Weight Gain Challenges After Ileostomy?

Can I ask what others' experience has been with weight gain (or lack thereof) following an ileostomy?

I had my ileostomy coming up to a year ago (it will be a year in May). This was after suffering from an acute attack of severe ulcerative colitis.

Before the illness, I was about 75 kgs. I'm 5 ft 9, so I wasn't a muscle man to start with, but was a fairly respectable weight.

After the operation and a combination of the illness, loss of appetite, and NHS food, I was down to 55 kgs. Not at all a healthy weight!

I had the summer off work to recover, come to terms with things, and put on some weight by eating as many high-protein meals as possible. I also drank the Fresubin Energy drinks which the NHS prescribes, which are high in protein. By the time I went back to work (August, so within 3 months), I managed to get myself up to 64 kgs, still underweight compared to what I'm used to, but getting toward normal.

The problem is that since returning to work, I haven't been able to smash the 64 kg barrier. In fact, I caught the dreaded winter vomiting bug that did the rounds two months back and was knocked down to 60 kgs. I weigh myself every week and since then it's been gain a kilo, lose a kilo, gain two, lose one the next week, and the end result is I'm still hovering around the 60 kgs mark.

Is this a normal experience? Is there a magic solution to putting the weight back on following an ileostomy? I always try to go for high-protein dishes when I can and I keep drinking a Fresubin drink every day, but it just doesn't seem to be happening for me. Any suggestions?

Scott,

In general, weight gain is minimized with the ileostomy simply because there is less time for intestinal absorption. The material passes through more quickly than in a non-ostomate. There are several reasons for this including how much food you take in at once and the type of food you ingest i.e., is it soft or is it bulky like raw carrots, popcorn or any other hard difficult to digest food. The latter I have found will induce a faster, watery discharge of materials. The faster you move the digested food through the small intestine and minimize absorption, the fewer calories you will take in. Hence, the connection with weight gain. The whole idea is based primarily on calories consumed v. calories burned. This applies to all of us ostomates and non-ostomates. A good bout of the intestinal "bug" certainly adds to the dilemma. This whole thing is exacerbated in those of us who have much of our small intestine removed. Here of course there is a need for supplementation on a daily basis. I am sure that you have spoken to a nutritionist. However, if you haven't I would suggest it to be a good idea. Stay well!

X_

Hi, I had the opposite problem. I gained weight because I was always hungry. As mentioned, we don't absorb the nutrients. Now I am drinking a shake 2/day and eating low glycemic bars for snacks. My body is absorbing the nutrients it needs and I am feeling full of energy and getting to my good weight. Maybe this shake and bar would work for you. It has the nutrients per calorie of any product in North America. There is a fellow with Crohn's who drinks them now and is getting healthier. Let me know if you want more info.

Hi Scott,

I had a similar situation - I lost a lot of weight due to a severe case of ulcerative colitis. In the hospital, they told me to basically binge on anything high in calories, in which they mainly recommended chocolate, biscuits, and cakes! (Sounds great, but in reality, it did not put on any quality weight).
Trial and error through the years has meant I've been able to see what food works best for me - and hopefully for you.
You're doing good by having a high protein diet, which is very important. I always focus on quality carbs also when gaining weight, try and include oats, jacket potato, and rice in your diet. Also, peanut butter is great as it's high in calories and is a superfood with lots of nutritional benefits. By combining these foods alongside my high protein diet, I went from 10st up to 12st in less than 6 months. This was combined with exercise, so the weight gained wasn't in the form of fat.
Try the oatmeal for breakfast, jacket potato for lunch, and rice for dinner alongside your protein, and you should see some good gains. Little and often is important as well, so try and include some protein snacks between your 3 main meals, these could be strips of cold meat like chicken.

Good luck

I had my surgery just over 2 years ago (2 years 2 weeks....ish) and am also gaining weight. Like jjMonavie, I am just always hungry. I eat a ton and take a multivitamin to keep my nutrients up.

