Update

[Guest guest]

Confusion is the word of the day.

Made numerous phone calls yesterday to Cleveland, Cincinnati and to my PCP.

Doing everything in our power to get answers and get the appt moved up for

Cincy. It came down to if a doc. called and spoke to the doc at Cincy then the

appt could be moved up, but that was the ONLY way. Called my PCP, and mito

doc. and asked both to please call and as far as I know neither have done so.

My sis is going to Cincy tom for work and would be more than glad to have us

along for company. It just seemed like the perfect plan, but no doors are

opening for this to happen.

Then today the surgeon called. It was from prodding from my PCP but he DID

call. He said that the total colectomy with IRA could be done but not

laprascopic. He said it was just too dangerous as I have scar tissue from the

first

surgery, had my rectum removed and recontructed with my transverse colon, and

it's hard for young people to recover from the laprascopic because of the

carbon dioxide used to inflate the abdomen. All in all he said it's my decision

and he will do as I wish, but he still would like for me to do the

appendacostomy first. He said I would have 3-4 BM's a day after a total

colectomy and

is afraid that I would end up reverting to an ileostomy and he doesn't want

that for me. I think 3x a day would be great. Then I could eat really well 3x a

day. That doesn't sound awful or unreasonable to me. Ultimately I have this

huge decision to make again and have no idea what to do. I had wanted to get

a second opinion from Cincy but don't feel like I can wait a month for that

appt when I'm feeling so miserable and continuing to lose weight. The

colectomy with IRA would be like having the exact same surgery I've had done

all over

again. It would involve opening up the same incision, a foley, pain and long

hospital and recovery time. At least (I think/hope/pray) that there would be

good at the end of this surgery.

UPDATE- while I was typing this my mom got intouch with my mito doc. and is

calling the GI at Cincy NOW. This is going to be my answer. If Cincy can see

me this week I'm going there, if not then I'm going to Cleveland for surgery

next week. I guess I will be missing my 21st Birthday either route I go.

Something tends to happen nearly every year right around this time. Mom says I

should start packing as we are most likely going somewhere very soon.

My mind is just spinning and my tummy is in a knot. Please God open the

doors and lead me in.

Thanks for your prayers and thanks for being so supportive!!