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TOTAL COLECTOMY PART 30

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Posted 1/4/2010 11:48 PM (GMT 0)
Hi Lizzie,

Your email address and phone number have not yet come through to my email. Is texting where you send it from your cell phone? (You are of the techie age and I'm so not :-) At any rate, I just wanted you to know I don't have it yet. When I do get it, I will send you my private Lahey contact's tel num.

Glad FL is reviewing your records. For films I just called the Film Library at the hospitals. If your tests were stored electronically they may all be on DVD. You would ask at the records office of each of the hospitals where you've had the tests. Maybe just a copy of what you sent to FL would also due for Lahey. Each hospital has such different ways to store these imaging tests. Start ordering copies of all these tests now as it takes awhile to process.

The reason you've not lost more than 10 lbs is that your body by now has entered starvation mode ie. all you feel like doing is sleeping. This is to conserve calories so your body can still move (obviously you are if you are working, am not sure HOW you're doing this but more power to you. It's likely good diversion emotionally) As the starvation process progresses you also begin to lose muscle mass. Calcium is taken from your bones and teeth so that your blood serum levels of calcium are normal so your organs get enough calcium to function. Am not sure of the mechanism, but your body basically feeds off itself in order to have good blood readings; these indicate your body is compensating for no food.

As I was without food for 13 months, when I finally was able to eat again, I gained 35 lbs very quickly by eating only yogurt, cereal, baby food meats, and cottage cheese. My metabolism had slowed so much to keep me alive that it never regained it's normal rate.. I always had a fast metabolism. Now it is much slower so I have to watch I don't gain too much weight. My metabolic rate will never recover as I was over a year without food. If you get prompter attention than I did, yours will recover. That is what we are aiming for here.

Only you and which ever surgeon you hook up with will decide about BCIR or regular ileostomy, but with the complications you have had and your body being so worn down, I would opt for an ileostomy stoma made correctly. BUT you are only 29, married, still in the prime of your life, so your situation is different. I just would hate to see you have problems with the BCIR. BUT you will decide what is right for you and FL or Lahey can guide you. You MAY want to get two opinions regarding this decision.

Glad I could help you. I'm "playing it forward" to use what I learned to help others. The saddest situations are those where people succumb to being ignored and not dealt with. Disease and accidents are horrific, but the situation you are in with all the shunning, as was I, makes a more frustrating scenario as we are basically healthy people who have real damages that need unraveling. I'm not saying your complications were sustained in the same way as mine; your surgeons very likely meant well and did what they thought was right for you and you are experiencing complications. BUT where this turns is that you have been shunned big time.

Sounds like things are turning around for you; I'm so happy. Keep me posted. If you email me your contact info from a computer it may get to my email faster.

Glad to hear from you. Rosemary
Posted 1/5/2010 12:38 AM (GMT 0)
Rosemary, you have been a blessing here. Lizzie (and all of us) are fortunately you never give up and keep searching till you find something that will help. I think the last few days before a trip is hard - because your almost packed, but can't finish because of last minute stuff. Yeah, the 8 cm is a large amount of pelvic floor descent. I googled pelvic floor decent, and it apparently gives a lot of women BM issues - either constipation or incontinence - especially when they are elderly - scary!

Lizzie ((HUGS)) hang in there, and know that many people are praying for you. I'm a diet expert... (been dieting for years) and Rosemary is 100% correct, your body is in 'starvation mode'. Your body has shut down so that it tries not to lose weight, unfortunately - it will start taking away from any muscle mass you have. Oh.. just reading what Rosemary typed, and she just has a much betterr way with words than I do! Try as hard as you can to find any food with protein that will stay down.. maybe a protein drink you could sip.

Janie, yes - I seem to go often and just little bits at a time. Sometimes no more than a tablespoon, other times maybe 1/2 cup. My biggest fear is that the MiraLax will stop working.. and than I wonder just how safe is taking 3 doses a day long term.

pelztier, can you share your original story a bit? Did you have a resection because of CI? Did you have 2 surgeries or a total of 3?

