How to gain weight after ileostomy?

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 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

Hi, what now? 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 helped thicken my output. I got sick of Ensure and malts too. You might try smoothies using his favorite fruits. Good luck, Ron in Michigan.

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. 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

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. It's 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.

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

Words of Encouragement from Ostomy Advocates I Hollister

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 through 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 through 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 through this.

Prayers,
Anna

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

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

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

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 through 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.

Prayers,
Anna

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

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

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 of 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.

Thank you very much, Miss Megan M - 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

You're welcome, Anna. It takes a while, 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, but 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.

Thanks MMM - What kind of vitamins do you take and how in the heck do they stay in your system? Don't they just come right out of your ileostomy? My husband was taking a lot of vitamins once we found out he had bladder cancer but he had to stop during chemo. I believe the vitamins had a lot to do with him rebounding in the past as quickly as he did. However, he hasn't been able to take anything and I don't even give him a multivitamin because they're so big I don't know if they'll have enough time to break down before getting washed into his stoma and then get stuck there! The only prescribed med is a blood thinner. Did your surgeon prescribe specific vitamins at your follow-up? We have an appointment tomorrow and he has chemo on Monday and I'm starting to panic at how this is going.

Thanks much and prayers,
Anna

Hi Anna, as for vitamins, I use chewable type or the gummy type, or the more expensive liquid which works great in the beginning when you need all the nutrition you can get.

Anna, I have to get vitamin B12 injections - I just can't absorb it through the small intestine anymore. I take a chewable multi and a regular iron supplement, and a vitamin D supplement that is a gelcap. The only medications you have to be careful with when it comes to an ileostomy are enteric coated meds (they come out whole, it's happened to me LOL) and time released meds. Otherwise, he should be fine.

Hi Megan, yeah didn't you hate to see those vitamins come out whole? For me, it was quite a while ago, but I thought, "What the hell am I taking these for?" But now there are chewables and gummies and such.

Hi folks, I had my surgeries in 2003 and it wasn't until about 18 months ago I started to put on a few pounds, went from 120 to 157 in a very short time, of course I had to be buying new pants every few months or so but it was worth it, now just to hang onto it. I never took any kind of supplements but still dont know the reason for the weight gain, so good luck to all, Ed

LOL Ron, the doc wanted me to take an aspirin a day and I told him the enteric coated aspirin he had ordered for me wasn't doing a damn thing. He asked me how I knew, lol. I said, because it's in my pouch every morning!!!! HAHA!

Hi MMM, I know what you mean, I was given a slow acting pain pill and used to see it in my pouch, it finally made sense to my doctor and no more of that crap. But to get back to the aspirin if it is really necessary for you, as it is for me, if you crush it up you will find the benefit, although you may not feel it but nevertheless it is normally good for you, ED

PS: warning, I just read you should NOT crush the enteric coated asprin

Thanks, Ed. I just started taking a chewable aspirin instead, and no more pouch pills. LOL

It didn't take me too long. I personally don't care for Ensure but one day I decided to freeze it and in no time flat I put all my weight back on and then some. Why freezing it changed the way it tastes I'm not sure, but I just sit there with a spoon and enjoy every moment of it. Try it. Hopefully it might work!

I hate all of those supplement drinks too! Yuck! I had a complete colectomy with ileostomy in 2010 and then my Crohn's got into my esophagus (which is very rare) and I had to have my esophagus removed in 2012. I had to wait a year before having reconstructive surgery this past spring so I was on a feeding tube that entire year--18 hours a day. Even with the feeding tube all those hours, I was only about 97 lbs. I looked awful so once I had reconstruction and could start eating again, I was anxious to gain weight but they stressed to me how important it was to make every bite count as far as nutrition was concerned. So I know where you're coming from! Since then I have managed to put on weight and I am now about 115, the most I have weighed in years. There's no real secret to it. I eat small meals every couple of hours. It's much easier to digest small amounts. I try to focus on protein and nutrient-rich foods but sometimes I just eat high-calorie foods like brownies and ice cream. One note though, dairy foods can be very hard to digest and it sounds like you are using a lot of milk-based products. Ensure is the only supplement I am aware of that is not milk-based and by making milkshakes out of them, you are adding even more dairy. It's high in calories and has lots of protein but personally my gut would be in knots if I drank that with any regularity. You don't have to be lactose intolerant to have trouble digesting dairy. It is difficult to digest all on its own. Your husband just needs to always be eating. And as far as vitamins with the ileostomy, it's also better to dose them multiple times a day. Not all of it will get digested but dosing 3 or 4 times a day will improve the amount that gets absorbed. If he has a real issue with malabsorption, he may have to go to injectables, but that would be his doctor's call. Hope this helps!

