Ileostomies and absorption

[UnXmas]

I am having so much trouble gaining weight. I've always found it difficult, but never as hard as this. I had an ileostomy created a year ago. I still have the majority of my small intestine. I have no nutrient deficiencies (and I don't take any vitamin pills to achieve this, though I do have supplements like Ensure so I get the full range of nutrients in good doses). My stoma output is normal (it was weighed every day during my recent hospital admissions).

I spent about a month in hospital this summer to try to gain weight. It was concluded that I need far more calories than someone of my height/weight/activity level/etc. should need before I started gaining. I don't know exactly how many calories I was having, but I didn't gain weight until my intake had been upped to three meals a day, three snacks a day, and 1500 calories a day on top of all that in supplements (Ensure, etc.). I was doing no exercise. The nurses, dietician, etc., who are used to dealing with patients with extreme bowel problems and extreme anorexia - I was under a specialist nutrition team who mainly deal with weight-gain/refeeding, whatever the cause - had never seen a patient eat like I do and be so thin. The main gastro. doctor just says she doesn't believe it and is convinced I was faking my eating somehow, and that the weight loss is due to an eating disorder. I understand her scepticism to a point, but for that reason I had one-on-one supervision by a nurse or mental health worker, twenty-four hours a day, (to make sure I didn't secretly make myself sick, hide food, etc.) so I don't know why she still insists I faked the difficulties in gaining weight.

But that high intake of food led to my intestine becoming blocked and perforating, which I'm sure most of you probably read about in my posts.

Now I'm trying to gain at home, and I'm being weighed once a week by my GP. If my weight drops, they'll send me back to hospital, and I don't want that! I want to gain very slowly, on less food intake than they gave me in hospital, because my digestive system just can't take it. My GP knows what too much food did to me, but she also says it's too dangerous for me to lose any more weight. She's trying to get the consultants to come up with some kind of treatment to help my system cope but they are not forthcoming, and in the mean time I have to keep gaining! (She's agreed I don't have to see the doctor who thinks I have an eating disorder, so she's waiting to hear back from one of the others.)

My surgeon once said to me that if I drank too much liquid with an ileostomy, I would wash the food through before I could absorb everything from it. I asked one of the gastroenterologists who saw me during my weight-gain admission about this and he said this wasn't true. But I trust my surgeon far, far more than I trust the gastro.

Can anyone confirm this?! I drink a lot - I've been trying to drink more, as I find high-calorie drinks an easier way to get more calories in than extra food. But I'm at a loss. Can I not be getting all the calories I'm ingesting even with a normal stoma output? Do ileostomies generally cause malabsorption issues, even when the small intestine is intact? Or is some of the small intestine removed with every ileostomy surgery? I had a small section of my small intestine removed when they fixed the perforation, but this was after I'd already had so much trouble gaining weight during the weight-gain admission.

I can gain weight, but only when my calorie intake is so very high. I'm sure it didn't used to be this hard, and the ileostomy strikes me as the biggest thing that could have changed since previous times when I gained weight.

I'm getting quite desperate - I've been gaining, but at the rate of literally 0.1kg a week, and I'm not sure how long they'll be content with that, and if I have a stomach upset or something, it will all just be lost again. They made me gain more one week, but I only managed this by wearing a heavy jumper when I stepped on the scale! (Which I'll now have to take into account at the next weigh-in :yfrown: ). If you know any facts on this, or have any personal experiences, I'd love to know!

 

[DJW]

Hi UnXmas,
You're in a very frustrating place. Its been a while since I was severely underweight.

Here's what I did: keep in mind this was years ago and some may be horrified but it worked. None of these foods caused issues

I'd drink ensure several times a day

I'd drink a high calorie shake everyday (ice cream, banana, milk, egg)

I'd have a Carnation Instant Beverage as a drink with breakfast.

An ileostomy shouldn't cause poor absorption.
Do you have inflammation in the small intestine that might be limiting your ability to absorbs?

 

[UnXmas]

My doctors tell me I don't have enough inflammation to account for the difficulty I have gaining weight.