I called my doctor today and described what happened over the weekend. Last night my incision was burning a lot and I felt a bump, however, I woke up feeling good.. but my mother and sister encouraged me to call. I did call for peace of mind and they said it sounded like fibrous scar issue breaking, which can occasional happen with too much abdominal pressure (the sneeze). I was told what to watch for (fever, bloating etc..) and to call again if things don't get better or they get worse. Hummm.. now it is starting to indent again like it was on Thursday. Glad my appointment is next week, as it looks a little weird.

Marisa and Judy, hope you both had a good day back to work.

Hodaya, Tracy, Amey and others.. hope you're doing well!
Posted 1/5/2010 2:40 AM (GMT 0)
Hi Jenise,

Thanks.

I'd keep taking the 3 doses of Miralax if it's working. From all I've heard it's very safe.

Coming down the home stretch in packing. I may have to take another suit case. Glad I shipped the two biggest ones down. Rosemary
Posted 1/5/2010 3:06 AM (GMT 0)
Peltzier,
Thanks so much for answering. I'm sorry you've had so much trouble, but are you doing ok now with your ileostomy? How often do you have to have the mucas removed? Is that common?

Lizzie,
I pray FL will be able to help you, but you have a back up with Lahey. Rosemary, you are amazing and you're an angel to help Lizzie (and all of us) the way you have. I hope you have an incredible vacation, and please keep in touch. Also, just FYI, it is really cold here (I know, I'm a wimp) so be sure to pack some long pants and a couple sweaters!!

Jenise,
I would love to not go so often, but more at one time. I was thinking of taking miralax at lunch as well as breakfast and dinner because if I eat anything during the day after my morning poops, I can still get "full" and have to do an enema when I get home. There's never too much there, but I feel so much better as soon as I do it. I have always thought they were gross, but I swear by them now. It only takes me about 5 minutes and the relief is amazing. I hate living like this, but it's better than taking laxatives once a week and praying it will work.


Amey,
How are you doing? I think of you and your issues often and I know you have your hands full. I hope you're at least feeling well and not having poop issues.

goodnight everyone....
Posted 1/5/2010 4:15 AM (GMT 0)

I have been trying to catch up on all the posts but am having major difficulty due to the blurred vision caused by the nausea medication. They reduced my Reglan to 5mg at a time instead of 10mg and I am able to tolerate it and it works.  I am able to eat but I also have to take the nausea medication Phenagran prior to eating also.  I am still taking my Wellbutrin.  They also have me on iron pills becasue my hemoglobin was at 6.9 and should be around 12.  So I am anemic on top of everything else.  I stay tired and was in bed basically all day today.  I have also been cramping which I think is due to actually eating now.  My body is not used to food...lol.  So I have to take oxycodone to battle the cramps and lower back pain.  So basically I feel drugged all the time.  I am able to go to the bathroom at least 3 times a day so all that is working. 

Based on my skimming of the posts many of you are still having issues with bms.  I am really sorry you gals are having so much trouble. 

Lizzie I am thinking of you and praying things get better for you.  I am really worried and think about you all the time.

I will try to read all the posts and catch up. It is so hard when everything is blurry.  I think I am going to have to change nausea meds because when I start back to work I have to be able to see to type up reports. 

Praying for you all.

Jen

Posted 1/5/2010 4:21 AM (GMT 0)
Hi Janie,

Thanks, glad to help Lizzie. Having a plan B is always a great thing. Takes the pressure off if plan A falls through.

Due to my rectal scarring and injuries of my puborectalis muscle from that 2006 apparently unneeded surgery, I too like Peltz have to have mucous suctioned out of my rectum. At first I went about every month, then every 3 months, then every 6 months, now I can go a year. The mucous production of my defunctioned colon and rectum really seems to have dropped off. My ileo surgeon said some people just produce more than others and others the mucous production drops right off. Lucky I'm not a big producer I guess under these circumstances.

