This week's Grey's Anatomy...

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smudgesicle
Posts: 124
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

This week's Grey's Anatomy...

Postby smudgesicle » Mon May 12, 2014 4:51 am

Caught up on this week's Grey's Anatomy (s10e23) last night and there was a storyline about a young woman who had survived rectal cancer but had poor bowel control and excessive gas. I felt like I was on TV! Anyway she was in hospital to receive a pacemaker to help establish control, but in the end her control hadn't improved enough with the evaluation procedure to receive the treatment. They ended up going with an experimental procedure that involved inserting a magnetic esophageal sphincter into her colon.

Does anyone know if these are actual treatments? From a limited google search it seems they are both options for bowel incontinence http://www.medtronic.eu/your-health/con ... hat-is-it/
http://www.toraxmedical.com/fenix/

Have any of our colon talkers had these treatments? Has anyone's surgeon mentioned these as options?

I'm so curious as I'm having these exact problems and contemplating a permanent ostomy because I wasn't aware of any other options out there. I'm seeing my surgeon next week and I wouldn't mind having some more reference than Grey's Anatomy!
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

ticktock10
Posts: 45
Joined: Fri Mar 07, 2014 3:49 am

Re: This week's Grey's Anatomy...

Postby ticktock10 » Mon May 12, 2014 7:14 am

I'm afraid I don't have much information to offer, other than this story reminds me of the British guy with his 'bionic butt'...

http://www.telegraph.co.uk/news/newstop ... ottom.html
Oct 2013 - Dx Stage 2/3 low rectal cancer
Dec 2013- 6 weeks neo-adjuvant chemo-rad
Apr 2014 - PET and MRI show 'complete response'
May 2014 - Chose 'watch and wait' instead of APR surgery
Jun-Sep 2014 - 'adjuvant' chemo - 5FU
Sep 2014 - PET and MRI clear

sudeha
Posts: 34
Joined: Tue Apr 05, 2011 4:52 am

Re: This week's Grey's Anatomy...

