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TOTAL COLECTOMY PART 30

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Posted 1/11/2010 8:41 PM (GMT 0)
http://www.medscape.com/viewarticle/410569
http://www.liebertonline.com/doi/abs/10.1089/108729100318073
http://www.britannica.com/bps/additionalcontent/18/33931770/Superior-mesenteric-artery-syndrome-and-anaesthesia
http://www.bhj.org/journal/2009_5104_oct/download/pg503-507.pdf

there is a test you can check for duodenal compression by the artery with: it is called (CT) angiography. IT is not uncommon to have normal results with the normal CT abdomen etc.
Posted 1/11/2010 9:31 PM (GMT 0)
Lizzie, what did the BCIR team decide today?  Have you heard anything from Cleveland Clinic and/or has your doctor shared anymore information with you about how you're doing and what's happening with you?

I got an infection this weekend, around the outside of my tube, and am on antibiotics now.  I couldn't move without it hurting badly.  It looks like I have a really red rash and it scared me.  I couldn't see a doctor, just called the surgeon on call in my surgeon's office group.  He remembered seeing me last summer and said I remember you.  You're the one with the difficult case and 3 tubes.  I said, you got that right!

I really hope that someone can help you.  You really need some relief, however you can get it.  My prayers are always with you, Lizzie, and I really hope you can get a doctor that will help you soon.

butterfly

Posted 1/11/2010 10:04 PM (GMT 0)
Hoddaya,
have you tried to cut all gluten out of your diet. If you are sensitive or have sprue then this can cause severe motility problem in the end stages without treatment. But mostly it is reversible by treatment and avoiding gluten. Unfortuntaely it is not only found in bread, pasta and co, but also in many other products as added substances in the ingredience list.
Posted 1/11/2010 10:34 PM (GMT 0)
So I have been approved as a candidate for the BCIR as of 4 pm today. My case was presented at 11 am and they called me about 3 or so.....Also, I spoke to my surgeon about SMA and he does not think I have the correct symptoms at all?? but then again he has been wrong before. I am thinking of doing the BCIR, but now I am in an insurance battle....I dont know. I have had an ok day....not feeling well right now, but just wanted to update you.

Lizzie

Posted 1/11/2010 11:29 PM (GMT 0)
what? Vomiting (partially) undigested food and pain 20-30min after eating are true sign of SMA syndrome! If it was something with your stomach alone then you would not have dilated bowel loops, signs of obstrcution!
I guess he is one of the docs who only belives in data and images and forget about the clinical picture. Please, read the articles I mentioned.
Then decide yourself if your symptoms fit or not. Please do not go for the BICR if unless you haven't been tested for SMA syndrome. As I mentioned above to exclude it you have to run an abdominal angiograophy (radiographic imaging of the arteries/vessels in your abdomen.

Docs are humans and do make false decisions and faults. Sorry, but if I were you I would not believe your doc at all. You have a body sense and an inner feeling of what is going on, at least you normally have a vage idea. And as far as I have understood you corretcly this feeling does tell you that there is something wrong beside the rectal obstrcution.
Posted 1/11/2010 11:36 PM (GMT 0)
please read!
http://en.wikipedia.org/wiki/Superior_mesenteric_artery_syndrome

"Diagnosis is very difficult, and usually one of exclusion...
SMA syndrome since symptoms do not always correlate well with radiologic findings...
Since females between the ages of 10 and 30 are most frequently afflicted, it is not uncommon for physicians to initially and incorrectly assume that emaciation is a choice of the patient instead of a consequence of SMA syndrome in its chronic form. Patients in the earlier stages of chronic SMA syndrome often remain unaware that they are ill until substantial damage to their health is done, since they may attempt to adapt to the condition by gradually decreasing their food intake or naturally gravitating toward a lighter and more digestible die...

