Questions about ileostomy experiences and concerns - seeking advice and support

Hi all, I am fairly new to this and have learned a lot reading through the forums. I am so glad everyone is so open with their questions and answers - it makes me feel a little less stupid.
Anyway, I have a few questions....but first a quick summary:
I have an ileostomy as a result of having my bowel "nicked" during surgery (hysterectomy) in Sept 2009. I wasn't at all prepared for this and am still coming to terms with it.

Question 1.
During the first few weeks, I had a few very small, mucusy (sp?) bowel movements (i.e. via rectum). The nurses all said this was not unusual and that it would stop. Well, it did stop for a few months, but it happened again (along with a very tiny amount of gas). Is this normal? I had a lot of discomfort in the hours leading up to this phenomenon, but it subsided after the fact.

Question 2.
Does anyone sleep through the night? I am up at least twice every night to empty my bag. Only once have I had the bag explode on me in bed (what a night that was - lol), so I find myself waking up a lot just to check and/or empty my bag. Needless to say, I am tired.

Question 3.
Has anyone had a successful reversal? I saw my surgeon last week and have finally got a date with him in the OR for a "take down" on Feb 22nd. He told me that my CT scan showed I had developed adhesions, but he is fairly confident he will be able to deal with them and perform the reversal. I have heard many horror stories relating to reversals (loss of control, running to the bathroom 20 times a day or more, etc.). Has anyone got any good stories to share?

Question 4.
Does anyone have a list of safe foods? I have found that a lot of food either gives me a lot of gas or simply 'burns' as it passes into the bag. I avoid the standard "danger foods" (corn, greens, nuts, etc.), but I also found that sour cream and my ostomy do not see eye to eye.

I have more questions, but I'll see how we go with these ones first.
Thanks to everyone here for their advice, stories, and support!!

Lorraine

Hi Lorraine, I have an ileostomy also and I may be able to help.

Good luck, Lorraine. I hope everything goes well for you.

Steve

Hi Lorraine!

Q1:

Normal, as Steve says, may have occasional fecal staining also if you have a loop ileostomy as sometimes the loop gets bypassed.

Q2:

After 2 sleeping tablets, I either sleep like the proverbial log or cannot sleep at all and end up awake all night, but that is just me... You will be very lucky if you completely avoid the shit and shrapnel during the night, and as you have found out, it ain't pleasant, but generally I find I wake naturally if my bag is leaking, really full, or if I have a problem, despite my sedation.

Q3:

Dunno!

Q4:

I could eat most things at the beginning, nothing would really make much difference - however, at that point, I had nothing wrong with my bowel - as time has gone on, and my hernia has increased in size, and I have a lot of nausea, things aren't quite so easy.... I cannot eat corn, nuts, raw veggies, apple/pear, etc., and really need to chew things a little more than maybe I do.

You will be having your reversal on my birthday, so I will be remembering that! Good luck, Rachel xxx

Hi Lorraine,
I have a colostomy with no chance of reversal due to cancer, but early on I didn't sleep much worrying about exploding bags, smelly leaks, and other disasters.
I have had mine almost 15 months, so now I pretty much sleep through most of the night.
I did learn one very important thing....NEVER burp the bag when you are not sitting or standing upright. It could get very messy, but you probably won't do it a second time!!!
Good luck on your surgery on Monday.
Pat

Hi there, I too do not sleep very well at all anymore. I've had my ileostomy for about 15 months. I too had been hoping for the reversal operation, but at 55 was told I was too old for it to be successful. As it turned out, I had to have the rectum removed 7 months after the colon had been removed and because the rectum had deteriorated so much, I don't think the reversal would have worked. I have had many accidents with the pouch coming loose in the night and so I seem to wake every couple of hours to check my bag and empty it. I'm hoping that eventually the body adapts because I feel so tired all the time, I wonder if I'll ever have a good night's sleep again.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Kathleen - are you sure you are getting a correct fit around your stoma? I really don't think that having 'many' accidents at night should be happening, maybe you need to see if there is a better pouch out there for you - we all occasionally have accidents, but 'many' just doesn't seem right to me..... Rachel xx