Hi Anna, I have had my ileostomy for 31 years now. I had my surgery when I was 16 hours old. I realize that age does affect a person's ability to recover quicker, but I wanted to share some knowledge I've acquired. I read earlier you were curious if a surgery some people were talking about to relieve blockages would help your husband. I had the procedure done 10 years ago. The surgeon actually takes the small intestine and removes any scar tissue that may be causing strictures (tightening) in the bowel. That is what causes a blockage to occur. When fibrous food is not chewed well, it can catch on that stricture and it becomes like a dam, keeping most everything from passing. This usually causes the bowel to start dumping large amounts of fluid through the ostomy in an attempt to push it through. I found this surgery worked for me for a few years, but because of the way my body heals and scars, I'm back with the same issue. Everyone heals differently, so it may work for most people. Also, I found if I ate things that had cheese in it, it really helped me with gaining weight. Also, I know Ensure tastes like a big vitamin, but if you get it really cold and add some ice and put it in a blender, it tastes a lot better. Try to stay away from caffeine since this stimulates the peristalsis (waves) in the bowel, which can cause diarrhea and shorten the amount of time nutrients can be absorbed. I have found diarrhea is hard to get under control with an ileostomy. Sounds like he is getting enough fluids from what you stated. 2000 cc total of saline and 1600 of TPN. I'm also wondering if maybe you are doing too much for him. Sometimes when we help others too much, they tend to not have a reason to not help themselves due to depression, etc. I work in the medical field and I see this a lot. You have the greatest intention, but it can actually hinder him. He should be able to empty his own bags and this may build some self-confidence. I know when I first had my surgery, I didn't want anything to do with it. It was so foreign and didn't feel like it was really a part of me, but my family had me do it myself and it gave me some pride that I could take care of myself. I hope I haven't insulted you, but just one person's view and I may be way off. He may need to talk to a doctor about antidepressants because who wouldn't be depressed with everything he had been through, and some of those medications actually stimulate appetite as a side effect. I did stay in the house and lived from chair to bed for about three months, then slowly took small trips out of the house, and it was really hard at first because of the weakness. It just wasn't enjoyable, but I kept pushing myself a little further each time. I think you are a great motivation for him. I think you are incredible, and he is fortunate to have such a caring and loving wife. Take care, Tim.

Hi Anna, sorry to hear. Your situation is kind of unique, being that there are multiple parts. Really, Duz did a good job with his answer. Really, I would say liquid vitamins would probably be easier to absorb. Sometimes it's not how much is consumed, but rather how much is absorbed, if that makes sense. Ensure - I am not a fan of, except for its non-lactose component. This is why I wanted to write a blog on fitness, but then I injured my shoulder. Now it's getting better. Ensure IMO can help, but it's a small part. I have heard of people getting sick by drinking too much of it. I myself was included in this. Fish is by nature a natural anti-inflammatory. It's high in protein. Putting olive oil on fish can add calories and flavor. Yogurt? Yes. However, too much can cause some liquid. So I'd say a cup a day. Applesauce? Yes. Bananas? Yes. These will help with absorption. Realistically, there can be so much played into this, so let me hit this from different angles, okay? From an absorption standpoint, the foods I mentioned are good. They are healthy foods as well. Other safe foods (most people do okay with) are chicken, rice, and potatoes.
Let's hit this from another angle. The human body has a homeostasis (where it likes to stay). When it gets used to losing/gaining, it thrives off it. Take, for example, a healthy yet overweight woman. She exercises, but is discontent. So then she crash diets. When she eats normally again, her body gains weight. Then you hear her say, "I just gain the weight back" or "I can't lose weight." Well, in that example, her homeostasis is used to being her weight, so her body wants to be that weight. Follow? So when I used to train people, I paid attention to homeostasis and metabolism. So really, if the body is swinging around, the homeostasis is raffled. So it's great to start maintaining, then gaining. So the body has a platform to build from.

Anxiety/depression? What is really going on? Well, adrenaline is the hormone that speeds up heart rate by definition, clinically. So when someone has anxiety (smaller people usually lose weight, while heavier, bigger-boned people tend to gain), their heart rate speeds up. Well, so does their breathing. Maybe oxygen is slightly deprived from the brain, causing "dizziness." Let's take this up a notch. Well, if the heart is faster and breathing is faster, so will the G.I. system, as Duz was referring to. Actually, it can speed up 3-5 times faster. See why anxiety and these types of surgeries don't get along? So, by lowering any anxiety (don't focus on it, or it may cause more), it can help with absorption as well. Also, anti-depression pills, as Duz referred to, can have a weight gain-like effect. I took some off-label for sleep while bulking for weightlifting. I went to the doctor a few months later, and he couldn't recognize me. He kept looking for me, and I was not far away, lol. I packed on muscle and weight. All through the practices, I believe. Recovery, diet, and micro-tearing and stimulating the CNS (central nervous system), but not overloading the CNS. Many lifters overstimulate the nervous system by lifting too long or with too much workload. I don't expect him to be lifting, so I will stay away from that.

