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Posted 9/16/2011 8:51 PM (GMT 0)
Hi-

I've been searching for more information about an upcoming colectomy, and there are so many conflicting definitions out there!

--I'm not sure if I'm having a total, or subtotal colectomy.  Of course, will check with Dr., but thought I knew, and now there are completely opposite definitions I've read.  Anybody clear on this?

--I'm REALLY  confused about the bag/pouch thing.  Dr. said he will attempt to connect the small intestine to the rectum=no outside pouch.  Some have you have seen my posts; I am TERRIFIED by having any outside pouch or bag!!  So...looked up some definitions, and can't get it straight.  Is total abdominal colectomy and ileorectal anastomosis what I described (pretty sure it's what Dr. said)?  I also found total abdominal colectomy anal anastomosis and couldn't tell if that meant an outside bag or not.

--Is a "j" pouch on the outside?

There are so, so many other terms out there that my head is spinning!  Could someone please help?

Thanks,

K

Posted 9/16/2011 9:44 PM (GMT 0)
Hi K I know this can be very confusing!! Not sure I'm the best person to answer these questions as others on here are more experienced and knowledgeable, but I'll give it a go.. ;-)

A total colectomy is where they remove your colon and attach the end of your small bowel your rectum. The 'join' is called an anastomosis. Sometimes a surgeon will leave an inch or so of colon even though you're effectively having a total colectomy. Some remove the whole colon.. think it depends on the surgeon and the condition. Worth checking what your Dr is planning to do.

The ileum is the end of the small bowel - hence the term 'ileorectal anastomosis' or IA.

J pouch: Your colon is removed and instead of just connecting your small bowel down to your rectum, they make a pouch (on the inside of your body) out of some of your small bowel. This 'pouch' is inside of your body and above your rectum and acts as a sort of resevoir. It usually has to be done as a 2 or 3 stage surgery.

Ileostomy: This is the bag on the outside of your body. The end of your small bowel (Ileum) is brought through your stomach to create a stoma. Your colon is either removed or bypassed. This can be done sometimes as a temporary measure while everything else heals properly inside and to avoid a life threatening leak from the anastomosis. You wear a bag over the stoma to collect the 'output' (poop!) and empty/change as necessary. You might need one as a temporary measure. Again you need to ask your surgeon.

All I'd say is please don't be terrified about having a bag. It really isn't that bad and not anywhere near as awful as you might imagine now. There are lots of us on here who live healthy and very normal lives with an ileostomy. Be prepared that you might need one for a short time.. but then again you might not. Check with your surgeon. But it's honestly not that bad! In fact I forget mine is there most of the time.

Hope that helps and hasn't confused you further.. I'm sure someone will be along to correct any inaccuracies!
Good luck
Sarah
Posted 9/16/2011 11:43 PM (GMT 0)
Anywhere that says anastomosis means ends of intestines are hooked together (no bag).

You need to get this clear with your surgeon.

Outside Bag not the end of the world, but you do need to know what you are heading for.

Call doc, email, fax, phone him/her, get answers. Ironmum is right on in her definitions. Good luck, Rosemary
Posted 9/17/2011 1:25 AM (GMT 0)
What did the doctor say you were having? You may want to create a signature on your profile page to tell us what you were diagnosed with, what your surgery is going to be etc, so you don't have to keep answering this. Ironmum's definitions are great! the difference between the two procedures you listed, 1. total abdominal colectomy with ileorectal anastomosis vs. 2. total abdominal colectomy with anal anastomosis is in the second one your rectum has also been removed. Basically the second one is a Jpouch although its usually called ileoanal anastomosis. #1 is for Crohn's patients, #2 is for UC patients (Basically) Very rarely people with Crohn's can get a Jpouch, but most surgeons won't do it because the risk of needing additional surgeries if the pouch becomes bothered by Crohn's is so high.

