Still undecided

Ok. I you must have colonic inertia also with all markers retained also. Ugh. So the ileostomy is the way to go. Taking milk of magnesia for life is not the way I would want to live. It causes bloat all on its own.

Why don't you get a trial loop ileostomy and see if this makes your life easier. Then you can always go back like I did and make it permanent. I still have my rectum and struggle to get rid of the mucous. It is a pain in the butt. Lol. But I am scared to have the rectal stump removed as I had so many body parts removed already.

Life with the bag is easy easy compared to dealing with colonic inertia and the pelvic floor dysfunction.

I've been to the beach and developed a yeast infection around my stoma. Would I rather deal with this than what you're going through? Yes yes yes. This is a breeze in comparison.

I can eat and drink and go anywhere. I'm no longer chained to the bathroom. I'm no longer housebound.

I have read that the loop ileostomy is also harder to pouch and poses a greater risk of skin problems. However, occasional leaks and/or skin problems seem to be inevitable by the sounds of it.

I'm just not sure whether my personal level of bowel-related discomfort warrants the procedure or not. I don't have much physical pain most of the time. I think that having to make this decision is much worse than either having the surgery or not having it.

However, I would think that for an elective surgery this major, it's best not to schedule anything unless and until I can feel completely certain for more than a few hours or days. That's not happened yet, and I don't know if it ever will.

2b ColonFree said...
it is a big decision. naturally and normally you have so many doubts and fears and that's very understandable. it wouldn't be normal or even human not to have fears. but only creating a stoma w/o removing anything is a minor procedure and gives you the chance to examine how it's like, if it helps you or not. my opinion is if your life is like you described it in your first post of this thread, i think surgery is your only option to have a better quality of life, Jack.

It is considered major surgery from my understanding. However, anything that keeps someone in the hospital overnight is major surgery in my opinion, and the thought of the hospital stay alone is terrifying for me. I just don't adapt well to change.

Many times, the things that aren't a big deal to most other people are to me. I just need the health and confidence to allow me to work a fixed schedule. It's not necessarily something I want, but I see no alternatives for surviving. At the same time, I don't want to have to worry about a hernia from something as light as a couple of gallon jugs of water or a pot of water. I don't want to have to manage obstructions. That adhesive is going to feel very "icky" after a while, especially not being able to change it every day.

I backed out of surgery one time because I learned of the need for a catheter. I backed out another when someone said I could still develop some gas in the unused portion of the colon (which my surgeon said later I would not). The thought of a leak scares me. I've never heard of anyone who has not had a single leak. Occasional bouts of the burning acid is one of the main reasons I'm considering the surgery, and gas is another. Those adhesives seem ENORMOUS and cover over half of my abdomen, so that certainly does not help.

Otherwise, I go back and forth. One minute, I want it, and the next I don't. I'm driving the scheduling departments mad and myself even more mad. Just facing this decision is making me physically sick and nauseated and not wanting to live at all.

Jack, you know what you have now. You don't know what you are going to get. this is a HUGE decision. If a stoma had been elective for me, I would not have done it. Wait until you are sure. A working stoma is actually not that hard to deal with. I had to get mine to save my life due to scar tissue. If you have not had a lot of other surgeries your stoma will likely work well for a life time. But again, if you are not sure or there is not a trend of wanting it for more than a few hours, I would give it some more time. All depends on how much your life is affected by your current condition. In medicine there is no black and white, no guarantees, this likely does not help. But I am thinking of you. Rosemary

To me, it doesn't sound like you are ready for surgery mentally. Its natural to find a few things to worry, but you are picking a lot of things. Sleeping, lifting, blockages the adhesive being icky, leaks, catheters, hosptial stays and other things.
You need the surgery physically but if you aren't mentally ready you aren't gonna be able to deal and that's going to make you miserable.
about some of your concerns, sleeping is not a big deal, you don't have to wake up 4 hours after you go to sleep. Your body will wake you up. Sometimes I don't have to empty until 5 am, sometimes at 1am. Most people on here will tell you their bodies somehow wake them up.
Lifting is going to be an issue for a few weekss, but you won't get a hernia from lifting a pot of water. 25lbs is what you can lift now, you will be able to lift that after a few months. I don't know what kind of physical shape you are, but the stronger your core is when you go into surgery and the stronger you keep it the better you will be.
Make sure you work through all the things you are worried about before you do this
Good luck!