How to gain weight after ileostomy?

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.

Hi Anne,

I read your post, and the replies of others, and I do agree that you have your "hands full".

My experiences with having an ostomy, and then being married to a man who had an ostomy, goes back more than 50 years.

I was 15 when I had my surgery (I'm 65 now), and received the best advice from a then 4th year medical student, who was on my doctor's service. After being sick for 3 years, I was used to "people" - parents, doctors, nurses - taking care of me. But after my surgery, Dr. Henry M. told me in no uncertain terms, when I asked him to "clean me up", that it was my body and my responsibility. Boy, did that shake me up!!! But I was young, and he set me on the right path. While still in the hospital, I learned to take care of myself, which was so difficult, because I was also in a back brace, with a disintegrated disc, and osteoporosis... That would go on for another year, so I had to empty and "change" my ostomy appliance in bed and on my back. And then after I "changed", I had to wash and clean out the "reusable pouch... ready for the next change. Where was my mother (or father)? They were there to help if I needed it, but I guess they received the advice that I should do as much as I could... on my own...

My story continues, as I married a man who also had an ileostomy, and although he was also independent, when he got sick and dehydrated, I became his nurse... when he really should have been in the hospital. Big mistake, but I loved him... and so I helped...

Miraculous as it was, we had two children, who both unfortunately inherited my Ulcerative Colitis and his Crohn's Disease. So there we/I were, taking care of two teens with medical issues.

The best advice that I felt I could pass on to them was to learn about their own body, their own responses, and eat what felt okay for them. I received a lot of criticism for that, but 12-14 year olds do know what they can tolerate, so when one came home from school and reached for a loaf of bread and a jar of peanut butter, that's what he had... I would have liked them to "eat healthy", but maintaining weight was more important, so I can't tell you how many cans of spaghetti o's we went through, and how many boxes of Twinkies... and Devil Dogs...

So, you may ask, what is my "advice"? 1) Try to back off some, and make your husband more responsible for finding the foods/calories he wants to eat to maintain his weight...
Chips, pudding, ice cream, etc.... My kids' doctor pointed out that "Pizza" was a perfect food, with all food groups, as long as the dairy didn't adversely affect the kids...

I know you can't pick up a grown man and make him go out and exercise, anymore than I could carry my 6' tall high school senior out to the bus... But when I pointed out the repercussions of his missing school (getting left back), he slowly took on the responsibility for getting up and getting out of the house. I didn't care if he slept the day away in the nurse's office, as long as he got credit for the day and got his homework assignments.

When I was sick as a child, my mother didn't let me stay in my bed clothes all day... even if I did go back to bed. Instead, I had roomy "lounging" outfits that weren't confining like jeans... but they also weren't pajamas. She also made me "make the bed". I could lay down on it and use another blanket, but it was a way to make daytime different than nighttime.

Oftentimes, we want to make our loved ones the most comfortable, and so we do more for them than we need to do... and it becomes a habit. Some sort of therapy might be helpful for you and your husband, as you both find ways to cope with the changes in your lives...

Today... I'm 65, in early retirement due to many medical issues. But I live alone and take care of myself, but do have help from many good friends. My older son still has Crohn's, but manages his attacks as he works as a middle school teacher. My younger son met and married an Australian gal, but a few years ago, she developed MS. After much research, she put them both, as well as their little boys, on a vegan/autoimmune supported diet. Jay is off medication for the first time in 17 years, and they are all doing well.

I apologize for the length of this... but I hope it will help...

PS... My 73-year-old ex-husband died two weeks ago... He had advanced kidney disease and was on dialysis, was an out-of-control diabetic with sores on his legs, needed a hip replacement, but couldn't have it done because of the sores. Ultimately, a systemic infection, along with a stroke and heart attack, caused his death. This was sad for my sons and for me, but for as long as I can remember, he was resistant to following medical advice and just did what he wanted... There's a lesson to be learned here... and although my life is not what I would have wanted it to be, I do the best I can with every good day that I have and am grateful to still be walking, talking, and breathing at the same time.

I have had an ileostomy for 47 years. When I had my surgery, I was joyous to be able to eat almost anything and everything. My mainstay was Oreo cookies and my friend's mom, who cooked three great meals a day. I gained 30 pounds in three months, which brought me up to 100 lbs. There was no such thing as Ensure or Boost then. In reading some of the food choices being suggested to gain weight, I think about and have concerns for high blood sugar results, like in diabetes, especially if you are older in age. I am not a nurse or doctor, but I think I would be a little cautious. Mostly, I would say, eat such. It is going to take a bit of time to gain back the weight lost or a reasonable weight for your body size/structure. Just relax and enjoy feeling good again. No more stomach cramps, no more diarrhea, no more extreme and restrictive diet, to name a few. At first, I went through a lot of frustration getting used to changing my appliance. Sometimes I cried, sometimes I laughed. Then you just decide you have to do it no matter what. They did not have ET nurses to fit me with an appliance, and the kind used then were very archaic - out of the Stone Age kind. Ha. So much has improved in that arena. Would love to hear from anyone and everyone about their own personal experiences.

Pasta, rice, potatoes, bread... Carbs will put weight on.

Hello, although I'm new to this site, may I suggest Boost in the Juice form. It comes in peach, orange, and berry, but you can't buy it in stores. You have to order it from the Boost company. Look it up online.