Postby sudeha » Mon May 12, 2014 12:29 pm

Hello!I also just saw this Grey Anatomy show and they made light of the whole thing because its TV but I just was amazed that they addressed this at all! Goes to show you they do their research and get real life stories from some medical advisor fr ideas.
and Yes I have tried everything under the sun including this electrical stim called "Interstim" from Medtronics to help me with my horrible awful post colo-rectal radiation, chemo and surgery and post illiostomy reversal terrible problems i have lived with 24/7 for 3 1/2 years now. This Interstim was originally for people with urinary incontinence and they were finding that it was helping people to regain bowel control. my particular doctor that did the implant surgery had not had any bowel control issue patients when i went in for it. So what it is are these wire that are surgically implant to connect with the S 3 nerves meaning sacral nerve that corresponds for urinary and bowel control etc.. after the wires are connected they also place in the outer hip upper buttock area this neuro-stimulator device that is battery operated. its oval shape maybe like and 1/8 thick. It comes with a remote control that i was able to chose 1 of 4 different programs and turn it up or down. It is almost like having a permanent acupuncture needle attached. They give you a temporary procedure where you can try it out and see if it works for you before they install the neuro-tramsmitter more permanently via surgery. I did not notice bowel control but i did notice a great improvement for my urine out pour. For sure my bladder got hit with the radiation and it has been quite difficult to get a good flow of urine. So after a 2 1/2 week trial my urologist who did this surgery for me and spoke and decided to go through with it. I thought maybe because I have had such bad damage that it might take me longer than say like a mother who had torn her muscles during child birth. So I had mine in for about 8 or 10 months then all of a sudden I started to notice my flesh being sort of eaten away around the neuro--tramsmitter site and that just kept getting worse and worse. Thank GOD I had my Young Living essential oils especially the Thieves oil that is 100% anti infectious, anti bacterial , anti viral etc..as I could see there was some infection happening which can be VERY dangerous if it were to go septic I could have died. so I was pouring my Thieves oil in the open wound 5 times a day and taking capsules of this oil as well. I had been out of town so as soon as I got back I went to see my doctor and she took one look at it and booked a surgery room right there and then and said we have to take it out! It was a $50,00 surgery in all and my insurance covered 80% of it. but I do know others that they had 100% covered.So she was blown away that the infection had not gone septic and said i was very lucky but I told her I had been using my Young Living Thieves oil. She was VERY impressed. So she did have to take the whole thing out. She did some research and found out that if anyone had prior radiation it would not work to keep this Nero-Transmitter device inside. They had not known that prior at all. It never did work for any better bowel control at all. but I for sure noticed a huge change backwards for my bladder and urine out pour levels after I had it taken out. Just to let you guys know that 3 -1/2 years ago i healed the rectal tumor i had n 3 months but still my surgeon had to cut out a bunch of my large intestine as well as my entire rectum. So i only have 2 feet left of large intestine which is my main problem as we know the large intestine's job is to absorb the water in my colon. So with 2 feet left I do not have any time for the water to absorb there for I suffer with horrible chronic diarrhea for 3- 1/2 years as well as I go to the toilet 60-80 times a day still!!!! and i have the clustering and NO bowel control whatsoever. even if sometimes I get a bit more formed stools from taking so many meds I still have zero bowel control. I spent 1- 1/2 years in physical Therapy getting help from a great pelvic floor dysfunction physical therapist working with bio feedback. but she also could hardly work on my anal area from such bad bad pain so i could go back for some more now that i finally got rid of the horrific 1 1/2 years of the worst anal nerve pain ever. NO doctor helped me with this I figured it out on my own and went to a local pain clinic and they did 2 different injections to block my nerve. The first one did not take hold but the 2nd one did! and ALL of my pain went away. I broke the horrific pain cycle and that was that. When the injection wore off i had no more pain. THANK GOD i was finally able to go off of those awful main meds. I also have horrible awful burning in my anal area and i finally found out from a client of mine who is a GI doc back east that it was not from acids burning it is from bile burning and he got me to take the Cholestyramine powder packs and that changed all of that awful burning for me. I had to take 2 packets a day one in the am and 1 in the pm. now i still burn horribly if i do not take it 3 1/2 years later still!! But i am down to one packet every other day. I also had the biggest most profound change of my life and situation after i got help from another post colo-rectal patient living in Asia who walked me though doing enemas and this has been by far the best thing i have ever done as it gives me hours off of the toilet now. If a poop cycle starts and i do not do an enema, i will have to run like mad to the toilet every 2-3 minutes for hours and hours. This is NO exaggeration whatsoever! Enemas have given me some more sleep. i can get out of the house and go to movies or shopping for food and even travel far away to Europe. For any of you resisting this i tell you it is a HUGE HUGE HUGE VERY HUGE game changer all the way around. I may have to do 4-6 enemas a day but i can do them in under 10 minutes and be done. I have very consciously chosen to NOT get a permanent colostomy because i had the worst nightmare of a time with my 2 -3 month temporary one that I just cannot imagine living this way at all. Plus i just KNOW there are so many new technologies coming in our nearer future that will bring us all an answer that we all so so deserve!!!!
I have an entire word document I made up for anyone needing the Enema info from all the things i bought to make it super easy and where to buy them online etc... So private message me with your email address and I am happy to send it to you. if you have a resistance for enemas please please open your mind and consider to do this!!!!! It is really so so very easy! It took away the 60-80 trips a day to less than half of that, it took away that excessive pain from cleaning and wiping so much, and mostly gave me my freedom back in my life to go do things and travel etc..

I have also been trying Cannabis oil but only at night because of how high it makes me feel and I need to function during the day and not be a zombie on the couch day and night! At first i really did notice a change but not so much now. the thing is i know i would notice a big difference if I was taking it 3-4 times a day. I chose to try this because for 2 reasons. How immensely healing this plant is and i had seen some research of how it can really help slow my gut down. I have been on 5 different medications for 3 -1/2 years now and I WANT OF OFF THEM YESTERDAY!!! Because of the prolonged use of my meds they have lost so much of their effect that i have to keep taking more and more of them all the time. I take Immodium, Lomotil, the Cholestyramine powder, Opium Tincture, and hyoscyamine pill and herbal tincture version. I used to only have to take 1 lomotil every 12 hours at the beginning and now in order to slow down my gut i must take 5-6 imodium, 5-6 Lomotil and prior i would take 3 little lines on the 1 ml syringe fo the Opium tincture and now I must take 2 full syringes to get any effect but its the one med that does really work to slow down my gut. and finally beside I am NOT a quitter and will keep going to find an answer I have just had my first stem cell treatment 2 weeks ago. I had 50 million stem cells from my own body injected. The first night I was ecstatic I noticed such a huge change. I did not go to the toilet one time in 14 hours!!! This is literally unheard of. I was so excited because all along I felt that stem cells are my answer. BUT.... ever since that first night I have not seen much change :( :( :( I am not giving up hope and they must be repairing things I am not aware of. and maybe I need more treatments but cannot afford more right now. Lastly, the other HUGE HUGE game changer was when I was suggested to get a Bidet and install it on my toilet. You guys out there that are going multiple times a day to the toilet and having to use creams from the awful diaper rash and all THIS IS YOUR ANSWER!!!!!! Please please hear me it is by far the best investment i made in my life!!I have gone from using 12-13 double rolls of toilet paper a day down to 2-3, i hardly ever have diaper rash any more and if I do, it is only because i am away from my bidet. Now you do not want to skimp and get a cheap one just get this one I am about to share. It is the Cadillac of Cadillacs for sure. it has all the bells and whistle. A heated seat is sooooo nice if you are going to be on the toilet hours a day, It has several different choice for washing the behind, a warm air dryer and it even had an enema button so if anyone has problems with any constipation from meds or whatever, it has a forceful stream of water that goes into the anal canal and just breaks up the hardened stool to quickly and easily release it. They now have a couple new ones since i bought this one. It is well worth every penny I promise! http://www.biobidet.com/BB1000_SupremeBidet.htm
Is for this Magnetic Esophageal Sphincter they mentioned in this Grey's Anatomy episode, I have never heard of it but am looking it up. The thing I know that I need the most for sure is a stem cell grown large intestine tissue to grow a longer large intestine. This will change everything for me I am certain. But this stem cell treatment I just had was not for growing a longer intestine. I have seen some successful research on this and am looking into it further. I will go anywhere in the world to have this done! I took all this tie to share with you all the many things I have tried and their results because I have ever read on any board anywhere even one person that has tried all that I have unless they just have not shared it. So through a lot of experience and trial and error and I feel I can stand behind everything I have shared here! I pray to God that we all find an easy solution to help us because truly this is no way to live. Friends and family can say yea but you lived through the cancer but this is no bonus whatsoever! and i am glad that they addressed this on the Grays Anatomy episode!
rectal tumor 9/10
5 wks chemo/rad
12/10 lymp nodes, 2 ft lrg intest, rectum removed, temp illiostomy
2/11 illiostomy reversed ,scar tissue cut(wrapped around sm bowels & attached bladder)
sm bowel blockage
8 months-80-100 stools a day w/no sleep

