After having a KPOUCH for almost thirty years in 2010 the valve began leaking badly. Unfortunately the doctor in Houston no longer did that surgery. I had to go to California from Texas to have the Kpouch changed to the BCIR and moved to the opposite side. About a year later I began having pain where the rectum use to be. It has gotten progressively worse ever since. The pain is constant every second of everyday for going on nine years now.It feels like a steak knife is jammed up my bottom stabbing and twisting all the time. I’ve talked to three other BCIR patients who are suffering from the same thing. I’ve had a spinal laminectomy, hysterectomy, nerve blocks, nerve burns, Botox injections, stem cell injections, three different nuro Stimulators, acupuncture, and on and on but the pain never stops. I’m certain the pain is from scar tissue that has adhered my pouch to the bottom of my pelvis. When I eat the pain gets worse I feel it’s because the pouch starts moving and pulling on the inside. No one is willing to go in through my bottom and cut loose the scar tissue. I’m only in my fifties and if I weren’t literally disabled by this I’m in perfect health yet I’m forced to live like an invalid. I survive on pain medicine that barely controls the pain. The next step is a pain pump. The thought of living out my life totally dependent on the care from another person, confined to my home causes me crushing sadness. Is there anyone, anything out there that can help me?E0F32C59-3243-40B1-93F6-2C924B855882 

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sounds terrible and i'm so sorry for what you are experiencing.  we've got to brainstorm and come up w some ideas for you.  

may i suggest keeping a diary of what you eat, when intubate, activity, pain level and what ever else you think might be influencing the pain?  try it for a week.  you know your body better than the doc, they should be able to take the info and figure out what is happening.

has SIBO been ruled out, and pouchitis for that matter?  both can cause pain, especially sibo.  but i don't know why the pain would then be in your rectal area.

have you had a pouch gram?  not certain what it might show.  can they tell with a mri if the pouch has attached to another organ?  i'll keep thinking about past procedures that i've had.

that said, adhesions can cause extensive pain.  

stay strong, janet

Thank you for your suggestions. What is SIBO? I actually had pouchitis a few weeks ago. It is not that. When I had the hysterectomy the doctor told me the scar tissue was extensive. I’m having some pelvic imagine sent to surgeon who did my BCIR. He will be better qualified to discern what they may reveal. It really does feel like you might imagine if the pouch was stuck on the pelvic floor and being pulled.

Im anxious to hear what my surgeon finds on the imaging.

 

 

Thanks. Talked to Dr. Schiller in California today. He has had me send him imaging of my pelvis area. I haven’t really involved him in my quest for pain relief as I have been hoping for fix that wouldn’t involve surgery. That probably has been a mistake on my part. I’ve thought I would have to go back to California but he told me there is a qualified surgeon here in Texas should I need surgery. Just knowing that has relieved stress. Now that Dr. Schiller is on it I feel better. Dr. Schiller is the most wonderful person. Besides his skill as a surgeon the fact he truly cares about his patients is so apparent. I’ve had over thirty operations and probably over a hundred procedures that require anesthesia so I’ve been under the care of many doctors. Everything about my experience with Dr. Schiller has been above all the very best. 

Im glad I found this site. It’s nice to talk to others than can understand.

Hi Robin,

I’ve been reading about TMR, a nerve regeneration procedure for amputees at Ohio State University Hospital. Take a look at that, lots of updates on it online.

It may just be something that could help with your issue! Looks very promising.

So sorry for your very painful situation.

Janice

 

And if they can regenerate nerve ends to a new place, maybe after taking away our rectum and anus, containing a bunch of nerves, or a large amount of our insides. They can prevent the chronic nerve pain some get as a result, Albeit in the rare cases.

 I have the K pouch because of unbearable, unrelenting pain in my anus after re-do Jpouch surgery .  Totally debilitating!

Just a thought. Someone out there may know more about this? Those phantom pains can come from any nerve disturbance. Be great if they could use this method to help more people in need .

Do hope this didn’t seem off topic Robin, it’s just when I have ask my Dr about any issues about feeling stuck to my X butt or pulling in my abdomen he/they always say it maybe scar tissue after so many operations  and how they are putting pressure on nerves, or can be phantom pains etc. So this came up in the local news on a recent case. Maybe a Colo-rectal Dr could get interested in it.

Not much worse than a pain in the a—, huh? 🥴 Ya’ll have a good day

Janice

 

 

 

 

 

Small abscess in the Cul de Sac de Douglas...that little scoop shaped bone that is at the base of the spine. 

Adhesions are possible...so are phantom pains and a 'tethered nerve' or filament at the base of the spine that needs clipping...

Just throwing out some suggestions here.

I have had that knife pain on occasion, maybe once or twice every few years, usually after sitting on a bike or doing certain exercises. It stimulates the area and causes horrible pain but in my case, it subsides within 24hrs.

They might need to do an exploratory...could a tiny piece of rectal tissue been left behind?

Sharon

That sounds like solid possibilities. If the doctor in Dallas agrees to see me, I will discuss these possibilities with him.

I don’t remember if I mentioned it but he does the K-pouch. All the other colorectal surgeons I’ve seen say going in me would be like driving without a road map. You would think non of them ever removed a rectum.

 

They tend to be a timid bunch when it comes to going in after another surgeon...they don't like to fix other people's work...I am having that problem now after a surgeon refused to fix the surgery that he botched...no one else is willing to do anything...same excuse...