The drinking thing - I worried about this before, I think I posted about it too, when I was in hospital for my weight-gain admission. I contemplated cutting down my fluid intake, but decided not to, as I didn't want to get into second-guessing everything I ate, drank, what meds might be making me lose weight, etc. Of course I should have been able to put these questions to my doctors and dietician, and I did, and they told me to drink as much as I could, but I didn't trust anything much they said.

What happened then was that my calorie intake was increased even more, and the weight finally started going on, so I was quite pleased I hadn't cut down my fluid intake, as I might have wrongly attributed the weight gain to that and have ended up cutting down my fluids unnecessarily (unless with less fluids I might not have needed so many calories to gain??). And I get thirsty so being able to take in calories that way is a big help.

I know all the advice about ensures, eating little and often, eating calorie-dense foods. Not that your advice isn't helpful, and it does me good to be reminded of it and hear how some things have worked for some people that didn't for others. It just really feels like there's something WRONG with me. Do you know how many calories you had to eat to gain? What did you eat altogether on a typical day?

When I did gain in hospital, amongst other things, I resorted to eating tablespoons of peanut butter, right before I went to sleep so I didn't have to think about it being in my stomach (though I'd still feel full at breakfast the next morning). I haven't been able to face much peanut butter since then, so I've been eating cheese with ordinary butter spread on it. Like a sandwich with no bread, bread being too low in calories to bother with.

 

[DJW]

I don't understand why you wouldn't be gaining weight. Gaining weight was always a challenge when I was in a major flare.

Its been a while but I believe I was taking in 2500-3000/day. I could not eat when flaring and ended up in the hospital a couple times on tube feedings or through my port when bowel rest was required.

Sorry if I forgot, but have you had any tests to see if things are moving properly?

 

[UnXmas]

They tried me on an NG tube but my stomach couldn't take it - I got terrible diarrhoea. I had TPN but got an infection from it, and never want to have any kind of tube or artificial feed again.

I had an upper endoscopy and MRI of the small bowel with contrast last Summer - there was inflammation but not much. I had a gastric emptying study last week but don't know the results yet - though that won't tell me anything about absorption problems. I'm supposed to have a pill cam soon but I'm going to cancel it because I'm very afraid it will block my stoma - my stomach blocks far more easily than most, and I can't bear the thought of ending up in hospital again due to that. My doctors said they don't expect the pill cam to show anything that wasn't seen on the other tests - they're doing it to be sure they've ruled everything out rather than to find a problem.

I'm not even sure the problem is my digestive system. Maybe something's wrong with my metabolism? I know thyroid problems can cause weight loss, but I assume they check that with basic blood tests? What kind of doctor covers problems with metabolism?

 

[DJW]

Im not sure what type of doctor covers that. The GP should be able to do the initial work up.

 

[Muppetgirl]

Endocrinologists are the specialists that manage problems with thyroxine and other hormones most of which can impact on metabolism. It is being hyperthyroid that speeds up metabolism (and a lot of other systems in the body. Hypothyroidism is the more common presentation which slows every thing down. Though some thyroid diseases like Hashimotos can have a hyper period followed by a hypo one. But yes any doc can run basic bloods to check this, you almost certainly would have had it checked at some point.

 

[Brian'sMom]

Have you tried a program that can track your calories? When my son was trying to gain I was sure he was getting tons of calories. Once I started tracking I was surprised that he wasn't. Your GI should set up an appt with a dietician and they would tell you what your goal should be. A really good app for a phone is MyFitnessPal. It's free. It looks up any food! And can even scan in a bar code to look it up. You can enter in ingredients of a recipe and it will calculate the calories in a serving of that particular dish. Good luck

 

[UnXmas]

Dieticians are no use. When I was in-patient to gain weight in hospital, the dietician at first told me how well I was eating. Then my weight went down and she couldn't understand it. So she told me to eat more, and prescribed me more supplements. My weight stayed about the same. So she told me to eat even more, and prescribed me more supplements, and I told her (and various doctors) that eating too much damages my digestive system, but she said it couldn't. Then my intestine blocked and perforated, and the surgeon who fixed it said that it had happened because I'd been eating so much, that there had been a bad part of my intestine where it was difficult for waste to get through, and over the weeks when I'd been eating so much the blockage had gradually been building up.