Symptoms include early satiety, nausea, bilious vomiting of large quantities of partially undigested food, extreme "stabbing" postprandial abdominal pain (due to both the duodenal compression and the compensatory reversed peristalsis), abdominal distention/distortion, eructation, external hypersensitivity or tenderness of the abdominal area, and severe malnutrition accompanying spontaneous wasting. [6] This, in turn, increases the duodenal compression, spurring a vicious cycle.[7] Symptoms are partially relieved when in the left lateral decubitus or knee-to-chest position. A Hayes maneuver (pressure applied below the umbilicus in cephalad and dorsal direction) elevates the root of the SMA, also slightly easing the constriction. Symptoms are often aggravated when leaning to the right or taking a supine (face up) position.[6]"
Posted 1/12/2010 12:56 AM (GMT 0)
Lizzie, why the insurance battle? I hope they do something and do it quickly so you can get better. You have been sick for so long. I am glad you are feeling a bit better today.
Posted 1/12/2010 6:24 AM (GMT 0)
Hello Hodaya,

You might want to ask your doctor about the possibility of you having SIBO (small intestine bacterial overgrowth). I think there can be various symptoms but bloating and gas go along with that condition. My doctors treated me a couple of times with a specialized antibiotic called Xifaxan. This antibiotic just works on the intestines; I guess it doesn't go into the blood-stream; not really sure but they said it is a different type of anti-biotic than most. Anyway you could ask them about it. I really hope that your doctors can help you. I am praying for all the wonderful women who post on this site, who deserve to get well and live a normal life!

Lizzie, as always I am thinking about you and praying that your doctors "put their heads together" and do something to really help you!

Gilda
Posted 1/12/2010 1:48 PM (GMT 0)
Lizzie,

They need to TEST you for SMA before they rule it out!!!!!!!!!!!!!!!  If you have some small bowel motility issue (problems with the workings of your small intestine) they need to find out what it is PRIOR to doing any surgery on you.

Keep in mind the BIRC is an INTERNAL pouch!  If you have issues with this, medical world will tell you "It's all in your mind".  If pouch is on your outside as in an ileostomy, and it is not filling, it is a visual aid, even medical workers will have to observe "empty pouch."  I don't mean to sound cynical or tell you what to do, but you have not been worked up.  The docs all sat about and gave their best "opinions" as to what to do for you.  I believe they are honest.  BUT these are just opinions.  Ask on what basis they are basing their opinions then try for the complete work-up.  You will not survive one more failed procedure.  I worry and pray for you.  Rosemary

Posted 1/12/2010 2:06 PM (GMT 0)
Lizzie, I agree with Rosemary.  You have been through so much.  I hate to see you getting the BCIR and then have more problems.  Sometimes simple is better.  If it is what you truly want, make sure that every test possible is ran beforehand to make sure BCIR is the way to go.  I'm sorry to say, too, Rosemary is also right about your possibly not surviving another surgery. 

Whenever we go into our types of surgery, nothing is certain.  We've discussed that we have alot of the same problems.  The one difference is that you had an ileostomy with a stoma and I have one with a leg bag.  Truthfully, Dr. Wexner is one of the best colorectal surgeons in the country and said that I am a very difficult case and surgery is going to be critical to perform at the right time (when my small intestines have healed). 

Please send your medical info into Dr. Wexner before you have the BCIR procedure done, and then decide.  I promise you that it could determine the rest of your life.  If my surgery doesn't work, I may be on a pic line or worse for the rest of my life.  You don't want that to happen to you and I am so concerned for you.

butterfly

Posted 1/12/2010 5:18 PM (GMT 0)
Lizzie,

Ask for the SMA test Peltz described.  YOU HAD STARTED THE VOMITING PRIOR TO YOUR ILEOSTOMY TAKE DOWN, RIGHT?

tHEN IT got worse, right?

I think Peltz is right, you have some other issue, could be the SMA.

Don't let them do any surgery on you until they rule out SMA.  Any further surgery may make you worse if you have this underlying condition.

I just had a minute and remembered your vomiting began PRIOR to the take down, therefore, I think Peltz is right.

Tell your docs of the vomiting starting prior to the take down.

As always, all  my love and support, Rosemary in Cozumel

 

Posted 1/12/2010 6:32 PM (GMT 0)
Hi all...

