Q for the colon-less

Is she in college? I think it's pretty common for people to gain weight around that age, you know, freshman 15...

I am only a year out from surgery, but i notice I haven't had much in the way of weight gain. I was thinking maybe lack of colon is key to me staying petite? Sounds like you're not having the same experience. I wonder if it's just that she's healthy now and comfortable eating? I do not eat a lot, never really have. There was a period while I had UC, when I was on pred, where all I wanted to do was eat. At that time, my weight was an ongoing issue that didn't get managed until I had surgery. Now I am back to my preUC figure. I eat like I did before UC too, light. This appetite is normal for me.

An endocrinologist is probably the right doctor to see. GIs don't know about hormone-related issues. Ideally you may be able to find somebody with experience dealing with people who are colon-less. Even though my husband still has colon, the endocrinologist we found does have some experience dealing with patients with IBD.

Thx folks.
The weight loss was months after the surgical recovery, and gains followed as if a switch as flipped. She has been trying high protein / low carbs and it is helping a bit. Thyroid is a good bet. The whole microbiome could be "off" from years of UC. Maybe just going back to whatever "normal" will be.

I don't know, I honestly can't see any relation to the 2- it's been 2 1/2 years since surgery for me, no j-pouch but perm ileo. My weight hasn't changed much- I lost during the hospital stay, of course. But then put it right back on, & my weight has been basically the same ever since. I'd ask her PCP to check her thyroid, sure- but, & don't take this the wrong way- girls of any age can have some pretty wacked eating habits that they may not share with their Mom! I just wouldn't be so quick to pursue a medical diagnosis- if weight gain is the concern now, can you suggest walks together, exercise, etc? See if that helps, along with lower calorie choices. In all my years researching the loss of one's colon, missing micronutrients has never come up.

Long-term or high-dose use of prednisone can affect the HPA axis (hypothalamus-pituitary-adrenal axis).

I would have your daughter see an endocrinologist with speciality in pituitary and adrenal issues (you do not want an endocrinologist who sees diabetes patients as the bread-and-butter of his/her practice).

After years of prednisone, I developed secondary adrenal insufficiency.

It is possible that your daughter has the opposite - high cortisol - due to disruption of the HPA axis. This would be a Cusing's syndrome subset.

A blood panel to test for her baseline morning cortisol and baseline ACTH (the hormone secreted by the pituitary that communicates with the adrenal glands) would be a first step. The effects of prednisone can be long-lasting and insidious.

I have developed avascular necrosis of my hips as a secondary gift of prednisone. Prednisone is a gift that keeps on giving.

Certainly, a discussion and consultation with a competent endocrinologist would be worth while. Due your due diligence and find an endocrinologist with knowledge of the pituitary and adrenal glands. Not all endocrinologist's are equal in knowledge and acumen.

I think your concerns are valid given all of the many medications that your daughter was on for UC - hormonal effects can be real. The body has hundreds of hormones that serve as chemical messengers and that regulate the body's numerous physiological roles. Very few people give thought to their endocrine system. It remains vastly unknown to people, until there is a reason for concern.

Adrenal insufficiency is no picnic in the park. It has proven to be a life-threatening illness for me.

That your daughter has been on prednisone should keep her aware of possible side-effects on her radar for years to come. Be an informed patient of prednisone's delayed effects.

Best wishes to you and to your daughter.