addressing the other end of this sinus and find out if the surgery I had from a month ago fixed the 2 holes i had in my pouch. If not, i'm done. staying with the ostomy i guess.
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Best of luck. Please let us know how you make out.
good luck. i suppose this could be the first of several needle/knife treatments?
YES, the other end of the sinus took 4 treatments if i remember correctly
had procedure with Shen and he discovered that the tip of j hole is still there. Surgery last month to close this and apparently it didnt work. I have no idea what to do now?
I'm sorry. I know that when I had my time with my loop ileostomy, I said to myself (my 19 year old self), "If you ever have to go back to this, you could. Never be afraid of an ostomy."
Luckily I haven't had to, but it's in my mind that I could be able to have one and be well.
Regardless of what you all decide or have to decide, I hope the decision leaves you feeling ok. Best of luck to you.
Luckily I haven't had to, but it's in my mind that I could be able to have one and be well.
Regardless of what you all decide or have to decide, I hope the decision leaves you feeling ok. Best of luck to you.
Hi, Poucho:
Sorry for your issues. Not to reiterate, Dr. Remzi reviewed my status he recommended pouch revision over Dr. Shen's procedures, and I'm back to a loop ileo for now.
I feel fantastic and it's hard for me to go forward with further operations, revisions, etc. I think I'm going to go to an end and be done with it, try to minimize surgeries, but meeting with Dr. Remzi (in Cleveland) for options (it will be a tough sell to go through more surgeries!) The other day a business associate that hadn't seen my in several months asked if I was working out! Another said that I used to look sick and now I don't ... the comments are reflective of how much better I feel without leaks and issue, antibiotics ... I do not take any medication except Immodium a few times a day (if I remember!).
In a perfect world we'd all have perfect pouches (or colons for that matter!) but IMHO, I am thankful for what the ileostomy offers. Best wishes.
Sorry for your issues. Not to reiterate, Dr. Remzi reviewed my status he recommended pouch revision over Dr. Shen's procedures, and I'm back to a loop ileo for now.
I feel fantastic and it's hard for me to go forward with further operations, revisions, etc. I think I'm going to go to an end and be done with it, try to minimize surgeries, but meeting with Dr. Remzi (in Cleveland) for options (it will be a tough sell to go through more surgeries!) The other day a business associate that hadn't seen my in several months asked if I was working out! Another said that I used to look sick and now I don't ... the comments are reflective of how much better I feel without leaks and issue, antibiotics ... I do not take any medication except Immodium a few times a day (if I remember!).
In a perfect world we'd all have perfect pouches (or colons for that matter!) but IMHO, I am thankful for what the ileostomy offers. Best wishes.
im currently in betweeen stage 2 and 3 surgeries.
managing fine with the loop ileostomy but a small sinus was detected on the mri pouchogram so takedown is delayed.
was very frustrated at first but to be honest life is good even with the ileostomy. it doesnt stop me from doing anything or eating anything so even if i never have takedown its not that big a deal. fingers crossed the sinus heals though because i want to give the pouch a try...
managing fine with the loop ileostomy but a small sinus was detected on the mri pouchogram so takedown is delayed.
was very frustrated at first but to be honest life is good even with the ileostomy. it doesnt stop me from doing anything or eating anything so even if i never have takedown its not that big a deal. fingers crossed the sinus heals though because i want to give the pouch a try...
Shainy, absolutely, good pouch > good ileo! 
Best wishes.
Best wishes.
knklhead, if you go to an end ileo, you leaving pouch in or having it removed? i hear having it removed is a huge surgery? shens needle knifes have worked so far in my case. it was the surgery performed by my surgeon that did not take. Shen does not understand why. he was in on my surgery. he said i have been his most difficult case ever.. thats encouraging..lol.. i dont think i could go through anymore surgery. i was so encouraged though. this surgery was supposed to be the end all. 2 procedures on my sinus then hook me back up. not looking good now
Hi, pouch. I saw your other post.
