Bariatric Surgery with an Ileostomy and Crohn's Disease

Hi everybody,

I have had my permanent ileostomy due to Crohn's disease since 2019. Ever since then, I have been gaining weight and have been trying to lose it. It is a losing battle since it keeps going up no matter what I do.

I tried to exercise, but that caused a ruptured prolapse. They fixed that, but I also had a parastomal hernia that got so bad they had to fix it a year later. I got a 15x10 mesh, but that didn't help. Six weeks later, the hernia was back, and they fixed it a few months later with a 20x25 mesh.

So far so good, but now almost 10 months later, I am starting to have issues again. My almost year-long dietitian/nutritionist program to help me lose weight doesn't help. Now the surgeon suggests that bariatric surgery could be an option and referred me to another doctor to discuss options.

Is there anyone here who also has an ileostomy due to Crohn's and had bariatric surgery? How is it going? Any complications?

For reference, I have no issues with malabsorption of pills, vitamins (except B12, but I get injections), hydration, etc. Apart from the weight issues and the hernia, I am the ideal ostomy patient.

Would love to hear from you

A permanent ileo since 2019? Me too! But since 2016.

Hi. Welcome. I must say you are the first asking about this. I'm sorry I can't help you out. But I can say sit tight; those who do have this will chime in. And the welcome wagon approaches...👋

Welcome. Yours sounds like a complicated question and situation. I would think with the mesh it might be hard to do the surgery. Maybe not though. What do I know. I haven't had that surgery. Sorry I can't help. Maybe someone else here can offer you some advice on the matter. Hang in there. I am sure that whatever is right for you is what you will end up doing.

Hello there. My ileostomy, due to CDiff/sepsis, was in Nov’23 and my bariatric surgery (Roux en Y, laparoscopic)was in 2003. So I can’t speak to having the ostomy prior to bariatric surgery. I suggest you ask your surgeon to refer you to a nurse/dietician/support group so you will know in detail what the surgery and recovery entails before you make a decision. I was very fortunate to adapt to the major changes in diet but many people found it much more difficult. It helps tremendously to know in advance what to expect! (I lost 160 pounds in the first 18 months along with losing my high B/P and pre-diabetes. I did regain 50lbs, as expected, but stayed healthy.) 

Please do let us know what you decide about having the procedure. And I’ll be glad to answer your questions about life afterwards. 

Now, here’s where my experience takes a crazy leap: Six months after the ileostomy, I was diagnosed with MDS and have been having monthly chemotherapy. I’m now struggling to GAIN weight! After a lifetime of obesity! God really has a warped sense of humor! 

Update: I had a gastric sleeve on the 8th of April. Gastric bypass wasn't possible due to the two mesh repairs I had for the parastomal hernias; everything was stuck, and proceeding with the bypass could have become lethal. So during the surgery, they opted for the sleeve.

So far, I have lost 54.5 pounds, and I am feeling very good. The surgery didn't affect my output from my ileostomy and didn't affect my Crohn's.

Drinking enough is still a challenge, but with my Stanley cup, it is much better to handle since I can only drink hot drinks or icy cold drinks. Eating meat and potatoes/rice/pasta is also a challenge due to the density of it. It will get better in the future.

Mashed potatoes are perfectly fine. Fruits, veggies, dairy, etc., are very good and taste even better than before the surgery.

If you are like me and you tried everything to lose weight, and the extra weight causes physical issues, please consider getting this kind of help.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister