Managing Ileostomy: Tips for Diet and Medication?

I currently have an ileo-anal anastomosis and will be having elective permanent ileostomy on Oct 26. I had a temporary ileostomy back when I had my first surgery 30 years ago. I remember how liberating it was after 3 years of full-flaring UC. I look forward to the full liberation again as I've suffered a very painful fistula for 29 of the 30 years. I've just borne the pain but now that the nest is empty, I'm finally taking care of myself.

My question is, will I need to alter my eating habits and/or medicinal supplementation very much to manage gas and stool activity? I remember back 30 years ago that I didn't need to take lomotil or immodium and I did just fine. I don't want to have to start as I am very much against introducing any chemicals into my body unless I absolutely have to.

I currently have to use the bathroom 2-3 times after lunch and 2-3 times after dinner.

Thanks,

D

Hello Catwoman.

First of all, thanks for sharing your situation and I wish you well with your upcoming surgery.

If you are fortunate, then this time around should be no different to what you experienced lastg time. However, our bodies do change somewhat in 30 years  so who can tell what reactions may take place once the surgery is completed? I too do not like taking artificial medications and the immodium was far too much for me in pill form. However, when I switched to it in liquid form I could measure it out  more precisely with a small syringe to suit my ever-changing needs. Gradually I was able to wean myself off it altogether and I now don't need any medications. Mind you, a bottle and syringe still sit on the shelf in my wife's medicine cabinet just in case! Although it's probably way out of date by now. I tend to eat what I like, when I like and it doesn't make a lot of differrence one way or another. Each type of food was 'tested' individually in  the beginning to see if it would be a no-no but nothing seemed to upset me so I have a wide ranging diet (even though I'm vegetarian).

I hope everything works out well for you 

Best wishes

Bill

Hi Bill,

Thanks for your response. I'm so glad I found this site. As you can imagine, this type of networking was non-existent back in the 80s so I was pretty much on my own.

Regarding the output, do you ever come close to accidents overnight? That's what I'm most afraid of.

Thanks,

CW

Hello Catwoman. 

It depends on what you would describe as an 'accident'. In the past I have had unwanted output at nights and some of it has embarrassingly leaked. However, I found that if I leave my own large bag on(which is held against my skin with elastic belts)then I don't have a problem with leaking.

Also, I have a colostomy and irrigate so any output at nights is almost always liquidand needs a reasonably large bag to contain it. This is achieved by using an irrigation sleeve folded up to act as a bag. The other thing with regards to sleeping is that I sleep on my back with a 'V' shaped bed which means I cannot roll about even if I wanted to. This helps in that any outut is not squashed whilst it's in the bag.

I hope this rendition doesn't put you off as I have no problems at all with my management of the stoma and I have no problems during the day either. 

Best wishes

Bill

Hi Catwoman,

First, I want to wish you the best with your upcoming surgery, and I commend you on your promise to take care of yourself because that is the first step in healing. I find that the advice given on this site is always excellent and helpful, but keep in mind that everyone is different. I have never had to take any medications to control my output, but after my surgery (12 years ago), I slowly introduced fiber to my diet. I eat a great deal of vegetables and other fibers, and they keep my output pretty solid. Remember, I introduced them slowly during the first two years post-surgery, and if it bothers you, don't eat it.

Best wishes.

MarVee

Hi Catwoman,

Welcome to MAO. I have a colostomy, but it seems we all have the same concerns. Leakage can be a hassle, but once you find the right pouch setup, you are more than likely going to be good. Blockages can also be an issue, so remember to keep a food diary and chew, chew, chew.

Best wishes in your recovery, and remember to take it one day or one hour at a time. It takes some time for our bodies to heal from such things, but it will.

Thanks to you all for your advice. I've had the surgery and am home recovering. The great thing about the type of surgery I had is that the output is the same as it always was, it's just going into a bag instead of through my anastomosis. I'm being very cautious with re-introducing foods back in as the stoma is different from the anastomosis, I can't "push" to make it come out. But so far so good! I hope one day to be able to eat popcorn again. I have bought a Vitamix so I look forward to getting my veggies, to include the skins, in liquid form.

I had one major blowout in the middle of the night and it was a nightmare. I've since had one small leak (last night) around 12:30 am. Funny how it's always in the wee hours of the night and not during the day! I've ordered a better option, I think, in a raised wafer as my stoma seems pretty close to being flush to my stomach.

I'll keep everyone updated as to my progress. I was pretty discouraged after the first blowout but my confidence level is building and I'm getting used to the mechanics of everything necessary to change the appliance.

Oh, by the way, I'm also dealing with my incision busting open. I have to pack it twice a day and it's a little scary having it so close to my stoma.

Cheers!

CW

Well, Catwoman,

Sounds to me like you're doing quite well. Keep up the good attitude and yes, keep us posted on your recovery.