I think I'm going to have to take a whole 'nother suit case. I shipped 2 and thought I'd have my LARGE purse and my ostomy suit case on wheels. But now I gotta fit more stuff into the ostomy case which is about ready to pop at the seems. Sure can't ship that stuff. Whenever I think of having a hysterectomy at 38 for real heavy bleeding during some periods I have to absolutely cringe. If I ever knew having that could lead to whatever bowel issue I had (be it nerve, muscle, maybe the rectocele but certainly not the sigmoidocele I was operated on for, and all that followed), I would gladly have lugged a whole suit case of super size sanitary napkins with me! As it ends up with the way life went, I'm now lugging ostomy supplies. Good Grief! The unknown directions life can take, huh? (But, with the twists and turns of my whole story I'm lucky to be lugging ostomy supplies and able to travel.)

Have a good night everyone. Rosemary
Posted 1/5/2010 4:24 AM (GMT 0)
Jen,

I was thinking of you when I was taking my walk around the block before going to bed. It's great that you are able to poop being on all that medication. Glad things are working in that department. I'd get that blurry vision med changed for sure. Good luck. Rosemary
Posted 1/5/2010 6:01 AM (GMT 0)
Having severe panic attack right now :( I wish you all were closer....my husband just held me for 15 min and i took some xanax, but i puked 4 times today and had percocet earlier for my abd pain then I had to take MOM and after it finally worked tonight I got all weak and thats whats starts the attacks....ughhhh....i hate this...so much. My worst symptom is not being able to swallow when i have the attacks.

Jen- Good talking to you tonight....lve u sweetie. Hgb 6.9 is transfusion worthy...thats is so low and I say this because i am a oncology, but also hematology nurse. You need either 2 units prbc's or 8-10 treatments of iron replacement (ferelecit or venofer). You need more than iron pills to boost you. That makes you feel horrible and phenergan has the tardive dyskinesia affects your feeling...i hope they will switch you to zofran. Its better anyways.

Just needed to write...

Lizzie

Posted 1/5/2010 2:06 PM (GMT 0)
Lizzie,

You are soooo knowledgeable... oncology AND hematology nurse! There's something that does not compute here. Do your doctors (who have been shunning your symptoms and dancing all around your serious issues) know that you are a nurse? If not, maybe you could just slide it into the conversation, you might get taken more seriously. Glad you have your hubby to comfort you at these times; trust me it's worse having nobody as I experienced.

I'm glad the MOM worked but my guess is that your blood sugar and electrolytes plummet after you have a move (especially if it is a big one) and you've had no real food to speak of. You do have to keep stool moving, but that's my guess as to what is happening with these panic attacks following a move. I gotta eat more today I woke up weak and shaky this a.m. I have some nutritional issue that nobody seems to get, but for now I will just step up my intake. Have been to hematologist and endocrinologist, no real answers. I do get the weak shaky attacks even being able to eat.

I just had a question for you that I woke up thinking about. You said that you had not seen any of your defecograms or even your defecogram reports. Get them all from the hospital records office.

Post me or email me what it said on the defecogram you presumably had done prior to your ileostomy take-down, the one where they told you "Anismus undetected." I just need to know what that report stated. (I think I'm putting some ideas together for you and just need to know what that report said.) Also was the report written by a resident or a radiology doctor? If a resident-teacher radiology team then the resident name would have an (R) beside the name and the teacher would have a (T). Both should have electronically co-signed.

Thanks, Rosemary Good luck today.
Posted 1/6/2010 12:02 AM (GMT 0)
Jenise

I have had three surgeries in total of which the last one was the total coletcomy with creation of an ileostomy.
I have lost much weight due to not being able to eat because of the pain and nausea. I was accused of ahving anorexia nervosa.
After my second srugery my surgeons who had diagnosed me with colonic inertia for the first time (I had to go two horrible years without knowing why I suffer and I was accused of having an eating disroder) did not belive me any more since I was not better at all.

