Sorry for your struggle.  Just so I understand, the surgeon wants to do a temporary Ileostomy, presumably to do some work on removing the scar tissue in your pouch?  What is the purpose of the temporary ileostomy.  I want to try to help you, and I want to understand better the surgeon’s game plan.

the original plan last week was for a GI to do a joint operation with my surgeon to do a scope and remove scar tissue, the GI never showed up, and scheduled me for a scope for her self, im guessing a joint operation wouldn't give the GI enough $$$ , in the last  operation my surgeon did a scope and a dilation, 4 days later im back to contractions and pain and i cant go to the bathroom like 2 days went by nothing was coming out, so i send a message to the GI who bailed on me and i thanked her for not removing the scar tissue when she had the chance, NOW its a different story from my surgeon, she scheduled me for a major surgery to put back a ileostomy, you know to cause me more pain and more problems i advised her there's got to be another way, and why change the plan from removing the scar tissue now its oh we gotta give you back a ileostomy

  I all see is this

1st: temporary ileostomy

2nd: Office visit you knwo cauyse when you have surgery you have to have a follow up appointment

3rd: Wait for the GI to schedule a scope and just a scope no you know surgery to remove the scar tissue they just have to break up the operation into several soo ill wait 3 weeks probably more liek 4 months until that appointment

4th: follow up appointment

and the last words ill hear is "sorry steven there was nothing we could do to fix the structure im so sorry" some Dr's they love giving  bad news.

5th: schedule for removal  of j pouch and back to life time ileostomy problem is i wanna work again some day and i will not work with a ileostomy im depressed to much i feel destroyed with it ive  attempted so many times to OD on pills the ileotomy makes me so sick and ill when i have to empty it its just unhuman and disgusting

Okay - so the surgeon wants to declare the pouch a failure and remove it and give you a permanent end ileostomy.  That does seem aggressive, but of course I am not a doctor.  Interestingly, most surgeons are very reluctant to remove the JPouch you both worked so hard to build.  I would seek a second opinion, and want to know why the scare tissue in inoperable.  Is there any way to save to JPouch?  I had erroneously  assumed that she was creating the ileostomy as a temporary diversion to work on fixing the JPouch.  I think I would first set up a meeting with the surgeon and bring a friend or family member to listen.  Then get a second opinion.  JPouch removal is a big deal and should be carefully decided.  Also, if you unfortunately needed to live with an ileostomy- a million people live excellent lives with it, after an adjustment period.  Sorry things are so hard.  Let me know how you proceed.

no shes want to do a temporary ileostomy and claims it just to remove scar tissue HOWEVER she assigned a GI to do a joint operation last week to remove the tissue the GI called a week before and said she wasn't going to do the scar tissue this time to see how the dilation go's this was my 6th dilation so i already know how it go's, i actually believe i am over dilated now,  but after 6 dilation's of course the scar tissue gets worse, the point is, i complained to the GI for not showing up and causing me to back up once again then when my surgeon got back from vacation the sotry changed to "oh now we have to do a temporary ileostomy to remove the scar tissue" this is BS, my surgeon said its a recommendations by the same GI i told off do figure right

I am so sorry for your suffering! I love your mental mentality of not giving up, I think you are a warrior for not wanting to give up. I personally would have given up at this point and would go back to a ileostomy. I understand you want to keep trying and do everything you can do, that is a good thing. The only advice I can give at this point is : PATIENCE. If I were you, I would get second and third opinions with other colon surgeons and gastros ASAP! I want you to look for help immediately before things get worse. Call the colon surgeons and gastros in your area and do not be afraid to drive far out if you have too.

Good luck honey and keep us updated

REMEMBER TO TAKE MEDICAL RECORDS TOO TO EACH DOCTOR.

thank you Lauren for the kind words i am extremely upset with my surgeon and the NP because they allowed me to suffer for over a year no pain management period i had to beg for 500mg of ibuprofen and finally after begging for it the NP give me 2 days of it i later found out by mt primary doctor that was a no no because ibuprofen causes all kinds of problems for someone with a j pouch these people are so rotten check this out, when the preformed my take down surgery ZERO PAIN MEDICATION NOTHING ZIP ZERO, i was screaming as loud as i can demanding they put me back out or kill me then they used super long needles and injected them into my stomach with something which did nothing btw folks this was at strong hospital in Rochester NY the nurses are horrible rotten to the core. you all know how painful take down surgery was wel maybe not cause im sure you were given something for pain.

and yes i am going to stay strong my pouch is in perfect condition there is nothing wrong with it, its just scar tissue keeping the output from coming out its just scar tissue i did have maybe 9 weeks total of what i consider good time out of a year and 4 months with my j pouch and i love it, its perfect i know this is what i want and im to young to live with a ileostomy, i have half a life to still live, i cannot menially accept a ileostomy, i want one sometimes when i am in distress like fire burning discharge is like a pain level 20 yeah not 10 but 20 its bad!!!!! pain.. feel like a lit match every time stool passes the rectum i mean i just cant even describe the pain.

