TOTAL COLECTOMY PART 30

Krisen,

I'm FLATTERED that you posted before I left for vacation! I think I can help you. I realize all you've gone through to get to the point of hopefully getting some relief. However, you have NOT had all the testing you need and you have cued in on this in the nick of time. Good for you!

Here is information from the article Physiological Testing of the Colon, Rectum, and Anus by Bruce Orkin, M.D. Director, Division of Colon and Rectal Surgery George Washington University in Washington, DC. I would advise going to him; he really knows his stuff.

Structural Tests: Scope tests (you said yours indicated fixed and tightened loops of colon....you may only need adhesions removed to free up your lower colon loops; if most of your markers are in your lower left colon with only a FEW scattered through your whole colon, you likely don't need your whole colon removed! Auuugh!) If you've had a prior hyst, the adhesions that are immobilizing your lower colon are likely from that. The "W" shape of your lower colon COULD indicate redundancy of that part OR just a "W" shape due to adhesions on your colon pulling it into the shape of a "W." Removal of adhesions with application of Seprafilm adhesion barrier can work wonders. The Seprafilm lessens the density and number of new adhesions that form.

A gastrograffin enema xray (which has the side effect of diarrhea after ward which is good as opposed to barium which can concrete in you) would show if there was really redundancy. According to one of my radiology case reviewers this is the more accurate way to tell if there is redundancy.

I'm not surprised that Mayo said wait until you obstruct! After I was severely damaged from the unneeded 2006 surgery and was literally dying of starvation due to not being able to eat due to the resultant small bowel adhesion obstructions and unable to defecate due to large bowel scarring, Mayo told me just keep using your PEG nutrition tube (WHICH I DID NOT HAVE! AUUUUGH!) Anyway, though they seem clueless as to what to DO with their test results, their actual testing facitilities are STATE OF THE ART! Their testing technicians are extremely good. You should have the scintigraphic transit test done there. This can actually pinpoint which part of your colon has normal transit and which part does not. Remember, if there is a delay in on part of your colon, it does not mean that your that colon part isn't working, it just means there is a delay. The test is easy. They serve you a rather tasty egg and toast breakfast consisting of egg laced with some sort of radioactive substance. You cannot taste it. It tastes like any regular egg. Then you just lie under this geiger counter machine every few hours and then go in the next day or two. They give you a schedule. It's important to test the function of different segments of your colon. Like Jenise's experience, parts of your colon could be working just fine; having the whole thing out without need would be devastating to your whole system. I'll explain why later.

Back to Dr. Orkin's article...

Physiological tests are next:

Anorectal Manometry, Balloon Capacity and Compliance, Balloon evacuation all tell how well your rectum, anal sphincter, and pelvic floor function.

Neurological tests: Pudental nerve terminal motor latency, Surface EMG (stay away from the needle kind) this can be done with surface electrodes and I think a sponge electrode just put a bit into the anal canal, these test the nerves in the pelvis which is important if you've had a hysterectomy. WHat we are not told when we have a hyst is that nerves and blood supply that help the colon, pelvis, and rectum function are actually severed during a hyst and that is why after a hyst some of us have bowel issues. (IF they told us that we would likely not have a hyst and no money for the hyst surgeons. I sure would not have had my hyst had I been given this info!)

Defecogram: Have one of these done. This can tell you if you have a sigmoidocele (redundant sigmoid) Or Like I really had ( only an enterocele...just a loop of small intestine descending into the Pouch of Douglas ....space between rectum and vagina that sometimes weakens and opens because we;ve had a hyst. Usually those who have had a hyst only have this loop of small intestine descending at the end of the defecogram after we have pooped out the rectal contrast. It usually does not hinder rectal emptying. ) I WAS MISDIAGNOSED and told my sigmoid colon blocked off the top of my rectum. The surgeon who removed my sigmoid saw in surgery that this was not the case and removed my sigmoid anyway. Then according to my reviewers, he did it wrong, and did not follow up to complications, hence my suit. But prior to my surgery two radiologists at a top hospital, 2 GYN surgeons, and 3 colorectal surgeons had told me my sigmoid blocked my rectum, meaning it was my sigmoid colon that slipped between my rectum and vagina into the Douglas Pouch, so that is what I was going by as anyone would. Only after did I think to have the defecogram on a DVD reveiwed by pelvic radiologists across the US and in Europe. SO even after you get your defecogram; get it on Xray or DVD and send it around. The defecogram can also tell if you have nonrelaxation of the puborectalis muscle. If so, then your rectum will not be able to straighten for defecation; instead it stays angled for continence at all times.

Anorectal unltrasound is in the article too but I think It's more for detecting anal sphincter injuries.

