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Posted 2/22/2011 7:16 PM (GMT 0)
Boat,

Your doc is correct to leave the rectosigmoid junction. It is the area that gives what they call the "push to forth" that propels stool out of the rectum. You are doing great. Likely the backed up stool in colon is all that slowed the last part oft your small bowel. You are headed for success. Best wishes Rosemary.

Judy and Janie glad to hear from you. My computer is freaking out and the screen scrolls way left them way right. Hope this posts OK. Rosemary
Posted 2/22/2011 10:11 PM (GMT 0)
do they leave the rectosigmoid junction in all sub totals with an IRA??
Posted 2/22/2011 11:51 PM (GMT 0)
I sure hope they do Boat. My sigmoid rectal junction was removed, levator muscles scarred, and that's how I lost the function of my rectum. Keep in mind the surgeons who did this to me have a trail of suits (unknown to me prior to letting them operate), they don't know anatomy from a hole in the ground, and should not even be in practice, so they are not the norm. But the removal of my junction was one of the damages that made me lose the function of my rectum. It was called a low anterior resection. These are only done for cancer in the upper part of the rectum and for rectal prolapses neither of which I had.

So it sounds like your surgeon is going to leave the rectosigmoid junction and all of your rectum. You are lucky. Just be sure they are not going to do low anterior resection. This is where they take the top of the rectum and the sigmoid (which means taking that junction). You want to avoid Low Anterior Resection at all costs. Risks specific to L.A.R. include incontinence, urinary frequency or loss of control, and loss of sexual nerve endings because that surgery is done so low in the pelvis. As they did not tell me they were doing L.A.R. they of course did not tell me these risks. All the damages came true. I would never have agreed to LAR. Also with Low Anterior Resection there is more chance of leak or stricture with the anastomosis.

The higher in the pelvis the surgery is done, the less can go wrong. Sounds like your doc is planning a high anastomosis what with leaving the full rectum and the sigmoid junction. But check to be sure. But his plan sounds good from what you have said.

Rosemary
Posted 2/23/2011 1:40 AM (GMT 0)
Rosemary, I gave up on reading page 2 due to the sentences being sooo long, that I would lose track. So, glad this page is not that way.
Posted 2/23/2011 2:09 AM (GMT 0)
Hi Tracy,

I know isn't that weird how those sentences on page 2 came out in like wide screen view? Just like a wide screen TV :-) I ate 8 chocolate chip cookies for dinner and feel gross. Gotta mend my ways. This endless winter is getting to me. All seems to be passing OK, but a bit worried. Hope it's just like ANYONE would feel after eating 8 soft baked chocolate chip cookies. I forget the brand I think they were the Pepperidge Farm kind I warmed in the microwave. What a way to go if I do ....hehehehe! Hope you are doing well. Only 2 weeks until my next sailing I have so got to get it together. Tomorrow light eating. How are you doing? Rosemary
Posted 2/23/2011 1:03 PM (GMT 0)
I feel better then.

Looking at this picture he is basically going to cut at where you see the line by the rectosigmoid junction, if not slightly to the right of it.

http://www.google.com/imgres?imgurl=http://www.aboutcancer.com/anatomy_rectum.gif&imgrefurl=http://www.aboutcancer.com/colon1.htm&usg=__PVaWS9wWTnM9c4khndgALL-Lvgk=&h=483&w=565&sz=56&hl=en&start=0&zoom=1&tbnid=fY8XGvczKAW0oM:&tbnh=125&tbnw=147&ei=RgVlTailA4vrgQeOi73OBg&prev=/images%3Fq%3Dperitoneal%2Breflexion%26um%3D1%26hl%3Den%26biw%3D1920%26bih%3D971%26tbs%3Disch:1&um=1&itbs=1&iact=hc&vpx=1199&vpy=237&dur=3048&hovh=208&hovw=243&tx=121&ty=224&oei=RgVlTailA4vrgQeOi73OBg&page=1&ndsp=67&ved=1t:429,r:18,s:0
Posted 2/24/2011 3:10 AM (GMT 0)
Boat,

It would take me the rest of my days to type in this URL. Where is he going to cut? How far above the rectum? Rosemary
Posted 2/24/2011 5:51 PM (GMT 0)
you can highlight it, then right click, then copy the URL and paste it, but basically right near the rectosigmoid junction if not a little to the right of it
Posted 2/24/2011 6:45 PM (GMT 0)
Hi Boat,

I have an apple not a PC so the mouse is all in one, not a right and left click device. BUt it sounds like the anasotmosis will be made high up enough. I will type in the url. I am curious and have the time now. RJ
Posted 2/25/2011 4:41 PM (GMT 0)
Please pray for me. headed to the ER. suspected septicemia. more on my site: http://www.caringbridge.org/visit/cippelztier86/journal
Posted 2/25/2011 5:17 PM (GMT 0)
Boat, this is a good level for the anastomosis. Your doc knows his stuff.

