Life after total colectomy for UC! Experiences needed.

Moonshine,

I'm sorry you're not achieving remission with medication. I had Crohn's in my colon and rectum for 7 years, and the medicines weren't working for me either, so I had surgery two years ago. Since I had disease in the rectum, I was not able to have my small intestine connected to it. My surgery was open, and I have a permanent ileostomy.

Much to my surprise, I was out driving and grocery shopping two weeks after surgery. I did not go back to work for 8 weeks, because I would get tired at different times during the day while I was healing. I can eat whatever I want, work full time, excerise and have no pain. I'm disease-free and don't have to take any medicine, which is a real blessing.

The only problem I've had was a blockage in my small intestine back in March of this year, which was caused by scar tissue from the surgery. That got fixed with surgery, and I was back to work 6 weeks later. I didn't get too concerned about it, because that can happen to anyone who's had abdominal surgery.

Since I have an ileostomy, I have a lot of freedom and don't ever have to think about where the nearest bathroom is. I love being able to shop for hours and sleep through the night.

I'm glad that you're inquiring about the pro's and con's to having surgery. Everyone here is so helpful, and I know you will get good information from people who have been in your situation and have had the same surgery you're considering. Please ask us anything you want, and we'll do our best to answer.

 Cecilia

I'm in between J-pouch surgeries currently, so I have a unique perspective. My UC was terrible - pancolitis right off the bat and it never went into remission with Asacol and Prednisone after a year of drug treatment. The prednisone gave me osteoporosis after a year, and I still was not getting/feeling better, so that was what convinced me to start considering the surgery route.

My aunt (great reference medicine wise) is a pharmacist and she told me that Remicade is classified as a chemotherapy drug, and I didn't like the risk of cancer that leads to instant death on that drug fact sheet. So I refused to "graduate" to the next level of dangerous drugs. The potential side effects of those drugs seemed to outweigh the risk from the j-pouch surgeries to me. So I wasn't going to take that stuff for 40 - 50 years just to see what happens along the way.

Also, this is what sealed the deal for surgery to me -- my GI doctor told me that even in remission, my colon is still inflamed on the cellular level and that's the reason why anyone diagnosed with UC needs colonoscopies every 1-2 years after 10 years of being diagnosed with UC (regardless whether your in remission or not). Your risk of these inflamed colon cells mutating into colon cancer 20 years after the initial UC diagnosis is 30 times that of a normal person and continues to increase with age.

So I figured, why take drugs "now and forever" that will ruin my otherwise healthy organs, while still having to face the increasing chance of having my colon removed 30 - 40 years down the road anyway because of colon cancer. I decided I would rather go through the surgeries now while I'm young and preserve the rest of my other organs since I haven't damaged them that much yet with the drugs. So this was my rational for the j-pouch surgery.

I think your talking about J-pouch surgery and then living with it. So I'll explain what I know and what I experienced so far with the surgeries I've had.

Having only 2 surgeries (two stage) is the "best case" and most common scenario for the J-pouch surgeries - sometimes they do it all in one surgery, but very rarely.

Mine had to be done in three stages (3 surgeries). The little secret about prednisone is that if your on it long term (more than 3 months), it turns your internal organ walls into the consistency of butter, so they will not hold staples or stitches. I was planning on having my surgery(ies) done lapriscopically at the Cleveland Clinic, but they had to open me up instead. So I have a nice 10" incision that curves around my belly button. I found this out after waking up. They told me doing it lapriscopically in my case would have caused more trauma to my organs and abdomen, I also found this out after waking up. So expect the unexpected.

So for my first surgery (4.5 hours), all they did was remove the colon and created the temporary ileostomy. They couldn't make the J-pouch out of the small intestine since the organs were "soft" from the prednisone. After they removed the colon, they left the rectal stump - basically the anus and a small amount of the end of the colon (stapled shut). I guess it makes it easier to find and attach the j-pouch when they do the next surgery. The interesting thing about the rectal stump is that it still produces mucus and clear fluid that you pass as a BM about every 3 days. Very interesting to have stuff coming out of three openings instead of two.