To get a copy of the article go to www.iffgd.org or www.aboutibs.org. Or call 1-888-964-2001.

As you know I have an ileostomy but still own my colon, though due to scarring it cannot be used. However, without the use of at least some part of the colon, you run the risk of dehydration, if you ever get vomitting and diarrhea from the stomach flu you need an IV, and you lose electrolytes that are important for your muscles and heart. It is the colon that reabsorbs water and electrolytes back into the body. The end of the small intestine does this to a degree but not nearly as much as the colon. I wake up dehydrated and it takes me hours to start peeing. Once I do then I feel better. Also if you have no use of any part of your colon, you have a 20% greater chance of getting kidney stones than someone with an intact colon. The colon is a very important organ for these reasons. I also understand Vit. K is absorbed in the colon. The body does adapt and the end of the small intestine does do its best to make up for the lack of use of colon, but systemically you don't feel the same. Jen on our board has been in and out of the hospital multiple times for dehydration. As you know Lizzie is in lots of trouble. So far I'm doing OK but have to drink 3 quarts of water per day.

WIth removal of the colon or any colon surgery there is a chance of adhesions forming on the small bowel and giving small bowel obstructions. This does not happen to all. In fact, I had the worst experience with adhesions, but my 2006 surgeons also "fixed" other internal prolapses that I did not have (likely for money and based on their agenda listed in past suits.) adding to the adhesion risk so my case was way different. But the risk is there.

So Kristen, I realize I have given you a TON of info. I also realize you have worked long and hard to get to the point where surgery has been proposed with the likely honest intent of your surgeon to provide you with relief. MOST surgeons are honest and honestly try with the knowledge they have. Keep in mind not one doc knows everything. My original surgery in 2006 was not the norm; I found out later those 2 surgeons had multiple suits that I was not told of prior to surgery though I inquired with our state med board. Why they are still in practice defies me. BUT keep in mind they are not the norm and don't let my experience scare you. You now need to decide what to do....I would wait and get more testing if I were you. But this is your choice. I hope I helped and didn't overwhelm you. But as I'm going away, your surgery is so close in time, I felt time is of the essence.

Even with all this info and after you've read it and discussed more with others on this board and maybe contacted your docs about the other tests, then just go with your gut feel. No pun intended. There is a thing called "analysis paralysis." It happens when there is so much to learn about a situation and you are unable to tell who is right, what you really have and so on. I got into that. It's hard not to.

My best to you and your decision making. Sincerely, Rosemary

Hi Butterfly,
I just found that Web site last night. In Mass we do not have that luxury of seeing doc's law suits on line.. BUT further down in that article I saw that it was mentioned that local court houses are the place to go to see all law suits filed. I wondered if I missed this info in 2006. How long has this web site about Florida been in existence do you know?

Not that it matters now, but I just wondered how I missed all this in 2006. Thanks, Rosemary

Hi Jenise,

Sounds like a scar tissue pop to me (which could be a good thing) unless it is connected to something! Keep calling, I think your mom is right seeing as you are still having some sort of weird feeling.. That is odd you are getting nobody not even an answering machine. Good luck.

Interesting about the Florida Web site. The ratemds, vitals.com and so on are really better as real people post their experiences. I think those are fairly new though. I did check a few in 2006 that existed like health grades which just says all the docs are peachy keen. Just for curiosity I will ask the moderator on ratemd's when he established his site.

VERY interesting about how differently your defecograms were done and the results that varied so much. Hope Kristen logs back in and reads that too. Really matters where you go with what tests you get. Good luck with the popping sensation. Rosemary

Hi Tracy,

I'm actually tearing my hair out with last minute things to get to my atty for tribunal on Friday, the day after I leave. I know he has it all together, but there are just a few more things that are relevant. I GOTTA make myself get out and walk to the UPS store to send the materials. I learned from actually ordering a CT scan radiology text book that I had a leak at my anastomosis (that turns out I didn't need anyway), the leak apparently healed itself, and that lead to stricture formation. no wonder my surgeon went balistic when I questioned him about the CT scan that showed air bubbles outside the anastomosis. I could have died. THe more I learn about all I went through actually the worse I am, But I was determined to get the truth so hopefully I can put all this to rest someday. After I go to the UPS store, I gotta come home and finish packing. We have more snow. I really need this vacation as I'm SOOOO into self blame for my original 2006 surgery. BUT all 3 of my consults gave me the wrong info. I should have learned how to read defecograms prior to having the unneeded sigmoid resection, but no patient does this. Believe it or not I can now distinguish a sigmoid colon from a loop of small intestine. That is SICK. I should not know how to do this. Oh, well, one, two, three, go.....I gotta get moving. Hope I didn't bowl Kristen over with TMI Too Much Information....her surgery is only 5 days away, I wonder if she will cancel, Oh, Lord! Well, I hope I helped. RJ

