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Weight set point

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Joined: 5 years ago
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I had my colectomy with ileostomy on 8/9/17 and immediately gained 30+ pounds within 2 a small lady, 5 feet tall, small frame, 32 years old, so this is a lot of weight all at once, especially since I was not underweight to began with. I was at a fine weight and had no real issues with weight gain until after my surgery. Now, it's like my metabolism took a hit and it's very hard to lose weight and maintain my normal weight. It also seems harder to put on muscle than before. Has anyone else struggled with this?

Can this surgery make one's "weight set point" higher? The only things I can think of are due to altered gut flora, hormone imbalances, nutrient malabsorption.... So can there be sudden and stubborn weight gain due to lack of gut flora (which can control metabolism)? Can the lack of colon affect the thyroid (since a lot of the t4 to t3 conversion occurs in the colon, as well as some nutrients vital to the thyroid are synthesized there)? Can the lack of colon affect estrogen metabolism/clearance due to the hepatic portal vein dumping excess hormones/toxins into the colon (yet this vein is cauterized with colectomy surgery, thus this vein can't dump what it needs to into a colon that doesn't exist)? What other reasons could there be? How can these be addressed bc diet and exercise haven't been helpful and the drastic change in my metabolism and body isnt normal. 


I've also tried many ways of eating to try to find something that helps, but it doesn't seem to make a major difference, yet am open to suggestions. It is harder to figure out diet with an ileostomy, especially bc I have a hiatal hernia, peristomal hernia, am prone to blockages and prolaspes, to name a few. No doctors have answers, nor seem to care. It makes me so discouraged that not only has my colectomy with ileostomy caused me more harm than good, but it also has greatly impacted my health and self esteem due to weight gain that is incredibly stubborn.


Ps, my surgery was due to Ehlers Danlos Syndrome (a connective tissues disorder) and honestly should never have been done. I struggle more with symptoms than ever before and the added weight makes things feel a lot worse. 

Colectomy+Ileostomy due to Ehlers Danlos Syndrome. 8/9/17

Joined: 10 years ago
Posts: 4176

Hey Veggie Bee,

I've heard some people say that they've gained weight after surgery, and others who struggle to put on weight. I don't know what the percentage ratio looks like, but here is some food for thought (no pun intended!). Keep in mind that not all of these will apply to you specifically:

  • Keep a food diary and track calories. If you are gaining weight because you are over-consuming, then it will be easy to spot using a diary. Here is an article that might help:
  • Likewise, you'll want to track your activity to see how many calories you are burning. Consistent exercise, regular sleep, good eating habits can increase your metabolism.
  • Take note of any meds or supplements you take. Some, like steroids, can cause a lot of weight gain (mostly water weight), while others can interfere with your metabolism. Talk to your doctor or pharmacist if this is a concern. 
  • Work with a Registered Dietitian to come up with a meal plan that works for your needs. Tips one how to find one can be found here:

On the topic of weight gain/loss, I actually did post about it to see what the experience has been for others. You might find interest in this post:

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~

LK reacted
Joined: 6 years ago
Posts: 1449

Hi there Veggie Bee...I know this is a little past your writing date, but I have eye issues and  difficulty with blurry words. I have had my stoma since 2009. I am 60, female. I originally had trouble gaining weight for about three years after my last surgery. Then in about five weeks. I gained over forty pounds. I was told I had a Hypothyroid. After reading about it, I decided that the best I could do would be to try and at least maintain the weight I was at. My activities had increased in the middle of all of this, and my eating habits were good, as in nothing had changed from when I was needing to gain weight and could not. So I decided to add another walk in my day with my dog, making three walks, and then my vegetable garden work. This still did not help. So, after three years, I just decided that I would give away the clothes that used to fit me. This was not a good idea. Now, about seven years later I have become malnourished due to malabsorption. Then eventually I added one piece of clothing a month to fit the weight I had become. I now wish I had kept the clothes that did not fit, and just added some new ones. I am now about 57 pounds less and still loosing due to be malnourished again. The thing is, our bodies go through a heck of a lot when we have to have an Ileostomy. Many things are moved around and our intestines really take a sterile surgical beating. I do not think that all the affects of the drugs we are given are fully known, plus everyones bodies are so different in how they respond to the surgical invasion. Doctors, tho well trained and knowledgeable really can not answer all of our questions because everyone is so different in how we each respond to drugs and the surgery. We were given all those feet of intestines for a reason. There function in every inch is really not known. Therefore, I think that sometimes we have just got to say, okay, whatever, and try to get along with the difference we do not like so much. It is not easy to do by any means, and definitely frustrating as all get up. It already takes a strong person to go thru the surgery and a stronger one yet to deal with the changes and what may come after. If the doctors can not add to the reason these things are happening and we have done everything in our power to change things, I can not help but wonder, if we are just to accept the changes and work with them. Just do not give away your favorite clothes. When I was a young mother and complained to my mother about the changes in my body, she used to say, your not a teenager anymore! This annoyed me, but thirty years later, I was able to see just what she meant. I truly hope that you can resolve these issues in the best way you know how. If your thyroid has not been tested I would do my best to have my doctor understand the need you have to resolve the issues. I had to once promise a doctor that I would drop the issues if only he would test me for Hemochromatosis. I tested positive. He said he would listen to his patients more. Sometimes we can and have to teach them...gently. Knowledge is power, but it can also be harmful in the wrong hands. Just do your best. :)