Peltz, Prayers to you.

Rosemary
Posted 2/25/2011 6:53 PM (GMT 0)
Surgery is dated for the 17th :)
Posted 2/25/2011 7:35 PM (GMT 0)
Boat,

So March 17th, St. Patrick's Day for your surgery? The luck of the Irish. Are you Irish? This could be a good omen. You are lucky. Rosemary
Posted 2/26/2011 2:44 PM (GMT 0)
Oh crap, drunk surgeons :)
Posted 2/26/2011 3:02 PM (GMT 0)
Boat,
Oh, yeah never thought of that. What time of day is your surgery. If early before the parties you should be OK. hehehehe! RJ
Posted 2/27/2011 6:11 PM (GMT 0)

Haha! Rosemary, Boat...you two make me laugh! Surgery on St. Patty's day and tipsy docs...too funny! Boat, congrats on having a surgery date. I think you will do really well- you're young, you will heal fast (but take it SLOW!), and be knocking 'em dead in med school before you know it.

 

Sarah, please keep us updated. I'm so sorry...praying for you and for great and understanding doctors!!

 

Keep praying for Lizzie...she had a bad reaction to the new medication they put her on for pain. She was sleeping all day and night, super anxious, and really, really low. The home nurse had her go back to the hospital on Thursday afternoon and she was admitted. They got her off that medication and back on the ones that have worked for her in the past. She is feeling much better and is ready to get home, but they haven't given the green light yet. Hopefully soon! Pray for encouragement, peace and continued healing for her!!

 

I had a good appointment with my GI about a week and a half ago- tried a different anti-nausea med with no luck, did another round of Xifaxan, which I think helped with the bloating a little, and scheduled an EGD for March 16th. My mom was there, and he said "at some point you just have to make a decision to go for it with surgery. She has done everything she can, and we have exhausted every avenue in terms of medication or biofeedback." It was SO helpful for him to say that to my mom's face! I think we're finally moving in the right direction. My mom really respects what my GI doc has to say- she's a research nurse and he is out at the facility she works at a couple times a week working on his research projects, so they know each other in that capacity. She thinks my surgeon walks on water too :) My GI doc is calling my surgeon for a little pow-wow...I know their preference is to do a loop, but as much as I hate making waves, I'm going to put my foot down for an end. I know having a loop will just lead to more surgery, and that is a door I don't want to flirt with.

 

Happy Sunday!

 

Allie

Posted 2/27/2011 6:55 PM (GMT 0)
Hi Allie,

Good for you! get that end ileo. Glad your mom respects the doc, but do go for the end ileo. Tell them both that you are well aware of the more surgery, the more adhesions even if done laporoscopically and that is not
anything you want to mess with. Loop ileos always turn into need for end ileo. Also tell them you are well aware that poop can slide back down through the wrong end of the loop.

Glad Lizzie's pain is better, but what is the long-term plan? Feeding through the GJ tube when she is hungry? At least that is a jump above CC just writing her off as "failure to thrive"

I am going for an upper right quadrant ultrasound on Tuesday. Stoma is working fine, but I get soooooo full so fast and have very little hunger and have a LOT of pressure over the stoma. Local doc checked for
stomal hernia and none found. Will see my surgeon for rectal mucous suctioning March 9th and will have him check too. Sure hope nothing shows up as I could never have another surgery I would die of the adhesions.
There is some natural orafice procedure they can do to get sludge out of a gall bladder if that is the issue. They put a tube down into your stomach and out into your gall bladder and suck out the sludge while you are
asleep. That would sure be the way I would go. If nothing shows, I will have to assume it's adhesions that so far are not blocking any bowel, and just live with it. No pain, just early satiety and feels heavy.

