Rosemary progress, yeah!

Hi,

met with my 2nd opinion surgeon today at the place I have been going. He was fabulous. open, warm, caring, listened, and VERY impressed with all my issues as of late. He said more workup is warranted and we are going to do the ileoscopy May 22 the soonest time. He tried to see into the stoma today with a rigid scope but it would not fit in.

He did say that the stoma did not look swollen to him as a surgeon, but as I am the owner of it, then I have seen it the most. So glad I got in to see him today. He seemed concerned about my weight loss, pain around the stoma when I eat, and my recent hospitalizations, and sensitivity of the stoma itself as the small bowel has no nerve endings. Mine has been sensitive since it swelled March 11.

He said it's not likely that I have a narrowing at in back of the stoma (stenosis) as if I did it would have appeared on the retrograde enema xray as dilated bowel behind the stoma because the dye could not get by the stoma on the way out and would have backed up on the pics they took of my stoma emptying the dye. That made sense. BUt in light of all he agreed further workup indicated. If nothing shows on the ileoscopy it would I guess mean that this issue has turned functional.

TO add to the irony, this morning, I ate an egg and two toaster pancakes, juice, and coffee very early. I did not get the classic pain then I sat and rode for two hours. I told him that was unusual as solids have been giving me pain lately. BUT none this a.m. Sure hope he can get me sorted out, BUT important thing is he was warm, caring, had a plan, and wanted to see if he could help. Mark of a good doc. So glad I got second opinion. I remembered he was head resident when I got my ileo and he was very nice back then. SHOULD have picked him to continue care with when my original ileo doc retired. BUT went with someone with more years experience. BUT as he was in his first year on staff as real doc when I had to pick a new doc, I should have viewed NEW in practice can be GOOD!

SO that is the update from here.

Rosemary

Bland foods, high protein stuff, and taking it easy. Not too much else to do. This a.m. ironically I had egg, pancakes, and milk and felt OK. TOok a LONG Time for that to pass through me but did it OK. Wouldn't it be something if the cranky surgeon was right and that all this was "functional" as in my guts slowing down rather than a mechanical issue with the stoma?

BUT the stoma would not swell with a functional issue and I had no gut inertia in the beginning before the surgery that necessitated the ileostomy. SO who knows? But at least someone in my corner. So glad of that.

Sooo tired. ONly about 4 hours of sleep last night. GOing to head to bed early tonight as in right now and hopefully sleep right through.

Rosemary

 

Yay, Rosemary.   Glad to hear you like him and things are underway

 

Something interesting. The new surgeon who listened though didn't think stoma looked swelled to him but said I am more familiar with it and did think it odd that the stoma itself was sensitive when touching it only with a gauze as they are not usually, with no narrowings behind it on the other tests, I am thinking this COULD be a skin level stenosis? Stoma being squeezed at the skin level making it swell and be sensitive. I think I saw some post somewhere saying skin level stenoses are an easy fix where as fascia level (Deeper stenosis) takes a major revision?

JUst guesses upon reflection. I will see if I can get his notes. I think he was rolling some ideas together in his mind as he was thankfully very focused. BUT at least things are on the way and I was HEARD.. I SHOULD have cued and gotten second opinion consult soo long ago. Rosemary

YaY!

Also gas passes with little squeely sounds. This is the sign of a stenosis. Rosemary

Hi Blue,

I just called his office and got the secretary who I guess works for all the surgeons. I told her the new consult was all for helping, was going to do the ileoscopy but it was not til May 22 and I wondered if it could be done sooner if any cancellations. She said is HE aware of this date? I said No because after my appt concluded his nurse came in with the date. The secretary said she would email him the date I was given and see if I could be put on cnx list sooner or if he thinks sooner is better. Then she took my tel number.

I can see where the secretaries get the hang of communicating direct to the docs as they likely are not aware of when different things are being scheduled. This secretary feels for me I can tell. Rosemary

Hoping he responds to secy's email. RJ

Self-advocacy is key! My surgeon does part of his own scheduling. His secretary does all the office visit scheduling and he does all of his own surgical/exam case scheduling. He's in private practice. I guess all doctors are different, and maybe if their in a practice or not. So, since yours sounds unaware, bringing it to his attention would most likely cause a new date....fingers crossed!!

Post Edited (windy city) : 4/27/2012 12:53:52 PM (GMT-6)

Rosemary,

I wont go into detail but....
c'mon you wont starve to death nor die from bowel rupture. If you can tolerate liquids you can have all your nutriens by high dense caloric drinks and a liquid diet cannot cause a bowel rupture or any other life threatening event in your case.