I had to go to Italy to a Eurpean expert. He diagnosed me with chronic intestinal pseudoobstrcution (paralysis/severe dysmotility of the entire digestive tract. The disease affects my stomach where ist causes marked gastroparesis, my small bowel and my bladder (I have had a premanent catheter through the abdominal wall for 1,5 years) beside my colon.
the dysmotility with CIP is so severe that you experience repeating (sub)occlusions and/or your bowel is in a permanent sub-occlusion like state without evidence of a mechanical cause. So you have pseudoobstrcutions caused by the severely impaired motility.

That is why I have some deeper knowledge about motility issues: If I hadn't done research in the internet and hadn't contacted this expert I would have been in a psych ward.

Lizzie,

one thing that contradicts against the condition I have (CHRONIC inetstinal pseudoobstrcution). You probably would loose more weight with it since you would have bacterial overgrowth in your small bowel due to the overall impaired motility which causes malabsorbtion.
That is why I think you may have some kind of LOCALIZED and possibly by right treatment REVERSIBLE pseudoobstrcution in the upper small bowel like with SMA syndrome in addition to your paralzed rectum.
Furthermore with chronic intestinal pseudoobstrcution and without a colon you would probably have secretory diarrhoea. Since the motility is severely impaired false bacteria can grow (bacterial overgrowth) and pardoxically causes diarrhoea, NOT constipation.
Posted 1/6/2010 12:18 AM (GMT 0)
Peltz,

GOOD FOR YOU contacting that Italy expert. Your case is so complex, for sure they would have sent you to the psych ward here in the U.S.

One hospital sent me and all I had was severe adhesions. But still, it was something identifiable on a CT entercolysis test.

Do you know where they do these types of work-ups in the U.S. in case Lizzie needs that SMA syndrome work-up? I'm not sure Lahey does that but she could ask.

You've done a great job educating yourself, your docs, and us. This must be sooooo hard for you. All my prayers. Rosemary
Posted 1/6/2010 3:04 AM (GMT 0)
Hi everyone,

Lizzie, how are you doing today?  Are you feeling any better?

I've had a bad couple of days.  Even taking miralax twice a day, I still have so much trouble going.  The stool is in my rectum, if I use an enema some comes out and I feel instant relief, but it only lasts until about an hour after eating something else.  It's driving me crazy.  The mornings aren't bad because between miralax and my trust Coolata from Dunkin Donuts, I get fairly cleaned out, but as soon as I eat lunch, I'm getting that rectal pressure again.  I tried drinking miralax in the middle of the day, but then I have to run to the bathroom about 10 times within a couple of hours and I just can't do that at work.  I have no idea what I should be doing; things that give most people diarrhea just make me feel bloated and stop me up more. 

I'm 10 months out of surgery and I really thought things would be better by now.  At least once a day I feel like I should just give up and ask my dr. for an ileostomy....then I think I should probably go to CC in Florida and be reassessed....but that seems overwhelming at this point because it feels like I'm starting over.  What I don't understand is how after surgery the poop just poured out for a couple months; I couldn't get to the bathroom soon enough sometimes.  Now with the miralax, I feel like food is moving through me, and when it comes out, it's liquidy like it was after surgery, but it seems to stop at the rectum.  Why?  Or rather, why didn't it stop before if I have pelvic floor issues?  Where were my issues then and why the heck did they come back??

Lizzie,

I can't even imagine how you must be feeling after all you've been through.  I know you're so strong, and I've always felt like I was a pretty strong person, but if I'm feeling this way, my heart truly goes out to you after all you've been through.  I even feel guilty complaining, but I don't talk about this with friends and family much.  My husband knows how I struggle, but I think most people assume I'm doing great. 

Sorry to be a downer....it's just been a bad day.  On a happier note, I saw the movie "It's Complicated" over the weekend and it's just adorable..so cute.  Definitely good for some laughs!

