Emily, I am so sorry to hear what you have been going through with your K pouch.  In dealing with difficult pouch problems, experience of the surgeon is a significant factor to consider.  In no way am I implying that your surgeon is not qualified to deal with your current situation.  There are two BCIR surgeons in the US who have extensive experience with pouch complications: Dr. Don Schiller in Los Angeles, CA and Dr. Ernest Rehnke in St. Petersburg, FL (my surgeon).  As a starter, I suggest that your surgeon contact one of them for their recommendations before you have your next surgery.  Having a temporary ileostomy for several months sounds like a good idea.  Please keep us posted, and best of luck.

Bill

BillV posted:

Emily, I am so sorry to hear what you have been going through with your K pouch.  In dealing with difficult pouch problems, experience of the surgeon is a significant factor to consider.  In no way am I implying that your surgeon is not qualified to deal with your current situation.  There are two BCIR surgeons in the US who have extensive experience with pouch complications: Dr. Don Schiller in Los Angeles, CA and Dr. Ernest Rehnke in St. Petersburg, FL (my surgeon).  As a starter, I suggest that your surgeon contact one of them for their recommendations before you have your next surgery.  Having a temporary ileostomy for several months sounds like a good idea.  Please keep us posted, and best of luck.

Bill

Hi Bill,

Thank you for your kind reply.  I believe my Surgeon was actually trained by your Surgeon! He has actually just returned from the USA after doing further training.  He indicated that he discussed my case with a number of his colleagues and he feels confident that this next surgery will be the last one for a good while.  I really hope he’s right!  And I totally agree that the temporary Ileostomy is the way to go.

 Thank you again and kind regards,

Emily

Emily, you been through something. I'm surprised you still want to try for another redo. At this point I might say give me the permanent ileo. They aren't that bad. When I had one I was pretty comfortable. Sometimes I even forgot I had a bag. Either way I hope it works out and this time your surgeon has the education he needs to make it work. Keep us updated and all the best to you. 

You are so brave. I would do the same thing. I’ve had a K pouch for almost 37 years. Since I was 21. For pretty much my entire adult life. I’ve spent the last two years  dealing with incontinence and two revisions. Soon, I will have a third revision. It is my quest. I’m going to try everything I can to keep it and get it back in working order, until I’ve exhausted all options. It is more conducive to my active lifestyle. Best of luck next week.  I’m sending healing thoughts your way for a successful surgery. 

i agree, exhaust all of your options.  then you won't second guess yourself in the future.  it sounds as if you have developed a good relationship with your doctor, which is critical in communicating and working on solutions.  that said, i'm so sorry you have to go through any of this.  sending white light.  janet

Your courage and patience are unbelievable. I really hope it works out this time. I guess the only question I would ask are your risks for short bowel syndrome with all of the surgeries you have had. That information might help you make the decision to revert to a permanent ileostomy if that time comes. Until then, a temporary one sounds like a good idea to give everything a rest. 

Good luck!

I am so sorry Emile, you are living in a suspended animation nightmare. 

This should not be happening...it really should not unless there is some underlying pathology that is preventing you from healing or making your tissue so fragile that nothing is holding and the sutures are pulling out.

Please Google Ehler's Danlos syndrome. 

I have it and had pretty much the same series of complications post-op as you do...every surgery fell apart. Valves did not hold, my pouch fell off of the wall or twisted, I herniated around the stoma repeatedly and my valve would pop out, I got twists, blockages, occlusions and any other number of complications.

We discovered the Ehlers-Danlos when I way well into my 40's and had already had nearly 40 surgeries. Nothing held together like I did not have enough glue.

My arteries and veins popped. My skin could not stand glue, tape or flanges...outside bags were out of the question. Dr Cohen didn't understand why everything kept falling apart. 

Then I got the diagnosis (double-jointed joints, fragile skin, ligaments, intestinal tissue...) and he was able to use a different protocol to sew me up and staple me...it worked.

We use permanent instead of re-absorbable sutures. Doubles lines, deeper bites (they stitch deeper into the tissue so that the sutures do not pull out), use sutures, stapels and steri-strips on my outside closure and keep them in up to 3 months (staples out after 4 weeks, sutures 6-8 weeks and steri-strips at 12 weeks, they sometimes put in a drain just in case)...lots of precautions but they work, I get better results and they are effective.

They also double-attach the pouch to the abdominal wall using an intermediary. First they had used a Martex ring that they sutured to the abdominal wall then sutured the pouch to it...now they use mesh.

