Weight Gain After Ileostomy - Need Advice!

Hi everyone,

First time posting, I have an ileostomy since Christmas Eve 2009 (emergency surgery). I am a 55-year-old female and live in Australia. I have gained 30kgs since then. Can't seem to lose any weight, getting a bit depressed about it. Just wondering if anybody else has had the same problem. If you can help me, please let me know.

Cheers, butterfly.

Have you seen your surgeon? An ostomy nurse? Most people tend to lose some weight...you'd better find out what's going on!

Since my ostomy operation 2 years ago, I lost 25 lbs (from 160 lbs) and have never been able to regain some weight. Wish I could!! Had to buy lots of new clothes!! Best wishes, Opa Ray

Hi.

Had emergency ileostomy in June 2011. Hospitalized 3 months. Lost three and a half stone but when back home gained half a stone very quickly but could gain no more despite some serious food intake. If butterfly having problems need to check out. Had reversal to colostomy bag six months later and again had immediate weight increase before leveling out. Are you keeping to a low fiber diet.

Regards.

George.

Hi Butterfly, I am from Australia too and I had an ileostomy performed in 2006 and lost 21kg's but put it all back on. Because of this, I have had two more operations because of peristomal hernias that developed, giving me a blockage each time resulting in emergency surgery.
Losing weight is hard and I know what you are going through. I try to diet but can't seem to lose the weight and if I don't, I know I will end up in the hospital again.
Keep trying as you don't want to end up like me!

Cheers.

Hey Butterfly, I'm from New York and having the same problem. In 1997, I lost 57 lbs in two months. I had my ileostomy and a second surgery in 2006. Since then, I went from 197 lbs to now 240 lbs. I'm not a big eater and go to the gym. If you get any new information, let us know.

I had my ileostomy surgery just over two years ago. I gained about 20+ lbs. It was due to being depressed. I tend to eat when I'm down or stressed. I also can't exercise like I used to. I have now lost 35 lbs. I went to a hypnotist. I know to some, this sounds a bit far out. But I was desperate. I couldn't get back on track and diabetes runs in my family, so I went for it. I mostly eat meat and veggies. No breads, potatoes, or even fruit. Once you lose the weight, you can eat these things in moderation. What I got out of it that I didn't expect is I barely get any gas, and I used to have a lot of pain in my abdomen, and that has diminished considerably.

I had an ileostomy in 2008 here in Canada and had lost weight due to dehydration at first, but within months it took me about 8 months to gain any amount of weight back, say around 8 lbs. But then I have been slim all my life.
What you eat before and after your operation is important to take into all consideration because remember the small colon has to take on a new responsibility of absorbing nutrients that the colon used to process.
This is to me the most significant role the ileum now plays in the new digestive process, okay.
Try new foods and experiment even if at first your system rejects it.
Hope you fare well, and my name is Mike from Canada.
2nd chance on Meet Ostomate site.

Hi Butterfly,

I had/have the same problem. I had Crohn's for 25 years and could eat whatever I want as I usually passed it in 24 hours. Anyhow, since my ileostomy in 2010, I've put on a stone. Mentioned it to the wife and she said "Welcome to my world."

Don't be depressed, you're just normal like everyone else. Calories taste good and it's hard to say no when you've been so ill. Join Weight Watchers or Slimming World and learn with the rest of the Western world that we need to eat less than we think.

Good luck and keep cheerful, and remember, being fat is better than being dead any day of the week.

Ady

I know what you're going through. I lost over 50 lbs before I had my colon removed. Never really had much of a problem, so if anything good came out of the operation, it was that I lost the weight... Problem now is I can't quit gaining the weight. I am so fortunate to be able to eat anything I want and not have any problems. Guess that leads to the problem of gaining all the weight back and then some. I am NOT a happy camper! I finally gave in to the Sensa commercial and am trying it... it's not supposed to have anything bad in it, so I thought I'd give it a try. All you do is shake this product on anything before you eat, and you will cut down on portions. I've only been on it a few days, and whether it's in my mind or the product really does something, I have been cutting down on my portions. The other thing is it's such a pain in the butt to constantly look for the shaker. If you want something to eat, sometimes you just do without eating! Hopefully, this and exercise will work because I'm really tired of the fat clothes!!
Nanc