Now, pure diet: Understanding... Take the opposite of the heavy girl with homeostasis I mentioned earlier. Turn it around, a guy who is trying to gain weight but having trouble. You need to add 500 calories a day, so 3500 a week (500x7=3,500) to gain 1lb a week by traditional dieting guidelines. However, with a higher absorption rate and a slower metabolism due to reduced anxiety or corrected depression, it can be less. However, they add in what's called an injury factor, so another 200-300 calories. Now, this is just for your pure understanding (this is a healthy person). However, let's up it a notch. So you want the person to maintain, then gain. However, the body might not feel hungry or be able to eat because of the newfound raffled homeostasis, and the stomach is not used to eating as much. And yes, anxiety can play a factor. So slow and steady. Like I said, simply adding olive oil to fish can increase 100 calories and add some extra fat. Adding yogurt to a small lunch can add 100 calories and some protein. I can give you a mock diet, and you can take it for what you want. No caffeine. No milk. No pork. No ham. Again, a mock:

Breakfast:
Toast two slices - yes, with the burnt part (it can help with enzymes).
Anything else tolerated (fruit), oatmeal, etc.

Lunch:
Sandwich, all-natural peanut butter and jelly or turkey (close to the bone). Closer to the bone, fewer preservatives.
All-natural potato chips
One cup of yogurt
1/2 banana - cutting off those ends, lol.
Something snackish, Little Debbie
String cheese (all-natural, organic)

Dinner:
2 fish fillets, with garlic and olive oil (eliminate garlic if it's not tolerated)
2.5 servings of rice, all-natural
3 potatoes

Snack 4: Ensure

Snack 5: Pretzels, etc., etc. - stay within 200-500 calories, don't overload at night.

Protein sources I like:
- Whey protein acts quickly in the body, but also leaves the body quickly. Egg white protein powder is more slowly digesting. It's probably all-natural. I like egg white protein!!!!!! Maybe see if adding half the serving size of egg white powder, stir it in an Ensure. Vanilla is probably better because of the egg white flavor. Now you've got yourself a high-octane drink. Filled with vitamins and amino acids.

Last thoughts: What I wrote is from an opinion. I could be off via the conditions. Also, you can scale down anything. Instead of two fish fillets, fish 1. Instead of fish, chicken? Etc. The diet was a mock diet to help gain. Also, I'd say liquid multivitamin over pill for absorption - ask the doctor (or show him this). Also, the egg white protein might help so you can reduce Ensures and get a better drink by mixing it with an Ensure. I hope this helps you or anyone else. You can always feel free to keep in contact on Facebook. My name is Rick Bitty. If you have any more questions, if you find this helpful, feel free to contact me here too. Good luck. You seem like a good person standing next to him through everything. Oh, I forgot... G2 seemed to sit well with me. Also, Propel. However, flavors like strawberry and peach didn't. Also, I see some have the same problems with those fruits, strawberry and peach. Also, for blockage problems, maybe some fiber. I hope this helps.

Hi there. After my stint in the hospital, I lost 35 lbs. I'm now back to my usual 225. All I did was spend some quality time at McDonald's or A&W or Burger King and Kentucky Fried Chicken. It works every time.

I sure wish I had that problem. Of course I dropped an immediate 25 lbs. from the surgery and recovery. However, after about 6 months I started gaining weight and now I weigh 40 lbs. more than I did BEFORE the surgery. In the reading I've done and from the Ostomy Club meetings I attend monthly, it has been said that an ileostomy is cause for weight gain, so I'm confused? I wish I did have the problem of trying to gain weight.

John

Hiya whatnow.

He sounds exhausted and depressed, lacking motivation to get moving, and to cope with his own 'pipework!'

I wonder if some antidepressants might help - have you chatted with the doctor about it? It's difficult to get the head/mind away from focusing on bad health times - have you had a holiday recently? Is he getting out into open spaces, to see nature/have a walk (even if it's only a few meters at first)? As the spirit lifts, so appetite picks up. It takes a long time and a lot of energy.
I hope things get better for you both.