Kathleen, is it the pouch or the wafer (sticky thing you adhere to your skin and attach the pouch to) that is coming loose?
After 15 months, your stoma may have changed size/shape as it healed, and you may need a different size wafer and pouch.
In the 15 months I have had mine, it has shrunk from 1 3/4 inches to 3/4 inch and is now retracted. I have had to change the product sizes 3 or 4 times so far. You may have the same situation.
Good luck, anyway. Pat

Thanks to everyone for their answers and advice. It's nice to know that I am "normal".
I am having a lot of trouble with pain and "burning" and can't figure out what it is. My regular diet consists of:

Coffee (morning only)
Tea in the afternoon
Chicken (baked)
Eggs
Bread (usually toasted)
Bacon sometimes
Potatoes (baked with a dob of butter - sour cream is BAD)
Water throughout the day

What could be causing the burning and gas? Does anyone have any tips on dealing with this burning?

Hi Lorraine, where are you going? Rachel xx

Hi Rachel,
My stoma has a burning sensation when it's moving. It's not all of the time, but often enough to drive me nuts. I've tried changing both the bag and the base; sometimes that helps but not always. When it is really bad, I have to take extra painkillers. I figure it's something I'm eating but I guess it may be something else.
The area around the stoma is good, the stoma itself is usually good (sometimes it bleeds from what looks like a little abrasion).
Any ideas?
Lorraine

Hi Kathleen53,
Have you tried using an ostomy support belt?
I use one at night. It gives extra support around the base plate and might help prevent leaks.

Maybe try cutting the hole in the base a little bigger. It might be rubbing on the stoma, causing you irritation.

Hi Lorraine,

Here's my 2 cents worth for some of your questions:

2) I take a sleeping med - helps me get to sleep but allows me to wake up easily if I have to. Since I had a zeppo (I swear it was seconds away from exploding) I now set my alarm for 3 am. I'm used to getting up once during the night anyways to pee. If it's before 3, I just turn the alarm off. I have no trouble getting back to sleep - so the alarm works well for me.

4) Having eliminated all the known "bad foods", I still periodically get the pain/burning like you describe (seems to be in the area just before the stool hits the stoma - the belly/stoma junction) and I'm thinking it must be food related too.

Haven't identified the actual culprit(s), but I know that pork isn't the best (even nice lean ground pork mixed with beef in a meatloaf or a skinless sausage roll). But I've had the sensation on days when pork hasn't been on the menu for awhile. Maybe the bacon is something you can try eliminating for a month or so. Have you tried eating plain yogurt? I find it seems to calm things down. Baked potato -- the skin is very hard to digest. I was told right from the beginning to not eat it for at least the first few months. Watch other 'skins' -- even the skin from grapes in fruit cocktail.

Take care!

Re: Burning ...
I get a burning feeling when I'm having a bowel movement. I think (?) it's the stool moving across a little bit of exposed skin around my stoma. I have a very retracted stoma so this can't be helped and is something I've learned to live with. I use a lot of stoma powder when I change bags and that has really made a huge difference.

Re: Leaking at night ...
I used to worry that I would roll onto my stomach, have a blow-out, etc. but none of that has ever happened, not even once. However, that being said, I do naturally wake up in the middle of every night to pee and I always vent my bag while in the bathroom, even if it's only the teeniest bit of air. If I'm really feeling lazy, I do it in bed but that sometimes wakes up my husband.

Re: Anal leakage ...
This shocked me too, at first. Nobody ever mentioned it as a possibility until I finally asked the ET nurse at my pharmacy. Previously, people kept telling me it was my bowels gradually being emptied after my initial surgery. Now that I know better, I realize that your body still creates an anal lubricant that would have previously served to help the stool move its way down the tunnel. Every single time I feel it coming on, I swear I'm going to have an old-fashioned bowel movement but of course, that's not the case. Amazing how a few drops of that goo feel like a bowel movement, isn't it?

Marie