So, no, dieticians can't tell me what my goal should be, and counting calories won't do any good because the problem is that getting in enough calories to enable weight gain, even with lots of high calorie foods to reduce the volume of food eaten, is more than my digestive system can take.

I've seen so many doctors, dieticians, etc. over the years. I know everything there is to know about gaining weight - what foods to eat, what supplements to drink, to eat little and often, how to add calories to particular meals. Something is just wrong with my ability to gain weight.

 

[UnXmas]

I'm sorry if my post above sounded dismissive, Brian'sMom. You gave very good advice that would be very helpful to many underweight people, it's just that I've already tried most of it and my problems are for some reason very difficult to fix. I actually haven't worked out how many calories I'm having very accurately, or used an app to track them. As I said in my first post on this thread, in hospital I only gained when having three meals, three snacks, and 1500 calories worth of supplements a day. My dietician's method was just to keep increasing calorie intake until the patient gained, rather than set a goal. They wanted patients to gain 1 - 2kg a week, which I thought was a terrible idea, and am convinced I need to gain as slowly as possible, given how great my calorie needs seem to be and how damaging food is to my digestive system.

At a rough estimate, I think my calorie intake at the moment is around 2500 a day; when I was gaining in hospital it must have been a lot more. I'm eating a lot of home-made meals at the moment, so the app you mention would be useful to work out my intake more accurately. Knowing my calorie intake wouldn't solve the problem, as whatever it is I clearly could do with more, yet my digestive system clearly can barely cope with what I'm having now, but it would be interesting to know how abnormal my calorie needs are.

I have considered whether I'm simply not eating as much as I believe myself to be, but those doubts I put aside after my hospital stay, where the sheer number of nurses (nurses on a ward which regularly has very underweight patients) who remarked that they'd never seen someone so thin eat so much, and the dietician's belief that I was eating more than enough, only to then find my weight had gone down, made me realise something was not right. Watching another patient eat a fraction of what I ate, and gain weight much faster than me, also seemed to suggest that I really was eating a lot.

At the moment, I'm having about 1000 calories a day in supplements, four or five small meals/large snacks (but with a lot of high calorie foods in them - cheese, butter, chocolate, mayonnaise, etc.), and several high calorie drinks a day (full fat milk - I've actually been drinking buttermilk - hot chocolate, fruit juice, full sugar Coke, etc.). It kind of would be interesting to know the calories in all that actually!

 

[CAM477]

I was diagnosed with crohns @ 19 & by 21 had most my large & part of small bowel removed as well as a permanent ileostomy.. my doc was always on my case to put weight on & like u had alot of trouble putting & keeping it on...
I was told to try 6 smaller meals rather than 3 larger ones, but that didn't work with me due to being a swimming instructor, my stoma output was constant, which I found rather annoying. .. 5 years ago I was put on remicade infliximab which helped stabilize me & did help in small doses in the weight department. . My son was diagnosed 3 yrs ago & recently was put on a 'modulen' diet where he had high calorie shakes with no food other than glucose/sugar to allow his bowel to rest, (thats another story) but the point I'm getting too is the pantry was stocked with lollies & guess who ended up eating them too?? Me... just about every day & because sugar/glucose isnt obsorbed through ur bowel, (a) it didnt effect my crohns & (b) lollies are full of carbs so I put on weight. ...
My doc was stoked, & my partner says I'm not fragile looking anymore..
I know most days the energy is minimal but if u can force urself to go for a walk - even just up & down the road or round ur backyard it can sometimes help.. bit of exercise can build muscle which supposedly weighs more than fat..
Good luck. ..

