Stoma Question.

[Orionm45]

Good morning. I have had Ulcerative Colitis for seven years. They found abnormal cells and so I am to get my Colon removed on the 18th June 2019. I had the choice to have a Pouch but after reading and watching videos I have decided to get the whole thing removed due to risk of complication.

Here are my fears:

Hernias
Blockages
Not being able to do my job (lifting inflatable boats and petrol engines)
Bags not working or destroying my skin
Leaking
Having to get up every night for the rest of my life

I keep having a fight in my head. I could get just the cells removed and leave the rest but then I would still have UC and have been told your first stoma is the best. Should I try the pouch. Is laparoscopic surgery a better outcome after or is open safer?

Not a question just nerves and fears coming up to the surgery

[Mysticobra]

I had fears also.
None developed.
I worked for another 3 a d a half years on a freight dock.(31 total. Retired in January) Lifting and moving all kinds of freight. The only thing I would not do is push things over my head with out stretched arms. If you think about it that's when you really use your abdominal muscles. And there were plenty of instances when loading trailers this is done. As for lifting. Use your legs.
I never had one problem at work. Not one.
As for leaks. I only get them from eating something I know I should be avoiding..
Mashed potatoes.
Cheese.
I never had a leak at work. Never. In fact being busy I forgot most of the time I had it on.
Skin issues. None. But everyone is different.
Blocages. Never had one with my permanent ileo. Temporary ileo I had several. Different type of surgery.
I get up maybe twice a night. Usually once. But I fall right back asleep. Before my ileo I didn't get any sleep so getting up once or twice is nothing. I sleep like a baby.
All the issues you mentioned were my worries too. None of them came to fruition.
As I've said many times. This has been a good experience for me and has made me healthy again. No pain. I get sleep. O how I missed sleep.
We all have the fear before surgery. I still didn't want it being rolled into surgery the last time to get it. But I was so sick it was killing me. That's how our minds work. We don't know until it's done how it's go a work. Or if you can come to terms with it. And you have to.
I did. I still remember the moment I did. It's a wonderful feeling. And now that I have accepted it. I feel it's been there all my life. Only have had it short of four years. But it's part of me. It's me.
You will have fears. And it will take time afterwards. But if you. Or when you accept it. You'll never look back.
Good luck to you. Believe me. It is good o this side. I wouldn't change back for nothing.
(sorry. I ramble but I would only hope I put some of your fears to rest)
Richard.

[Orionm45]

Thank you so much Richard. That all helps a great deal.

[BillV]

Richard certainly did a good job in explaining his results with a conventional ileostomy and how it was the best option for him. Am I correctly assuming that the pouch option you researched was a J pouch? I had one of the early ones at Mayo Clinic and kept it for 30 years. Although I experienced some of the complications sometimes associated with that procedure, I was able to adapt my lifestyle to accommodate them. When recurrent high grade dysplasia and a malignant polyp in the anal canal made pouch removal necessary, I opted to get a BCIR (similar to a K pouch) since I strongly did not want an ileostomy with its associated issues. I have had it now for 6 years and it has allowed me to enjoy a very good quality of life with no problems. I would give consideration to first having a J pouch since once your bottom is sewn up, that procedure no longer is an option. The majority of J pouchers have good or acceptable results.

Hernias are always a possibility after any abdominal surgery. I have had 4 surgeries involving a midline incision and have never had a hernia. I have done lots of heavy lifting on numerous projects. With the BCIR and K pouch, the small stoma is located about 2 inches lower than one for a conventional ileostomy, reducing the chance for hernias at that location. Blockages usually occur in the small intestine, not in the pouch itself. With a BCIR or J pouch, there is no external bag needed and all stool and gas is kept inside until the pouch is emptied with a small plastic tube (catheter). Skin irritation around the stoma is rare. Most people with a BCIR or K pouch are able to sleep all night without getting up.

You should be aware that people without problems rarely visit online message boards, thus giving the false impression that there are lots of problems with specified procedures. You might be interested in an article I wrote for UOAA’s magazine, “The Phoenix”, entitled "Researching My Options". It is available for anyone to read on the Quality Life Association’s web page (www.qla-ostomy.org) under the News key.
Bill

[Mysticobra]

Yes.
If you are healthy enough to try a pouch of any kind I would certainly do my research on all options before going straight to the bag.
I didn't go straight to the bag.
I had a j pouch for two years that simply didn't work.
I would have regretted not trying an internal pouch.
My health was so bad I couldn't try another because if it didn't work my body could not take it. Another failure that is. My mental state was at its wits end dealing with it
So do your research if time and health allows. The pouch may be a better option.
Nobody wants to wear an appliance if they don't have to. I just simply have to and came to terms with it.
Good luck.
Richard

[Orionm45]

HI everyone. I'm now coming up to 2 weeks since my surgery. I ended up having a total protocolectomy.

Now on this side of it my views have changed. I have got the pain under control and the only issue I have is the stitches were my anus used to be. I believe it takes a while for it to heal. I have had one leak but it was because I sat down to soon after application and a wrinkle on my stomach didn't allow the bag to attach. I get to sleep all nite and empty about 6 times a day. I am beggining to eat more and more each day. Having the bag is not as bad as I thought. It just comes second nature to you after a while.

I would like to treasure people who are getting this done that it is the beginning of your new life. That it will be ok and you can do get through it.

Thanks