Feeling Trapped Post-Ostomy Surgery, Need Advice

Hi, I had my ostomy almost 5 months ago, and I feel like a prisoner in my own life. I need to know where I stand. Where did the rectum go after surgery? We finally got the bag situation resolved. Now I have another problem and don't know where to start. I feel wet all the time, but when I go to the bathroom, I am not wet. I feel pressure where my buttocks used to be. Is this normal? Where should I go to find out answers to questions like this?

I get that problem, but it goes away after a while.

Hey Pat, sorry you're having difficulty. Hey, this is life-changing stuff and it will take a while to adjust to it. It's sometimes normal to feel like you need to go to the bathroom... I think these are called phantom pains or something similar... if that's the case, in time they will go away. Just monitor it to be sure there isn't a medical problem. The main thing is to not panic or fear... there are about 3,000 people on this site who live normal lives with an ostomy... so you can too. Nobody says it's easy... but you can do it. Where do you feel wet? I would caution you against staying home/in... get out in small steps... go for a drive or a short walk every day... it will help your attitude and build your confidence back. Do you have an ostomy nurse at your hospital? If so, she can direct you to a nearby support group... most places have them. It helps if you have someone close you can call with questions... Is there a member on this site close to you? You could do a search by location. Good luck and keep us posted on your progress.

It will take time. Everything is so displaced now. It will take a little patience too. It will be Ok. Just hang in there.

I remember feeling those same phantom feelings - even thinking I had to go to the bathroom. It will disappear with time. Rather than think of yourself as a prisoner, remember that now you're actually a lot freer than you ever were. This surgery gives you your life back. It might take some time to feel that way but it's definitely true. Just take it one day at a time, try to get back to your regular routine and enjoy your new life. Remember, too, that there are people out there to talk to and ask questions. We've all been through it.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Yep, your brain just cannot believe your body does not have a hole behind it anymore. It goes in stages. Pretty soon you will be telling everyone you know that you have a stoma, then you will be telling perfect strangers that you have a stoma and no arsehole. Hang in there and check with your doc every once in a while if you panic, and ask questions like this here also. Life will get better for you as soon as your brain accepts that it works a little differently now.

Thanks for sharing, Happyme! I am about 8 weeks after having half my colon removed and have been through all of the symptoms (mucus in the rear when I bear down too hard, horrible bowel cramps, two messy blowouts, etc.), but in time have seemed to moderate a lot. So, gal, please hang in there! I promise it will get better. I, too, am an amateur and I sure appreciate all the sage advice here. And, for the encouragement from my trust in Jesus and my sweet wife of 50 years too!

1happyme, I also had all those same feelings, but I never asked my doctor about them, just read what I could and figured this was normal. If you have concerns, it is always good to ask your doctor. I just knew in Atlanta I really had some good doctors downtown and I did great in the second hospital. So whatever went wrong after I found this site, I did what you did and asked. I hope things get better for you, but it has been close to a year for me and I still have those feelings. I hope if you are really worried that you do ask your doctor and even ostomy nurse about this. I am learning so many people's lives have been saved by having these ostomies and am looking at things a whole lot differently. I never was one to judge, but being a nurse, you do have some patients that have given up and don't seem to care about taking care of themselves, so I tried to avoid this work. I was more into dermatology and plastic surgery. Now I am not sure how I feel since this has now happened to me and people I care deeply about. Please take care of yourself, and I promise doctors expect these questions. God bless, and I hope you have a good life, Jenny



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Hi HappyMe - We've all been the new kid on the block at some point!  I started feeling comfortable with my first colostomy at about 7 months.  I was almost sorry to see it go when it was reversed.  5 years of pain and suffering later, I had a permanent colostomy placed.  Felt happy and carefree about 8 months, then went into a deep nosedive of depression.  But that lifted.  It's all about loss and grief, then acceptance. (Did I say that?)



The phantom pains are experienced by just about everyone.  I still have a portion of my rectum, so I can use suppositories to help.  The single BEST thing I have found though is WALKING.  It gets you outdoors and helps reduce the pain.



I had my ureters messed up during my surgeries so my bladder leaks at all different times.  I just have to wear a Poise pad all the time.  Doesn't keep me from doing what I want.



Please DO get out of the house.  Even if you are not a "joiner", please find out about the UOAA Ostomy Support Group in your area.  These groups are more educational and structured, and a way to make new friends, and not a place to sit around and cry about having an ostomy.  You find out the best ideas there (and here on this website too).  Please don't imprison yourself!    