I do not know if this will help at all but I am hoping that maybe something might.

Good luck girl and may this surgery be successful.

Sharon

Hi Emily I am so sorry to hear about the problems you have faced, that sounds utterly awful. I really hope that at this stage you are feeling a bit better.

My pouch is relatively new so unfortunately I do not have any advice about what to do as I'm still trying to work it out myself. 

Just wanted to offer my sympathy and wishing you a positive outcome.

Emily - could you contact me please -

coopermancathy@gmail.com

Thank you.

Cathy Cooperman:

Unfortunately, Emily passed away a couple years ago.

Thank you, Kim. She went through hell. Did she die because of all the k pouch complications?  Because she truly saved my life with her post. I canceled my k pouch surgery today because of her.  She is my hero forever. Cathy

She had some unique medical issues. It is my understanding that her passing was unrelated to pouch issues. I’ve had my pouch for 42 years (since I was 21 yrs old) and would move heaven and earth to keep it.

I’ve wavered about doing it. Perhaps you could shed some light on your experience. I’m very scared.

cathy--what is your situation relative to uc and past surgeries?  do you have a j pouch now?

chronic and decade-long pouchitis triggered my necessity to have j pouch removed.  once  aware of the k pouch as an alternative to permanent ileostomy, i inveestigated it on this site (look at sharon's posts as she is fantastic) to be informed.  next i saw a doctor in nyc (didn't take insurance), and then at Cleveland clinic, where dr. dietz eventually did the surgery.  i highly, highly recommend him, if you are in cleveland area.  note: he is now at university hospital.  once in post-surgery stage i read and re-read posts on this site.  we are a family and many people helped me through.  like kim i prefer the k, despite additional surgery and occasional problems.  that said, once the colon is removed our entire system is altered.

since my 2015 surgery there is more info available.  i post, on this site, links to nyc Presbyterian - columbia's webinars.  they are lengthy, and detailed, but very informative.  might not be your type of nerdy getting in the weeds.  i understand and respect that.  honestly i think they should include patients to make it more real.

so sorry to hear about emily's passing.  she was an amazing correspondent about her surgery, an excellent writer, from whom we all learned.  peace, jan

I’ve had no surgeries except for the nerve stimulator which proved to be unsuccessful. My issue is inertia of the colon, poor motility - complete inability to poop. I also have levator ani syndrome which propels me into such pain, that I don’t know what to do with myself.  Levator ani syndrome is when the levator muscle of the pelvic floor goes into hard spasm. It is incurable. I was going to do the k pouch but canceled when I read Emily’s

post and that she died. I don’t know what to do.

Several women in a pouch Facebook group have then same poor motility issue. I’m sure they would be willing to discuss their pouch experience. Have you joined any of continent  pouch facebook groups? The most active group is called BCIR and Related Pouches. There are a few questions to join. Another group is smaller and more private,  it is moderated by Sharon, who has very extensive knowledge, this group is called Poucher Lifestyle. The most important part of this surgery is having an extremely experienced surgeon who does this procedure frequently. There are some that may say they do this surgery, but in the United States there are only about 7 surgeon's who fit this description. Some others are able to handle smaller issues with an existing pouch but do not construct new ones. Are you in the U.S. ? If do, what state?

I’m in the US and I live in Connecticut.

You have some great options. I’m not sure which surgeon you are working with, but I can personally recommend Dr. Kiran in NYC (he did my revision surgery in 2019) and there are Dr. Dietz and Dr. Ocuin at University Hospital in Cleveland (just down the street from the Cleveland Clinic) and Dr. Steele at the Cleveland Clinic. And two others in North Carolina and Mayo Clinic.

Thanks for mentioning me and my group, Kim. I hope that you are doing well!

I am so sorry to hear about Emily, I kind of thought that we had lost her...we had been in contact through PM...the poor thing. May her soul be at peace.

Yes, you can come and join PoucherLifestyle...we talk about everything but I also post here (this site has saved me more than once and it is a lifeline of information and aid for hundreds of pouchers!) and on many others.

Although many of us have similar problems pre/post K pouch or BCIR, not one of us is the same.

Do not cancel surgery because someone else had a bad outcome.

If you do not feel comfortable having the surgery, then fine, I understand perfectly. But do not do it because of someone else's experience.

I have Ehler's Danlos. It is a healing disease. It is a congenital non-production of collagens which means that the body does not produce the 'glue' to heal things.