Hugs,

Janie

Posted 1/6/2010 4:39 AM (GMT 0)
Hello dear friends...

I am having by far one of the worst days I have ever had since all of this started happening. I do not know if its from working or what is going on, but today I have had SO much pain and cramping (I do not usually get cramping) and I have barely had anything to eat at all after puking 4 times yesterday. I worked 10 hrs and then had counseling appt tonight. I stopped at my parents on the way and took some MOM and pain meds since I was so distended and on the way to appy which is only 10 min away I thought I was going to pass out driving again and had horrible panic and heart was racing over 150 beats per min. I though it may stop it was going so fast. My counselor called me in and he knew something was wrong. After catching him up he said he is "appalled at the care I am receiving" and fels someone and not me should be standing up for me, but knows I may or am the one that has to demand something and now. He said I do not look well at all....and he is very concerned as he thinks I need something done yesterday and not in weeks or months. I am home now and have been for a few hours and I cannot get my body to cooperate...I feel so weak, weaker than I have ever felt in 2 yrs and dizzy and chest pain, belly pain, and cramping in belly and toes. I am so scared right now, but feels its worthless to go to ER. I have two appts tomorrow.....my annual and the gastrograffin enema. I talked to CC today and they will have my results friday of the small bowel motility test (I had to call and remind them). Also, I hope to hear from FL by Monday and have the results of the gastrograffin by Friday as well. I really truly have never felt this bad and I do not know where to go from here.....I am going to have to demand help.

Peltz- Thanks for all your info....I do not think I have nearly as serious of a disease as what you have going on, but I do agree something is being missed. I feel so bad for all you have been through, but happy that you are getting stringer and living with the ileo and catheter. I feel for you....you are so strong. I wish I had the care that you have had...you had to search it out, but at least you found it. I have been to five doctors and no one will give me any answers.

Janie- Oh honey....never feel like you should not say anything...you are going through just as much as me my dear friend. I am so sorry you have had such a rough couple days. I was hoping the Miralax would continue to work for you. I hope this is just a bad few days, but if you continue to have issues you do need to seek more opinions. I have the same questions you have...I want to know why my rectum paralyzed again? why did it go away temporarily? I feel for you....I hope you come here and tell us everything, especially when you having these types of days. I feel like all I do is complain and people on here must be getting tired of it, but you all are honestly all I have to keep me sane. I will pray that you can get some relief. Enemas do nothing for me...I wish you could get away with an afternoon dose of miralax. Its probably what you need, but then again...why the need for more??? whats going on in that body of yours??? I wish I had the answers for you...please update when you get a chance tomorrow and let me know how you are. Love you so much.

Everyone else...how are you????? miss you all. Going to miss Rosemary while she is gone :( but wish I was in her suitcase!!!

Lizzie

Posted 1/6/2010 1:10 PM (GMT 0)
LIzzie, I was thinking the same thing.. sneaking into Rosemary's suitcase!! Sorry you have had such an awful day. I PRAY that the gastrograffin enema or the small bowel study reveals something so that they have some way of helping you. You just may need to be demanding.. so that they clearly understand that you can't go on living this way!! Where are you located - Florida?

Peltz, you poor thing!! Thank you for sharing your story. My goodness, no wonder why you have so much information too - you've been through so much!! I just don't get where some doctor's want to think our issues are in our heads! That just blows my mind.. Are you still seeking care or are you now at the point where this is where you will be?

Janie ((HUGS)) I hate to hear that you are struggling!! The more I read, the more I know that pelvic floor disorders ( rectoceles, rectal prolapses, pelvic floor decent) all also play a major role in our BM's - either not getting them out OR loosing them when not trying! After surgery - did you have to strain any in order to have a BM? I just wonder how much the rectocele is causing this.. it is all so very complex, and doctors aren't always able to fix us entirely. Because I have colon left,, I think the MiraLax takes much longer to work then it does for you. After having the rectal pressure in the hospital from the impacted stool - I sooooo sympathize with the feeling. It was AWFUL! I have had mild forms of this pressure prior to surgery - and I think it was due to my rectal descent and rectocele. I only feel an occasional slight pressure - once in a while now - when the rectum is full ( and I don't realize it).

