Constant feeling of needing to go after ileostomy surgery - any suggestions?

It has been 2 1/2 years since my first surgery and 1 1/2 years since my permanent ileostomy. The problem I'm having is the constant feeling that I have to crap. I had this feeling initially but it passed in about 6 months. Now it's back and I get no relief no matter what I do. I've tried ice, heat, and (a little kinky) used a massager.
Don't get me wrong, the massager has four little feet and I would use it to hit four sides around my stoma when I would have burning and itch issues. Worked great for that!! This ass issue is driving me nuts. I can take the Vicodin and sometimes get relief but I'd rather not after taking all the pain meds for all these years.
Does anyone else have this problem? Do you have a suggestion? Other than being tired a lot, I am fully recovered from my surgeries. Okay, I do have a hernia the size of a Nerf football where my stoma is. But as we all know from what we've been through, don't fix it if it doesn't hurt.
For the new people on here, yes, I would go through all that I've been through for this end result. It will get better. It's taken me 5 years but I'm still here and extended my life from having all the surgeries. God pushed me to the point of wanting to die, but he told me not now. I'm on the right side of the dirt and couldn't be happier. Hang in there, it will get better...

I have it too! The only thing that makes me feel better is to sit on the toilet for a while. Yes, I know that nothing is going to come out. Yes, I might be crazy, but it still makes the feeling go away which is what I am looking for - NO medication!!!

I do the same thing but I don't want to spend my time on the toilet. Before the surgery, I would spend hours every night on the can in pain. I hated that with a passion. I've been having gout problems and just last night, the gout started subsiding. With that, I notice the pain in the a-s has subsided too. I'm starting to think it has something to do with uric acid.

Maybe sit there and read the newspaper funnies. If the feeling still doesn't pass (pun intended), abandon the experiment.

I have experienced this many times (without pain) and have found out that it only happens when I've had too much caffeine, like now after my second cup of coffee. Don't expect me to give up my cup o' joe though!....Gail

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Well now I guess I've been lucky for nine years and about six months ago I started getting this phantom feeling, (I use that term in mixed company), anyway half the time I dont know if I have to piss or have a good S#it. And as mentioned earlier I find that just sitting on the toilet for a short time will lessen that miserable condition for a short spell but returns with a vengance and does wonders for my vocabulary. Maybe somebody can further enlighten us in our quest to fix a broken, unused rectom. Take care, Ed

Hello JGhandiman,

So glad you asked this question and I hope someone out there has a permanent solution.

I have always irrigated before and after the ostomy.  This at least gets rid of all the nasty stuff that seems to coagulate and linger in the bum.  It also eliminates the smell for a while.

I then have anal plugs which used to work well for solids but are not brilliant for absorbing the moisture of the mucus as they are not very absorbent.  So more recently I've been using Tampons which work much better.  

As for the pain and the sensation of wanting to go for a crap. I now just think (maybe even know) that it is the 'sensation' of the anal plug rather than any real build-up of mucus or other substance.  It therefore doesn't bother me quite so much.

However, I do have a slight problem in that at times when I go for a pee whilst standing up I get considerably more pain and it pushes the Tampon out.

  I therefore reason that the painful sensation might be due to the pressure from the full bladder, coupled with it setting off some peristalsis in the anus.

My reasoning might be all a load of crap - but it gives me some comfort to 'believe' that I have it figured out even if there's not much more I can do about it.

Best wishes

Bill

I had surgery 13 years ago and the rectum was removed at that time. I was plagued with the phantom rectum experience and still have that strange feeling from time to time. Whenever I have that phantom feeling - it makes me cry. I really don't think it is purely an emotional response but I can't explain what I mean. Has anyone had any similar crying experiences like this?

JGhandiman, I have issues with wanting to sit but not as often as you, it sounds like. I have gout and was going to post on the forum to see if anyone else has this problem. I had the gout under control for years just by staying hydrated, but now that is a lot harder to do as you know. I get it in my ankles and I get laid up pretty good. I just got over a bout with the gout demon. The shit hurts but you have to get up and go where you need. I got a cane and hobbled around.

Hey guys, I'm going to see Total Recall, let you know what I thought of it.

I'm new to this and don't know much, but I thought my nurse said the part connected to my anus would slough off and I would have to go every couple of weeks to a month. I have gone a few times and there was a whitish mucus plug. They gave me a Fleet enema before my last scan and surgery. I would think it would depend on where the colon is disconnected. I was worried that my butt muscles would forget how to poop.

Hello Guest,

I don't cry but it does bring a tear to my eye occasionally.

I try to fart even though I am sewn up down there! I swear it might just seep out of some magic tiny holes. I hate it. Chocolate and coffee does it to me. My pouch is internal though so I sometimes think it is due to being full and some gas causing it. But now that I read your thread, who knows!

I, too, have had this pain... I sit on a "do-nut" cushion and get on with it. Sometimes (after over 3 years) I wake up feeling that I have to "GO". You are not alone!! Julie