As for the temporary end ileostomy, I found it more fascinating than weird or dirty, and I didn't have the emotional issues that I've read about some people having. I mastered the bag thing after 2 weeks. I recommend not using the supplies the hospital gives you, but research and get lots of samples. The medical supply people will be hounding you to get your business when your released from the hospital. I finally went with the hollister 2-piece system. The wafer part lasts a week, so I change them on Sunday mornings in the shower, and I change the bags every 2 - 3 days (they just snap onto the wafer), and that's how long it takes the filters to stop working and they begin to balloon up from your gas. Right after surgery, the small intestine and stoma are swolen and you can only eat a "GI soft diet" for 6 weeks, basically anything that you can cut and mash with a fork, except raw fruits and vegies or anything with skins. I would say I empty my bag about 6 times a day and sleep all night. If your food is really thick like eating potatoes or other thick things, you can sometimes feel it coming out. I would say it feels like a worm crawling out of your stomach. Otherwise, you cannot feel the other stuff coming out into the bag 95% of the time. It just fills up, the bag gets a little heavy and bulges, and that's when I know I need to empty it. The only thing limiting on it is jumping into swimming pools, otherwise I haven't found any limitations yet. I also didn't experience any of the dreaded leaks others have talked about. Just be careful with it and find a good system and you'll be fine.

After 6 weeks post-op, you can eat and drink anything, including alcohol. I was also able to taper off Prednisone (one month taper after surgery) and stopped all my other meds the day of the surgery. So I was drug free. I felt normal again 2 months after surgery - other than getting tired quickly, stamina is the last thing to come back. 4-5 months after surgery I was truly normal again (even energy wise)...like someone flipped a switch and I felt like how I was before UC. So, this is the state that is considered the "worst case" scenario if your J-pouch ever fails. Which is living/feeling normal with an ileostomy and a bag stuck to your belly. Not bad at all, and this is the worst case with the j-pouch surgery option.

Anyway, because I'm drug free and off the prednisone, I had to wait 6 months for my organ walls to heal up and not be "soft" anymore before I could schedule the next surgery (Stage 2). I was planning to have my 2nd surgery that the would create the j-pouch out of the small intestine on September 25th. Since I had an open surgery for the first one (and not lapriscopically), the remaining ones would be done that way as well. It would be crazy to cut more holes in my belly at this point in time.

Everything was going along fine until I ran into a little surprise on July 30th when I got a blockage, eventually determined to be from scar tissue from the first surgery. When I woke up, my output in the bag was very minimal that morning, and I had abdominal cramps and I was vomiting every 2 hours during the day. I then spent the next 18 days in the hospital. The first week they waited to see if the blockage would pass on its own, then they operated on me. All that they did was remove the scar tissue from my first surgery that had built up around my small intestine and began choking it off. Then after the surgery (2.5 hours), they almost killed me with the morphine pump - it basically malfunctioned and gave me a dose every time I hit the button, instead of a dose every 10 minutes regardless of how many times I hit the button. I got an "elephant sized" dose as it was explained to me, so that was why I was in 11 more days, because it slows down your body's healing process and slowed down the time for the bowels to "wake up" after surgery. That surgery recovery time was 5 weeks, so I was off of work for a total of 6 weeks. I tried to get them to do the j-pouch surgery then, but they said the small intestine was swollen and it would lead to complications if they did the j-pouch at that time.

So then I had to reschedule my next surgery (to make the j-pouch) for November 20th, 3 months later. They will not go through the same incision less than 3 months apart, otherwise it would be too soft and can split open. So baring any unforeseen circumstances, I'll have my j-pouch created on November 25th and will be off work for 2 months for that surgery. Then the last surgery to reverse the ileostomy in February (3 months later), and I'll be off work a month for that one. I'm currently feeling normal and can eat and drink anything and am drug free, except 2 pills a month for the osteoporosis. So I'm doing great during these in between surgery periods.

Hopefully all goes well and I'll give you another update.

Living with a J-pouch. From what I've been told from the people I know that have them. You don't have any urgency, you can hold it as long as you want, it is just uncomfortable, mainly like before UC. Going 6 times a day and once at night or early morning is normal. You go a lot after the pouch begins receiving waste, then 3-6 months afterwards, it stretches out and you get more capacity and begin going less and less during the day and night. I was wondering about that as well because my job involves working in construction and traveling to remote locations without restrooms. If you get pouchitis up to 30% chance, it's like you have UC again, but it can be treated with antibiotics over the course of a few weeks and it usually goes away. If you experience total pouch failure or chronic pouchitis, only 5-10% chance at the Cleveland Clinic, you'll be living like I do now. So if you can live with the idea of having a permanent ileostomy but feel 100% normal, then I would say you cannot lose with the j-pouch surgery option.

I would never go back to my UC days, or regret having the surgeries.