Jen, it's good to hear from you! Hope you are doing better each day, what an ordeal you've been through!

My issues seem like nothing, and I'm thankful for that! I'm 4 weeks post op today.. and not constipated! Actually, yesterday, I don't know what was going on, but I had diarrhea all afternoon till 11:00 PM. I must have went 30 + times!! I didn't eat anything different and I didn't have any stomach cramps to say it was a virus, but my stomach was sooo noisy and I just had to keep running and running to the loo!

Hope everyone here has a great day.
Posted 1/6/2010 3:01 PM (GMT 0)
oops.. guess I know what may have caused my diarrhea... after talking to my mom,and telling her what I ate - I think I ate more fiber than I should/and was eating. I guess I was thinking it would bulk things up, but instead - it increased transit time and sped thing up. I might try reducing the afternoon dose of MiraLax and add the fiber (it was a Weight Watcher meal) to see what happens.
Posted 1/6/2010 4:13 PM (GMT 0)
My doctor told me that even if biofeedback helped, it does not cure anismus. I was under the impression that he believed I would end up with an ostomy eventually, even if the biofeedback helped. He said if biofeedback helped, then it would last longer than botox, but that the anismus would always be a problem for me. And he also suspects it could be nerve damage and there is no cure for nerve damage. He was admanant that if I didn't see good results from biofeedback after 5 sessions, that it would NEVER work???

Janie, I think you must have anismus too. Or maybe rectal inertia? Or are they the same thing? I can't even get the poop to the rectum without lots and lots of rectal stimulation, so I don't have the rectal pressure, but I imagine it must feel just awful. OUCH Maybe you need a defecogram so the doctor can see what is going on? Have you attempted to manually remove the stool that is caught in your rectum? Have you tried suppsoitories to see if this will help to stimulate the rectum?

Lizzie, I hate anxiety attacks. I also have the issue when I have an anxiety attack that I can't swallow, but I also have the fear that I may puke...and I am a puke phobic! I wonder why your heart races? Have you been to a heart doctor so you can wear a heart monitor for a week so they can see what is going on? Have you tried to take miralax instead of milk of magnesia? because I don't think MOM is safe to take everyday like miralax is???? MOM rreally makes me very ill when I take it and I wonder if this could be part of your problem?

Jenise, maybe you can reduce the miralax now? If you do that reduce it by half a dose at a time so you can be sure not to get constipated.
Posted 1/6/2010 4:14 PM (GMT 0)
Way to go Jenise, 30+ trips you're doing good, now you just need to fine tune it down.

Janie, On review of my case, I KNOW I didn't get appropriate assessment, but hearing some of all your stories, I don't think many of you did either. Anismus coming and going at will, my FOOT! Something was not diagnosed pre-operatively for many of you that should have been. I am totally convinced most docs (even those well-intentioned) do not totally have a handle on the complexity of the pooping mechanism.

Even I whose ileostomy so far is working (Pray to God for me it keeps working especially with my trip), I now fill very fast and have very early satiety. I have told my surgeon about this at Lahey and he just said appetite comes and goes. he sort of missed that this is on-going. He just said as long as you're not reobstructing everything is fine. From a surgeon's view point he is correct. If I ever did reobstruct I know he and his colleagues would do everything in their power to help me.

However, when I return from my trip, I plan to ask my GI doc to order a gastric emptying study. To my knowledge they have one at Beth Israel Hospital in Boston. You just eat the radioactive egg and they take pics of your guts non-invasively. My gastric emptying study at Mayo (after the 2006 gut injury and prior to 2007 "fix" at Lahey) showed that I had very rapid gastric emptying. BUT now I am having signs of it actually being very slow.

