I'm sorry to hear you are still having problems. I know how frustrating that can be. I've never had a fistula, but I'm sure someone here has. Good luck, I just want you to know I'm thinking and praying for you for some help with this. Is there a chance this fistula could close on it's own? I know this is also discussed on the J-pouch threads too.
Dave, how are you doing since your last post? Leslie, hoping you find relief soon. My BCIR surgery is scheduled for Dec. 17 in Florida.
Hello everyone, happy new year! Has anyone switched from a kpouch to a standard illeostomy? My third surgery did not produce desired results. I leak everyday and keep the tube in most of the time. The other night I was in the ER BECAUSE I couldn't intubate. The surgeon says the valve probably needs a revision. 1st valve revision 2013 . I could stay with the tube in 24/7, go for another revision or remove the pouch. Has anyone been faced with this dilemma? Thanks for listening.
So sorry you are having trouble with the K pouch. I had an ileostomy for 42 years and just had a BCIR on December 17. So far so good. I have talked to people who have had BCIR surgery after failed K pouches, and also those who go to the ileostomy. And also those who have failed BCIR's who get K pouches or ileostomies. Sometimes I wonder if finding another surgeon to make the revision would benefit people, instead of returning to the same one? So sorry you are having a lot difficulty. These are very important decisions and I hope you the best.
Leslie, I had a BCIR 2 years ago following 30 years with a j-pouch (high grade dysplasia made removal necessary). When I had to make a decision about procedures, I decided to go the continent ileostomy route rather than have an end ileostomy, my decision based on quality of life issues. I am very satisfied with my decision and would go back for valve revisions if necessary rather than have the bag. I concur with lifecircle about looking for a different surgeon. It is my understanding that Cleveland Clinic is highly regarded for dealing with problem pouches.
I had my BCIR surgery performed by Dr. Ernest Rehnke in Florida and can attest to the high quality care and personal attention I received there. In reviewing the list of BCIR patients who have agreed to be contacted regarding their experiences, I noted that 30 out of approximately 300 on that list were converted from a k pouch to a BCIR. This list along with a detailed information packet on the BCIR can be obtained thru their website at: www.bcir.com. I wish you the best for whatever surgical option you choose.
Bill
I had my BCIR surgery performed by Dr. Ernest Rehnke in Florida and can attest to the high quality care and personal attention I received there. In reviewing the list of BCIR patients who have agreed to be contacted regarding their experiences, I noted that 30 out of approximately 300 on that list were converted from a k pouch to a BCIR. This list along with a detailed information packet on the BCIR can be obtained thru their website at: www.bcir.com. I wish you the best for whatever surgical option you choose.
Bill
Hi Sharon. How are you feeling?
Its a mixed bag.
The blockage has been opened up and the hernia fixed so that is great but the pouch is not stable (yet).
Seems like it didn't stay attached but that is yet to be verified through tests. I now have the intubation problems that I had prior to it falling off of the wall...the tube gets hooked on something making it difficult to remove and causing bleeding (just a few drops), the tube is bent coming out and the direction is different when I try to put it in.
That said, when it works, it works great.
The hip pain is back...the sacroilitis is screaming at me. Must have been the bedrest + tramadol that had calmed it down for the 1st 2 weeks post op...now it makes it difficult to stand up or sit, walk or climb stairs...normal for me which I was hoping would dissapear once they lifted the pouch up.
Only goes to prove that I can be wrong
!
Stress isn't helping anything either.
I am back to working double time and a half...teaching over 35hrs/week plus prep and correcting + travel time...you don't want to know...it is rediculous...and I love it! I live for it and it makes me happy (not so sure about the students). I need to be out all day and stay busy...so I don't think about the pain.
Life is as 'normal' as it will ever be for me and I can accept it if the rest is fine...
How are you doing? How is life?
Sharon
The blockage has been opened up and the hernia fixed so that is great but the pouch is not stable (yet).
Seems like it didn't stay attached but that is yet to be verified through tests. I now have the intubation problems that I had prior to it falling off of the wall...the tube gets hooked on something making it difficult to remove and causing bleeding (just a few drops), the tube is bent coming out and the direction is different when I try to put it in.
That said, when it works, it works great.
The hip pain is back...the sacroilitis is screaming at me. Must have been the bedrest + tramadol that had calmed it down for the 1st 2 weeks post op...now it makes it difficult to stand up or sit, walk or climb stairs...normal for me which I was hoping would dissapear once they lifted the pouch up.
Only goes to prove that I can be wrong
!Stress isn't helping anything either.
I am back to working double time and a half...teaching over 35hrs/week plus prep and correcting + travel time...you don't want to know...it is rediculous...and I love it! I live for it and it makes me happy (not so sure about the students). I need to be out all day and stay busy...so I don't think about the pain.