Too bad they are so unwilling to help the patient.

Sharon

Well this is the last straw. If this surgeon doesn’t help me I’m not taking it quietly. I’m done being told nothing can be done when I know that’s a lie. I thought doctors take an oath to do no harm. They seem confused about what that means. Obviously not operating when it’s not necessary would be harmful but so is not operating when it could help. I have been being harmed by them for many years now by their unwillingness to help me. Have you ever heard of Dr.Phil? He has a talk show. I think I’ll go on there and shed light on how people like me with scar tissue that is causing debilitating pain are being left in misery with nowhere to turn. I know personally three other people that I talk to that are going through the very same thing. One man has had pain like mine even longer than me. He is now on disability because he can not even leave the house anymore. It’s not just our lives being thrown away by the medical community but our care givers lives as well. Our entire extended families are left to suffer because we can no longer spend time with them. 

I use to think so highly of doctors but this has changed my view. It turns out those that truly care are few and far between. There is no wonder there is a opioid epidemic in society. The cause of pain in many cases is not being addressed and is instead falling on the pain management community. 

Im a fortunate person in that I have a low genetic propensity for addiction. But there are many where the opposite is true. Or there are those for who the medication is not being given in adequate levels leaving them to seek out more. Then the government wants to blame the one being given pain medicine instead of having their problem fixed. Im sure the majority of people would much rather not need medication at all. How many people have the government asked how they came to need pain medicine to begin with? Im curios how many have been turned away when seeking a fix for their pain many times before being left with no alternative but pain medicine.

They act like the last surgeon who operated on us owns our body for the rest of our life. Can you imagine if we had our car serviced in a particular garage and for the rest of the time we owned that car no other garage would touch our car. It would be ridiculous yet that is where we find ourselves.

We are all in so much pain just surviving that they get away with it but I don’t care if I have to be carried on a stretcher, if I’m turned away again I will start a campaign of letter writing and internet presence and any other way possible to make the public aware of how many there are being cast off to a life of unending misery by the surgical community. 

 

Robin,

I understand perfectly. In 2000 I had emergency surgery done by the top man in France at the time, on top of which he was the president of the French Federation of Surgeons.

Bad news for me. The surgery was both a success because I am still alive (he removed the necrosis behind my pouch and thus saved my life) but a colossal failure because he had no idea what he was doing with my K pouch and moved it to just below my bellybutton in the deepest fat zone of my abdomen which made my valve much too short and it literally got sucked back down into my abdomen and corkscrewed while doing it. I had a sunken valve at about 3 inches in and twisted which made intubation nearly impossible and well as extremely painful and hemorrhagic.

He refused to fix it, gave 100 excuses until he finally refused to see me and told me to come back when I was ready to have my k pouch excised and an outside bag put on me...he said that he 'did not believe in K pouches' and that they 'Never work anyway and are a colossal waste of time'...proof being that mine no longer worked...

So I went to see another surgeon and then another. 5 in all and all refused once they found out who had done the surgery...told me to go back to him. He told me that he would wait for me to be brought into ER and then he could do what he wanted to me.

I lived in absolute pain and terror of being pulled out of a public washroom at work after having passed out from a hemorrhage. I could only intubate laying on the floor (not easy in France) so I stopped eating during the day. 

It took 5 yrs for me to find my old surgeon who saved my life. 

I have had many repeat surgeries and many ups and downs due to a healing disease but all in all my pouch was saved and so was my life.

Do not give up. Do not give in. Get mad. Get help and get healthy.

Sharon

Oh Sharon,

Its hard to make someone who has looked inside their own abdomen cringe but that did it. 

Your story of perseverance will stay with me forever.

My little dog, is very ill. We took him to the vet Wednesday. It was over $450. He had pancreatic attack and even though he no longer has diarrhea and he stopped throwing up he hasn't stopped shaking since last night. Of coarse the vet will be closed tomorrow because of Labor Day. I got him after my other little dog died at fourteen. He is so smart and funny, just about perfect and I’ve come to love him very much. I’m afraid he is going to die. There really isn’t anything a vet could do at this point. Either his pancreas will recover or not. I was up all night with him shivering and panting. At least he stopped panting. He is the only reason I get out of bed. Without him I would have nothing pressing enough to overcome the pain and get up for. I would just lay there waiting to hear if that doctor is going to help or not. When he was about twelve weeks he was running in the house hand slid into a door facing and broke his elbow in two places. Two pins , $4,000 and weeks of trips to the specialist to rewrap  his leg and he could walk again. It’s sure been a big expense for a $150 dog. Ha ha. I have to say though he has been worth every penny. All I can do now is hope he makes it. 

Thank you from my heart for sharing your painful story with me.

Robin

I’m the closest to Houston to the south and then Dallas to the north. I’m in between two smaller towns, Conroe and Montgomery. I’m actually closer to Conroe but Montgomery is my mailing address. 

My little dog seems to be feeling better.

 

I understand Robin,

My puppy was my solace while growing up sick. I got when I was 12 and she died while I was going through chemo at age 28...I never got to say goodbye...

We love our animals because they devote their lives to us and our happiness so we give them our all...all of our love and devotion...but we cannot save them once their time has come, we can only make then comfortable and give them our love and gratitude.

I hope that your puppy heals and that she (?) spends long years by your side giving you comfort.

Sharon

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