Something that my doctor wanted to do initially (until I told him how much I was eating - then he decided I didn't really need it) was to prescribe an oral steroid to force me to have an appetite. You may want to talk to yours about this.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Dear Scott. I was reading your question about your problem with gaining weight, with the ileostomy. I recently went through a radical weight loss a year ago. My permanent ileostomy has been in now for 6 years. From the beginning, I lost 20 pounds just from being in the hospital after my colon was removed. Then, due to other many surgeries, etc., my body went up and down. Well, soon after reaching a year at a time, my body dropped 80 pounds in a six-month span. I was so sick and emaciated-looking that everyone thought I was going to die. Well, I would have if I hadn't been sent to the Mayo Clinic in Rochester, Minnesota. They figured out what really was going on. Because of my complicated internal makeup and severe allergies to foods and drugs, the nutritionist there helped combine a better eating program, for I was already on one. This is what I had to do to gain some weight. First, since I work out regularly with weights, that helped me put on massive muscle weight, for I don't have any extra fat on my body. I use a special protein powder called Body Fortress Whey Advanced Protein. This, combined with eating at least 6 small meals or just eating whenever I am hungry, and this special drink I have twice a day plus protein, etc., I have been able to retain a 20 pounds added finally to my figure. It took me a year. Doctors explained that everything goes through us fast. We tend to suffer from malnutrition for we don't absorb all the nutrients. Plus, my round of special vitamins that are gel, etc. I feel good, and I look human again. So, I hope this helps. Everyone's body is different, but for me, since it's been a while, chemistry changes in a person. So, good luck. I know it's aggravating. For me, all the workouts help keep me strong and healthy as possible, and I also am hungry all the time. Just make sure you drink a lot of water. Very important since we lack that in the ileum. Have a nice day. Belissima.

I had my ileostomy about 15 months ago. I think I lost about 10-15 pounds while in the hospital. When I was discharged 8 days later, I weighed 204 pounds. I currently weigh about 186. Two nice things about this are that I can actually go shopping for clothes in the back of my own closet and my primary MD is decreasing my meds for diabetes, hypertension, and cholesterol.

I think there are three things behind the weight loss: (1) all my output is liquid so I do not have time to absorb calories, (2) I feel fuller faster so portion control is automatic, (3) with less weight I am much more active physically. On top of all this, I avoid desserts and sugar. As others have noted, it is important to supplement your diet with vitamins, etc.; and I drink liquids like water, G2, orange juice (not to mention a little jigger of Dewars). On the whole, I would say I look and feel much better since my surgery. Like everything else in life, however, there is a downside: Chippendales turned down my application. I wonder if I should file a civil rights case???? On second thought, fuggetaboutit.

Prime Boy, if you have a really liquid output, you may want to talk to your doctor. I was on a med (I think it was called Lomotil) that slowed things down enough to help me absorb food. I was only on it for a month or two, then my body started to do it on its own.

Scott,
Iilleo from what cause? Unless you have a shortened small intestine, other than fibor. There should not be any absorption problems.

Stay with the high protein. I also take several vitamins and iron. I have CBC blood draws about every 1 to 3 months to check on my blood work. Kidney function, liver and different mineral levels etc.

I also use the blood draws to help with which vitamins to take.

Good luck

Rick.....

Hi, I read with interest your posts and wonder why I am so different! I have an ileostomy from having had a severe case of ulcerative colitis and I went from 107 kgs down to 82 kgs. After I came home from the hospital, I steadily put on weight and went back to 103 kgs.
I have always been a big person and struggled with my weight, but I can't seem to keep it down and have suffered 2 peristomal hernias (with a 3rd developing now) since my original operation that both had to be fixed by operations, and one was acute and done under emergency conditions because of a blockage!
I obviously have no problem putting on weight, so how do I reverse this so I can again be a healthy weight?

Hi

I actually just Googled weight gain after ileostomy, that's how I came to this discussion. I had Crohn's disease for 25 years, and in that whole time, I battled to keep weight on. Since my operation back in Nov 2010, I have gained steadily 1 lb every week. It's getting a bit scary now as I have a "muffin top" developing. I've never had to worry about weight gain before, it's a bit scary, and everything tastes so yummy when you don't have to worry about what it will do to you.

