Hello
I am new to this site but have been reading for months. It is a wonderful place for information and support. I have had UC since 00. Have been in flare since Oct 06 and after being hospitalized 2 times this year and weighing my future with this disease, i elected to have the surgery, I dont want the risks of having this disease for any longer and dont want to take a chance on having a life threatning flare. I feel and the dr's as well think to do it now while the flare is under control (of course because of prednisone)and the surgery can be done under optimal conditions


I am quite nervous and any insight on what to expect before and after the surgery would be awesome. I am having a 2 step process.

Thank You

Hey BlueJay,
I had the 2-step too. Step 1 at the end of Aug '06, step 2 in early Jan this year. I've written lots of posts on what to expect, but I know it can be hard to find the right thread when you're desperately searching, so here's my summary for you!:
Step 1 is very traumatic for a lot of us. It's an amputation, and your body reacts accordingly. Expect to feel extreme fatigue, a lot of pain (demand enough pain medication! You are not being a wimp if you feel you need a lot!) and not least, expect to have to deal with feelings of grief, bereavement, depression. This isn't surgery we can easily look forward to. We've made a choice between evils and would love to have had a whole, healthy body. I'd say complications of some kind (sore skin around the stoma, infections, dehydration etc.) are common. Contact stoma suppliers and get free samples. If you're having a temp loop ileo, expect it to be a bit pesky and needing care! A lot of them are quite flush to the skin and sore skin is often an issue. If you experience this, try convex wafers, either 1 or 2-piece versions. They push the ileo out and away from the skin and can really make a huge difference. Drink LOTS of fluids, preferably not just water, but something that will replace vital salts and minerals. Gatorade, if this works for you, soups, broths and - in my experience - herbal teas like mint, chamomile and fennel. Be good to yourself! If you need help getting to sleep, ask for some sleep meds (not all are as addictive as we might worry about). If you need to sleep, go ahead. If you need to cry, go ahead. If friends and family offer you help, say yes!! Having someone come around, warm soup for you and do light cleaning for you like my angel of a neighbour did for me, is a HUGE help if you're struggling post-op. It's important to walk a bit each day. If you feel from week to week that you're making progress and feeling better, increase the lengths of the walks you take. If, like me, you feel progressively worse, get in touch with your doctor and get them to check for infections, anemia, dehydration and mineral deficiencies. And keep posting us here! We're all here to help you.
GOOD LUCK! We're all different, but my experience was that step 1 was dreadful, step 2 was a breeze and my pouch has given me a new life. So despite the horrors I endured, it was so absolutely worth it.

Welcome...I too am new to the site. My surgery is on Tuesday, March 20 at the Cleveland Clinic. 14 years with UC and 3 stays in the hospital in 11 months helped make the decision for me. I was close to meltdown today thinking about it all, but know that in the long run, it will be gaining back my life. Continue to come to this site and read. I have learned so much and although all members have different experiences, everyone seems to truly care about how you feel, your concerns, and are so very encouraging. Good luck with your surgery. Where are you having it done? NYS

Hi thank you

I am having mine done at Brigham & Womens Hospital with Dr. Ronald Bleday.

Hi,
I am new to the site as well although I have been "lurking" for about 6 weeks. I wish someone had directed me here much sooner. My ileo was 9/05 and I considered it permanent. Then I discovered information about options like the J pouch. All of this I have had to discover on my own. I am being referred to the Cleveland Clinic for possible future surgery. I think it is the direction I want to go and hope that I will be a candidate. My new gastro( I had to fire my first one) did his residency at the Cleveland Clinic and is the first person to be able to try and answer my questions. I really appreciate everyone's support and input.

Hey Blujay,

I am thinking of you

Hang in there, you will be alright

I found step 1 very hard, step 2 easy and yes it gave me back my life, just like Soph.

Gatorade is good, cause it gives you back your vitamins and minerals

Don't just rely on water

If you believe in natural methods then find a naturopath who specifically deals with IBD. MIne gave me a protein drink which stopped the dehydration.

big hug

Anne

Hey Bluejay, I have surgery the same day as you. Im very exited to have my life back, just think about the good times after!!

