Hi all,

I need some help. I had a colectomy/ileostomy, Step 1 of 3 j-pouch surgery July/06 after 16 yrs of UC. I still have my rectum. Now I am wondering whether I should continue with the next 2 surgeries. It upsets me that I may be stuck with the bag forever. I am lactose intolerant and have numerous food intolerances, including gluten, grains, eggs, raw foods, fruit (except small amounts of banana & applesauce), drinks (except water). My diet seems to consist of a dozen foods, meat, buffalo, poultry, fish and a few well cooked veggies and is very restrictive - quite similar to when I had UC. These foods do thicken my output, otherwise most foods cause watery output quickly. I take 1 Immodium every night.

I’ve heard digestive enzymes may help with food sensitivities. But, can digestive enzymes still be effective when I must have water with my food because of the ileostomy?

How can I tell if the food intolerances are the problem or if this is the way my ileostomy is supposed to behave? If I have all these problems with the food I am questioning whether the j-pouch is for me. I know I have to see my surgeon but in the meantime I am trying to sort out the food issues. I have numerous other medical issues, thyroid, hormonal problems, severe insomnia. My adrenals are finally doing better after years on prednisone.

You’ve all helped me so much during the past couple of years. The white grape juice tip saved me 2 trips to the ER. Thanks so much.

Right now if I have something that doesn’t agree with me I usually don’t have pain and it goes in the bag. If I have the j-pouch, won’t it be just like living with UC again – looking for bathrooms, sense of urgency, hemorrhoids, sore bottom etc. if I have all these food issues? Sorry this is so long.

Any input greatly appreciated.

Shelley

If the end of end of your small intestine is your stoma, then all you eat is currently comming into contact with the same portion of intestine that would be used to construct the pouch ... I don't know why things would get worse than they are now????? If that is the case, I would be trying the pouch to rid myself of the bag... and if things don't work out...the worst thing that can happen is to go back to the bag...which you would have anyways, if you chose not to try the internal pouch.

With the j-pouch, at least for the "adjustment" period - you will be looking for bathrooms, have urgency, hemorrhoids, sore bottom, etc. That will happen with our without the food issues. So if you are averse to these for even a short period of time (as compared to life right now with the ostomy), stick with the ostomy.

Things do digest and come out differently with the j-pouch than with the ostomy. So - yes, in some ways it is easier.

However, if you have an awesome experience you may find that things get much better than you ever thought they could.

Jim123
Thank you for making things so clear. You are right. I will have to at least try to get rid of the bag. That was my plan from the beginning but I got sidetracked. I am much healthier now than I was at Step 1 and know what it's like to live with an ostomy so if it doesn't work out it's not the end of the world.


Elmer
I have no problem going through the adjustment period with a j-pouch and with all the info/tips I've gathered here I know I can do it. I guess my concern is wondering down the road if my food issues will cause a sense of urgency on a regular basis where I need to find a washroom NOW. Jan has helped me understand my food issues may not be true intolerances. I don't have cramps, gas, etc. I'm going to try and go for that 'awesome experience' you mention. Thanks for the encouragement.

Shelley

Shelley,

I'm glad you are going to go for it. Keep us posted if you have questions along the way.