What I would suggest if you are unclear about what your doctor is supposed to be doing is schedule an appointment to see him! I you don't understand the procedure you'll be going under, he didn't do his job correctly to prepare you. Ask him to draw you a picture of what it is he will be doing, which organs will be removed and what is being attached to what. Ask specifically, "will I have an ostomy?" You should have been clear on this from the get go, so I think he didn't explain it properly to you. When you call, just say that you have some questions about your procedure and you'd prefer to ask them in person. Of course if you want instant gratification you could leave your questions to be answered later, but if you are this uncertain i think it best that you see him in person.
Posted 9/17/2011 3:42 AM (GMT 0)
Thank you, all for such quick replies, it seems the more I look into this the more confused I get, and it helps to get the real answers from people with personal experiences. I feel clear tonight, now, b/c of you all.
I guess I do know the answers from the Dr.s, surgeons, specialists, etc, but I just can't wrap my head around this or accept it yet. I don't even know how many times I've called them since diagnosis and sugery recommendation about three weeks ago. I just don't trust myself to get it straight at this point.
I had NO idea what the Sitzmark was for, expecting to be prescirbed another pill or diet. The test showed 21 out of 24 markers out of five days, and since I didn't have any BMs during that time, dr.s assume they just couldn't see the others. The Xray showed a "classic" pattern of markers thru my small intestine.
Beyond the shock, I'm dealing with being a very active 42 year old single mom of a wonderful 8 year old boy. I have a job that puts me "in the public eye" almost every day, and when I'm not working, I'm very private--it was hard to tell a doctor that I was constipated at first about 10 years ago. I'll have to have surgery 2 hours from home. I am allergic to all narcotics (seizure and vomit). I'm hopeful to meet with a pain specialist in Denver next week, and have researched a ton of alternatives.
So....you are correct about creating a signature line; I just did. It was so hard to write, I keep justifying away the way I feel. Since the diagnosis, it seems like the constipation, etc, has gotten 10X worse and I have a lot more pain in the lower left side--and I'm sure it's mostly due to stress.
Sugery will be in Denver Oct 10, total colectomy with 5% or less chance of outside pouch, according to sugeon--but it's one of my biggest fears. He says he will connect the small intestine with rectum if all goes according to plan.
Sorry for the long post, and thank you so much for being here with me through this!
K
Posted 9/17/2011 4:48 AM (GMT 0)
they have already answered your questions, i just also want to add to not be afraid of life with a bag.  I know thats not what you want, but just in case, please be aware that its not the end of the world, and noone will know! and you can do whatever you want!

good luck

Posted 9/17/2011 10:43 AM (GMT 0)
Hi KVail - thanks for explaining your condition and problems.. that sounds really rough and especially being a single mum too. :-(

I had my ileostomy (outside bag) for what was essentially colonic inertia and can empathise with the misery.

You are definitely doing the right thing having surgery.. sadly there isn't any other option. BUT your quality of life will be a million times better once your nasty colon is gone. I can guarantee that!

You do need to understand that without a colon, your stool will be much more loose and (certainly to begin with) you could be visiting the toilet many many times a day, and also with urgency. That is something you need to discuss with your surgeon. Not everyone has that but it was the main reason why I chose not to go down that route, as I'm a runner and don't want to be tied to the bathroom.

J Pouch is something that probably would be an option for you, and I think you should ask your surgeon about this. It's normally excluded from people who have crohns but should be ok for someone with CI. Having a the pouch (inside) instead should reduce the number of times you visit the loo and create a resevoir to 'store stool'. Without wanting to confuse you further, you should talk to your surgeon about this before you go ahead with the colectomy and IA. There may be a reason why it's not been offered. It doesn't work for everyone though and there can be complications. And it has to be done as a 2-3 part surgery.

There are pros and cons of both and you might find people on here who have had TC with IA and are fine. Suggest you start a new thread asking for experiences of those with Total colectomy with IA, v's J Pouch.. and gather some thoughts and knowledge.

Oh and regarding the pain, you can have a spinal block (rather like an epidural) for pain relief instead of being hooked up to morphine.. ask your surgeon.

This forum is amazing and everyone is very very supportive. I couldn't have gone through what I have without everyone's support and knowledge.

It's quite scary that I know so much now - only because of what I've learned on here... ;-)

Take care and keep us posted. Hope I haven't confused you further.
Sarah
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