Life is as 'normal' as it will ever be for me and I can accept it if the rest is fine...
How are you doing? How is life?
Sharon
You're an inspiration, Sharon. I wish you to be pain free asap! I have a new BCIR since Dec. 17th, and hope the gas will go away, my strength will return, and my diet will expand and I can walk straight over the next few weeks! Best to you all.
It will be fine...it is a wonderful surgery and can do miracles to change a life. Just take your time and heal! Do not rush anything...There is nothing going on out there that cannot wait the extra week or 2.
Be kind and baby that pouch as long as possible...Do Not be me. I am not my best friend and never take my best advice so...kindness, soups and easy proteins and get the most rest possible. NO climbing, pushing, lifting, pulling, draging, yanking or anything more strenuous than knitting a tea cozy! Zap, clic, tap or type...order in, have a cleanning lady pop by and get all of those friends who owe you one to pay up Now.
Hugs
Sharon
Be kind and baby that pouch as long as possible...Do Not be me. I am not my best friend and never take my best advice so...kindness, soups and easy proteins and get the most rest possible. NO climbing, pushing, lifting, pulling, draging, yanking or anything more strenuous than knitting a tea cozy! Zap, clic, tap or type...order in, have a cleanning lady pop by and get all of those friends who owe you one to pay up Now.
Hugs
Sharon
Thanks so much for the advice. I am fortunate to be able to stay home and enjoy a warm fire with my two cats curled up and close by. The most I've done is gently sweep, do dishes, and laundry, minus any heavy lifting. A bit at a time. My husband and son chip in and life is going well. I got out for the first time last night to grocery shop with husband. Gas pains were pretty fierce, but today it's like a new me - hardly any pains like before - a real milestone. Diet is difficult to figure out. Any advice or favorite foods you rely on?
Grocery shopping? Are you out of your tree? (Fine I did the same thing a week post op but then again I really ended up hurting myself !)
Gently strolling down the ailes not reaching up for produce or down for bags of stuff...No squatting down to pick up a bag of potatoes. No pushing that darn buggy!
Same with laundry...you do not carrry the basket down to the laundry room!
As the resident expert on doing really stupid stuff post op and messing up my pouch thanks to my stupidity...please do not overdo it !(no pulling things up off of the floor)
The dirty socks can wait...And the sheets do Not need changing just yet.
As for the food.
Juices (fresh if possible), hand blended smoothies, light soups (not creamy), tons of chicken and fish. A little meat but mostly ground beef. I like to grate apples or use applesauce. I sucked on citrus and spit the pulp out too.
Avoid the raw veggies and salads for now...the fiber will be really rough on the valve coming out.
Nothing that can bulk up in a ball at the end of the tube. (yes, you can pull out the valve that way)...
I love homemade soups too...Throw a little bit of everything int a pot and boil...lovely...Strain for you, eat whole for the rest of the family!
Same with veggies...drink the cooking water, serve them the veggies.
Now rest...
Sharon
Thanks for the input. I left out that my husband drove me to the grocery store, pushed the buggy and got just about everything I pointed to. Then he loaded and unloaded them so no lifting whatsoever. I don't carry the laundry basket - just take out a few items at a time. I'm a little over a month, post surgery - question - are you saying I shouldn't stoop or lower myself to the floor for items while gently pulling myself up? I thought I shouldn't be doing that either, but Dr. Rehnke said don't lift anything heavier than a gallon of milk, but movement was good for me, including bending. Think I'll trust your advice, though! I am fortunate to have a husband and grown son who are very helpful with chores, etc. Thanks for the food options. Very helpful, too!!
Hi, Sorry to take so long to answer but work and time changes get the best of me.
Yes, exercise is good, especially the simple easy stuff like walking, swinging arms, shoulder rolls etc...But squatting down puts a lot of stress on the lower abdominal muscles, leaning forward and picking something up (anything heavier than a can of tomato soups is out of the question for now) puts strain on the sciatic nerve, the lower back and the abs.
Not good.
My surgeon is a great believer in yoga and deep breathing. He suggested that I start out laying on my back, knees bent slightly and take deep breaths (inhale through the nose) and pull the air down 'below the diaphragm'. Hold for a few seconds (around 8-10) and breath out through the mouth. Start out by doing 8 and work up to as many as you can. It does help to muscle the lower abs that support your pouch.
He forbade me from doing any movement where my back wasn't strait. (sort of limits you...makes getting out of the tub a real challenge!).
It is effective though...I also work a support belt for a while (give by another surgeon) to remember to protect my abs.
For the last food question, I just bought myself little tubs of apple sauce mixed with either prunes, mango or peach...lovely. Mixed with a greek yoghurt it is devine! And very easy on the pouch.
Sharon