First, the radiology tech comes in. She can't quite grasp why I am there. She asks "So, what surgery did you have done?"
"I had an ileal pouch-anal anastomosis."
Blink, blink.
Ok, lets try this again. "They removed my colon."
A light goes off and she says "Oh, so then what is the surgery you are having in 2 weeks?"
Trying to keep it simple for her "They are going to reconnect my small intestines."
At this point she looks like she got it and we have a brief conversation about why I had the surgery.
I then feel the need to play it safe so I remind her "I have no colon or rectum."
Miss I-don't-listen then tries to tell me they will give me and enema to put the contrast in my colon.
"I have NO colon or rectum."
"There is a portion of your colon. . ."
"No there is not. Its gone. I don't have a colon."
"So what do you. . ."
"Basically my small intestines are connected to my anus."
"Your what?!"
"ANUS!" (I have never yelled that word at anyone before. There is a first time for everything.)
"Oh! Oh, okay then."
I know what I am about to say will make no sense to her, but I have to say it. "Also I don't have the typical loop ileostomy, I have an end ileostomy. So, if you try to put to much contrast in me, the extra will not flow in to my bag."*
Moments pass then "I think I'll go get the PA to assist with this." Thank God!
The PA comes in and instantly understands what is going on. At this point I am so relieved, until he says "Now, some contrast will flow into your ostomy bag."
"You know I don't have the standard loop ileo, right?"
"No, they always do a loop ileo with the ileo-anal pouch."
"No my bowel was perforated during surgery. I have an end ileo."
"Oh! Good thing you told me that!!"
If it was 2 decades earlier I so would have yelled "DUH!!" at him. As it was it took all my strength not to slap my forehead.
The PA tried to be a gentle as possible and promised they would only put in as much contrast as needed. As soon as he started the flow of contrast. my small intestines began cramping. The cramps were definitely out of the "uncomfortable" level and well into the "painful" level. Once they were finally done (which took about 30 mins) I was able to go to the bathroom to expel the contrast. Instantly I felt better. The results are being sent to my surgeon, and if it shows any leaks he'll (or actually his nurse will) call to reschedule the surgery. I am feeling pretty confident that we are all good and surgery will be as scheduled. September 23rd!!
*There are two main types of ileostomies. One is a loop ileo. With the loop, both end of the small intestines (one from the upstream half and the other one from the downstream half) are brought to the surface and can drain into the ostomy bag. With an end ileo, only one end is brought to the surface and drains into the bag. The other end of the small intestines, the downstream end, is stapled shut and left to float in the abdomen. Sorry that was the best I could do to explain that.
10 comments:
The good news: the pouch-oh-gram is over! Sorry to hear that it was both frustrating and painful, though.
OH MY GOSH!!!! Thank goodness you know what is going on with your body. I am glad that is over with. Sorry it was painful. Way to be strong tho Stephanie! Thanks for the description of how it all works. I think I understand. :> :} :) ;]
I just had the barium procedure done (pre-surg) and the jerkoff doc running the show looked at me at one point and said, incredulously, "Are you experiencing discomfort?"
"Um, YEAH. It's about as comfortable as it looks."
DUMBASS.
Wow! Just.....wow! Thank goodness you kept at telling them what you have and don't have. It's all over now though. On to the next step!
Steph you crack me up! You seem more knowledgeable than the 2 that were doing the procedure - I'm glad you spoke up. Hope there are no leaks and things go as scheduled.
Take care,
Aunt Paula
Stephers,
Sorry I havent posted in a long time, school started and I feel like I dont even sit down during an entire day. Maybe you should go into medicine after all this is said and done, you sound way more knowlegable than anyone at the hospitals!!! Hope there are no leaks! Love and miss you!
Jessi
Steph,
Welcome to the wonderful world of idiots in the medical community whereby you and I know more than they do!!!
Just wait until you start getting procedures/testing/etc.. done for FAP followup!! *wait for it*
Sorry for your pain and trauma. Now, that's over! Hang in there.
Charlie aka Chuckus from J Pouch Website
curious to know how your j pouch is performing. i go in for my pouch o gram tomorrow. hope you are well and thanks for sharing your experience. i am loaded with ammo for hospital staff as always. it's a shame but you do really have to be your own doctor in this country - unless you are at Mayo - what a great place Mayo is. best of luck. -D
Hi, thanks for sharing your experience and sorry it wasn't a more positive one. I have a temporary loop ileostomy and am scheduled for the ever famous pouchogram in a few weeks to check before I have a reversal of the ileostomy. Have to wait for the chemo to wear off before I have the procedure done. I think the letter I got said sedation was an option, from what you've said, it looks like it would be a good option to take! Thanks for sharing and best of luck to you.
Roberta
colorectal cancer survivor!
nice information on bowel diversion
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