Rosemary
Posted 2/27/2011 9:10 PM (GMT 0)

Boat-Great news about your surgery!!!! You will do wonderful; just take the time to heal and foloow the low residue diet!!!!

Allie-Please tell Lizzie she is in my prayers and there isn't a day that goes by without many thoughts of her. It sounds like you're finally getting things going on a positive course with your mom, praying that you will have surgery soon and you will heal and be able to live a healthy life.

Rosemary-Praying that you don't have any adhesions  and that the drs are able to help you.  It's horrible when you feel full all the time.  When I was always getting pancreatitis, I couldn't eat hardly anything without feeling full and uncomfortable, I ended up losing like 40 lbs in a short amount of time and they still couldn't figure out what it was until they did exploritory surgery and I was full of adhesions (stomach to chest, liver to ribs, sigmoid to pelvis & numerous others). Hope you are better soon:)

I'm planning on going back to work tomorrow after having the last week & a half off.  It's been a crazy time; my PCP wanted me out longer & wants me to sit as much as possible (like that's even feasible as an elementary teacher lol) but I said I'd try to go, he said to call him & he would take me back out if it's too much. I couldn't go to my GI appt bc we both had a severe snowstorm on Fri., had some bloodwork done to see how the anemia is since the transfusions last Thurs. & the cauterization of the vessels in the small bowel on Fri. Also am having severely low potassium issues, were trying to get those under control. Very happy the leg has healed from the clot and celluitis but it's still extremely sore to walk on for any length of time and my foot and ankle swell a lot so I can only wear my boots to work, no shoes. At least I have some cute boots :) Hoping & praying the bloodwork comes back well finally and my body is in the healing mode.  It's been a looooong 4 almost 5 mos. trying to work and be drained the whole time so I'm ready to have some energy and get on with LIFE!!!! :) Plus I REEEEEEALLY want to eat my usual foods again! yeah

Praying for good health for everyone,

Judy

Posted 2/28/2011 2:41 AM (GMT 0)
Hi everyone,

Peltzier, I pray you're ok and that you had a false alarm. Also, hope and pray that you , Allie and Lizzie will one day soon not have to worry about health issues all the time. I don't come here often to write, but I do read and keep up with everyone and it just breaks my heart that the three of you are so young and have so many issues that just seem to go on and on.

Boat, I had my total colectomy for colon inertia on March 18 two years ago!! I told my doctor he wasn't allowed to celebrate St. Patty's Day that year unless he did it early in the day. My surgery was at 7 am:) Good luck, and I truly think you'll be happier with your colon gone! Judy is right about taking it slow and following the low residue diet. She told me 2 years ago to just stay on the diet, and whenever I ignored her and tried to eat something new too soon I'd have to come back and tell her she was right! :)

I'm so glad I had the surgery. It wasn't great at first; I have terrible pelvic floor issues so after the initial few weeks of going 15-20 times a day, it was very difficult for me to go and I started feeling horrible. I was doing enemas daily and not eating much at all. I was desperate and ready to have an ileostomy about 6 months after surgery when my doctor told me to try miralax and it's been a miracle drug for me. I take it twice a day and eat pretty much what I want. I definitely do much better if I don't eat really large meals, and I do still go about 8 - 10 times a day, but it is so much better than not going at all. I wish you the best!

Rosemary,

when I read that you ate all those cookies for dinner I laughed, because I do the same thing sometimes! I have a horrible sweet tooth and after 2 years, I have officially gained back 10 of the 12 pounds I lost! Darn it:(

Judy,
You've really had some issues too, haven't you? You always sound so upbeat (bet your boots are cute!). I hope you'll be eating your regular foods again soon. You're always such an inspiration here! How are your daughters doing?

Tracy, Hodaya, Marisa and I know so many others I've missed....I think of you all often and keep you all in my prayers.

Hugs,
Janie
Posted 3/1/2011 1:36 AM (GMT 0)

Janie- It's so good to hear from you; like you I always keep up with the news but haven't had time to post until this past week.  So glad the miralax has worked for you!!!! I know you were having such a difficult time shortly after your surgery but it's nice to see that things are better:)  I know that once you've had your colon removed it's aweful when you can't go to the bathroom and that going several times is sooooo much better than not going at all.