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And on top of what everyone else says, just be prepared to grieve your lost body parts. It sounds kind of weird being upset about losing something you never really saw and took for granted, but those of us who have had proctocolectomies, ileostomies, etc., and have had bits removed have been through it. Not pleasant bits, but it's all about growing and learning. Chin up, things will improve in time.
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Hi Happyme; I had my ileostomy for a few years. Yes! I felt phantom pains, and the old urge to "go" sometimes woke me up, which makes me believe it's the mind missing your parts. It will get better!!! Before my surgery, I was trapped/panicked/obsessed with my toilet after having bloody accidents in public; now I'm out there doing everything again, no worries except for the occasional pouch-pop. Give yourself time to adjust to the "new" you. We will be here for you. I hope you can find a mentor close by. I'm the only ileostomate in my town, thank goodness I found this site! I still get draining fistulas on my bum; it's frustrating! I use a super thin panty-liner. Hang in there, good days are close. Lex

Greetings 1happyme, one of your questions answered one of my own. Where did the rectum go after surgery? Then it dawned on me, it has to be one or two politicians I have in mind. Enough kidding around, but after seven years with an ileostomy, there are times when I'm sure I have to use the toilet as it feels so real. Now, this only happens about once every six months. Of course, it's all in my head, as evidenced by some of my posts, LOL. Anyway, you've gotten some good advice from others, and I hope you can try to dig yourself out of your self-imposed prison like so many of us have had to do. Really wishing you well in your endeavor, Ed,
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try to keep smiling.

Hi 1happyme!



It's still early days for you. Agree with all the advice.



Think it's very important that you stay in touch with your Doc -- or better yet -- get an Ostomy Nurse on board. No question - my ET nurse made the difference in how I cope with my ileo. The docs were very "ok, everything is done, off you go". The day to day stuff we experience - they're not interested/don't have time.



Personally, I have to admit that (for me) I can't quite say that life is better/I'm freer/enjoying life more. I've always enjoyed life, even with horrendous UC. Life has changed for me now ... I continue to enjoy life, but my life as I knew it has changed. There are good things about the ostomy, there are bad things. Just like all of life. Remember than right now, your overall health is at a low and everything is or seems worse now.



There is a definite grieving process involved too ... Gus is right. I was suprised to experience depression a good 5 months after the operation - that's when it set in, when things were actually settling down physically.



Things will improve. Remember to live in the moment. Do not be a hermit. Little steps. Walk around the block. Go to a bookstore and look at magazines for awhile. Whatever you like ... do a little of it. Have some of your favorite music playing in the house.



All the best,

Beatrice

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I agree with Gus. Well, I agree with everyone. Please don't think you are a prisoner. Yes, we all get depressed. I did at every surgery; never get used to it. I also suffer from depression, but I get through, and I get the feeling to go to the loo, but I go and sort of push, but then the urge goes. Yes, the brain is saying, "Where is my bum gone?" I get that mucus as well for the last 2 years; it drives me crazy. I would like to know when the bum is closed up, where does the mucus come from, and how does it get through something that is closed? And you might think you won't get through, but somehow we all seem to. I even bungee jumped on my 30th birthday when I had my first temporary stoma formed, and it was silly to think bungee jumping was going to be fun. It was so scary, but I did it. If I can do something crazy, you will get through the dark times, but we all have the right to feel so depressed; it's our right. We have to mourn, and I also have my moments, but it gets better when you're not so sore, and things get better, healing-wise. You will change. I actually wore my pouch on the outside of my pajama pants. Lol, now I wear anything. No bikinis. Cheer up, get on this site and chat; it can help. Cheer up and get your health back, kiddo. It will happen. Bye from Down Under, Mooza

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Hello 1happyme, you have come to the right site. I know how you feel. I've had my ileo for 2 years now and can remember the "phantom uh oh I gotta shite coming" and after sitting on the toilet a few times in fear, I realized how stupid I felt, and started laughing. Your body has gone through a HUGE change. What we are born with and lived with for many years and now is gone will take time to stabilize. Your brain will adjust and you will look back soon and think how funny it is. I agree with Pinky and everyone else here, that you start with walks and driving close to home. If you were active before, be active now; you've been given a new lease on life. I was sure I'd be in bed the rest of my life after my surgery. A month later, I was back on my Harley and having fun. I think it's funny when people use the toilet now. I mean, you people have to sit on that seat after somebody else just crapped there. Wow, I never have to do that again. I'm special.
Just keep coming back to this site and tell us your adventures and tell us your stories and what does and doesn't work for you, and we will be happy to share our wealth of info with you.
bikerboy greg