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update on my hubby's ileostomy and diet question

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Posted 11/4/2011 8:18 PM (GMT 0)
He is 4 days post op. The first 3 days were rough...he was in so much pain. He had an epidural for his 9 hour surgery..but the epi didn't work properly so when he came out of surgery, he was in so much pain that he was in the recovery room without access to any visitors for 3 hours. Finally, I had to ask why I wasn't able to see him. Yesterday, finally he was able to get up a few times and walk. Today he is so much better!

So colon, rectum is out and no disease in the small intestines right now. So, I know that with Crohns, it can always come back. So, I want to make sure we do what we can to give him the best chance. We've been on a gluten, lactose free diet and it has helped tremendously before the surgery. So for those who have had an ileostomy, do you still stick to a gluten free/lactose free diet to for your Crohns? I'm scared that if he goes back to eating wheat, sugar etc, his Crohns have a better chance of appearing. Am I being paranoid??

Stoma looks great and incisions are healing nicely!

Thanks for all your support and prayers for his surgery. You guys always have the best answers and support!
Posted 11/4/2011 10:35 PM (GMT 0)
I do not have Crohns, I had UC, but I am a 22 year old male and I just had my colon removed 3 weeks ago. I would suggest staying away from the wheat atleast for the first few months as the fiber will probably not like the ileo or vice versa. Im sorry I cant really help with the Crohns diet I just wanted to let you know of the wheat! Hope he recovers great!! If he is anything like me after 3 weeks he should be feeling much better! Good Luck!
Posted 11/4/2011 11:17 PM (GMT 0)
I was on gluten/lactose free before my surgery, and I'm not now -- one of the benefits of surgery! I haven't been able to eat straight out milk things -- glass of milk, cream soup etc -- since I was a kid, so haven't tried them, but up until a few years before my surgery, I could eat cheese, yogurt, ice cream etc, but then they just created too much gas and urgency, same with wheat.

Now I'm eating crackers, cheese, ice cream, yogurt, regular bread, ravioli, etc..... no problem... maybe a little gassy, but it doesn't matter.

You'll want to be careful with fiber for the first six weeks or so -- so no whole grain bread, but saltines or white bread/bagels, and pasta were fine for me.

Of course depends on why you have the diet.... if he also has celiac or is seriously lactose intolerant, independent of crohn's, well then it probably won't change....

Glad he's doing better. I had trouble w/my epidural in that it paralyzed one of my legs, so they took it out pretty early.... but I think my pain was controlled better. Must have been hard for you to have to wait.

Hope things continue to improve and you get home soon!
Posted 11/5/2011 12:36 AM (GMT 0)
Thanks for the feedback! He doesn't have major intolerance, but for the last year, his CD was so bad, we tried everything and noticed that going gluten free, reduced sugar and very low wheat diet helped his symptoms. But then again, after having surgery it would be great if he can enjoy eating again..you know? But not if it will cause his symptoms to come back.

If its cooked veggies, is it okay?
Posted 11/5/2011 3:17 AM (GMT 0)
I don't have Chrones or any GI disease I have my ileostomy due to severe adhesions formed in a pelvic prolapse surgery that on review did not need to be done. Had to look a whole year to find a doc to take down the adhesions off my small intestine and do an ileostomy due to irreparable damage to my rectum and colon by the prolapse surgeons.

I find that even very well cooked veggies put through a pureeing blender are still too fibrous for my stoma which works fine with other foods. I just have to stear clear of veggies and get all those vitamins from Centrum liquid. This is just me. OThers will chime in that they eat anything they want. Even baby food veggies still have the fiber in them. We are all different and come to stoma-land for so many different reasons that one man's food is another man's poison so to speak.

I eat scrambled eggs and egg whites, white bread sparingly, yogurt with protein powder, pudding, ice cream, and any liquid I want except caffeine or soda or alcohol. I take a LOT of supplements. When my stoma was new 4 years ago I could eat virtually anything I wanted without a food blockage, but no more. Had two serious ones on mashed potato. Image scans have shown my small intestine and the stoma are totally wide open with no narrowings. Go figure.

