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Crohn's Disease w/ Ileostomy and getting discouraged...just need to talk

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Old 04-13-2010, 10:37 PM   #1
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Default Crohn's Disease w/ Ileostomy and getting discouraged...just need to talk

I've had Crohn's Disease for 9yrs. In Feb. of 2009 I had to have an ileostomy surgery because I was so ill. It was BAD. I weighed about 129 the day of surgery but I felt miserable because I was only that weight because I couldn't keep anything in me. I was weak from constant dehydration and anemia. Anyway, long story short, since having the surgery and remicade infusions every 8 weeks, I feel tons better. So much better that I let myself gain 80lbs (i ate a lot of fast food) Now here lies the problem. There are certain foods that I'm supposed to avoid. (They could cause a blockage.) Some of those healthy like raw veggies, fruits w/ seeds, nuts, high fiber foods and I think thats mostly it. I'm getting discouraged because I want to eat better, fewer calories, etc. I don't even know what to eat to relplace those things. I've talked to my dr. and they say to exercise. Well I've started doing that but what about the eating part??? Is it possible to lose weight eating what I CAN eat and just limit my calories? I'm sorry this is so long. This has been bugging me. I'm having one of those "I wanna be normal days". I realize this is something I have to live with and I am truly thankful because the surgery pretty much saved my life. I just wanna be healthier now. It gets frustrating since I can't eat or diet like others. I feel like i'm on my own. Ok I'm done I'll shut up now.
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Old 04-14-2010, 12:09 AM   #2
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You can do this..there are plenty of fruits without or with removable seeds...and you can just cook any veggie until it is more tender than nec.
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Old 04-14-2010, 12:47 AM   #3
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Hi AmyLynn,

I'm sorry you've had such a rough time with your health - I'm so glad you've got a new lease on life. I've had an ileo for 23 years, so I do understand those "Geeez, I just want to be NORMAL!!" days. Do you have an ostomy system that's working well for you?

Re. foods - it takes some experimentation, and adding foods back slowly, but many people can eat fruit, veges, nuts, etc. with no problems. Some of the main problems that cause blockage are not chewing food well enough (you'll need to chew *really* well), not drinking enough water (ileostomates tend to get dehydrated easily, & food will not pass as easily when the person is dehydrated), and adhesions (i.e., scar tissue within the abdomen - this can cause the intestines to narrow in some place/s, making it hard for waste to pass). The actual foods themselves are not always the problem, so there's definitely hope :-)

Each time you introduce new food, you would have a small amount, chew very well, and drink plenty - then see how it goes (don't try anything else new then for a day or two). [But, if you think you DO have a blockage - e.g., pain, nausea, unusually thin or absent output, etc. - go to your doc or ER] You might find it's better for you to have pure nut butters rather than nuts, fresh fruit (some you might peel/de-seed) rather than dried, and cooked veges rather than raw. You might find some foods that don't suit you in any form. Then again, you might work your way up to eating everything you would like to eat!

Also, I don't know whether you're looking to cut the sodium in your diet, but please be Very Careful about that. While it's not good to have *too much*, ileostomates do need more than most people, because the colon (large intestine) is where most sodium & other electrolytes are absorbed, as well as most fluid. It's very easy to become dehydrated even when you're drinking plenty of water if your sodium intake drops too low. Talk that one over with your doc or dietitian.

There are some really great support forums around that you might check into. I can't post links, but you might try Googling "UOAA" for the largest online community that I know of. There's some great info & general cammeraderie (sp??) on UOAA & some other boards, & I know losing weight with an ostomy is something that's been discussed.

Whew...sorry, this wound up really long! I should mention that I'm not a health professional, & neither are the folks on the boards. It's always a good idea to talk with your doc or stomal therapist before you start trying new foods (since they know you're medical history & I/we don't)...but there's totally reason to have hope.

Drop me a PM if you ever want to talk privately (I rarely post, but I've been registered a long time, so I *think* I can PM). Take care.
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Old 04-14-2010, 08:25 AM   #4
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mescelestus-Thank you for the encouraging words.