Collagen is the essential element in the production of your elasticity, skin, bones, ligaments, and healing.

I should know. Each surgery, since my 2nd birthday, has required 5 more. When the dissolvable sutures dissolve, the whole thing falls apart. No glue. When they removed the sutures at 7-10 days, I just pop open. No healing. It took until I was over 40 and a miraculous GP to discover what was wrong. No collagen.

You cannot take it by mouth to compensate. It gets destroyed by the stomach acids. You need the building blocks first. Organic Sillicium.

I've had over 50 surgeries (that does not include procedures and minor stuff). About 45 would never have happened if I healed correctly.

The advantage now is that I can tell them what I need, they know, then do what they can to mitigate it (when they listen to me).

I require mesh and permanent sutures. It takes me months to heal...so abdominal closings get sutures, staples, steri-stips and Montogomory ties (kind of like a girdle that pushes things together). They remove the staples at 3 weeks. The sutures at 6 weeks. They keep changing and adding the steri-strips for another 6 weeks until I finally heal. 12 weeks in all.

I create pockets of fluid that need draining...if they listen and open 2 sutures, I'm fine, if not, the whole thing dehysses! Then pops open.

Organic Sillicium helps me a lot...somehow I heal better. Usually, by 6 weeks.

That is me and my body. You have to find out what helps yours and then communicate it to your medical team. If they are willing to work WITH you and not against you then you can have a wonderful successful surgery.

It is a long but worthwhile road to travel.

My pouch is about to celebrate 45 years this August. I would never have survived my life without it. I would not be who I am today without it.

I do apologize to all J pouchers and end-ileos who do not agree with me. That is their choice but I know that without my K-pouch, I never would have been able to travel and move to France in the 80's (sanitary conditions were nearly impossible here back then) or have the life that I dreamed of. And the life that I have today. I would have been severely limited.

My skin bubbles, rashes and blisters with adhesives. It would have been a nightmare. I cannot have an end ileo. I already did for 1 year. It was hell.

So yes, for me, the K pouch was and is my only choice. 

You need to be your own advocate. You need to do research and discover what works for your body. I am a researcher. Eternally looking for more information and answers. The more you know, the better the outcome.

Good luck in whatever you choose to do.

Sharon

@skn69 posted:

You cannot take it by mouth to compensate. It gets destroyed by the stomach acids. You need the building blocks first. Organic Sillicium.

Can you tell me more about Organic Sillicium?  Is it the same as choline?  Where do you get it?  Does it have any side effects for you?

Sara Marie,

I discovered Organic Sillicium G5 in the late 90's-early 2000's. A client of mine used it post-wisdom-tooth extraction. She healed miraculously quickly and suggested that I try it for my medical condition (her husband was a consulting surgeon on my case in 2000 when my K pouch failed).

Although I did not initially use it when I had repeat surgeries and inevitable failures (over 10 surgeries between 2000-2008) I finally remembered.

I had my best friend find me some in a health food store. It comes in a liquid or gel form. It must be refrigerated. I used it both on the abdominal scar and by mouth. You take a capful at a time 2xs/day on an empty stomach. Hold it in your mouth for about 30 seconds because it absorbs best that way.

It has a mildly bitter taste but it is not disagreeable.

I'm taking it right now for a knee problem and it has helped. I cannot say that it cures anything only that it seems to speed up the healing process.

A more concentrated form is SILI-G5 and yes, Choline has been added to concentrate it.

I've found a notable difference in my healing process. It is natural and non-toxic but I would test it first, before diving into it daily.

They say to take it for up to 2 months but not continuously, forever. I only take it when needed. It helps a lot with cartilage as well.

Please, if you do try, chart your progress and let us know if it helps you. I have a scientific mind and require data to reinforce my hypothesis...I believe that it can significantly help many of us who just do not seem to be able to heal.

Good luck and I hope that it does help you.

Sharon

Sharon,

I found your diagnosis of Ehlers Danlos Syndrome interesting.  My daughter also has Ehlers Danlos with Hypermobility.  From my understanding, she has a more mild case of it.  She was diagnosed in her early 30's.  I guess there is also the possibility that any children she has may have it as well.  She is pregnant now and they are aware of her situation.  Hopefully, she will not need a c-section.  It's funny that we never were aware of this until recently.  She has the translucent skin, longer fingers, and is double jointed.  She has to wear compression stockings as well and keep up with fluid intake and sodium as well.  You are the only other person we know with Ehlers Danlos.