Thanks for all your love and concern. I have not been feeling well so its hard to write on here. I had some testing this am since my belly is distended bigger and the pain was worse this morning. I am on tpn/lipids still and have not been able to eat anything. I am having a horrible time with insurance because I have an HMO. I have good insurance, but the BCIR clinic said I may end up with an emergent ileo before this all can be sorted. whatever happens...happens. I talked about the SMA and he (my surgeon) just does not think I have the critical components of it, I even had his rounding nurse who thinks something else is wrong too, but he did not listen to him either. They said they have done so much testing on me and have found nothing.....nothing at all and they keep joking I have an alien in my abdomen? I laugh, but its also frustrating since they feel they have worked me up and I do too, but these specific tests they do not think are necessary??? Its hard to convince someone to do something for something they do not think you have. Arghhh....having a frustrating day and being in the hospital makes it worse.

Lizzie

Posted 1/12/2010 7:05 PM (GMT 0)
Sarah, i cut all gluten, i don't think any of the foods i'm eating have gluten in it, so i don't know. Gilda, what test do they do to find the SIBO? i was also thinking that all that's been going on with me in the past few days is due to some kind of a bug, but anyway, just got back from my internist and he checked my abd and thinks i may have an obstruction and told me to go to the ER in the morning to have some x rays or ct or whatever they decide to do. i don't know..... how can it be an obstruction? cuz i still have some bms and i'm not vomiting or have nausea. i told him that, but he still wants me to go. maybe he just doesn't want to take any chances and just better be safe than sorry...?? i do have an obstruction within the rectum. my rectum is having some REAL hard time expeling the stools, but all of this irrational gas building up, and it's not something that developed slowly, it just happened all of a sudden w/o me even eating when it started. i don't know, i will go to the er tomorrow and see what they say. Lizzie, i'm worried about you! oh i just hope it's not another emergency surgery. i'm keeping you in my prayers.
Posted 1/12/2010 7:20 PM (GMT 0)
H Hodaya,

I am so sorry you didn't get a definate answer at your doctor visit. My doctor just put me on Xifaxan because I wasn't available for the test at the time. I think the test is called the "Hydrogen Breath Test." Just look up SIBO on the internet and you can find information about this condition. Good Luck to you and to Lizzie.

Gilda
Posted 1/12/2010 8:18 PM (GMT 0)
Gilda, thanks! yeah, that's what i had in mind.. the breath test. i know this bug by the name Helicobacter pylori.. are we talking about the same bug..? but i will mention the SIBO to the drs and see what they say. but anyway, he said he's not sending me for this test yet, cuz he wants to rull out an obstruction first, but i don't think i have an obstruction.. will see tomorrow. thanks again.
Posted 1/12/2010 11:27 PM (GMT 0)
Lizzie,

You asked all the right questions and are not being listened to.

If they have to do an emergent ileostomy and it does not work and you die, they are liable and would be up for a wrongful death suit, if you do have SMA and have not received the CT angiogram that Peltz mentioned AND that you have asked about.  lEGALLY THIS IS CALLED "LOST CHANCE."

You do have an ally in your corner, the rounding nurse that you mentioned.  Would you be able to run this by him?

THE MOST CRITICAL THING TO MENTION IS THAT THIS VOMITING STARTED BEFORE YOUR ILEO TAKE DOWN.   thIS IS the SIGN THAT YOU HAVE UNDERLYING MOTILITY ISSUES.

MENTION THAT IF YOU HAVE NOT ALREADY.  As if you don't already have enough to do, you now have to play hard ball more so than ever in your life.

If they propose the emergent ileo, WRITE UP YOUR OWN CONTRACT SAYING THE FOLLOWING:  i, lIZZIE tINSMAN, HAVE REQUESTED TESTING TO RULE OUT SMA (SPECIFICALLY CT ANGIOGRAPHY) PRIOR TO HAVING ANY FUTURE SURGERY."  YOU SIGN IT AND FORCE THEM TO SIGN IT.  mY GUESS IS ONCE THEY START SIGNING THINGS THEY MAY START TO LISTEN AND DO THE TEST. THAT WAY IF THEY DO SURGERY AND YOU STILL HAVE NO OUTPUT, YOU CAN JUST SHOW THEM THE CONTRACT AND AT LEAST YOU WILL NOT HAVE TO LISTEN TO ALL THEIR "IT'S ALL IN YOUR MIND CRAP."

aLSO YOU ARE THE ONE WHOSE LIFE IS ON THE LINE.

cALL THE TELEPHONE OPERATOR OF THE HOSPITAL AND ASK TO SPEAK WITH THE PATIENT ADVOCATE.  gIVE THEM THE SHORT FORM AND ASK THAT YOU HAVE THE TEST FOR SMA.  hAVE THE ROUNDING NURSE ALSO SPEAK TO THEM.  yOU ARE FIGHTING FOR YOUR LIFE, NOBODY ELSE WILL.