Our daughters are doing very well; the youngest (Stacy) who lives in Myrtle Beach was just going to come back home (NY) because she was stagnant at her job but I talked her into staying for a month and looking for a new job because she loves the beach and wouldn't be happy coming back to this cold, snowy weather.  She ended up getting 2 jobs in one day, one at Texas Roadhouse & one at Margaritaville.  They wanted her to be a supervisor for Margaritaville but she wanted to be a server first to see what her employers experience first.  The general manager really liked her response to that question so she's going to work both jobs and decide what to do in April when it becomes tourist season. Our other daughter (Stephanie) is living with us and still has her CRAZY boxer puppy who is now almost 10 mos old. She's (the puppy) is actually finallyy starting to settle down, but I just had to give my cat away because she tormented it terribly.  Anyway, Stephanie is doing well, she will probably be with us for a loooooong time as she just signed up for an online master's program in physcology.  She also works full time for a local hospital in the kitchen as a cook. 

Thanks for the encouraging words; I always think I'm going to get through one school year without some medical issue but it never seems to work out.  The only thing I can do is be positive; I love my job though this year may just push me over the edge stress wise as I have the most challenging class I've ever had.  But I'm always looking for ways to help them to learn and grow academically, socially and emotionally.  Just hoping we can figure out the diarrhea so we can get the anemia under control.

It's been chatting with you; I miss chatting with all the 'old' people that were on here.  I know we are all busy but it's still nice to catch up:)

Praying for all,

Judy

Posted 3/1/2011 2:59 PM (GMT 0)
What pelvic floor issues do you have? Will you get the urge and then you just cant get it out? And did any of the tests show you had pelvic floor problems?

Janiepain said...
Hi everyone,

Peltzier, I pray you're ok and that you had a false alarm. Also, hope and pray that you , Allie and Lizzie will one day soon not have to worry about health issues all the time. I don't come here often to write, but I do read and keep up with everyone and it just breaks my heart that the three of you are so young and have so many issues that just seem to go on and on.

Boat, I had my total colectomy for colon inertia on March 18 two years ago!! I told my doctor he wasn't allowed to celebrate St. Patty's Day that year unless he did it early in the day. My surgery was at 7 am:) Good luck, and I truly think you'll be happier with your colon gone! Judy is right about taking it slow and following the low residue diet. She told me 2 years ago to just stay on the diet, and whenever I ignored her and tried to eat something new too soon I'd have to come back and tell her she was right! :)

I'm so glad I had the surgery. It wasn't great at first; I have terrible pelvic floor issues so after the initial few weeks of going 15-20 times a day, it was very difficult for me to go and I started feeling horrible. I was doing enemas daily and not eating much at all. I was desperate and ready to have an ileostomy about 6 months after surgery when my doctor told me to try miralax and it's been a miracle drug for me. I take it twice a day and eat pretty much what I want. I definitely do much better if I don't eat really large meals, and I do still go about 8 - 10 times a day, but it is so much better than not going at all. I wish you the best!

Rosemary,

when I read that you ate all those cookies for dinner I laughed, because I do the same thing sometimes! I have a horrible sweet tooth and after 2 years, I have officially gained back 10 of the 12 pounds I lost! Darn it:(

Judy,
You've really had some issues too, haven't you? You always sound so upbeat (bet your boots are cute!). I hope you'll be eating your regular foods again soon. You're always such an inspiration here! How are your daughters doing?

Tracy, Hodaya, Marisa and I know so many others I've missed....I think of you all often and keep you all in my prayers.

Hugs,
Janie

Post Edited (boatnerj) : 3/1/2011 8:07:00 AM (GMT-7)

Posted 3/1/2011 11:07 PM (GMT 0)
Hi my friends, how has everyone been? I cant remember what I updated you all on last time. I started Reglan three weeks ago and it was terrible!! OMG, I felt like committing suicide after day three of taking it four times a day. I called my doctor and he switched me to domperadone. Miracle drug. It is not yet approved here in the US. But, it is definetly better than the Reglan. All my research I have done on Reglan is bad. I dont know why it is still being used. Anyhow so now I am feeling phenominal. I have no more pain in my gut. And the poo is doing so much better also. My diagnosis is gastroparesis. Which means the stomach is paralyzed so food was just sitting in my belly and causing significant damage. The pictures of my stomach were so disgusting. There was a bunch of yellow fluid in there and the lining also had a lot of erosions. Cool pictures though.

