HELP

That sounds awful. I can't help much w/specifics, but it sounds like it's time for a second opinion from another gi and possibly a surgeon who you have access to. Something is not right.

Do you have a primary doctor who can help advocate for you? Can you email your surgeon, even though he's overseas?

Hope you find some relief, and welcome to this forum.

If you're in the US, usually a referral would come from the primary doc, not the specialist... at least that's how my insurance works.

Well, my doctor that did my surgery is in Afghanistan.. and I miss him terribly. What truly endeared me to him was the fact that he was the first physician who said his primary concern was giving me back my quality of life!
As for my primary, she won't do ANYTHING in regards to my stomach/bowels, as she doesn't want to overstep what the "specialists" are saying. But perhaps I will talk to her again.. that seems to be the way to go.
my biggest question is, what are the experiences of others who have had this surgery? I understand that recovery takes a while for any surgery, and my complications didn't help any, but at what point should I be able to eat real food without any issues? I know smaller portions, ect..and if I can eat something more substantial than yogurt, it is a VERY SMALL portion ( less than 1/4 cup) but that is only every 3-4 days without danger of constipation..and then I am sick to my stomach and vomiting for hours on end.
again, I am just interested in what others have experienced.. Thanks! you guys are being more helpful than anyone else I have encountered.

Asking your primary to refer you for a 2nd opinion is different than asking her to make decision on gi matters. It seems you need to talk to a surgeon, not a gi, about recovering from surgery.

But you might try to talk to your gi about specifics -- about how long is "wait and see" for him? Can he give you zofran or something else for the nausea or is the nausea something to be concerned about?

I'm concerned about your diet -- did you get any advice on that? You need a lot of extra calories (I was told 1000 per day) to help you recover, and more specifically, you need a lot of protein -- 1 cup of yogurt a day is not enough. Most people eat more than you're eating and still need to supplement with protein shakes or something like that, and if you can't keep them down, there are supplements like benecalorie that have a lot of calories with a small amount of liquid.

From reading the list, it seems like some folks who have had the surgery you did need to stick to low residue foods indefinitely (if you had a bag, it'd be normal to be introducing a lot of new things by now). So, that part might not be abnormal, but eating only one cup of yogurt a day is not normal. You need more nutrition than that, and that's likely a factor in delaying healing for you.

Are you sure the V8 splash is OK with you? Not sure what's in that, but if there are sugars or artificial sweeteners, they could be upsetting your system.

Hang in.

Sorry, I don't have first hand experience with your type of plumbing, but I am a little concerned about the juice...that's a lot of sugar and with modified plumbing could be the cause of the some of your extremes.

Have you tried the BRAT diet (or a modified version for gluten-free)? I think starting from scratch might be best diet wise but keep a journal so you have specifics as to what things do.

Are you dehydrated? This has been going on for a while so you body probably hasn't recovered from surgery like it should...I'd push for a second opinion. Did your surgeon that deployed work by himself or with partners? I'd have to assume someone is responsible for his patients while he is gone.

I hope you find some answers soon...and welcome to HW

Wow it all sounds kind of miserable at the moment. I just had illeostomy with entire colon out and bum sewed up tight.

I ate liquid diet for 8 weeks and then graduated to blended soups for another 16 weeks. Solids made feel sick all the time! I am on solids these days (2 1/2 years after surgery but still have major hard time with solids if I don't drink tons (gallons) of water with it. I guess I try not to worry about getting back to "normal" eating anymore.

You do need second opinion. Hope you can figure out how to get it.

My idea was to be as gentle to my digestive system as I could to help it get better. I know lots of people spend all their time waiting and praying for that day but hey there's more to life than great meals I have to tell myself. "Eat to live, not live to eat" someone told me and I have tried to remember that.

I am on basically liquid diet too. Not so fun huh? Remember there are protein powders to add. Gluten free ones. Show me the Whey is good. Rosemary

I'm happy to hear that you've gotten a referral from your surgeons office. I'm concerned as to the bloody stool and vomiting issues your presenting. I also agree that your not getting enough protein and calories in order to recover.

I, myself, had ileorectal anastomosis but was short lived and had an emergency ileostomy performed. I've had my ileo for 2 years come July. Can't give you any personal advice there. But I have a friend of a friend that, same time as you in January, had a total colectomy with ileo rectal anastomosis. I visited her in the hospital and she then seemed fine. I heard from her in March, she called me crying and frustrated. She gets up at all hours of the night, can't go out for dinner or out anywhere where she would be uncomfortable, as she's in route to work stops at fast food places to use the bathroom, pains that she doesn't know what to make of them so she was hospitalized 2x. This isn't what she expected. Spoke with her recently and she's gotten alittle better. I gave her advice on immodium and citrucel because of her diarrhea and constipation, and a low residue diet as she wasn't on any. But comparably, she didn't have the vomiting and bloody stool episodes. That is concerning and glad your going to be seen by a surgeon that will help in this recovery.

And about the loud stomach....mine was always loud, even before surgery. I always have to apologize

Have you ever done a food log to see what upsets your stomach and how bad the consequences are? You probably have, since yogurt is the end result. I still question the V8 splash....if you were having that in addition to a healthy diet OK. But your only having yogurt, a whole bottle of that, and water. The splash's are so diluted with water so it doesn't provide the adequate nutrients and has added sugar and high fructose corn syrup compared to the V8 vegetable beverage. I've been juicing veggies and fruit for myself and my children for years now. Maybe you can substitute a regular V8 and a gatorade? Recently on another thread was a discussion of protein drinks and Ensure has a new juice drink. You definitely need to incorporate more protein...your weight has drastically decreased.

Best of wishes

Done the food log, nothing seems to "set me off"..I did eat 1/4 hamburger, and a tablespoon of pasta salad and 1/2 cupcake on saturday...then spent the whole afternoon vomiting, bloated, and in pain. So, today nothing... much, just some juice and a cup of coffee. Feeling a little better, but EXTREMELY tired...

Can't wait to go see surgeon! I will try to stay away from high fructose corn syrup, I try to anyway, but I will be more mindful of it now. THanks for all the advice. I finally feel like I'm not crazy :)

hello

i am no expert but from what you describe in your poo is not okay and to me the dark black /bloody etc sounds like old blood but more seriously could also be a blockage somewhere.  you shold get to see a colorectal surgeon asap as july is way too long to wait. i think GI are rubbish as this is colorectal. just my input.