Ady

Since I had my colon removed, I had problems. First, I was reconnected. Every time I ate or drank anything, I had to run to the toilet. I was on so much medication just to barely eat a small sandwich. 8 Imodium a day, two Lomotil, three injections of Octreotide a day to try to slow it down. I had accidents at night in my sleep and had to wear diapers. Finally, I had this operation. My small intestines still operate the same. I am constantly emptying this bag, but at least it doesn't matter what I eat. Sometimes I take Imodium to try to slow it down. If I have to go out, I just don't eat. I am used to it. Hunger pains are easier to handle than emptying this bag 10-12 times a day just for a cracker or a little sandwich. I have lost over 50 lbs in the last few years. Can't get past 120 lbs. Sometimes I go down to 115. I have very little energy and I am always tired. Don't know where to go anymore. Have been everywhere in NJ, NY, also Philly. Too tired to research anymore. Open for any suggestions anyone may have because I feel I have no life like this. My options are few. I also have had two blockages since this operation. Last one was a big one due to too many adhesions. Would like to be happy again but can't get there. Just doomed to this lousy life. Never leave home. No more friends. Family scattered. Just me, my dog, and cat, and TV, and this computer that sometimes I am even too tired or depressed or weak to use or look at. It is now 1:30 am and I am up only because I slept most of the day away as usual. I am beginning to hate the days. I don't want to deal with real people. They just don't get it. Judy.

Hi Scott,

I had been diagnosed with UC back in the mid-70s. My average weight was around 175 lbs (79.5 kgs) prior to any surgeries. Having gone through several procedures, from having my colon removed in 1999 and a reversal done in 2001, to a permanent ileostomy in 2006, my highest weight gain was 205 lbs (93.2 kgs). Just prior to the 2006 surgery, I was 130 lbs (59.1 kgs). I am now 190 lbs (86.4 kgs) and feeling the best I have ever felt. My "secret" to this weight gain was ice cream, chocolate, bananas, and potatoes. Fast foods, such as McDonald's and other fast food outlets, including other high cholesterol foods. This is providing you can handle these foods without health risks.

Good luck and happy eating...Dave

P.S. I was born in Blackpool but have resided in the States for many, many years.

I'm in the camp of steady weight gain since my ileo (Dec 09). Done the research, counted calories, etc. It's still happening.

Checked with docs ... it happens. The overall body metabolism can change after such an operation ... sometimes significantly. So I am very conscious of 'empty' (i.e. all the yummy treat stuff) calories that I consume - not many. It's ironic that stuff like chips, cheezies, ice cream, bread, pasta go down so good. Still can't eat veg or fruit.

Reabsorption. From what I was told (top gastro doc), nutrient absorption does not decline in a significant way after ileostomy. Truth is I don't feel nutrient deprived in the least.

But got to stop the muffin top ...

My weight has gone up and down while I have had my ileostomy, but until recently I had put on quite a bit of weight.

Then my hernia I had for a while got bigger, and with the stress of waiting for that op, and trying not to make the hernia bigger, I cut down my food intake.

Post op. I started to put it on again, then now I have developed itching and sore rectal scar tissue, so that is affecting my appetite too.

Sometimes stressful situations make you eat less or even eat more, but then that has little effect either way on your weight.

I am definitely not as heavy as I was pre-hernia op.

Hi, if you like, I would gladly save a load of blubber and give it to you. My surgeon would be delighted! I can't imagine being underweight, although I'd like to borrow the issue for a few months. I really hope you find a way to sort it out.

Best wishes,

Trish

I had my emergency surgery July 31, 2010. Unbeknownst to me, since I was brought to the hospital via ambulance, I had absolutely no idea of what was going on. I finally woke up a little off and on to yell for somebody to come change my wet bed.

I really didn't understand anything about what had happened to me and why. I was told that I had had 3 surgeries consisting of repairing my bowel, removing some of my colon, and then giving me a new pooper on the outside of my belly. I ended up in the hospital for 31 days and from that first day, I didn't realize that I had lost those 31 days from my life.

