for the rest of my life was scary. They didn't work for me anyway, so surgery was inevitable. It's a rough couple of surgeries. A colostomy bag sucks, but it is certainly manageable. I eat like a normal person. I go to the bathroom frequently, but it is NOTHING like having UC.
If I had to chance, I would do it all over again!! I truly feel like I have my life back. I work again. I can manage a commute. I'm a mom to my kids. It's really a wonderful surgery. If this site tells you anything, there will likely be bumps in the road. But, it is worth it!
All is well here since my takedown in July 2002! Very few hiccups and all easily dealt with. I eat and drink everything/anything including my favorite adult beverage....gin martinis! I eat popcorn with no problems and crunchy veggies and fruits.....apples with the peel! I don't limit myself by excluding any food/drink. I do try to watch portions because I can gain a pound or two or three by just looking at a piece of cake! I was 63 years old when I had my takedown. I, too, didn't mind the ileostomy. It's wonderful to feel healthy again! Frequency of bm's doesn't bother me because there is no urgency! In fact....when I know I'm going to be occupied for hours and hours without easy access to a toilet, I just go and empty my J-pouch before leaving the house. Could never do anything like that when I didn't have a J-pouch and had a healthy colon! Best wishes!