Skip to main content

6 replies

new meds....if these dont work...its back to an ostomy!??

dgtracydgtracyMember
Had another doctor appointment this past Friday, 6/20/14 to find out why 2 weeks after having mucosectomy bathroom trips were having less and less stool, straining started and actual trips were still pretty high. She felt comfortable enough for me to start on Canasa and Bentyl. Things have improved a little bit, hopefully given more time it will improve more.

If these meds do not work she has said she wants me to disconnect the j pouch, remove more rectum tissue, hand sew it something…I forget the terminology, and a temporary ostomy for a few months giving pouch and that area a rest. if she disconnects the pouch and I have that ostomy what do you think my recovery time would be? I would like to go back to work pretty fast after getting the bag, financial reasons, I have already used most of my primary savings while recovering previous surgeries.

Just because I feel better by writing my feelings on getting the bag are mixed…on the one side I like the j pouch because I at least look normal, and if it was functioning properly I would feel more normal, on the other side I feel like the j pouch is hindering my lively hood. I have a boat that Im afraid to go out on because worried about bathroom trips, going out always looking for the bathroom..for the most part I stay home because im scared of urgency issues that still arise, or what if the bathrooms are being cleaned/worked on?

Ostomy on the one side I like because I wouldn’t have to worry about the bathroom trips the same way, emptying before going out, I slept a full nights sleep with the bag never with my j pouch..down side is with my bag (please don’t give me grief for this) my self esteem was pretty much gone from the first time I had a bag, I just felt pretty bad about my own image. I think this time around it might be different but I just don’t know. Oh…and bag change days…….lord knows taking the wafer off my skin hurt so freaking bad…it wasn’t until ate in the game I would shave the area nicely where the wafer goes, live and learn I guess. Idk…

Cliff notes:
Question: whats the recovery time if she disconnects my pouch and gives me ostomy? When can I go back to work with the ostomy? I’m in IT dept and have it fairly easy in terms of what you do at a job…….
Original Post

Replies sorted oldest to newest

C chiromancerMember
quote:
.for the most part I stay home because im scared of urgency issues that still arise, or what if the bathrooms are being cleaned/worked on?


This was a main reason I went back to an Ostomy, the J pouch was really contracting my life. I really pushed it with my dysfunctional J pouch, traveled and worked, it wasnt easy and I found I was considering each activity from a pouch function point of view, avoiding doing things and leading a pouch centered life. Could I have lived the rest of my life like that, yes but I choose not to do so.

I don’t think the "visual" issue is nothing. I think it very important for some people and it is a real consideration particularly if you are young. It most definitely factored in to my original decision. I sure wish my J had worked out but the ileo has allowed me to resume all my activities with little thought to what hangs on my side.

It sounds like your surgeon is contemplating pouch advancement after some rest with loop ileo. I would say you likely should be able to go back to the type of work you do within a couple of weeks after surgery for the loop. The advancment surgery I dont know about. Just make sure she gives you a good stoma. I would want a good 1 inch extension from the skin to the opening. Before doing anything I would check out and see what all your options are if the meds fail, how many surgeries and what the odds of success are. These surgeries take a toll beyond the pocket book.
Jan DollarJan DollarModerator, RN, retired
My interpretation was that the plan was to redo the pouch advancement, removing more of the retained rectal cuff (which I am still puzzled why that was not done the first time when some of the cuff was removed). My understanding is that the temporary ileostomy will be part of the pouch advancement. I would expect several weeks off work at least. If it is less, that is fine, but you should plan for 4-6 weeks. Then there will also be the take-down surgery 8-12 weeks after that.

Hopefully, the Canasa and Bentyl get things back on track though.

Jan Smiler
Jan DollarJan DollarModerator, RN, retired
Not really. It is basically a return of the UC in the retained cuff.

No offense intended to your surgeon, but I would opt for a second opinion before considering another surgery with her. The current plan may be correct, but I would want more reassurances, since the first repair did not seem complete. I know "stuff happens," but this seemed like a missed opportunity. It is not as if she was unable to remove more cuff, because she planned to take the minimalist approach.

Jan Smiler

P.S. I did forget to mention that if you are taking ANY NSAIDs, you need to stop them. They can really add to your cuffitis misery.
Last edited by Jan Dollar
dgtracydgtracyMember
No nsaids. Not for a few months now. My surgeon has been great at getting me to be seen and she's pretty compassionate when it comes to trying to get me on the right track she has called in another gi surgeon at the clinic when she did my last scope for her own second opinion so I feel like she is reaching out for answers as well.

Add Reply

Views: 159
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×