Will be 1st time ilieostomy bag carrier with no hope of reconnect

I will try to answer what I can for you. I've had a Colostomy back in 2013 for 4 months and now I just recently had my colon removed, J Pouch created and a temp Ileostomy.

First, it's completely natural to feel overwhelmed by all of this. It's a lot to take in and your mind goes in all different directions trying to figure things out all at once.

As far as emotions, everyone will handle it differently. I know mine is temporary so I may handle it differently then someone who is told they are going to have a permanent one. Some people welcome the decision to get a permanent one to no longer be sick and to get their life back. I had no quality of life so my decision was easy to go through surgery and I'm mentally prepared to accept a permanent Ileostomy if my J Pouch fails. Whatever option gives me the best quality of life I'll take it.

I have no problem with my Ostomy, I've had one before so it wasn't brand new to me, I knew what to expect but the first one will take getting used to, understanding supplies needed, how to change your bag etc. I hardly notice mine for the most part unless my stoma is a little active or if I'm developing some skin issues around my stoma and I feel things down there.

I may empty my bag 5-7 times a day but I also eat a lot all day long. I have a "loop" Ileostomy which are harder to deal with than and "end" Ileostomy which is permanent. My stoma is very active an hour or two after I eat and my bag fills up fairly fast. I tend to empty it when it's a 1/3 full. Emptying the bag is simple, you can either sit on the toilet, scoot further back and open up the bag and drain it into the toilet between your legs. Some kneel in front of the toilet and do it that way. If I'm at home I have a cup of water that I pour into my bag just to wash it out a bit. Then I'll just take some toilet paper and clean out the inside edge of the bag opening before resealing it up. It's fairly quick and easy.

At one point or another you will probably get some poop on you. I have a two piece bag which means the bag can be separated from the flange that is stuck to the body. I have had my bag seal where it connects to the flange crack open by accident and leak. There is also a chance your seal that is stuck to your body can leak. In the 4 months that I had my first Ostomy, I may of had two situations where I had a leak issue. I had my two piece bag separate a little bit during the night and leaked in bed. You also have an option of a one piece bag as well where the flange and bag are all one piece.

I lost weight due to surgery, I actually lost 20lbs but have been slowly gaining it back. I've also had to deal with dehydration due to my Ileostomy because you no longer have a colon to absorb water back into the body. My body has since adjusted and my hydration is completely under control with no issues.

As far as scaring, it will depend on how they do the surgery. If it's done robotically you'll have virtually no scars as they only make small holes for the probes to insert into your abdomen. Due to me having surgery before, I had too much scar tissue to do a portion of my surgery robotically. They had to open up my abdomen.

I forgot to mention, about getting poop on you, when you change your bag, if your stoma is active you have to deal with poop coming out of it while trying to do a bag change. I know that doing mine first thing in the morning when I know I have no food in my system has proven the best time for me. My stoma is quiet and virtually to no stool comes out of it

My advice to top on every one else? make sure you sit down with an ostomy nurse before you leave the hospital. See if your insurance will allow for a home visit or two.

Hi Badaboom, so sorry. It is overwhelming, and I can totally see why you're tired and scared, but honestly, it sounds like you've been through much worse than having an ileostomy. Great that you reached out, and I hope you continue reaching out. Definitely get connected to an ostomy nurse as soon as you can, and s/he can tell you of other resources in your area. There might be a support group at the hospital (which would be worth the drive at least once, to see some regular people w/ostomies ... so reassuring) or they may be able to connect you to a person to talk to in person or on the phone. Here are some answers to your questions/thoughts:

"I have a husband and family that are very supportive. I feel sorry to them and for them to have to watch constantly someone they love battle something or another constantly. "

It's great that you have support. In some ways it is harder to be the caregiver, I know how hard the whole process was for my partner.... but I'm sure they want you using your energy toward improving your health not toward feeling guilty for being sick.... think of what you'd want if you were healthy and one of them was sick...

"pros and cons of your ostomy?"

Pros -- it gave me my life back. I have more energy and can do more things and am not chained to the bathroom. Cons -- I've had some complications that required more surgeries and there is a learning curve ... .

"How was your emotions when you first got told you needed one?"

Well, it was a different trajectory for me. My doctors had been suggesting for two years and I was adamantly opposed. Then I got so sick that it was clear that this was the best option. At one point I just decided, "I'm done," and I was relieved. That feeling has stuck. But there are a wide range of emotional responses, and none is the right one.

"Is it normal to feel this overwhelmed by it all?" Yes.

"How is your sex life with it?" Sex life was non existent before surgery because I was so sick. The bag is not a big deal afterward, feeling better is.

"How many times do you have to go to the bathroom and in disposing of bowel in toilet is it easy? Does one get poo on them often?"

It depends on what I eat and also how often I decide to empty... sometimes when I'm going out I empty even though the bag isn't that full. I'd say 6-8 times on average. There are some tricks to not getting splashed (put tp down first) and to not getting poop on your hands (depends a lot on the product -- I liked the coloplast bags as they are easiest to empty, but I can't use them anymore). You figure it out..... It's much easier than when I had urgency and was running to the bathroom all the time.

"Do you lose weight?" I gained weight because my digestion was working better... .then had to go on a diet like regular people to lose it back....

"How does the surgery scar look?" My first surgery was laparoscopic and the scars were four little things that look like tic tacs. You could see if that's an option for you -- the recovery is quicker too. When I had a hernia and emergency surgery I got an uglier scar, but I'm getting used to it and it's fading a bit.... again, this was to save my life, so I try to maintain perspective.

Hang in.....