Welcome prospective j-pouchers! Soph has given some good advice so you won't be surprised! Indeed Step 1 can be tough but that prospect should not "scare" you ... my life with a pouch is so much better than life with colitis. For most of us, the problems we have with our pouches are pretty insignificant compared with what we went through with colitis. My Step 1 was Feb 06 with TD in April. Just got back from Mexico tonight. Great holiday with my wife and three grandkids. Ate pretty much what I wanted (as a matter of fact, that "All Inclusive" went back to making a profit after my departure!)
jim

Blue Jay,

I have 3 pieces of advice;

1. Be careful of blockages. Some fruits and vegetables such as apples, mushrooms and corn can cause a blockage. Try them in small amounts at first.
2. Boost or another similar meal replacement drink is excellent especially for gaining back weight and on days when you don't have a great appetite.
3. Exercise as soon as possible and as much as possible after both surgeries.

Good luck,
PR

I really appreciate all the great suggestions that everybody has. At this point I wish that I knew that J pouch surgery is an option for me. Waiting to see someone at the Cleveland Clinic is tough. I had resigned myself to have my ileo permanently until I started doing research. It makes me a little angry that if I hadn't looked into it, nobody was going to suggest it. I guess it is the lot of seeking care at a local community hospital ( and being too sick to have my rectum removed at the time of the original surgery!) Thanks for all the encourgement so far.

Bluejay and all you newbies HI and welcome to the board. I am coming up to my 1 year anniversary of step 1 so my memory of things is QUITE vivid. I think Soph really covered some of the basics great, in fact Soph you should copy and save that whole post and just blip it off to all newbies you respond to. Lot of helpful insights there.

Back to y'all who have upcoming surgeries....just ask lots of questions because there are so many things that vary with every person. For me the pain from actual surgery was extremely intense but with pain killers it measured very low on my list of problems. If pain is all you have to deal with you will be lucky. Be prepared though for some kind of complications...be it infection, difficult stoma, leaky pouch, human error (in hospital), or just a number of things that result as a surgery of this magnitude. If you've been reading the posts you are getting a taste of them. BUt also, don't let it freak you out. It's not guaranteed but it is good to be prepared. I didn't want any surprises.

It will be a long jouney but the majority of people will tell you it is worth it. It has changed my life in so many more ways than just physical. This experience has literally transformed alot of mental, emotional, and spiritual issues that plagued me.

I will keep you all in my thoughts and prayers on your upcoming surgeries. Feel free to ask any questions by email, pm, or whatever.

Good luck and Godspeed.

Laurie

PATIENCE - make sure you have tons of patience before going into surgery. That is my #1 advice.

You will often have to measure your recovery in weeks and sometimes months at a time. That can be very. But, just keep thinking that it only gets better and better from that point on - Eventually you will be feeling better than new!

Keith

That was a good idea, Laurie - I've saved my posting so I can just insert it into future posts
I definitely wish I'd found you guys before my surgeries. It would have saved me a lot of agony. The point about human error is a good one, too. At hospital they gave me the wrong dose of medication, penicillin when I'm allergic to it (it was written in my journal, too, but they oversaw that) and an epidural that slid out of position so I had no pain relief just hours after my step 1 (colectomy, pouch creation and loop ileo creation). It would have helped me enormously to get the advice and support that is available on this site. But...I survived! And I don't regret the surgery. UC had left me with no life outside the bathroom floor.

I am wondering how many people are here like me. I am 1 1/2 years post ileo and only considering a Jpouch because I have researched it. My colectomy was done as a permanent lifesaving procedure and no options were presented to me at the time other that Oscar (my ileo!) I certainly know the pain of the surgery ( like nothing I have ever experienced in my life) and the struggle to recover.. I cam out of a 6 day coma not being able to do more than lift my head. Right now the J pouch surgery doesn't seem as difficult as anything I have already been through since I have had my colectomy. So I am part way through a Step 1 which means I guess I will have a Step 2 and Step3??!!

Thanks everyone for the insight and support. Sorry for all the questions (first surgery)
I had a couple of other questions. Does anything pass thru the anus after the step 1 surgery.

How bad is the pain when you wake up?

The scariest part for me is having the bag - albeit its temporary, anyone felt the same?

I am so happy to have an option to be rid of a disease and more importantly have a CHOICE while I am still young.

Thanks Everyone