Hey moonshine! Im 17 and a senior in high school now but my junior year is when I got REALLY sick and none of the doctors where I live could find out what was wrong with me. So each day I just kept getting worse and worse losing more wieght and feeling sick every single morning! So my parents decided to take me to a hospital an hour and a half away from here and by then it had been about 8 months since I started having symptoms of UC..The day after I got to the hospital there, my amazing!! doctor diagnosed me with UC. (Pancolitis) Your story sounds like the identical twin of me. I tried Remicade and it didnt work at all. I was on prednisone and everytime I tried weening off of it, I would flare like crazy and have to go back up. I was on Methotrexate shots which are horrible! they made me sick for like 2 days after I got it. I tried everything out there it seemed like. And nothing was working the way it should so my doctor started pushing me towards surgery. But then for a few months he didnt talk about it and I got on here and read about how ileostomy and j-pouch surgery changed their lives for the better and of course theres risks for any surgery! But you cant let that scare you too much. Having someone to talk to who had this surgery REALLY helps so ask your doctor if he/she can hook you up with someones phone number =)

I had my ileostomy surgery Nov.19 so its still kinda new to me but i cant even begin to tell you how much better i feel now that my colon..that nasty infected thing..is out of me and i feel like my old self again! It sounded too good to be true at first but its most deff true! You wont regret having this surgery if you go for it =) I promise! Come join us ostomates =)

My daughter was diagnosed with UC in October 2006 at 15-1/2 years old. She went through the usual meds. She had 3 flares in 1-1/2 years, all very intense (30-40+ bowel movements a day, out of school for 9 weeks at a time). She had her 1st surgery July 3. She was in remission at the time. In the hospital for 6 days. Walking was really hard for her. Took the summer to recuperate and adjust. For the most part, everything was good. Her ostomy "burned" when it output for the first 2 weeks. It took about the same amount of time to figure out how to change her wafer (I helped each time). If you search for my posts from around early/mid July you may read about how in the beginning it took over an hour to change her wafer! By the end we generally had a good routine. She had a full incision. She didn't take much pain meds when she came home (percoset and usually only at night to relax her enough to sleep). She did tire easily in the beginning. She would sometimes use the motorized carts at the stores if they were available. Standing too long too her breath away. But she began senior year with her ostomy (and was healthy). She got winded walking up several flights of stairs. She learned what foods bulked up her stool and what didn't. She didn't get any blockages.
Her reversal was November 10. Very quick surgery (less than an hour). Much less pain. Walking with no problems. She was in the hospital for 4 days. In the first few days, she had some near accidents (but not since then). She had some butt burn for a few weeks. We think it was mostly until she had more food in her system (she really didn't eat much the first few weeks). She went back to school the beginning of December (could have gone back after 2 weeks but it was Thanksgiving week and only 2 days of school). She has learned what food cause her to go to the bathroom more frequently or cause some burn. She doesn't really count how often she goes. If she has to pee, she generally poops. No urgency. No cramps. We have been out for hours at a time and not worried.

She lost the 45 lbs she gained from prednisone. She looks better than she did even before she was on the prednisone (and is smaller in clothing size). She has tremendous energy. This is her senior year and she didn't want to worry about when she would flare and how much she would miss. One thing I have noticed is a peacefulness on her face. I can't really explain it. Even when she was in remission and going about her everyday life, it was different.

We went into this whole thing knowing that her "new" life would be different (better but different). We planned it so her first recovery would be over the summer to give her more time to adjust. We figure she will continue to see minor changes over the next year. But she is happy, healthy, and very glad to say "I had UC!".

Miss Moonshine...

Everyone is giving you such valuable and amazing guidance and support.     Some of us here are between J-pouch surgeries and some of us are with permanent ileostomies...and those of us who are UC-free   would agree that life after surgery is AMAZING! 

Not everyone has chosen to have the reconnect surgery...my personal opinion is that I want nothing to do with going poo every again!  I have yet to regret my Penelope (stoma)

All of this can be very confusing and intimidating...please remember that there is no question we are not comfortable answering!  You should see some of the conversations on here!

 

Moonshine,
I had my colon removed in July 2007. My new life began in August 2007. I sail,surf teach in the pool, and ran my first
half marathon in Napa,Ca. to raise money for the CCFA. Since that time I have run two more half marathons and will do
another in march. So yes there is a whole wide world for you to enjoy after surgery. I have a permanent ileostomy and
sometimes it has a mind of its own but it is so much easier to deal with than being sick all the time. Your life will improve
beyond your expectations and the only limits you will have are the ones you put on yourself. Good luck and remember
you have lots of people here to help and support you every step of the way.
Fruitcake

caramelsweet I am 50+ I had my colectomy 6-2010 and reconstruction 9-2010 after being diagnosed in the fall of 2009. You mentioned you were sexually active with no problems there. I have been sexually in active for more than 10 years. With the prospect of a new relationship on the horizon, are you troubled by gas when you are intimate, as this something that comes up rather quickly with me? Any contributions would be appreciated.

Hello everyone, i recently had a full colectomy I currently wear a bag and all that but it's only temporary, has anyone had the j-pouch surgery and what can i expect? and also to any girls who have had this surgery has your periods been weird afterwards?