Rosemary, we were posting the same time. PLEASE don't blame yourself!! (HUGS) All this is NOT your fault!! I know it is eating at you, and to tell you the truth - I often blame myself for my condition. Even now and than it pops up.. I should have had baby #3 via C-sections, like my first 2, but I PUSHED having a VBAC, and then I blame the doctor for letting me... You made the best decisions you could have - you didn't have a doctors degree, and you took the advise of professionals.. there was no way that a normal person would think about looking up lawsuits. That's the shame of it.. we trust our doctors. You were just dealt a bad hand, no fault of your own. Try and enjoy the wonderfl cruise you have coming!! We're gonna miss you!

Kristen, hope you come back and post. I know you must be scared and confused somewhat - that is why you posted. Let us know how we can help!

Gee, Lizzie Ya think they need to admit you! I cant freckin stand doctors! I wish they would just do it already and get you figured out. You would think that the fact that you have to the er so many times they would get a clue and keep you. Geez a freckin Pete!!

Kristen, welcome to our crazy world. Here you can talk about anything you want. Its great and we are full of information. And poo, of course!! I had a tc six months ago. I am definetly doing 100 percent better than I was. You just have a whole different set of issues after this surgery.

I am going on about three hours of sleep. I dont know what my problem is but I cant sleep. I even take all my meds and still nothing! I am at my wits end. I am going to go commit myself to the mental hospital here pretty soon! Anyone else want to come? We can share a room!

God Bless us ALL!!!!!

Thanks for the support re: my self blame. I gotta just get over it. Tribunal is this Fri and by then I'll be AWAY! Yeah!

Glad they at least did the xray Lizzie. Bug them for another CT scan after that gastrgraffin enema. Mon. I will talk to my Lahey contact and ask about record review for you if you get nowhere by Wed night at CC. You wouldn't be committing to anything at Lahey, they would just be looking at a set of records. Hope you have several sets with you. Hard to round all this stuff up what with feeling so awful, I know. I was asking everywhere if I could just be admitted until I was figured out after all my damages before they were fixed the best that could be done and the responses I always got was "we don't do that." I agree Marisa, with what you said! Jeez!

Tracy, your daughter with the inertia could do well by getting transit test and if her pelvis is fine she may do great with ileorectal anastomosis. God bless her and you and your other daughter. You got your hands full.

Jenise, glad you called your hospital. Your docs seem very with it. Busted scar tissue is likely a good thing then. Glad you called. (I see what you mean about the VBAC decision; not being docs there really is no way any of us can really predict and make decisions other than with the input we are given by the docs.)

poor Kristen, I hope she checks back in. Hope I didn't give her too much info TMI but going away and all, she could just ask her prospective surgeon if any of the other tests are appropriate to her condition. Just hate to see someone under tested. But just cause I was doesn't mean everyone is.

Rosemary

Oh No! My post just completely disappeared and I will have to start all over :(

Lizzie,

if you have a very upper obstrcution (in your proximal small bowel) then it won't necessarily show up on plain films. If you have an obstrcution in the duodenum (part of small bowel where the stomach empties into) this would support my theory of SMA ayndrome.

Hey guys...

I am so behind on what is going on with everybody and a bit confused :( I am trying to put it all together.

Rosemary- Never blame yourself sweetie, that saddens me so much. You are one of the bravest, most wonderful people I have ever met. You are going to win against these doctors and they will get what they deserve and for WHAT THEY DID to you!!! Thanks again for all your continued help and support. I feel no pressure about you and Lahey, I actually teared reading it and it means a lot to me. I really ust feel like no one will help me and the fact that you are trying and you do not even know me except frm this site means the world to me. Depending on the cost I would love to send my info there...I just with all my medical bills do not have a lot of extra money, but I could always ask my parents for help. I have great insurance, but with the possibility of losing my job my husband and I would have a very hard time paying our bills on one income. I will be calling CC and FL on monday to see what is going on with them and hopefully since my test on Wednesday is in the am I hope they can give me results that day.

Tracy- I do not think all of that oozing and especially with the colors is good at all and I think she needs to be assessed especially since on abx. She may need a stronger one. MRSA is so much more dangerous than people know and even though she does not have a fever right now it can spread to the bloodstream quick and thats when, as you know with your son, things can get bad quick. Thinking of you always sweetie...and I pray that you get some answers. When do you start your biofeedback?

