Hi All!
I'm new here but not new to ulcerative colitis, ileostomies, or jpouches. I won't tell my whole story because quite frankly we would all be here all night. However I do have a major question and was wondering if someone here would know the answer?!
I have a jpouch with a temp. loop-end ileostomy due to fissula between jpouch and vagina. I have had this fissula for the last 6 years and have tried everything under the sun to fix it. I have no other options so I have decided to have my jpouch removed. I have a new surgeon here as for the last 5 years our province hasn't had a colon rectal sugeron and I've been traveling to Ontario for surgeries. Anyhoo, my loop-end ileostomy is on my right side and my surgeon wants to make my permanent ileostomy on my left side after she removes my jpouch. I don't understand why she wants to do this and when I asked her why she said because it would be easier for her. What is this all about? I told her I don't want it on that side due to a vertical incision that dents in on that side which would be in the way. I've google all night about ileostomies on left sides and have come up with nothing. I don't want it on my left side because I know I will have problems with this incision that dents in. My surgeon however still would like to put it on that side. (she hasn't even looked at my stomach yet to see what my concern is) Anybody have any thoughts why she is so determined to place it on my left side? What is easier about that (putting it on my left side)?

This message has been edited. Last edited by: Annewithane,

I'd be looking for a second opinion from a surgeon who will at least look at your stomach. Yours doesn't sound like she's very interested in your input.

Hi,

I had a long standing fistula, also, which was finally repaired using the graciloplasty procedure. My situation now is that scar tissue has formed near the sphincters which is keeping them from closing tightly, and thus, I experience small amounts of fecal leakage 24/7.

At my last appointment in November with my colo-rectal surgeon, I learned that a permanent ileostomy was the only option left, even though I have an excellent working j-pouch.

I have a scar/indentation on my right side from previous temporary ilestomies (3). My surgeon had me stand up to look at my abdomen and recommended that the permanent ileostomy be made on the left side because it was smooth belly, with NO scars or indentations. He is a Cleveland Clinic colo-rectal surgeon. His decision to use the left side just makes more sense than your surgeon wanting to place a permanent ileostomy on the left side where you DON't have a smooth surface.

I know you must be feeling frustated right now, but I would take the time to get a second opinion before I would undertake this surgery. It is so permanent.

As for me, I'm going to hang in and wait a bit longer to get my permanent ileostomy.

Caty

Hi Ann,

Have you had a barium follow-through examination to determine how your small bowel sits in your abdomen?

It could be that your surgeon thinks there isn't enough scope once she's removed your j-pouch to place the stoma on your right side. If you have a loop/end ileo then I would presume that it is further up in the gut than where your j-pouch currently is. She would probably want to preserve as much bowel as possible so may close your current ileo and use the ileum from further downstream.

She would also not want to disturb any more bowel than is necessary as this can lead to problems with adhesions. If the end part of your ileum is sitting on the left then she may not want to have to manipulate the bowel to connect the stoma to your old site.

I thought that my surgeon was going to have to move my stoma over when I had my last surgery to free off some really bad adhesions and a twisted loop of gut and fix a peristomal hernia but he managed to preserve the stoma where it was.

These are all questions you need to ask this new surgeon. She should be able to explain to you why she feels she can't do as you asked, but if she can't give you a satisfactory explanation, or listen to your needs then it may be better to go back to your old surgeon, even if it does mean you have to travel to Onterio again.

Good luck and please keep us posted.

Shell

Thanks Everyone!

Shell what you said makes sense but my surgeon has yet to explain this to me. I am just feeling really freaked out right now as my surgery date is next Friday, Feb .2 for the removal of the jpouch. This was all sprung on me yesterday when the ET nurse called me and wanted me to come in to be marked on my left side. I told her that I didn’t want it on my left side due to the indentation of a previous incision. She told me I had better call my surgeon which I did but she was in the OR all day yesterday. Her secretary told me I’d have to wait until Monday to speak to her about this. I told her secretary there might not be a surgery next Friday if I don’t get an explanation about this. The only thing my surgeon had told me about this previously is that it would be easier for her to place the stoma on the left side.(she said this without even looking at my stomach and I did mention at the time about my indentation) That’s when I decided to come on here and see if anyone knows anything about this. I am totally freaking out as I know if the stoma is placed on that side the indentation will be in the way!

Hi again Ann,

I do think it's a bit strange that your surgeon hasn't even looked at your stomach, but then maybe she is waiting to hear what your stoma nurse has to say once she's measured you up for your new stoma? After all, they do have to work as a team and she will be relying on your stoma nurse's expertise in placing the stoma.

I should also have mentioned that this is my second stoma. My loop ileo was about 2 inches above where my perminent ileo is now. My old stoma scar was really bad and deeply indented and I was really worried about how I would manage my new stoma if it was placed so close to my old scar. However, my surgeon simply freed off the adhesion under the skin which was making my scar so indented and now you can hardly even tell I had a scar there at all it's so nice and flat. Perhaps your surgeon is planning on doing the same?

It's sod's law that you should get the news on a Friday of all days! There's nothing worse than having to spend a whole weekend worrying about something simply because you can't speak to your surgeon until Monday! However try not to stress out too much about this. It will give you time to prepare for your conversation with your surgeon. Write down all the questions you can think of over the weekend and then you'll be able to address everything that is concerning you with her without getting too flustered.

Good luck and let us know what your surgeon says on Monday.

Take care

Shell

I had a meeting with a stoma nurse before my temp ileo was placed. My previous temp ileo was on the right and last was on the left. You might ask to see an experienced stoma nurse since s/he knows the difficulties that can pop up like the "dent" that you have. The nurse put a tiny tattoo for 2 different sites that the surgeon might use.

Lori

I am still waiting to hear from my sugeon. She is suppose to call sometime this afternoon, so I guess I have to play the waiting game. I'm just wondering since I already have a loop-ileostomy, why can't she use that site/hole? Why does she need a new site? I know I need to ask her this but I'm just wondering if anyone has any insight about this!

Finally spoke to my surgeon. I think there was miscommunication on both sides. Anyhoo, she had wanted to put the new site on my left side because she was worried about finding a hernia and also thought the hole might be too big for the end ileostomy. However, she now understands why I am freaking over the indentation and has agreed to use my old site on my right side. Thanks everyone for your comments and advice!

Hi Anne,

Well all I can say is phew thank goodness for that! Now you can stop worrying! I'm so glad that your surgeon has finally put your mind at rest. It's a shame she didn't tell you what her reasons were in the first place, it would have stopped you freaking out all over the weekend!

Good luck for Friday.

Shell