I just wonder if one has normal gastric emptying in their natural state and all these surgeries can interrupt the nerve transmissions to our gut and wreck havoc. So even with being OK from adhesions (wrap wood), I am dealing with this. I can't even drink a lot at once and need to walk after every single tiny meal. THis is not typical of all ileostomates, so even something is going on with me.

LIZZIE, I think you found someone who can advocate for you. Sounds like you will have answers shortly from your tests and CC Florida. Your counselor said someone should be advocating for you and he said that he did not think you were getting the care you needed and deserved. Could he make a call on your behalf or write a note? Ask him, it may be worth a shot.

It's good I got you the Lahey info if CC falls through. Do keep in mind that all this is soooo complex I don't think anywhere has a total handle. But if you end up with Lahey, they will take you seriously. You will be able to ask your questions re: physical obstructions vs pseudo obstructions. Present your test results and ask for their ideas on what more testing you need and based on that what can be done. They are rational and factual to deal with and they do no pass "judgement" on you. So, like anywhere, they may not know everything, but they will recognize that you are in serious trouble and will not just leave you to die. They are refreshing as they do not shun those they don't understand. When I asked my surgeon about the early satiety, he told me what he knew from a surgeons point of view. I then realized in the spring that it should be a GI doc I should be asking about my early satiety, but my surgeon did not put me down for asking. So their attitude is good and they are good to deal with. Best of Luck honey. I gotta go walk off my "big" breakfast of rice crispies, OJ, and coffee. I should not have to walk miles to walk off this tiny meal.. So I too am worried. But S. America here I come. Wish we all felt top notch and I could take us all :-)

Rosemary
Posted 1/6/2010 4:53 PM (GMT 0)
Lizzie, have you sent your testing results to Cleveland Clinic and Dr. Wexner in Florida yet, or are you waiting to hear from the BCIR staff in Florida?  I am so frustrated for you.  I am feeling the same way taking all of these tests.  Do you really want BCIR surgery, even if you are given the chance.  It scares me that you can become obstructed so easily after that surgery.  It seems like if you had an ileostomy again, where the stoma was done correctly, you would not be having all of the problems that you're going thru.  You could go to the bathroom with your ileostomy, you were just unaccepting of having it and the leaking due to the badly constructed stoma.  Maybe, you should just ask for another ileostomy and be thankful that you can be given another chance and be able to have bowel movements, again.

butterfly

Posted 1/6/2010 5:24 PM (GMT 0)
LIZZIE,

I just found this amazing article. I cannot paste links as I don't know how. BUT go to this URL: www.ccjm.org/content/71/9/693.full.pdf

It is an article called "A 48-year-old woman with nausea, vomiting, early satiety, and weight loss." IT IS WRITTEN BY MOHAMMED A QADEER, MD AND CAROL A. BURKE, MD FROM THE CLEVELAND CLINIC FOUNDATION. It copies for free off the net. Bring a copy with you this week. THEY KNOW MORE THAN THEY ARE LEADING YOU TO BELIEVE!

ALSO, go to the URL: www.aippg.net/forum/viewtopic.php?t=164217. It is an article called "55-year-old woman with early satiety nausea and vomiting." It tells of tests to have and speaks of SMA that Peltz tells us of. COpy and bring with you to Cleveland. If you go armed with info, they cannot say "It's all in your mind" if they have not tested you for all this!

Be professional as you are, but think of your doc as an equal, one who just got his degree in something different than you did. We on here all possess the capacity to have gone to medical school, we just did not for our own reasons. Docs are just people who got their degree in something different than we did. They are NOT GODS. Be professional but convey by how you act and the impression you give that you are dealing with facts, and questions relative to your condition. This will show you have no time for someone's god complex. If someone surfs off into "all in your mind," You could say, "so getting back to my question about dx of SMA or possible Mesenteric Ischemia..." This will short circuit the "all in the mind" accusation.. OR IT SHOULD!!!!!!!! Rosemary
Posted 1/6/2010 5:39 PM (GMT 0)
LIZZIE,

My brain is clicking away about your case.