Boat you crack me up, about the drunk doctors. I had a friend once that was having a baby and when he walked in she asked if he had been drinking! It was so funny! I do not think you need to worry about that though. But just to be sure make sure to ask!
Posted 3/2/2011 2:54 AM (GMT 0)
Marisa,

Glad to hear of the Domperadone working so well for you. I never had gastroparesis, but after the 2006 damaging surgery that I ended up not needing which then lead me to need an ostomy,
one of my defendant surgeons put me on Reglan post-op. It had the same side effect on me as it did on you. only I was written up as crazy. It says right on the label "may cause suicidal tendency."
Why the H--- would a drug with that side effect ever be kept on the market? Likely a big money maker for some pharmaceutical company. After my lysis of adhesions and ileo surgery they gave
me some prokinetic drug, but I was fine as it was not Reglan.

Boat,

Many of women's pelvic floor problems come from having had hysterectomies or from child birth. All your tests seemed so good that I don't think you have anything to worry about. But in case
Janie does not check back for awhile, I can answer your question. On your dynamic MRI and your defecogram it should have showed or stated that your anorectal angle widened for defecation, and
angled at about 90 degrees for continence. In anismus, the anorectal angle stays at 90 degrees all of the time because the puborectalis muscle (sling-like muscle around the back of the rectum) does
not relax enough to allow the rectum to straighten for defecation. I do not remember you having this issue. I never did until my defendants got done with me for the unneeded 2006 surgery. They
scarred my levator muscle which connects with the puborectalis muscle and actually scarred my anorectal angle at 90 degrees. But prior to that it angled at 90 degrees at rest, narrowed a bit more
at squeeze, and widened to I think around 150 degrees for defecation. So that is a normal change of angle. check back on your reports.

Tipsy surgeons awaiting you. hehehe! happpy St. Patrick's day. Kidding.

Rosemary
Posted 3/4/2011 6:43 PM (GMT 0)

Hi All!

 

Marisa, I am so glad to hear the Domperidone is working for you! This is such great news, as Reglan truly is a dangerous drug. Lizzie and I both had the same reaction to it- tardive dyskinesia. If you look on youtube, you can see exactly what happens, and for many patients, it becomes a permanent disability. We are very fortunate it wasn't permanent!

 

Lizzie got to go home on Tuesday and is feeling pretty good! Yay!!!!!!! She still has pain, but it is tolerable and controlled on the current pain meds. She sounds great- her voice is stronger everyday and things are really heading in the right direction :) She has her first appointment with the outpatient pain doc next week. The pain from her feeding tube is also much, much better. If you remember, she had about 3 weeks of constant low-grade fevers; the tube site was red, swollen, and angry. They immediately started IV antibiotics, and all of that cleared right up. All in all, good news!! :) Keep praying for healing and encouragement...I know she is beyond ready to get her life back!

 

Sarah, I read your CaringBridge site this morning...no giving up, girl! You can do this, and it sounds like the neuro-urologist is going to do whatever he can to grease the wheels with the chief doc. Keep fighting!

 

I know that my GI doc and surgeon had a good talk earlier this week, but my GI doc has been on call all week and hasn't had a change to give me the full report yet. They are both great doctors- calm, methodical, and really listen...I believe this was their first "meeting," so hopefully they will team up on other cases in the future. I'm trying to finish my classes this semester because I will be out a truckload of money if I drop them. Spasms have been waking me up in the middle of the night, and I think I have been grinding my teeth at night (something I have never done before) due to pain. I guess we'll see!

 

Love and prayers to you all!

 

Allie

Posted 3/4/2011 7:31 PM (GMT 0)
Wow Allie, thanks for the update. That is great news about Lizzie. Had the hospital who did the feeding tube not jumped in she would be sliding away as CC just cast her aside. She is truly an inspiration. She and I have GOT
to collaborate on a book. Others too. I know I have mine all basically done with pictures and all. Just have to assemble it. Mine will be about unneeded surgeries, done wrong, yada yada. Hers could be a needed surgery, but
then too many and serious consquences and then adhesions big time, then some unknown. but all stories of survival....as all of ours are.

Best wishes with your semester. Glad all is looking good for you at Mayo. Rosemary
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