sudeha
Posts: 34
Joined: Tue Apr 05, 2011 4:52 am

Re: This week's Grey's Anatomy...

Postby sudeha » Tue May 13, 2014 12:23 am

I am finding out a LOT of info for this procedure. i will know a lot more by tomorrow. Contact me privately so we can talk about this procedure shown on Grey's Anatomy!!
rectal tumor 9/10
5 wks chemo/rad
12/10 lymp nodes, 2 ft lrg intest, rectum removed, temp illiostomy
2/11 illiostomy reversed ,scar tissue cut(wrapped around sm bowels & attached bladder)
sm bowel blockage
8 months-80-100 stools a day w/no sleep

smudgesicle
Posts: 124
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

Re: This week's Grey's Anatomy...

Postby smudgesicle » Tue May 13, 2014 9:09 pm

Gosh sudeha it sounds like you've had an awful time. My situation isn't as bad but I'm still entirely unhappy with my post reversal outcome. Unlike you though, I lived pretty easily with my temporary ileostomy so considering a colostomy isn't the worst thing in the world to me. In fact, while I'm going to mention these procedures to my surgeon, I don't want to waste time on surgery that's not going to improve my symptoms sufficiently or cause additional problems (from stories I've read interstim commonly causes infection at some point). I'd rather just go straight the the colostomy. From what I've seen here and on UOAA everyone who has made this decision is pretty happy with the improvement in their quality of life.

I'm seeing my surgeon next week so I'll keep you updated as to what I find out.
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

User avatar
steiconi
Posts: 115
Joined: Thu Jun 26, 2008 10:16 pm

Re: This week's Grey's Anatomy...

Postby steiconi » Tue Jul 01, 2014 3:03 pm

Anybody have an update on the magnetic sphincter?
I am not my disease.

smudgesicle
Posts: 124
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

Re: This week's Grey's Anatomy...

Postby smudgesicle » Tue Jul 01, 2014 8:28 pm

My surgeon said that there's no evidence that any prosthetic sphincters currently available reliably produce long-term results at this stage. Sacral nerve stimulation, on the other hand, he believes in and is the only surgeon in our area to do it.
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

User avatar
steiconi
Posts: 115
Joined: Thu Jun 26, 2008 10:16 pm

Re: This week's Grey's Anatomy...

Postby steiconi » Tue Jul 01, 2014 10:12 pm

thanks for the update.
I am not my disease.

sudeha
Posts: 34
Joined: Tue Apr 05, 2011 4:52 am

Re: This week's Grey's Anatomy...

Postby sudeha » Wed Jul 02, 2014 2:21 am

I am in touch with the company now that makes this magnetic sphincter. its under review right now to be FDA approved hopefully by the end of this year. I am trying to find out now if i would be a candidate for it since i have had my entire rectum surgically removed. on their website it shows the placement of it but it shows it with someone with a rectum. i don't think there are to many of us that have undergone Colo-rectal cancer that still have much of a rectum left. i could be wrong but have not read about many that still.
I had the sacred nerve stimulation for about a year but it did not give me any bowel control whatsoever and i really gave it a good shot. I did notice a tremendous difference with my bladder which had been effected by the radiation which hit it during my treatments. Now make sure you pay attention to this that i am about to share for anyone considering trying the Sacral Nerve Stimulation device.