 

[UnXmas]

I was diagnosed with crohns @ 19 & by 21 had most my large & part of small bowel removed as well as a permanent ileostomy.. my doc was always on my case to put weight on & like u had alot of trouble putting & keeping it on...
I was told to try 6 smaller meals rather than 3 larger ones, but that didn't work with me due to being a swimming instructor, my stoma output was constant, which I found rather annoying. .. 5 years ago I was put on remicade infliximab which helped stabilize me & did help in small doses in the weight department. . My son was diagnosed 3 yrs ago & recently was put on a 'modulen' diet where he had high calorie shakes with no food other than glucose/sugar to allow his bowel to rest, (thats another story) but the point I'm getting too is the pantry was stocked with lollies & guess who ended up eating them too?? Me... just about every day & because sugar/glucose isnt obsorbed through ur bowel, (a) it didnt effect my crohns & (b) lollies are full of carbs so I put on weight. ...
My doc was stoked, & my partner says I'm not fragile looking anymore..
I know most days the energy is minimal but if u can force urself to go for a walk - even just up & down the road or round ur backyard it can sometimes help.. bit of exercise can build muscle which supposedly weighs more than fat..
Good luck. ..

Thank you for your reply. I do walk most days, I have a dog - my family take her for long walks, but I take her for little ones. She likes going with me because she's actually a very slow dog, she never runs around, we just potter along. My surgeons and the physiotherapists I've seen all encourage walking. My physiotherapist encouraged housework too! My gastroenterologists and GP think I should never walk a step, because it burns off calories. When I was in hospital, they even thought I should be using a wheelchair to get from my bed to the bathroom. :ybatty: I'm convinced they have it wrong - it does my mental health wonders to get out with my dog at least, and I'm willing to bet it does my physical health more good than harm too, which is what my surgeons and physios say too.

I do tend to do the several small meals thing, as I'm not good with big portions. I'd usually only do maybe four small meals a day, but have some supplements and high-calorie drinks in between, as well as picking at chocolates and sweets and crisps and things. That doesn't sound very healthy does it? I hate having to eat this way - I actually really miss fruit and veg. I do eat some, but only very small amounts. That's also because they block my stoma so easily as well as being low calorie though. I'm planning to treat myself to a small apple soon. A couple of days ago my "treat" was a raw tomato. After being stuffed with fatty, sugary stuff all the time, and unable to eat so many fruits and vegetables, I really crave raw apples, pears, tomatoes and cucumber!

Where is sugar absorbed then? In your stomach? Maybe I'll go and google that. I have found that sugar isn't as filling as fat, so, for example, it's easier to eat a few sweets than a few chocolates, or drink fruit juice or Coke rather than milk or Ensure. Though fat has more calories for the same amount of volume than sugar. :confused2: I have been drinking lots of different fruit juices - healthy, fruit, and some calories - more than if I drank water or sugar-free squash or diet drinks anyway.

I had to do bowel rest recently too. I was fed through TPN. But the the TPN line got infected, and I had a bad reaction when they removed the line, so altogether it left me on IV antibiotics for weeks, then oral ones, and paralysed down one side - temporarily anyway, that's why I'm seeing physios. So I wasn't very keen on TPN. I don't want any feeding tubes or IV feeding, they always end badly for me. The bowel rest might have done some good though, as my intestine all healed up very quickly.

Congratulations on your weight gain! Are you able to maintain a healthy weight fairly easily now?

 

[MarkP_AUS]

I am still underweight but have managed to put on 20kg in weight since i left hospital with my belly buddy. For the first 2 years i could not gain any then i found a dietitian who could look outside the box and adjust things to suit me. My diet is high in fats and carbs but low in fibre as i have issues with strictures and a peristomal hernia. The only additive she put me on was a powder called polyjoule which is tasteless and color free but each scoop added to food or drink is 60 calories.

 

[UnXmas]

Where is sugar absorbed then? In your stomach? Maybe I'll go and google that.

My googling tells me sugar is absorbed in the intestine. Maybe certain kinds of sugars aren't? But it does seem that glucose is.

 

[Brian'sMom]

We've never tried this, but I heard of a product called Benecalorie. It's 1.5 oz and 330 calories. Its tastless and you can add it to things. But I think it may be oily I heard. With what you've explained about your situation.. it may cause more issues. I'm going to look into that tasteless powder Mark mentioned for my son. The only time my son gained a substantial amount was with NG feeds and TPN! And UnXmas...Don't worry about your post about dieticians. I have had my own frustrations with them! We had one tell me to take my son everyday after school to McDonalds. Uh... he was in a flare!! That would've been so bad on his intestines!! We have a better one now with better suggestions