TinSoldier-Thank you as well. Sometimes I feel like the "odd ball" if u will, having an ileostomy. It's so nice to hear from someone else w/ an ostomy. I will take it slowly and introduce foods one at a time. Even though it's been over a year since the surgery I still pretty much avoid everything that "might" cause a blockage. Just because i'm the type of person who feels (in regards to something bad) "if it might happen, it'll probably happen to me" lol. Now that I'm able I'm going to keep exercising and watching my calories. I want to look as good as I feel
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Old 04-14-2010, 09:36 PM   #5
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Hiya, AmyLynn -

Just had to say a massive HOORAY that you're feeling so much better than you did pre-ostomy :-)

Re. trying new foods, a couple of things I forgot to add - it's best to try new stuff when you don't have to go out, & of a morning. I'm sure you'll already have come across some foods that have the effect, but new stuff (esp. fruit & veg) can upset the stomach & it sucks to fill up & "spring a leak" when you're out or asleep. Lol, I know, way TMI - but true.

Also, things some folks don't think of that are usually ok but should be introduced slowly - the casing on sausages, wholegrain bread, dried fruit, & anything else such that has very high fibre content. Of course, maybe you're eating all this stuff fine already & I'm just blabbering on ;-)

Take care, & have fun experimenting!
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Old 04-30-2012, 02:59 PM   #6
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Hello ladies - I just did an Internet search for dieting with an ileostomy and found this discussion. I know this conversation took place a few years ago, I'm hoping that someone is still registered...

Similarly to AmyLynn76, I had the life saving surgery Sept 14, 1999. However, there has been limited food I'm not able to eat - pumpkin seeds with their shells being the big one that landed me in the hospital 6 weeks after my surgery (I was feeling SO good and it's one of my favorite treats ever!!). I have gained about 50 pounds in the last 4 years through a combination of extreme stress and unhappiness from a cheating husband and marriage that ended as well as returning to grad school and having limited time, money, and energy. I am graduating in a few weeks and now facing the weight. I am also facing an extreme difficulty losing this weight, I believe due to being older, as well as the surgery and my difficulty processing food like "normal" - I even tried a cleanse that didn't really work, and again I believe it to be due to how I process things differently.

I would LOVE to hear any information that you ladies found helpful with losing weight with an ostomy. Thank you!!!!!!

Last edited by JillyFay : 04-30-2012 at 03:00 PM. Reason: Missing information.
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Old 05-13-2012, 10:50 AM   #7
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JillyFay- I'm sorry to see that no one responded to your post. I had a colostomy in December 2011 and was able to have it reversed in June 2012. Peanuts were what got me in trouble, so no more nuts for me, even though the DR said the portion of my colon with diverticulitis was removed. I'm not taking any chances. I lost weight while I had my ostomy, mainly because I was nauseated from the surgery and had lost my appetite. Your best bet would be to see how much fruit and cooked veggies you can tolerate. They will have the lowest calorie counts, and since you have to chew your food very well you will naturally be eating more slowly, which make you feel full sooner. Exercise as tolerated. I had a problem with exercise when I had my ostomy because the exercise would get my system working and I had to keep stopping. LOL Very inconvenient. Good luck to you!
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Old 05-22-2012, 01:00 AM   #8
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Lots of HUGS for you! My mom has had an ileostomy due to Crohn's disease for over 25 years and I have seen her struggles. She is also very overweight and struggles with weight loss because of diet restrictions. I can tell you that cucumbers (1/2 of one) usually don't give her problems, she eats fruits & veggies in small amounts at different times of the day but still has to limit her portions of them... nuts are a problem for her too. When my mom decided to lose weight (which she has been off plan for a while) she just counted calories and ate what was ok for her while taking a multi-vitamin. I think with an Ileostomy and Crohn's that really is the best option and I KNOW it isn't easy. I think the food restrictions is what caused her to gain so much weight since she relies heavily on meat and carbs. So that is the best advice I have for you. Good luck, I know what an obstacle this medical condition can create.
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Old 05-22-2012, 01:04 AM   #9
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I should mention that after she had a revision about 5 years ago the frequency of her getting blockages decreased significantly! I should mention to her that she needs to drink more water because she also gets frequent kidney stones. HUGS to all
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