ANTIGUA9 - My life after my defective colon was removed has been wonderful. These are the things that people cannot seem to understand who totally rule out the surgery option or don't want to consider it. Even when your colon is in remission and you feel fine, on the cellular level it is still under attack by your body no matter what drugs your taking. This is why you have to get the constant colonoscopies years after your initial UC diagnosis because these inflamed cells can mutate into cancer and you get your colon removed anyway at age 50 -70. You are constantly balancing on the knife's edge between being somewhat healthy and your next flare. To me the long term side effects of the drugs used to treat UC outweighed the risks from the j-pouch surgery, and my UC was intolerable and I never went into a "remission." This was why the j-pouch surgery was sort of a no brainer choice for me.
Here's the details of my surgeries so far:
Surgery 1 (total colectomy - removed all of my colon but left the rectal stump)
about 2 weeks post op I could tell that the constant pain I was in from UC a year earlier was gone, and I just had pain from the incision and all over my abdomen where they removed the colon I guess. I was off of work for 8 weeks. By the 7th week I was able to walk around easily - wasn't hunched over like the weeks right after surgery. I couldn't stand up straight for about 5 weeks post op. You are very week after these surgeries and it takes about 2 months before your energy levels get close to normal, I mean normal before getting UC. I got a lot of rest like 14 hours of sleep throughout the days and nights.
It took about 2 weeks after I returned back to work before my mind caught up to the way I was before getting UC. My job is very detailed (engineering and GIS) and I have to think quickly on my feet all the time and concentrate the whole time I'm there. With UC, I couldn't do that, so my mental state and mental speed came back about 10 weeks post-op. I began traveling and going out into the field about 12 weeks post op, still tired quickly, so I avoided climbing large hills or going down into steep embankments. about 14 to 15 weeks post op, I was able to do yard work again, like trimming tree branches and bushes, something I couldn't do the year before. I would say about 3 to 4 months post-op your normal, how you were before UC and off all UC medicines and prednisone. With a stoma, you'll have a weight lifting restriction of 30 lbs, because they don't want you to get hernias where your stoma is located. With me I seldom lift more than that, and if I do, it's very rarely,usually adding 40 lb bags of salt to my water softener and I try to use my back.
Living with a bag wasn't a big issue for me, since I expected it and it's temporary. I spent the first month after surgery researching the different bag systems out there. I settled for the Hollister 2 piece system, and for me the wafers last a week, so I change them every Sunday morning in the shower (best place I think to do bag changes) and change the snap-on bags with the filters (so they won't fill up with gas and become like a balloon) every 2 to 3 days. This seems to work perfectly for me. I mastered this process after a few changes. I've had some leaks, mostly from letting the bag fill up too much, mainly when I'm at home or sleeping. Yes, you can sleep on your sides and on your stomach if you want, but one thing I forgot to mention, it takes about 4 weeks post-op before you can sleep on your sides, your stomach and abdomen will hurt too much so you'll wind up sleeping on your back most of the time. I empty my bag about 6 times a day. The only limitation from the bag when doing activities is that you cannot jump into a pool, or it will tear off, I didn't experience this, but one of my hospital roommates who had both ileostomies and colostomies from Crohn's warned me. He also told me about changing the bags/wafers in the shower...both great advice. You can swim and go into hot tubs without any problems. So I don't know what other limitations there are, I haven't found them yet.
So living like this is the worst case scenario for the 'j-pouch' surgery - living with a permanent end ileostomy if the j-pouch ever fails. So, I guess I was lucky enough to get a 8 month preview if my j-pouch ever fails, which I know is a million times better than living with UC. I'm able to eat everything, drink everything including alcohol, and do everything I did before UC. The only things I notice is that I need to drink more water throughout the day and during the summer and to me the temperatures outside feel 10 degrees hotter than life before UC, so I avoid going outside when it's in the 90's or upper 80's.
However, with all that said, I cannot say surgery will be easy and complication free - so be ready for some, just in case. I developed a blockage to my small intestine on July 30th from scar tissue from when they removed my colon back in February, which squeezed my small intestine causing a food blockage. I was in the hospital for 18 days, the first week they were waiting to see if it would pass on it's own (since they say 70 to 80% of them do), then they operated and removed the scar tissue and also a section of my small intestine twisted upon itself, I guess they just undid the twisted portion, they didn't cut anything out, and now everything is passing through just fine. They went through my old 10" incision and the pain from that surgery went away 4 weeks post op and I'm like how I was 8 weeks post op from my first surgery.
Unfortunately, my j-pouch surgery was scheduled on Sept 25, because of this recent surgery, I have to push it back 3 months, they don't want to go through the same incision without allowing 3 months of healing between surgeries, I guess it gets too soft and may tear, or you may get even more excess scar tissue. Also, when they operated to remove the scar tissue, I had a hemotoma (internal pocket of blood) build up behind the incision, they removed a couple of staples, opened it up with the end of a pair of scissors, and squeezed my belly like like a big zit, and the nurse got two gauze pads of blood out of it. It didn't hurt that much, but I just amazed a nurse could jab you with a pair of scissors like that. I had another opening lower on my incision opened almost after surgery to allow for some other drainage. It began draining mucus and clear liquid. I just found out today that when the leave the rectal stump, it forms mucus and clear fluid and I normally drained it out my bottom every 3 days (yes, you'll still use your butt with the colon removed and the j-pouch not formed yet), well, I'm one of the 15% of the patients who are lucky enough to have this stomp find a new drainage route and it now empties out one of my holes in my incision that they made for drainage.
It only drains about 2 table spoons a day of mucus/clear liquid with white and yellow specks in it. It almost looks like chicken broth with some fat in it and it doesn't smell or anything. So now instead of going out the normal route, it comes out of my belly. They told me that the new duct connecting the rectal stump to my incision hole will not close until they do the next operation. The hole in the incision they made to allow drainage will heal to the size of a dime or slightly smaller. This hole will continuously drain, but it's only 2 table spoons worth, until the next surgery when they remove the rectal stump and form the j-pouch, so I'm considering having the next surgery in November to do this, because I don't want to have an open wound too long.
So these are my only setbacks, but not really that bad. Otherwise, I'm living normally again and the j-pouch surgery will make things even better. I talked to some people about the scar tissue thing, it seems like if you get the scar tissue issue, it happens 6 - 12 months after surgery, and if they remove it, then it doesn't really return, so then your sort of out of the woods with that complication 12 months post-op, I guess.
Sorry for the long post, hopefully it was informative.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
Jan. 2009 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"