Sorry of all these capital letters, this computer is possessed.

good luck.  rOSEMARY

Posted 1/13/2010 12:31 AM (GMT 0)
Hodaya so sorry to hear that you have been feeling ill. Hope you get well soon. Its never going to end for us is it?

Lizzie, thankyou for keeping us updated. Thinking of you always!

Rosemary, hope you are warm and having a great time.

I am terribly backed up in the poo department. I tried eating yesterday because I am so hungry and so this is what I get. Going to try to take some laxatives tonight. Think happy pooping for me!! Getting very discouraged these days. My boss always has some snide remark to make all the time my about my condition. Very sick of it all!! One more week and then I can let it all go at staff meeting.

Well, I love all you so much and will keep you all in my prayers.
Posted 1/13/2010 12:44 PM (GMT 0)
Hi all....

Still in hospital (day 6) and still on ton/lipids and cannot eat. I had xrays yesterday am becuase I was in so much pain and my obstruction has worsened some. I have all the correct paperwork in for FL, but now its up to the medical director at my insurance co to decide if he will approve the out-of-network surgery. I do not know how I feel this will go. I have been on dilaudid and IR oxy and toradol. I spoke with Dr. Rehnke yesterday in FL and he is soooooo nice and told me if I was approved to come down and he would fit me in instead of waiting until I was scheduled by his office (who was not very nice). Anyways....I have been getting ppn and I think they may have to give me a PICC line today. I had two iv's go sub-q and I have to have 2 and it took 6-7 pokes to get one in and it huts very badlt this am and my hand looks like I was stung by a bee where it went bad yesterday. I will continue to ask about the testing for SMA....prior to any surgery.

Enough about me....

Jen, how r u????? have you been able to kee p anything down?

Hodaya- What is going on girlie, please keep us updated sweetie....so so so worried about you.

Marisa- Sorry you are having a bad pooping day and you of all need to keep eating, you are so underweight still....I hate all of this malarky your going through with your coworkers and bosses....thinking of you and prating for you.

Rosemary and Pelts- Thanks for all your continued support...you are both angels even from so far away.

Judy, Janie, Christy, and everyone else, Gilda....hope you are all well....thinking of you all.

Lizzie

Posted 1/13/2010 1:13 PM (GMT 0)
Just popping in to say good morning.. and thinking of you Lizzie! Don't let things stress you... Everyone here has given you good advise. Hang in there!

Ate some green bean yesterday - and added some fiber to diet - giving me a great amount of gas and bloating.. need to go slow.. but it tastes good! Walked 1.5 miles yesterday..plan to do it again today! Post op appointment #2 is tomorrow with uro-gyn.. he always gives me lots of info so looking forward to that appointment!

Marissa, that's awful about the snide remarks.. people can be just so insensitive and stupid! Hope you feel better soon!

Hodaya, Please DO go to the ER and have the x-rays. The fecal impaction I had called an obstruction. Reading about it - it causes nausea and stuff too - which I had none of. You could be particale blocked and still have BM's... better safe than sorry. Have you tried just being on a liquid diet? Glad you have a good GI.

butterfly, sorry about your infection!! Is it getting any better? You must be grateful that you live close enough to see Dr. Wexner.. I have heard nothing but good things about him! Wasn't it you who said you knew my surgeon, Dr. Frattini? I'm grateful that he was so cautious.. and he presented my case before a whole group of doctors. You're right - going into surgery - nothing is for sure, but finding the right doctors - the chances are much more favorable! What is you're next step in surgery?
Posted 1/13/2010 3:58 PM (GMT 0)
Lizzie,  Good luck; they have you on so many meds.  All those pokes.  Glad at least Dr. Rhencke was nice.  Maybe he will ask about the SMA test for you.  Any empathetic connection is a good thing.

