ADVICE WANTED --Total Colectomy and Stoma Revision

[Richie]

Hi everyone,

I’m a 28-year old, active female. Been a loop ileostomate for one year due to obstructive constipation and pelvic floor collapse as complications of hypermobility (Ehlers Danlos Syndrome). My recovery took a long time due to extensive weight loss but I’m still so grateful and much healthier than before. 

Anyways, I’m starting to prepare for my eventual total colectomy with preservation of the rectum and will be having my loop ileostomy converted to an end ileostomy at the same time. 

I’m hoping to have a minimally invasive procedure (“Keyhole” - laparoscopic or robotic). My first surgery was at UCSF in California, but I am willing to travel for the best care if needed. There is some possibility I will be relocating to the UK or Netherlands so anywhere in America or there is on the table. 

I’d love to hear from anyone who has gone through a similar surgery, especially the total colectomy and stoma revision at once — what was your recovery like? Did you have it done laparoscopically or robotically?

I’m also hoping to learn from your experiences about:
How you chose your surgeon or hospital, will take recommendations if you had a good experience with minimally invasive!
What questions you asked and wish you’d asked beforehand
Tips for minimizing parastomal hernia risk (stoma placement; considerations for colon removal incision site such as out the stoma, through the anus, or through another incision; adding prophylactic mesh to the stoma, etc.)
Your biggest takeaways or lessons learned. I try to be pretty physically active too so feel free to include anything you considered along these lines.

As this will be a big step, I would appreciate your withholding any horror stories here. I’m so sorry if this has been your experience and I don’t need to be any more terrified than I already am. You might simply say, “I wouldn’t recommend X, Y, Z because…”

I’m grateful for any insight or experiences you can share — thank you in advance for helping me prepare as thoughtfully as possible.

Hugs, 
Amy

[Shamrock4806]

I can say with an illeostomy myself that it's quite different not having your entire digestive system in play.

You should really see an ostomy dietician beforehand because you need to be on a high protein, medium carbs and almost zero fat diet. You need to maintain your RDA vitamin levels (except don't take too much magnesium at once) especially B12.

Because of the shorter digestive system, you need to eat small 4 oz meals about every four hours over the course of 24. So the more concentrated protein the better. Whey isolate protein powder mixed in lactose free milk and/or Greek yogurt (even flavored) is your best friend. This allows one to eat smaller regular meals without a lot of "bag issues"

Illeostomy output is often very runny, dehydration is a serious risk so knowing how to prepare your own oral rehydration solution (or you can buy prepackaged ones) is essential. Electrolytes loss is common with an ileostomy.

The illeostomy diet is rather restrictive because of the potential for clogs, diarrhea, pancaking and gas. An ostomy dietician can give you all the details or you can read my two links about it.

But once mastered you'll be fine and avoid all the problems of the rest of your defunct system.

Read my first post in this thread.

viewtopic.php?t=27800


As far as the physical activity, noting strenuous that can cause a hernia. You don't want one of those, especially behind your stoma. Your not going to feel as strong as you were for quite some time afterwards, maybe never, but the high protein diet will help.