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How do you gain weight after an ileostomy?

Posted by whatnow2012, on Tue Sep 17, 2013 9:42 pm
Hi - I guess this is the correct forum to ask post this.  My husband has bilateral nephrostomies, a urostomy, and now an ileostomy. He hates Ensure, Boost, Special K breakfast drink, and Carnation Instant Breakfast. I've mixed them with ice cream and fruit and he just can't take stand the taste of them anymore. I've been trying to get him to drink two or three milkshakes each day - today was whole milk, vanilla ice cream, powdered milk, three mini 3 Musketeers bars, and 3 tbsp peanut butter. He liked it, but it's only a matter of time before he gives me a hard time about that too. I'm assuming some of you have been in the same situation where the weight falls off quickly but how have you managed to gain again and how long did it take you? I can't get him to do much of anything physical at all and I understand he's weak and tired but how do I help him?

Thanks to all
Reply by ron in mich, on Tue Sep 17, 2013 10:58 pm
hi whatnow when i had my surgery an ileo. i ate a lot of pasta with meat sauce, in the morning i ate oatmeal with toast and peanut butter also applesauce with the oatmeal it helped thicken my output, i got sick of ensure and malts to, you might try smoothies using his favorite fruits.  good luck ron in mich.
Reply by jenepooh, on Tue Sep 17, 2013 11:41 pm
Hi whatnow2012!

I'm sorry that you guys are dealing with rough times, but it does get better. I have an ileostomy and I can eat almost anything except for raw food and some other things... Ensure is a great way to help keep weight steady and maybe help add a few pounds here and there, but he should be able to eat other things. Like Ron in Mich stated, he had pasta with meat sauce, etc. I do, too. My noodles have to be completely cooked... not to the point of mushy necessarily, but definitely not al dente'. I have to keep hydrated too while eating and throughout the day... definitely helps making sure that things are moving like they should. Smoothies are good and can be made in any way. Applesauce is a best friend for sure for us. Wink Other things, too... kind of have to play around with it a bit to get a feel for how his body will respond.

Please let us know how it's going and any other questions, feel free to ask or talk to his Ostomy Nurse if he has one. It's not the end of the world and we're definitely here to help and support you both. (hugs)

Take care and God Bless!

-Jen Smile
Reply by MissMeganM, on Wed Sep 18, 2013 8:26 am
Hi whatnow, I had the same problem as your hubby after my surgery - I'm 5'7" and at my lowest I weighed 98 pounds.  A skeleton!  What I did to gain weight (because I too detest Boost and Ensure and all that grossness) is ate a diet high in protein.  I also added protein bars (the Met-RX) ones, protein shakes, and covered everything I ate in cream cheese, LOL.  Its been a year since my surgery and I have gained about 40 pounds.  It comes on slowly, but gradually he WILL fill back out, I promise
Reply by gutenberg, on Wed Sep 18, 2013 11:37 am
not sure if I can be of any help but I remember those drinks my wife bought for me and after about a half a can I said no more of this sh** and every time she left the house another can went down the sink. But I had lost a lot of weight and tried everything I could think of and after nine years the pounds started coming back on. The only things I could attribute this too was I always had a bowl of oatmeal, porridge, with brown sugar and 18% coffee cream, it was fast and easy to make. Next I got into stir fry with lots of onions, red, yellow and green peppers, lots of mushrooms and diced chicken, and at the same time I would make chicken fried rice with finely chopped peppers and onions and chicken with a little soya sauce and always made enough for a couple of days. I could eat this at supper and again around midnight have another dish, bless those microwaves, and a glass of milk with each meal. I had finally found something that I LOVED to eat, and in the last few years I went from 119 lbs to 155. Then a few months back I got sick and in twenty days lost 20lbs again but in the last few weeks I managed to reach the 150lb mark. I have an idea that all the onions were the biggest help as they have a lot of the same properties as Garlic, which I don't like, unless my daughter is doing the cooking and manages to hide the taste and I can really pig out on a lot of those stir fry dishes and it would be unusual If I didn't have a midnight snack on the leftovers and even have a piece of pie and get a decent night's sleep. I realize that for an ostimate this eating at night is frowned on but I always awake around 3:30 and five thirty anyway to empty my pouch so the eating at night doesn't affect me in the least. I must admit, I have no idea if this is what helped me gain weight but if it didn't I really enjoyed eating this immensely. Hope somebody can find a few of these items to help them gain a bit of weight, all the best, fellow ostimates, and have a good day today and a better one tomorrow, Ed
Reply by whatnow2012, on Wed Sep 18, 2013 11:45 am
Thank you all! I can't tell you how encouraging each of your notes has been.  At what point were you able to start adding different foods? Especially the protein bars as I imagine they might be difficult to digest. I know the golden rule here is "chew chew chew drink drink drink" but my husband was always a VERY fast eater and never really drank much at all - like a camel! I've made him pastina, and creamy soups and I've even made him meatballs and cooked them until they're really soft.