Chris

Hi Chris,

A couple of things that might help your daughter that are easy, inexpensive, and very useful.

1. Celtic Salt. It is a sea salt that is collected by hand off of the French Atlantic coastline. It contains 92 essential minerals including 3 different magnesium: magnesium citrate, oxide, and aspartate...essential for the permeability of water and minerals into cells.

It helps with the swelling of legs, lowers BP, and does wonders for exhaustion and headaches. I've been taking it (you just shake a few grains into the palm of your hand and lick them or dip your pinky finger into the jar and lick it...allow the grains to melt on your tongue before drinking a glass of water...excellent for dehydration as well.

2. Organic Sillicium SILI-G5. Especially for anyone with Ehler's Danlos who has fragile ligaments and weak connective tissue...it reinforces them...it helps for post-partum healing as well.

Let her look it up...

There are a lot more people with ED than we can imagine, they've just begun to test for it and the double-jointed kind does not show up yet, in genetic testing. We will all pass our genetics on to our kids...no choice. The good and the bad.

Let her be healthy...and have a healthy baby. She knows what to look for now. That is what counts.

P.S. congratulations!

Sharon

Thank you, Sharon!

As we age I think we all heal more slowly, and I have that hypermobility thing, too.  My tendons get overly stretched.  I'm doing PT to help with it but would love something that would help strengthen/heal connective tissue.  I'll look into the Organic Sillicium SILI-G5 but can you tell me what you purchase and where?  Is there a brand you like?  I'll look for it in the health food store, but would love some more specific pointers.

I will definitely document how it works if I can find it!  I'm already taking Choline and Collagen supplements, but i do wonder about whether they get absorbed by my digestive tract, or am I just pooping them out?  If so, I could save a lot of $$ and skip them.

Sara

Sharon,

I will let her know.  She tends to research and take care of herself.  She has also learned to take a day here or there when she needs it.  Something that I was never good at.

Chris

Sara Marie,

I live in Europe so the brands would not be the same as in the States. Go to a good quality health food store, ask what brands they carry and then research them...that is how I do it.

As for the collagen, well take it too, even in liquid form and have wondered the same thing. It is expensive. I have recently learned that we do not absorb a lot of it but maybe that is better than none?

According to my BFF who is my 'partner in crime' for most things, I look better than I should and she attributes it to the collagen...I attribute it to fighting a daily battle with my body.

Again, I research everything.

Recently, I had massive knee issues due to my lifestyle. I teach, have over 600 students and between Dec and January, I carried all of the their final exams home to correct and then took them back. For me, that meant about 20lbs/trip in a huge canvas bag on my shoulder on slanted, uneven sidewalks (they slant them here for the rain). I badly used my cartilage on one side. Result? LImping and severe pain.

That is when I restarted the collagen. Massaged it in and by mouth 2sx/day on an empty stomach, allowing it to absorb first in my mouth to increase absorption.

I also used the TENS machine on my knee 2xs 15mins/daily.

I had to take a class to Berlin this month...we walked about 18000 steps/day plus stairs....I did it! Without too much knee pain and without destroying it even more.

Was it the collagen, the Sillicium or the TENS? Or all 3? Who cares, it worked.

Sometimes it is subtle...a little bit of each thing adds up to healing.

Flat shoes, more supplements, massage, TENS and lighter tests should do the trick (the kids are grateful for my bad knee!).

Try it all and chart it!

Sharon

Thanks, Sharon.  I will!  I just rode a 27 mile bike ride in the hills yesterday to raise funds for AIDS hospice.  It was beautiful!  My knees feel ok so far.  I noticed that I have a strange uneven way of pushing the pedals and tried to correct it some during the ride.  I have never tried applying collagen topically.  I will look for that in my health food store as well.  I have only used the powdered form of collagen peptides.  I haven't seen the liquid...haven't looked for it though!  I take choline and I think it's helping some.  I'll go search my grocery/health food store for Sillicium!  I need all the help I can get!  I'll let you know what happens.  Maybe in a PM, so we can stop hijacking this person's topic! 

What age group do you teach?  Sounds like your students are pretty darn lucky to have you.

It is the sillicium that you should apply topically, not the collagen! It helps...a lot!

@skn69 posted:

It is the sillicium that you should apply topically, not the collagen! It helps...a lot!

OK, thank you for the clarification!