Advice needed - Should I get a jpouch?

Only you can answer the question of whether or not it's time to consider surgery. But you probably know the answer if you're sick and tired of being sick and tired. It seems like you've given it a really good shot. There are many members who've done what you've done to prevent the inevitable and most of them say they wish they'd had surgery sooner.

If you've been lurking for awhile then you know that waiting until the decision is out of your hands is not the best way to go. It would then usually be a much more difficult surgery with a longer recuperation time.

I know it's very difficult to make this decision but you can make a date for surgery and you can always can always cancel up to the last moment. People usually don't cancel but that often gives you enough 'control' to allow you to move forward.

And just so you know, once you make a decision to have surgery your colon will start acting all nice. Don't believe it, it's a liar. It will start misbehaving as soon as you cancel surgery.

Good luck with your decision and I hope you find relief soon.

kathy

Kathy.... ...so terribly right...Those darned colons have a mind of their own...but back on topic...you, your heart (and colon) as well as your family & closest friends must be part of this decision making process...because ultimately they are going to be the actors in your recovery and how you feel about things post op....the surgery is not easy, there will be good and bad moments and once your pouch is up and running on its own there will be moments when you wonder what you have gotten yourself into...But...as Kathy said, better to make the decision on your own terms than wait for the decision to be made for you when you are least prepared and least able to handle it...the recovery is a very rocky road for some and a near cake-walk (comparitively speaking) for others...there can be complications and deceptions too...so although I am very much pro pouch I am not going to tell you to chuck your colon and rush into things...This is still an amputation of a sick organ and the modification of your natural digestive tract and process so be prepared.
And whatever you decide...good luck with it...we will all be here to help you through it.
Sharon

Have you seen a surgeon yet? If not, I would make an appointment with a very skilled and experienced surgeon who has done many, many j-pouch surgeries. It is a very complicated surgery and you have to have someone who really knows what they are doing. Complications will be much less if you go with someone who is very experienced. Anyway, it sounds like you have tried it all and nothing is working. I think it's time to at least get a consult. I know it made me feel a lot more in control of this disease. Also, you don't want to be at the point where you have to have emergency surgery and get an ER surgeon. That was one reason I chose to get it done. I was terrified I would end up in the hospital in Indiana and have someone who didn't know what they were doing operate on me. I made the 5.5 hour drive to the Cleveland Clinic and got one of the best surgeons in the country, IMHO. Good luck with your decision. I am so happy I got mine done. It's not perfect, but when I see people post about how uncertain things are never knowing when you are going to flare or have to go, I know I've made the right decision. I have my life back.

UCWarrior,

If you have run that gamut of meds and none seem to work, then yes - you should consider surgery IMO. It seems like such a huge step, and indeed - it's not one you can go back from (at least until they can grow you a new colon in a petri dish ). My daughter was 7 and about like you are - went through all meds, and the only thing that did anything was high doses of prednisone, and even that did not put her into remission. She got to the point where she was up 6 or more times a night, and it became a simple choice for us. Of course, we had the hindsight of me having surgery and a pouch. And I can tell you 100% we don't regret that decision. You would never know, except for that small stoma scar, she ever had a problem. She is doing so awesomely!

I do almost as well, but you know, I'm not as young as she is I think the "adjustment" period after takedown was extremely trying but overall I don't regret surgery at all even though I thought it was drastic when mentioned to me in the hospital the first time.

Find yourself an awesome surgeon who is highly recommended for this surgery and go talk to them. It's time...

Steve

Hey UC Warrior,

I was in almost the exact same boat as you were 1 year ago. I was diagnosed with UC in February 2011 during my sophomore year of college. It was an incredibly difficult life change that ultimately wreaked havoc on my body and mind only after 9 months. I was on prednisone, tons of different 5-ASA's, antibiotics here and there, remicade, and high doses of pain killers. I also looked into natural remedies like probiotics, fish oil, slippery elm, and meditation. The only medications I didnt try were the immunologics since my immune system was already blasted from the prednisone, remicade, and amounts of inflammation in me. Nothing seemed to work for me, and I reached that breaking point that people talk about where the disease gets so bad that you can't possibly live for much longer. I had lost 50 pounds and was under 100 pounds. I was so weak and in so much pain that I could barely even stand to brush my teeth or make it to the bathroom. I was like that for about about a month when I decided that I couldn't live that way any longer and I had to make the hardest decision of my life to get the JPouch. The only reason I say it was the hardest decision of my life was because I really was not sure that I was going to make it through the long, bull of a surgery. But I went into the hospital on December 12th, 2011 as brave as I could be and fortunately I opened my eyes after the 6 hour surgery.

Now for me, that moment and the rest of my recovery was absolutely the roughest and most painful experience I have ever had to face. I had several blockages and needed an additional surgery to remove them which left me in the hospital for almost a month. I also needed physical and occupational therapy for weeks when I did get home. However, while it was very challenging and the toughest decision in my life, it also was the greatest decision I've ever made! Getting used to the temporary ileostomy was also interesting and at times frustrating. But upon regaining my strength several months later, it was all worth it.

Now when the time came for my takedown (May 2012) I was very nervous! After the way the first surgery went I didn't really know what to expect with the second or how my body would feel with the JPouch hooked up and having to actually pass gas and stool again normally. But let me tell you, the takedown was absolutely a breeze compared to the first surgery! While it is a weird feeling for the first few days and weeks getting used to the pouch, your pouch adapts very quickly and you make large progress each month (or at least I and many others that I've talked to have). You are able to eat actual food again- slowly at first trying foods to see what agrees with you of course. But the best thing to happen, is that it will ultimately give you your life back.

No more bleeding, no more inflammation, no more incontinence, and no more terrible pain. Although obviously there is some pain and soreness from the surgery itself and getting used to the acidic stool coming out from below. The only small pain I had was the ocassional soreness and butt burn for the first month or so. But the burn is more an annoyance and just soreness really than actual pain.

Fast forward to today and I'm doing absolutely great! I was able to return to college for my junior year, and I am feeling mostly like myself again. I mainly have good days and usually use the bathroom anywhere from 4-8 times a day. While it sounds like a lot (sometimes 10 or so) it's really not too bad at all. Your pouch adapts quickly, and if you make sure to find the right mix of fiber each day then you have formed somewhat normal stools like before you were ever sick. You can also generally train your JPouch to whatever your schedule is like and I've had success with trying to train my pouch to empty stool only at several times of my day in between classes and even 4 hour, time consuming labs. I am happier than ever to be healthy, and I have never been more appreciative of every little thing I am able to do again in life.

So if you feel like you've honestly had enough of letting UC control your life and you want your life back, I would say go for it! You've already been through so much like so many of us and you truly are a warrior. It's not an easy recovery but then again nothing is truly easy in life. Make sure to have a good support network of friends, coworkers, family, etc to help you during the recovery because it can be hard at times. But hang in there, keep your head up, and whatever you decide, I hope very much that it enables you you to regain control of your life. And don't be afraid to come on here if you need anything. I feel like this whole forum is a group of amazing people that are always willing to share advice and support for others like us. Where would we all be without such a wonderful source of support and advice that is this website?

Thank you all for your sharing your experiences! They really help me put my symptoms in perspective and make me realize that I am not being unreasonable by not being happy with my current quality of life! Sometimes I wondered if I am just expecting too much and I should be happy that my symptoms are not worse!!!



I have set up a consult with a surgeon for next Friday. Hopefully, that will help me get some more clarity and make a firm decision.