I am so very confused and worried! I just had surgery 2weks agao due to suffering from a constant UC flare for 3 years. I was going in thinking I was getting a 1 step J-pouch surgery and 2 weeks later when I went to the doctors to remove staples, I find out that I had a subtotal colectomy with ileorectal anastaomosis. My surgeon is on vacation until next week but I am freaking out because all of my colonoscopies showed active UC in my rectum and with the Subtotoal they keep the rectum. HERE is my question....Is this a typical procedure for someone with active UC in the rectum?
ANy help with this would be appreciated.

I'm sorry I can't be more reassuring, but I think, as far as most of us know (if I may to presume to speak for most of us), doing a sub-total definitely is NOT recommended (or maybe even accepted) procedure these days when someone has UC. It seems deceptive if you were not given the surgery you thought you were getting. Maybe you will have some legal recourse if things do not go well. Jan?

Hi JL,

I can hear the worry your written words, and I wish I had the information given to soothe your very valid concern. You are correct that UC through the rectum typically has the rectum (ileanal) removed to avoid future UC symptoms. For the next week until you can talk with your surgeon, please do not create a situation that causes you worse stress until you have all the correct information. There could be a mistake with what you were told at staple removal, or maybe the surgeon had reason to leave the rectum. Just try to trust that the situation will be resolved and your health will be improved. I am sorry for the concern you are under.

Take care.

That's better advice. It's a good thing there are cooler heads than mine around here.

First of all, who removed the staples? A surgeon or clinic nurse?

It would seem odd for you to sign a consent form for one surgery and to have a different surgery performed. Generally, if they leave the rectum in place, it is for a later creation of a j-pouch, but it is also generally not connected to the ileum. Usually, they do an end ileostomy for the interim.

The one instance that I can fathom for the outcome you think you experienced, is that you had an inadequate mesenteric reach, meaning that they may not have been able to free up the small bowel blood supply enough to reach deep enough into the pelvis for a j-pouch construction without any strain on the suture lines. However, if this were the case, you should have been told immediately and you should have been told what your options were long before discharge.

This all may be a miscommunication.

So, at this point, I think it would be best to wait for your surgeon to return and make sure he knows to contact you ASAP. Better yet, shedule an appointment now if you can. Another option you have is to find out who assisted on the surgery and contact him. If the pathology report is in the chart, it would certainly tell if the rectum was included in the submitted tissues.

Jan

Hi jl,
I could also be wrong but I too am having a little piece ( a cm or couple of cms I think) of my rectum left in to help with the J-Pouch function. I have pancoltis and the surgeon did a quick scope of my butt a couple of weeks ago and said I have one of the ugliest colons he has seen . He said I would have to be checked once a year (in his office) because of the little piece left in. I could be wrong but I am pretty sure that is what I am getting done in my surgery next Thursday.
hope everything else is going well.
David

o.k. now I am confused.
what is the difference between a Total proctocolectomy with ileal J-Pouch and a subtotal? I just checked my surgery papers and
I am having a total proctocolectomy.
sorry for being so stupid, didn't realize there was 2 types of surgeries.
any help greatly appreceated

You are correct David, most of us have a 1" rectal cuff. I was told there is a less than 1% chance of getting cancer or dysplasia in the cuff. My surgeon recommends yearly scopes with biopsies to make sure everything is good. Good luck with surgery David.

JL, I am hoping that whoever removed your staples was mistaken. I would hope that your surgeon would have told you if he wasn't able to create a j-pouch. I hope you find out soon,

janna

A total proctocolectomy removes the colon and the rectum (the 1-2 cm rectal cuff does not count).

A subtotal colectomy removes the entire colon, but leaves the rectum.

A colon resection would just remove a portion of the colon and join the ends together.

Jan

I understand what you are saying ...
Thanks a lot - you guys are great!!!
David

JL,
I had a sub-total colectomy with ileo-rectal anastomosis for UC in 1991. The surgeon was going to do a 2 step j-pouch, but then opted for the IRA for a few reasons. I was young and getting ready to start college. Since it is simpler, there was less risk for fertility problems and would provide quicker recovery, no ostomy, and no further surgery in the short term. He was, however, very up front with me that it was probably not a permanent solution and I'd probably need more surgery in about 10 years. I made it a little over 14 before getting my j-pouch.

If you do indeed have your rectum still, don't panic yet. You'll definitely want to keep up with your scoping and biopsies. For medical management, you can use ASA suppositories instead of oral meds, which shouldn't have many side effects. I used these for all 14 years.

-Kenadi

I had emergency surgery and my surgeon didn't know my case at all so without knowing exactly what my disease was, he left my rectum in just in case it didn't NEED to come out. Of course it did come out later because it did still have the disease but I actually appreciated the fact that he tried to salvage it instead of taking everything out not knowing all the facts.
Like everyone said, you don't really know what's going on until you can speak to the surgeon so try not to panic (easier said than done) and wait till he can clear everything up.

Thank you everyone for your support. I am still a bit worried. I ended up going to get my medical records from the hospital and infact I did have the subtotoal colecomy. I probably signed the sheet saying I would have it right before surgery too so I am very upset at myself. In the report the surgeon states that I have some rectal sparing (whatever that means). I have looked over all of my colonoscopy reports and they all state that I have active colitis. I tried calling my GI to see what information the surgeon has about my rectum that I don't but of course he isnt in until Monday. Thats the latest I know.

Rectal sparing means that there either wasn't disease in your rectum, or it was pretty minimal. This can mean a couple of things. If you had been using mesalamine or hydrocortisone enemas, you can have what appears to be rectal sparing, when in fact it is just a local improvement due to topical treatment. If not, rectal sparing can mean that you either really have Crohn's colitis or indeterminate colitis (which could later wind up being Crohn's). In the case of rectal sparing, a subtotal colectomy with ileorectal anastomosis could be indicated. With UC, the disease typically begins in the rectum and works upward. Chron's can skip areas. Again, if there is a reasonable chance this is Crohn's, the best solution is the most minmal surgery indicated.

What would concern me most is how you could have been lead to believe you were having a j-pouch, when it really was not in the plan. Something went haywire during your preop visits with the surgeon for this to happen.

However, at this point, you just have to wait and see how it goes. If it is true that you had true rectal sparing, this may work out for you. I guess you need to be on the lookout for rectal bleeding.

Jan

Funny how we all feel stupid for not knowing what all the different surgeries mean and entail, yet none of us would assume we could sit at each other's desks at work and understand what was going on around us. I don't think it's odd at all that we get confused by terms, not to mention sign consent forms without even knowing what we're signing for. I try to tell myself that the surgeons DO know what they're doing, they DO make educated choices and they DO opt for the surgeries they believe will be most successful for their individual patients. It's not easy leaving the controls to a virtual stranger, but at times I think we have to make a leap of faith and just deal with the choice they make on our behalf. I'm sure when you can talk to your surgeon, there'll be reassuring news for you. Good luck!