HealingWell
Search Close Search
☰

Q for the colon-less

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/7/2016 9:06 PM (GMT 0)
My daughter is one year out from her 3 step jpouch surgery. Surgically speaking, doing fine. No infections, reasonable everything. Her eating and weight flux is a concern. First there was weight loss of about 30 lbs. Hunger signals didn't spark her to eat, and when she did, even foods she liked tasted like dust, just no appetite. Then the switch was turned on and now, she is eating frequently and gaining. A 50 lb swing in 6 months for her slight frame. Here again, the signaling is off. Full doesn't stop the drive to eat. She is managing it by eating lower calorie foods, so this isn't just a need for comfort foods. I am concerned on many levels. The surgeon and GI office think it is unrelated but I disagree. There are micro nutrients missing when the colon is gone and signaling thru hormones( Ghrelin). Lipids and trace minerals change too. There isn't a lot on this, so I thought I'd ask here if there were others who had a similar experience. It wasn't Pred weight and eating has been slightly disordered since the UC diagnosis 6 years ago, but this is different. Would an endocrinologist be logical? I don't think is is psychological, or even rebound eating from the weight loss. open to all ideas though. She is pretty miserable and has tried lots of eating/not eating tricks.
Posted 10/7/2016 11:13 PM (GMT 0)
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.
Posted 10/8/2016 1:53 AM (GMT 0)
I have a few thoughts. First was that weight loss before surgery when still sick or still during all the surgeries and recoveries?

Overall from my flare to surgery recovery I lost about 30 pounds. about 15 from flare and 15 more after surgery during my initial recovery. Then once I was healed my weight started coming back quickly. I have gained back 40 pounds. I'm also small so trying not to gain anymore. My GI at my 6 month follow up went into an explanation about hormones, somethings to do with I was malnourished and underweight and now healthy and my body is adapting. I don't remember her full explanation. It was post ileoscope so still a little drugged at the time. She acted like it was quite common.

The other two things that came to mind were either thrush/candida/yeast issue that may have initially affected her appetite and could be affecting weight. Or a thyroid issue. Has she had any blood work recently where her thyroid was checked? Depending on her age this might not be routinely checked yet.

I also know from my ostomy group that appetite during healing can be wonky and that many gain more weight back than they want. That is mostly the case in UC and Crohns ostomates.
Posted 10/8/2016 2:57 AM (GMT 0)
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.
Posted 10/8/2016 12:14 PM (GMT 0)
Perhaps her thyroid should be checked.
Posted 10/10/2016 3:03 PM (GMT 0)
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.
Posted 10/10/2016 3:56 PM (GMT 0)
I realise that there is still a lot of inherent reluctance on this, but MMJ is now prescribed to patients with poor (or non-existent) appetites. Judging by the reviews, the results are very encouraging. It doesn't need to be smoked nowadays. Might be worth enquiring about.
Posted 10/11/2016 4:41 PM (GMT 0)
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.
Posted 10/13/2016 2:09 PM (GMT 0)
For many of us who were very ill and malnourished for a long time prior to surgery, a huge weight gain after becoming healthy was realized. It's the body's way of forgoing starvation. Has your daughter tried sensible weight loss programs like Weight Watchers? Most of us find that with an approved weight loss plan in combination with an increase in exercise, that the weight does come off. Starvation and limiting fat and carbs isn't the best plan for long term weight loss. Just a thought.

Sue
Posted 10/13/2016 2:22 PM (GMT 0)
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.
Posted 10/13/2016 2:41 PM (GMT 0)
Thank you all so much for your wisdom.
K
✚ New Topic ✚ Reply