Weight gain is not unusual for those who have an ileostomy. Especially if you have had ulcerative colitis for a long time prior to your surgery. Inflammatory bowel disease can keep your weight down, and then when the cause of the inflammation is removed, the body reacts by storing calories that it once used to fight the disease. My surgeon warned me of this when I had my surgery in 1984. He was absolutely right on that score. Weight is a continuing battle for me. However, the weight gain is not as big a risk as the weight loss I was experiencing with IBD.

When I developed Crohn's, I was very heavy and lost 150 pounds due to the disease process. That tells you how heavy I was. I had my ileostomy in October 2009. It took me a while to figure out that it would not hurt to eat, but sadly, I learned to eat again and have gained 90 pounds. I do not have problems with hernias or anything of that sort, but have had immense trouble with dehydration. In fact, it has caused damage to my kidneys. So my goal is to not gain any more weight and slowly work at taking it off. The surgeon at Cleveland Clinic, where I had my surgery, told me that I would gain weight. It also doesn't help that your body has been through starvation mode, so when you cut back on the calories, it slows down to conserve those calories in store...
Best of luck to you, but the good thing now is no more suffering like before!!
Take care.

Hello everyone, how are you? Thank you for your replies.

I was diagnosed with Crohn's in July-August 2009, after having diarrhea for a couple of weeks. Then emergency surgery on Christmas Eve 2009 for a permanent ileostomy. After the operation, I lost about 10kg. I have since put that and another 22kg on, so a total of 32kg. It doesn't seem to be stopping. I have never been this big in my life. I hate it. I am thinking of having hypnosis to see if that can help. How do you deal with the way things are in your life?

Cheers, Gayle

Hi Butterfly,
Jim here in Scotland, my daughter lives in Tasmania. But to reply to your problem, I now have an ileostomy since 2006 and a urostomy since 2009. And yes, I have put on weight. I was 14 stone but have now got it down to 13 stone, which still is a lot for my stature, 5ft 6in.

I have just got to carry on and live life as best I can as I am unable to do much exercise. I am 77 and hope to be here for a while yet.
Once they open you up, it seems your inners get all mixed up and your body shape goes haywire.
The secret is to forget about the figure and just try to enjoy life.

Hope this is of some help to you. My email address is ****
Cheers

Jas. Fagan

For many years after initial surgery in 1971, I stayed on the slim side...very much so. As time went on, the numbers on the scale went up and up and up! I'm 5'6" and in '71 I was 79 lbs. Now poundage (!) has crept up to 135! I'm now buying a lb. of butter a week just to butter my 'muffin top'!!!!! Life on earth is a one-time gig. As long as we are upright and breathing, as long as you can live, laugh, and love, we are blessed. MUFFIN TOPS UNITE!!!!!!

I also gained some weight after the ostomy surgery, but that was some years ago, and now I find that my weight has more to do with general diet and exercise than anything else.
I try to limit sweets as much as possible (except in the case of emergency chocolate!), and also became vegetarian two years ago, and have lost weight. I don't exercise as much as I should, but find that walking helps and any little thing, like using the stairs more. If that doesn't help you, I think you'll have to consult your doctor.
Good luck.

Hi, I'm replying from your Feb. comment, just curious if the Sensa stuff worked for your diet? Sounds too easy!

Thanks,
Roxy

Hi, I'm gaining weight since Jan 2018. I have been eating too much. I guess my diet is bad. I guess and I'm now depressed and need to lose some weight. I don't like being this way. I don't eat much meat or veg. I was eating a lot of carbs. What is your diet? Can you help? It's winter and I'm not active enough. I'm sure and home slot don't get dressed much. Been in PJs all the time. Put pants on and omg I need to change my diet. Are you doing better now and what did you do for it? Weight gained Victoria. Thank you for any help.

I have the same issue. It's not making sense. I'm very confused about it all.