To your question, I've had about six "major" surgeries in the past three years and I think I might not have the pouch removed at this time. I understand I can do it later, if required. I am thinking of doing an end ileo though, if it's not too difficult -- but not sure if the unused pouch will deteriorate, can develop cancer, will leak a lot more as I age, etc. I am also not sure if it makes more sense to do it now when I'm 54 and healthier rather than later.
Again, sorry to hear that your latest procedure didn't work out.
To your question, I've had about six "major" surgeries in the past three years and I think I might not have the pouch removed at this time. I understand I can do it later, if required. I am thinking of doing an end ileo though, if it's not too difficult -- but not sure if the unused pouch will deteriorate, can develop cancer, will leak a lot more as I age, etc. I am also not sure if it makes more sense to do it now when I'm 54 and healthier rather than later.
Again, sorry to hear that your latest procedure didn't work out.
KNKLHEAD, let me know what doc says and what your decision is. If it would be better to just keep the loop, then one less surgery..
After having a lot of problems over the last couple of years, I am having my j-pouch removed Friday and going to an end ileo. I too am tired of leakage, irritation, fistulas, fissures, etc. I have been on antibiotics for the last 20 years. It would really be nice not have to take them the rest of my life. The surgeon is taking the pouch out because he says it causes too many complications to leave it in. Hope things work out well for all of you.
Holly Best of luck to you and please report back how you do. There are many of us in similar situations debating pouch removal. I have been on antibiotics for four years straight and struggle with fissures and chronic sticture and pretty constant anal irritation and disrupted sleep as well. Sometimes I seem to go along ok, but if I miss a couple doses of antibiotics or try to stop taking them I am a mess for over a week solid in agonizing anal pain with numerous fissures and cuffitis mixed w pouchitis. Lately I am also experiencing chronic tailbone pain which does not surprise me. It is not fun.
I wish you the best. Where are you having your surgery done ?
I wish you the best. Where are you having your surgery done ?
I am having it done at the University of Mississippi Medical Center. They have a top notch surgeon there. I know it won't be easy, but I don't want to face all of these constant problems anymore. I have a fistula right now and I am afraid that the area around my tailbone seems to be getting a fistula also. Antibiotics work for a while but if I try to come off of them I too have pain, leakage, etc. For the past year I have been debating surgery and finally worked up the courage to have it done. Someone called today and asked how I was feeling and I said like a cat on a hot tin roof. My anxiety is getting worse as Friday gets closer. The doctor said anywhere from four to seven days in the hospital. The surgery itself will be from four to six hours depending on how much my pouch has attached itself to other organs in my body. Thank you for your good wishes. I will post as soon as I am able to. My husband plans to take his computer to the hospital to keep him company. LOL
Holly, I have a perianal fistula. While my pouch is "pretty good," we are trying Humira for my pouch changes and IBD symptoms. I'm no where near needing a pouch removal, but we're hoping the Humira helps close the fistula (if it responds and is truly an IBD related one, rather than a "structural" one)...
Did you ever try a biologic for your fistula? Would you ever consider it, to avoid surgery?
Did you ever try a biologic for your fistula? Would you ever consider it, to avoid surgery?
I have tried everything they have thrown at me and most of it will help for a while, but nothing has been a permanent solution for me. I talked to the surgeon last year and backed out of surgery. Unfortunately this past year has been one problem after another. I have had a fissure, a fistula and 2 dilations along with four different antibiotics this year alone. Diagnosed with IPD and pouchitis and then the constant leakage. Right now Cipro is holding me, but from past experience I know that will not last for long. I am sixty six and know that sooner or later I may have a situation where I may be laid up for a while or have to go to a nursing home. They will NOT keep me clean and with my leakage my bottom with end up septic. Realistically that is what I may be facing and I am too independent to want to be dependent on someone else to take care of me. Each of us has to do what is right for us. I pray that you do well on your new medication and that you won't have to face what I am facing. Wish me luck! And if you are praying person, please lift me up to the Lord. Hopefully by this time next week or a few days later I can post how everything has gone. My GI said that I should feel better in general because I have had this low grade infection for a while now and once the pouch comes out that will be gone. I sure hope so.
My GI said that I should feel better in general because I have had this low grade infection for a while now and once the pouch comes out that will be gone. I sure hope so.