I understand that this will take a while but I'm also wondering how much of what each of you went thru did you have to do on your own. I change the dressing on all four bags and flush the tubes on the nephrostomies when they need it. He has very high output from his ileostomy so we use a urostomy bag and attach it to an overnight bag so I empty and clean that about 4 times a day. He also had an abscess from a necrotic tumor with bladder cancer (he had a radical cystectomy in February) so he has an open wound in his abdomen that is healing but I change the dressing on that as well. He gets a Lovenox shot every day for the next few months because they found a clot in his leg during surgery so I give him that. He's also getting 1000cc of hydration twice a day and 1600cc of TPN every day. I flush those tubes before and after each infusion and connect/disconnect him from everything throughout the day. I have it scheduled so he has several hours during the day when the only thing he's connected to is the overnight bag for the ileostomy. During the day he empties his urostomy and nephrostomy bags but I do it at night.

We have no small children but I do have a full time job working from home about 14 hours/day. All I want him to do is eat slowly, chew, chew, chew, drink, drink, drink and move around a bit. However, he goes from the bed to the chair to another chair and back to bed with the occasional trips to the bathroom to empty his bags. Did each of you go thru this and was there someone there to help you? I've always been the positive one and I'm in it for the long haul but it's frustrating trying to find ways to motivate him. I want him to wake up excited for a new, beautiful day and be thankful for it. This is his favorite time of the year and we're missing it all. I can't even get him motivated enough to go sit out on the deck for a little while. I did mention that I might need to work with a counselor or join a support group at some point just so I could understand everything a little better but I got a snicker out of that so I'm putting it on the back burner. Hence, my long diatribe here - hopefully none of you will send me a bill

Thank you all for listening and I look forward to any suggestions you might have to help us get thru this.

Prayers,
Anna
Reply by gutenberg, on Wed Sep 18, 2013 12:41 pm
Whatnow 2012: Lady you deserve a medal for the way you take care of your husband, after reading so many stories on here about people getting divorced just because they couldn't handle one bag and so I congratulate you. I'm also a fast eater, have been all my life and when a local doctor fixed my intestines so I had no more blockages I don't even chew that much, especially if its something I like, take care and best of luck, Ed
Reply by whatnow2012, on Wed Sep 18, 2013 1:00 pm
Hi Ed,
How did they fix your intestines? My husband was in the hospital for two weeks at the beginning of August with a distended abdomen and they found that his small intestine had swollen to three inches. Sounds horrible but he has a very high pain tolerance so because of that whenever something is wrong it's always a bigger issue than it could have been. He came home for two weeks and was back in for another two weeks with the same problem and that's when he got the ileostomy. I love passing on encouraging words to him in the hopes that something will sink in and motivate him so I really appreciate the help each of you have been giving me

Prayers,
Anna
Reply by gutenberg, on Wed Sep 18, 2013 1:28 pm
Hi Anna, I'm sorry I can't fully answer your question but we'll give it a try. After having many blockages, much more painful than the operations themselves, one of the local surgeons told me he could fix this problem for me and I said to go for it. From what I gather what he told my family he removed most of my ilium and replaced it so it would not get kinks and cause blockages, and it was a complete success, never had a blockage since.
With all the surgeries I've had in the past and the screw-ups I encountered I only wish he had done those operations, he certainly couldn't have done worse. Someday I'll get a copy of that operation he did and be able to give a better answer, Take care, Ed
Reply by whatnow2012, on Wed Sep 18, 2013 1:33 pm
Thanks very much Ed.  I'd be interested in knowing what was done just in case it's something that can help my husband.