Good luck to your hubby. Rosemary
Posted 11/5/2011 11:49 PM (GMT 0)
I can eat raw veggies now -- I'm just careful about quantity. I have been careful with very stringy things -- bean sprouts, celery, bamboo shoots, etc. I also watch the quantity on mushrooms, as they are hard to chew well.

For the first few weeks, I was fine with cooked squash, carrots, potatoes, sweet potatoes (white and orange, basically). I was told not to eat anything green. Cooked fruits without seeds and bananas were OK too. After that, I introduced things a bit at a time, and I've been fine.... as some people here know, I accidentally swallowed a bay leaf at a restaurant, and it came out whole, no issues.

I was the same about cutting out the gluten and lactose.... symptoms were clearly worse w/them when the crohn's got bad, but I'm fine eating them now.... just had a calzone with peppers, eggplant, spinach and feta cheese for dinner...... it was good! Oh, I eat chocolate now too (but not right away after surgery).

Just chew, chew, chew, especially at first, and later when you can add foods, go slowly and test them out....
Posted 11/6/2011 12:02 AM (GMT 0)
That sounds great! My hubby came home today and has been eating a home made chicken soup I made. He's happy to be home and our daughter was so excited to see her papa! She's only 14 months old and she's been hugging his chair and saying "papa" while he's been in the hospital.

Blueglass-calzone sounds yummy! Gosh haven't had a calzone in ages! Just excited to start living and being to enjoy my husband!
Posted 11/6/2011 12:10 AM (GMT 0)
Stay on a gluten and lactose free diet, hell no. The only things I avoid now are mushrrooms and that's cause I have a stricture narrowed area still in small bowel caused by scar tissue from too many surgeries to remember and they can get stuck there if I'm not careful.

Once he's fully recovered gradually introduce small amounts of these foods and he'll soon be revelling in delight at being able to eat foods he hasn't for so long.

Glad he's doing well, just make sure he keeps up with his maintainence meds as he has CD and need to keep it in remission now, don't stop taking them and if your GI says to stop them question why as CD can continue to be active in micro phase and not show symptoms for a while so better to keep the darn thing under control.
Posted 11/6/2011 3:10 AM (GMT 0)
i think go back to a regular diet too! try a small amount at first. Wait until the initial healing time is up, then start the dairy and wheat slowly. maybe even just a bite of yogurt, see what happens. it would be best to stay away from breads with sesame seeds, as they come out as they went in and it's rather gross, lol.
I think he should avoid even the cooked veggies for right now. They are just kind of hard to digest, and might cause a lot of gas, and the gas is bad enough at first.
Posted 11/6/2011 9:06 AM (GMT 0)
I have Crohn's colitis since 10yrs and have been lactose free for most of that time. about 1 yr ago i started to have a bad flare with anal fissures which refused to heal despite being on humira. In july i had surgery to have a loop ileostomy to tempoarily disfunction my colon. As my stoma
was active from the start, i was allowed soft food, rice crispies and soup, the day after surgery. It took me a while getting my appetite, but i had normal milk straight away and ice cream never tasted so good. I didn't follow any special diet to introduce new foods, i just ate what i like and not always remebering that i should chew more. In the beginning i experimented a bit with the foods listed on my diet sheet to decrease/increase output, to see what the effects are. Only thing i had trouble is wholemeal breads and bran cereals which can cause output to pancake on top of my stoma, which caused my only leak so far. So if I have these foods now i make sure i drink a lot.
I don't know if your husband's crohn's was limited to the colon, if yes he shouldbe ok with milk and dairy.
Posted 11/7/2011 2:46 AM (GMT 0)
That sounds great! He's going to love being able to eat again!!
Posted 11/7/2011 3:27 AM (GMT 0)
Sorry to hear that your husband was in so much pain and glad he is feeling better.

I stick to a gluten-free diet after surgery, but that is just because I have a blood-test-confirmed gluten intolerance. My body builds up antibodies when I ingest it. I don't eat it just so I don't develop any weird illnesses from it down the line. Interesting thing is, going on a strict gluten-free diet for the past 5 years did nothing to resolve my UC symptoms.
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