After getting home and going through physical therapy and doing things the nurses told me to do and all of the yada yada yada...whatever crap...the bags leaking or exploding on me...leaking down my legs with no warnings...I didn't know what the rest of my life was going to be like.

Then...I had mentioned my problem to somebody that I knew and they had told me to see this certain doctor that could undo what was done. I went to see him and he told me that all would be well. He would do the reversal after he repaired the hernia. Great!!! I was in the hospital for 5 days and came home. Now...instead of pooping in a bag on my belly...I can now poop in the toilet. Wow!!! What a big relief. I'm back to normal...oh no, I'm not!!! Instead of bags on the belly...I'm wearing diapers and pads because there are times I can't make it to the bathroom in time anymore.

One thing I think was just as bad as the other. Will there ever be a complete remedy?

Mystified (Barbie)

Name of Shakes

I had a lot of weight gain, but my oncologist said it was due to my taking Elavil. Going to see a therapist next week to keep off the Elavil. Does anyone have ideas on how to control anxiety without gaining weight?

You just made me laugh so hard regarding the "muffin top"!! I am a regular on this site, but have never inquired why I seem to be putting on so much weight! Back in 2008, I initially lost 35 lbs (6+ weeks in ICU/rehab after a total colectomy)! Since coming home 4 years ago, it's been a steady weight gain no matter what I do or don't eat. Talk about muffin top!! I've never weighed so much in my life. I've got to admit, though, that because of the weak abdominal muscles along the mid-line (13" scar) and constant hernia and adhesion formations, I'm not really able to do any type of exercise that's meaningful. Even walking is a chore and forget about lifting weights cause I can't lift more than 5 lbs...fun when you can't lift a gallon of milk anymore! All in all, it's great to be alive and having such a great support group here. Hey, if you find something that truly works to reduce the weight, please let me know! Thanks!!!

I wish I had better news, but I'm on anti-depressants and anti-anxiety meds which both cause weight gain...no matter what I eat or don't eat, I'm still packing on the pounds. My doctor feels it's because of the medications, but I'm not willing to do without them and run the risk of becoming a hermit or couch potato due to the depression. Maybe your doctor could change your anxiety medication? Some do not cause weight gain...let me know what you find out cause I'm in the same situation as you! Take care!

Hello, I have gained so much weight. I never was a small person other than when I was really sick. What are you drinking and eating.

What a nice old thread. Good reading it again and seeing posts from former members. Since my ileo surgery 7 years ago, I have lost about 35 pounds and manage to keep the weight off despite eating whatever I want. Food goes through me so fast that it does not have time to be completely absorbed and thus converted into fat; and, for some fortunate reason, I feel full with small portions. The only downside is that medications, especially time-released ones, aren't left in the system long enough to be most effective. As a result, one of my doctors has doubled the amount of one prescription. I would add just one caveat: drink as much water as you can. Dehydration leads to many bad issues.

PB

I have the same problem. I am always hungry and I have gained a lot of weight. I am about 75 lbs overweight. I would like to have more info on how you keep your weight down. I was going to get some diet pills and they told me I should not take them because they make you lose water and because of my stoma, I lose water anyway.

My concern is weight gain around the midsection--typically where I store extra weight. Now with the ileostomy, I'm not able to work out the way I used to, especially to lose weight in this area. I would appreciate knowing the shakes and low glycemic bars you have discovered? The other concern is craving sugar like cookies. Thanks for sharing, and I hope to hear from you! Happy to hear you are being successful!

Sunflowers

I have had a permanent ileostomy for 3years after years of issues with a j pouch. I eat a lot and whatever I like but I cannot put on any weight, seems to fluctuate a bit but I have gone below 70kg and although BMI measures say this is in the healthy band for someone of my height I am still concerned about not being able to consistently get my weight up a bit. I'm running out of belt notches ! I am currently not working and play golf 3-4 times a week so wondering if all that walking is a factor.