To your appt. bring your medical calendar.

Didn't you say once that this vomiting issue actually began PRIOR to your ileostomy take-down surgery? And has since gotten worse?

The SMA and mesenteric ischemia articles I mentioned above can give the symptoms you experience (Could also be my early satiety issue too but not to the degree you experience.) We have both been through so much I wonder if these 2 things can be caused by disrupted blood flow and from multiple surgeries.

Anyway, be sure and tell the doc this Wed. You may have a combination of issues going on. If you have the underlying SMA or mesenteric ischemia that needs to be addressed and remediated at the same time fecal diversion is or maybe before hand.

My advice too, seeing as your issues may be a combo and severely complex, I would stay well away from any internal pouch and just go with a well-made ileostomy stoma. Remember seeing is believing! Can you imagine all the "all in your mind" comments you or anyone with an internal, non-visible pouch would get if they had an issue with that? WHEW!

If you end up at Lahey, they may not have the facility to test for SMA or mesenteric ischemia, but they would listen then refer you to where this could be diagnosed. The whole listening barrier issue would not exist there and you would at least be heard. SOrry to bombard you with so much but you have to be armed with as much info as possible for this week. This week is crucial for you. Rosemary
Posted 1/6/2010 6:02 PM (GMT 0)
Hi all I have been very weak all day. I mean my body feels like jello, and I can't do anything. I also have rapid breathing and abdominal pain. I am worried because I know I am hydrated and I am eating so what's up. I know when I was discharged New Years Eve they said my hemoglobin was real low but said it was from an iron defenciency. I just haven't felt like this since I left the hospital from my second surgery. I am a little worried something else might be going on. I'm not about to call the docs again because I think they will think I am some head case because I have so many issues.

If things do not get better I am wondering if I should just go to the er and at least have my blood levels checked. Anybody got any thoughts?

Jen
Posted 1/6/2010 6:18 PM (GMT 0)
ER... check blood levels. Appropriate request. Rosemary

P.S. seems like we're all falling apart. we gotta get better! good luck
Posted 1/6/2010 7:03 PM (GMT 0)

Rosemary said...
Be professional as you are, but think of your doc as an equal, one who just got his degree in something different than you did. We on here all possess the capacity to have gone to medical school, we just did not for our own reasons. Docs are just people who got their degree in something different than we did. They are NOT GODS. Be professional but convey by how you act and the impression you give that you are dealing with facts, and questions relative to your condition. This will show you have no time for someone's god complex. If someone surfs off into "all in your mind," You could say, "so getting back to my question about dx of SMA or possible Mesenteric Ischemia..." This will short circuit the "all in the mind" accusation.. OR IT SHOULD!!!!!!!! Rosemary

Excellent advise. I think too often people think of doctors as gods.. and they are not.. they just were book smart and went to school and got a degree. My hubby and I own a business, and I kid you not.. the customers we get with some of the least common sense are #1 lawyers.. and often doctors. I kid you not.. it amazes me.

Jen, go to the ER. Don't take any chances at this point.. you have had a lot of issues and complications following TWO (2) back to back, major surgeries. You didn't have a choice of course, but if you recall, they would not even schedule me for my sub-total until a full 6 months after my previous surgery - too much on the body.
Posted 1/6/2010 7:24 PM (GMT 0)
Lizzie,

just curious: what is the difference between pain and cramping fpr you? the kind of pain can give an hint for the condition you may have.
Posted 1/6/2010 7:26 PM (GMT 0)
Rosemary,

early satiety alone would rather indicate a mild case of gastroparesis. A severe case of gastroparesis is also possible for Lizzie. But I think the time Lizzie vomits after meals and the projectile vomiting indiactes a very proximal obstruction.
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