And in response to your comment about me deserving a medal for doing so much for my husband, none of this is his fault and I couldn't imagine myself not doing everything I could to help him thru this.  On the other hand, if he were to cheat on me I wouldn't even wait for the ink to dry on the divorce papers and I'd be gone in a shot Smile

Prayers,
Anna
Reply by whatnow2012, on Wed Sep 18, 2013 3:12 pm
Hi Jen - How long was it before you started eating regular food? Did you have to wait for approval from your doctor or did you just gradually move from liquids to semi-solid and then up from there?

Prayers,
Anna
Reply by whatnow2012, on Wed Sep 18, 2013 3:14 pm
Hi MissMeganM - How long was it before you started eating regular food? Did you have to wait for approval from your doctor or did you just gradually move from liquids to semi-solid and then up from there? I asked Jen the same question. I'm not sure how this forum submits replies so I apologize for a duplicate.

Prayers,
Anna
Reply by MissMeganM, on Wed Sep 18, 2013 3:37 pm
I was eating regular food when I was still in the hospital....they let me eat after my NG tube came out.  For the first couple days after the NG tube was out I drank broth and juice and ate sherbet and yogurt.  At first I was really paranoid to eat because I was afraid to get blockages, but I found out that I didn't need to be as worried about it as I was.  You are right when you say CHEW and DRINK, and if you have any doubts about whether or not you can handle a food, all you do is eat a little bit of it and wait for it to come out and see what it looks like.  I stay away from the big no-nos - like I don't eat raw celery, I don't eat mushrooms or corn on the cob, nuts, or popcorn - but I eat everything else.   He would want to stay on a low residue diet for several weeks following ileostomy surgery, but after that he should be fine (unless the doc says otherwise).

I can tell you that chair to bathroom to chair is pretty average for activity after this kind of surgery.  I'm relatively young - I was 35 when it happened - and I was wiped for a couple months.  I had help daily in the beginning, because I have 3 children and I could not care for them.  I couldn't clean the house or wash their clothes or cook their meals.  After 3 or 4 weeks, I could do light housekeeping and make grilled cheese and soup, and it got better from there.  After being home for a month was when I first left the house to go pick up a few groceries and after only a half hour of driving that wheelchair cart around I was so fatigued I couldn't do anything the next day.  

I went back to work 8 weeks after my surgery.  I was pretty weak and still really thin then, but I have a sit-down job so it worked out, lol.  I recovered over the winter and this summer I went to the beach and swimming with the kids almost every weekend, took my kayak out (by myself!) and went wilderness camping
Reply by whatnow2012, on Wed Sep 18, 2013 11:19 pm
Thank you very much MissMeganM - I feel better about the activity level now. I'm impressed with how quickly you rebounded after your surgery.  After my hubby had his bladder removed he spent about 22 hours a day horizontal. It was very difficult for him but little by little his energy returned although definitely not 100%. Then before we knew it he needed radiation and chemo so that sapped him again. He was starting to feel better and now this. I just keep hoping and praying he starts to gain weight soon because I know it will not only improve his physical health but his mental well-being as well.

Prayers,
Anna
Reply by MissMeganM, on Thu Sep 19, 2013 9:32 am
You're welcome Anna   It takes awhile; but his strength will start to creep back slowly.  The most important thing is to not overdo it and make sure you're taking all your vitamins, medications that were prescribed, resting, and getting adequate electrolyte intake.  For me, I couldn't get better fast enough.  I remember being home for not even a week when my youngest had come down with bronchitis (she was 4).  She coughed so hard she threw up in the hallway and I wanted to jump up and go to her and take care of her and I couldn't.  I just sat there and bawled in frustration and helplessness while her father tended to her.  It was the worst feeling.  So I understand how frustrating it is to not be able to do the things you want to do.  But if he's patient, it will come in time
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