@StevenChar78 posted:

thank you Lauren for the kind words i am extremely upset with my surgeon and the NP because they allowed me to suffer for over a year no pain management period i had to beg for 500mg of ibuprofen and finally after begging for it the NP give me 2 days of it i later found out by mt primary doctor that was a no no because ibuprofen causes all kinds of problems for someone with a j pouch these people are so rotten check this out, when the preformed my take down surgery ZERO PAIN MEDICATION NOTHING ZIP ZERO, i was screaming as loud as i can demanding they put me back out or kill me then they used super long needles and injected them into my stomach with something which did nothing btw folks this was at strong hospital in Rochester NY the nurses are horrible rotten to the core. you all know how painful take down surgery was wel maybe not cause im sure you were given something for pain.

and yes i am going to stay strong my pouch is in perfect condition there is nothing wrong with it, its just scar tissue keeping the output from coming out its just scar tissue i did have maybe 9 weeks total of what i consider good time out of a year and 4 months with my j pouch and i love it, its perfect i know this is what i want and im to young to live with a ileostomy, i have half a life to still live, i cannot menially accept a ileostomy, i want one sometimes when i am in distress like fire burning discharge is like a pain level 20 yeah not 10 but 20 its bad!!!!! pain.. feel like a lit match every time stool passes the rectum i mean i just cant even describe the pain.

You are welcome love! At least you know are you are undefeatable. Please keep this in mind, if you ever need a ileostomy, please do not be afraid to get one, especially if it is going to save your life. We have to accept the things we cannot change, life is not always fair unfortunately, do not worry about things you cannot change, we do not need more stress. I hope you do not need a ileostomy, but IF you do, rock it

I am so sorry that you are suffering this way. It also sounds like you are not getting adequate communication with your providers. It really is their job to be sure you understand what their plan is.

It sounds like the original plan was to attempt dilation of the stricture under anesthesia. Usually this is done with a balloon or metal sounds. There is no need for a diverting ileostomy for that. Then it seems that they intended what is known as stricturoplasty. This is not a minor procedure and can be very painful if the stool is not diverted while it heals. Another option they use is what is called pouch advancement. It is when they remove the retained rectal cuff and reattach the pouch closer to the anal verge. This is necessary is they cannot easily break up the ring of scar tissue. Again, a diverting ileostomy is usually required.

Either way, a second opinion seems warranted or switch to another surgeon that may communicate with you better. The are a number of people here in the New York area, so hopefully you can get some recommendations.

Jan

wow thank you for this information ok so i do in fact need a temporary ileostomy yeah i have surgery on weds at 1am, the horrible trauma from the last surgery scares me to death, i mean the take down surgery was pretty painful

  This last year and 4 months have been hell for me, over 3 blockages 2 of them very serious and the lack of treatment from the NP at the surgery center didn't do a darn thing to help me, all i got was a simple im sorry your in pain, then when my surgeon started me with pain management, when she was on vacation the NP had another nurse come in to explain the home dilatation kit  this Nurse who wasn't there to go over my meds screamed at me because my surgeon started me on pain meds FINALLY after all this time week after week of pain, this was a total set up by the NP who neglected my health and treatment and hid information from the surgeon by not telling her anything, it took over 2 months i had extremely burring discharge and after telling the NP over and over again i had a appointment and told my surgeon and she prescribed me cholestyramine and it does work most of the time not always but it works

   Im just really disappointed with everything I've gone though it has effected my relationship with my son he has lost 15 days of school because i couldn't get out of bed because of pain in my pelvic area (the j pouch) i hope just that this temporary ileostomy doesn have another blockage at the stoma site i guess i just have a history with these blockages their just so bad i cant even explain it .

Thank you again for the information seems very clear and i understand it now god bless you

Sadly, many brilliant surgeons and other technically competent providers completely fail in their ability to really “hear” their patients. They are not terrible people, just not very strong on empathy or picking up on nonverbal cues. I am actually a pretty terrible patient, because I tend to sort of clam up when I see my doctors and act all cheery, like I haven’t a care in the world. I have to force myself to be honest about what was bothering me. I am much better with my emails.

Anyway, I hope things improve for you and you get the relief you deserve!

Jan