After having it in me for about almost a year it began to eat away my skin surrounding the neurotransmitter they surgically put it as part of this treatment. after about 2 weeks you could see the neurotransmitter inside of my outer hip area. it was for sure infected as it was super hot and red. My doctor was horrified when she saw it and sent me into surgery immediately to have it taken out she said i was very very lucky that the infection did not go systemic and kill me. i had been using my Young Living oils the Thieves oil which i had been pouring into the open wound and it is 100% antibacterial and antiviral and anti-infectious etc.. so i knew i was fine. but aside from this they found out that anyone who has had radiation prior to trying the nerve stimulator that there is a very likely chance that what happened to me would happen others. its like the radiation rejects it from the body. So i was their learning curve. They only discovered this after it happened to me. I hope this will help others who are thinking of trying it,. i am sorry to disappoint you as i know how hopeful we can feel when we find something that can possibly help us! I am not giving up the search. Oh i now also have the contact info of the head colorectal surgeon who has been working very closely with this company that is making the magnetic sphincter. I am about to contact him so anything i find out, i will post here.
rectal tumor 9/10
5 wks chemo/rad
12/10 lymp nodes, 2 ft lrg intest, rectum removed, temp illiostomy
2/11 illiostomy reversed ,scar tissue cut(wrapped around sm bowels & attached bladder)
sm bowel blockage
8 months-80-100 stools a day w/no sleep

VeroMom
Posts: 1
Joined: Sun Feb 10, 2019 11:16 pm

Re: This week's Grey's Anatomy...

Postby VeroMom » Mon Feb 11, 2019 6:00 pm

Hi Sudeha,
When you said: now that i finally got rid of the horrific 1 1/2 years of the worst anal nerve pain ever. NO doctor helped me with this I figured it out on my own and went to a local pain clinic and they did 2 different injections to block my nerve. The first one did not take hold but the 2nd one did! and ALL of my pain went away. I broke the horrific pain cycle and that was that.

Where did they do the block ? In the pudendal nerve through your buttock or somewhere else? Thanks so much!

sudeha
Posts: 34
Joined: Tue Apr 05, 2011 4:52 am

Re: This week's Grey's Anatomy...

Postby sudeha » Mon Feb 11, 2019 10:30 pm

Hi there yes exactly that's where they did the injection a pudendal nerve block through the buttock. all these years later it came back in the last 6 months!ARG! so i went back again and got the nerve block and it did work again thank God, because i did NOT want to go back on pain meds.Unfortunately it's now been 8 -1/2 years since i THANK GOD healed the rectal tumor and being i am not at all a candidate for a permanent colostomy bag i have been searching wide and far answers for help, I still live with chronic diarrhea going 100-125 times a day and i still have even worse complete and total lack of bowel control and i have like 50 plus BIG accidents or more per day. even if i wear diapers with extra layers of soft paper towels in the diapers it still gets all over! No matter what i have tried and i have tried a lot nothing has changed :(
it is so so totally crazy hard but i am still standing. I am about to get stem cells from placentas and umbilical cords put on to my anus area where i have a lots of post radiation damage and this doctor who is doing this for me says that he has been doing this for awhile now and he said that with his naked eye as he puts the tissue on he watches tissue immediately start to heal! so i am conquering one stone at a time!

I hardly ever go on these support sites anymore maybe i should poke around and see if anyone else has found any help for people like me!
rectal tumor 9/10
5 wks chemo/rad
12/10 lymp nodes, 2 ft lrg intest, rectum removed, temp illiostomy
2/11 illiostomy reversed ,scar tissue cut(wrapped around sm bowels & attached bladder)
sm bowel blockage
8 months-80-100 stools a day w/no sleep

sudeha
Posts: 34
Joined: Tue Apr 05, 2011 4:52 am

Re: This week's Grey's Anatomy...

Postby sudeha » Mon Feb 11, 2019 10:36 pm

By the way... This magnetic ring is now FDA approved in the USA! but i had 3 different doctors call the head doctor that headed up the clinical trials of it in the USA, and i got turned down all 3 times as he stated that since i had radiation it was a high risk for infection in the post radiated field and he would not do it on me! :( but if i can heal the tissue with the stem cells then perhaps i will be a candidate! my fingers and toes are crossed big big time!
rectal tumor 9/10
5 wks chemo/rad
12/10 lymp nodes, 2 ft lrg intest, rectum removed, temp illiostomy
2/11 illiostomy reversed ,scar tissue cut(wrapped around sm bowels & attached bladder)
sm bowel blockage
8 months-80-100 stools a day w/no sleep


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