I just had a ton of breakfast and passing very little into my bag.  It used to pass rapidly, but feel OK, so going on tender boat to Balize City for airboat ride.  It's about 60 here in Belize, still all on the cool side, but no complaints. 

Suit against 2 original 2006 surgeons has been approved.  I still have a bit more radiology education to convince the legals of, but will persevere.  I pray for us all.  Thanks for you well wishes.  Will do another lap around deck in hopes of a bag move.  Hope nothing is going awry.

Rosemary

Posted 1/13/2010 6:35 PM (GMT 0)
Hello everyone,
Lizzie, as always I'm praying for you sweetie. I think you're getting great advice from those here who think you need extra testing before any further surgery. You absolutely want to make sure this next surgery is truly what you need; your poor little body can't take much more. I know when you're sitting in the hospital feeling weak and miserable it's difficult to fight, but please make sure your husband and mother are fighting for you.

Hodaya,
I'm so sorry you're having such difficulties! Have you been able to try the normalax (or whatever it is that you call it!) It works well for me most of the time and I just pray it never stops. I don't know what I'd do without it. If you find out that you don't have an obstruction (and I hope you don't) then please try it.

Rosemary,
Glad you're having fun despite the cool weather. We haven't been to Belize on a cruise in a few years, but I understand they have really made the port there nice. Hope you have a wonderful time, and congratulations on your approval for your suit!

Jenise, glad you're doing well. I haven't been able to add too much fiber; just bloats me and backs me up. Go slow!!

Marisa,
I thought you were doing well?? Have you tried miralax? I seem to be a walking commercial for the stuff, but I swear by it now. I've had a few bad days since taking it, but if I don't eat too much at one time it does pretty well. It is definitely so much better than before I started taking it.

Lori,
Hope your infection is healing and that in June you'll be able to get rid of that leg bag. I can't imagine how difficult that much be. You're always in my thoughts!

Sorry for anyone I missed, but gotta run back to work. Hoping everyone is doing well and having a good day!

Janie
Posted 1/13/2010 7:31 PM (GMT 0)
Good afternoon everybody. I pray that each of us has a better quality of life soon! You all are wonderful and deserve to feel healthy.

I'm home from work today. My infection got worse and spread farther down around my tube. I'm running a low grade fever, but am on antibiotics. Hope to be feeling better soon.

I have another test at the hospital on Monday. I'm taking all of my test results to Dr. Wexner in March, and hopefully will still be able to have surgery in June if my small intestines have had time to heal. My surgery will take my leg bag that runs to my small intestine, and exchange it for an ileostomy with stoma. I'll be happy not to have tube obstructions that occur weekly. My tube is small and food gets stuck in it very easily. I really hope that a stoma doesn't obstruct so easily.

Do people with ileostomies have problems with constipation? Before my last surgery, I was told that it was impossible to have constipation with an ileostomy.

butterfly
Posted 1/13/2010 11:28 PM (GMT 0)
Hi All,

Just emailed Tracy that Belize was super. 70 and sunny and dry. Real nice shopping and awesome air boat ride. We tilted left, right, and did 360 degree turns with water spraying up. AWESOME!!!!

LIzzie, praying for you and all the others, but you esp. right now. Sorry to be short but minutes costing. Sincerely, Rosemary
Posted 1/14/2010 12:46 AM (GMT 0)
Hi all.....

Well I got a PICC line today and started different Tpn/Lipids and have not heard from my insurance company. I have bad feelings, but will do whatever I have to. I am getting sicker, not better and belly is HUGE!!! Bigger than it has ever been. The pain is not controlled, but I am taking all I can for now. I am so sick of the hospital I am going insane....I will climb out the window.....seriously. I cant sleep, eat, tv is boring, all I do is walk and that gets boring....just want to get on with whatever is going to happen before i get too sick. Hope you are all well....sorry for short post. Thanks for all your prayers,

Lizzie

Posted 1/14/2010 1:11 AM (GMT 0)
Lizzie,

How do they put the picc line in?  Does it hurt?

Did they agree to give you the CT angiography to rule out SMA? 

Praying for you as always.  Rosemary

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