Clarification?

Hi folks- so lately I've been reading the posts, thinking, & I'm a little freaked out. It seems like there are a lot of problems lately- Cecilia in the hospital with the kink/blockage, Jan with the dehydration issues. My surgeon told me that there are no dietary restrictions with an ileostomy- yet others on here say "No, you do have to be very aware of what you eat, what slows down or speeds up output." The thought of eating without worrying about the repercussions is a big factor in my decision to have surgery. I guess I'm just worried about opening myself up to a whole host of other possible medical complications. What are the chances that one will have these problems? And overall, do you find your ileostomy to have complicated your life or made it easier, day to day? Do you really have to police what you eat or drink to make sure you stay well? The doctors tell me it's all good, that it's a cure for UC... but is the cure possibly worse than the disease? I can't believe that.....Please help! Thanks!

Yeah, it's kinda like being "normal" in a way - People without Ostomies, without UC, with Crohn's - they can even have foods that bug them. When I had UC pretty much EVERYTHING was an issue. No only a couple things are: Orange fibers, and popcorn. I perosonally think that GREAT. A lot of "normal" people can't east one or two things, so I'm even with them, right?
Let me tell you, as far as I am concerned, even with the couple of little issues, life is WAAAAAAAY better with my ostomy. A gazillion times over. The issues I have had are absolutely trivial compared to what UC did to me. Now, this of course is my personal experience, but I think many share my opinion.
I do not watch what I eat. At all. I just don't eat orange fibers or popcorn. Other than that I eat and rink to my heart's content. And remember, some people who watch their diets more closely may have Crohn's, and an osotmy is NOt a cure for that, so they may continue to have problems. Same for people with constipation.
The day to day workings of the osotomy take getting used to, but then they too become just a part of your routine. You're a girl - I compare it to this. You have a routine you go through with your period. It may not be fun, and it may not be pleasant, but after the first few times dealing with it, you get used to it, you use what types of products work for you, and pretty soon dealing with it is just routine. That's what the bag is like.

Eva,

I think Sue made an excellent point -- keep things in perspective. Most of the folks that already have ostomies and are doing well and don't have any problems or questions are probably not visiting this Ostomies forum. So you are hearing "stuff" from those of us that are having or have had appliance issues or surgical issues or even food issues, any questions at all. All very good topics that someone else here most likely has an opinion or answer to.

Yeh, I agree that this ostomy I have now is truly a blessing and I would not even think about going back to my life PRE ostomy. I had CD, and had several surgeries for resections and even a temp ileo. And that in itself can cause adhesions. Everyone who has any type of surgery, as I understand it, is susceptible to adhesions. It is just scar tissue. Sometimes, scar tissue can cause problems. There are no explanations for who, why, where.... I'm sure if those of us that have had a "kink" in our intestine or problems with blockages due to scar tissue could change our life or diet or whatever to avoid it, we sure would. We are just the lucky chosen few!!!

I have met so many nice people on this forum who have so many good questions. If anything I have experienced in my past can help anyone else, I want to share --- just an awareness thing. That is not saying that it will happen to you. I didn't have such a wonderful group or knowledge base to pull from when I experienced some really scarey things for me right after I had ostomy surgery. I had to call my surgeon's office, TRY to get a return call from a nurse to get my answers. You all know about that. How nice this website would have been for me then. And, I didn't take the initiative to do much research about an ileostomy or anything related to the surgery or appliances prior to my permenant ileo surgery. At that time, I was young and guess that it wouldn't matter if I knew about it or not - I was still eventually going to have to have it done permanently. I guess I just was being an ostrich with my head stuck in the sand!! Didn't work at all for me! lol

Sorry for rambling. I just hope that I haven't scared anyone needlessly. That certainly has never been my intention.

Really you just have to be on a low residue diet for the first couple weeks after surgery and slowly add foods to figure out how well you can tolerate. Even if a food upsets you right away it doesn't mean that it always will, just try again later. I eat just about anything, the main thing to stress is to chew your food well. As for the hydration, drinking water is important as we no longer have a colon to absorb the water, but the issues that Jan is dealing with is an exception rather than the norm. People without UC or CD can get blockages, kidney stones etc.

Are you having a perm ileostomy or a pouch created?

My first surgery went well and the ileostomy/stoma gave me no problems, no leaks and I truly felt better without the nasty medicines I was taking before and was able to gain back 20 lbs out of the 30 I had lost in 5 months. It is what most have with a permanent ileostomy.

The second surgery in creating the pouch, I now have a loop ileostomy which is a little harder to manage, but I still work and eat everything that I did before, just have to snack on more pretzels when I drink because the ileostomy is higher up in the small intestines.

Each surgery/step has a risk or obstacle to overcome and although I don't think I can ever say that I'm glad that I had the surgery, (I wish I never had the disease to begin with) I am glad that we have the options that we do in order to save our lives. Because that's what the surgery did for me. The cure doesn't even come close to being as bad as the disease.

it is much easier than you think it is, once you get it and start using the bags and all, after not too long, it will become second natre, and a good bit of hte time you won't even remember it's there. As for food, i eat whatever, i just chew everything good, and with things like oranges i spit out the fibery parts. You may find that there are some foods that can give you more gas, that's something you just have to figure out if you want to deal with the gas, or just not eat the food.

Praying,

I think what Theresa meant by a little harder to manage is that since the ileostomy is formed from intestine a little higher up in the tract that her output may be a little more watery, hence a higher risk of dehydration which is why she probably has to snack on pretzels and such to increase her sodium and help to firm up her output.  Is that right, tbraz?  Just taking a stab at it....

I do not have a loop ileostomy but since I have had several feet of small intestine removed, I am nodding in agreement with Theresa.  But, I have learned to manage it and it just becomes second nature.  It's been so long for me now (24 yrs in July) and I was so sick before surgery, I can't even remember what healthy was PRE ileostomy!!  (Wow, that's a lightbulb moment for me!) 

Different foods do thicken my output up and I try to pay attention and use them to my benefit.  It not only makes bathroom trips fewer, but it also allows my body to absorb more nutrients and fluids, etc from my food.  And, it doesn't stop me from doing anything that I want to do usually, except I will have to admit that I was really uncomfortable with the thought of doing jury duty ---