Marisa- Geez is right....my mom was crying to the nurse and doctor and still they just tell me I am a chronic patient with chronic problems and all they can do is treat my symptoms. Its so stressful and hurtful and I know if I was my nurse I could not see letting someone go with an abdomen that appears as mine. I tried some soup today and I threw up and I am still having horrible pain. I had to take 1/2 bottle of MOM today just to get some liquid out and now I am noticing I have to strain so hard even with liquid. Thanks for your support honey, I love all of you so much and pray for you always.

Kristen- Welcome! This is a great support site for you and we are always here for you good and bad and between all of us I am sure one of us has had it, experienced it, or has the answers for you. Please do not get scared looking at my posts and my complications and continued complications. I am not the norm and many do well. You have been through so much already and I hope this is the answer for you. Praying for you!

Sarah- I know everytime they do an xray nothing is going to show...what bothers me is he never shows me. I have sene the same doctor and its like he thinks I am crazy. My surgeon told me I had to go to this ER no matter what in case of being admitted, but I have never seen a different doctor in the last 2 months and he also was the same doctor that discharged me from the ER and the next day I was admitted from my surgeons office with severe dehydration, BP dropping so  low, and pain and vomiting. I just wish someone would take the time to just admit me and run a battery of test and find out what is going on before something bad happens to me. Thankfully I am sustaining...I do not know how. I have been taking potassium everyday and I am sure this is helping. My albumin is still ok, so nutritionally I guess I am still ok. I weighed 101.2 today after 2 L of fluid and in the evening so I am guessing I probably have dropped below 100 now. I am super puffy in the face from all the fluid and I have only peed twice all day despite the fluid. Thinking of you always,

Anyways....this is so long, but I tried to catch up on everyone. My hubby is with the boys tonight having beers and watching football and I feel good he is doing this and I am not ruining his night. I have had a slushy and a few candies since puking lunch, but otherwise not eaten today anything but MOM !! I will get through this and just have to make it a little longer an hope to get some answers this week. I only talk to you girls about this...not even my friends. No one understand and I just do not have the time to listen to them tell me I am being negative. Thanks for all your love and unconditional support. Thanks for trying to save me....LOVE YOU ALL.

Lizzie

Kristen-I wanted to welcome you and say to try not to worry.  I know that's a silly thing to say to you at this point but you have probably been reading most of the most recent posts on here and many of them have had complications.  Well, I normally post on here all the time but my teaching job has me extremely busy this year so I'm unable to post.  I do want you to know that I am one of the SUCCESS cases!!!!!:):):)  I had a sub-total in July of '08 and have about 2 inches of my colon left.  I had an open surgery due to many previous abdominal surgeries but was only in the hospital for 5 days.  I did have 20+ bms to start out with but never had any accidents and was down to 8-10 a day by 6 weeks when I returned to work full-time.  Was I ready to go back to work? Probably not, but I had to and I survived; I just came home and rested.  This IS a major surgery and it does take your body a long time to heal but having had many previous abdominal surgeries, it shouldn't be too bad for you; the main thing to do is WALK, WALK, and WALK some more.

There are some things you should do to help with healing and to prevent blockages and hernias 1) stay on the low residue diet even when they say you can eat whatever you want 2) hire someone to clean your house (your husband can't do it as good as you like it ) 3)walk and walk some more 4) rest!!!!!!

I've had many of the same surgeries you've had, including a hysterectomy mine was at 29).  I do suffer from chronic kidney stones and kidney issues but they date back to 1997, though they have been harder to fix since the colectomy.  The colectomy was by far the best thing that ever happened to me health-wise and I truly did not know how unhealthy I was until after I had my surgery; so please don't go into this with fear, there can be so much positive to come from this surgery.

I wish you the very best and will keep you in my prayers.  If you have any questions, please feel free to contact me, I will check back tomorrow then I probably won't be back on much because school starts on Monday.

Love and prayers to everyone,

Judy

Hey Kristen, I had a total colectomy in May 2009. My entire large colon and a small portion of my small colon were removed. The small colon was then connected to my rectum. I had lots of complications, all resolved. I had a 24 day stay and a long recovery. Other than fatigue and butt burn I feel really good. I still have days when I can have up to 12 bms a day. I have only had 2 accidents. I have learned through trial and error the foods that don't agree with me. Fruits, salads, greasy foods, ice cream and nuts. I don't cramp, I'm not in any pain and I don't have any bloating. I have had the most incredible medical care. My surgeon and GI rock. I hug my surgeon everytime I see him and thank him for giving me my life back. He always listened, made me feel like I was the only pt. he had. My husband had his cell phone and was told to call anytime we needed him. I live in Raleigh NC. I guess I am a success story. I don't think anyone goes through this BIG surgery without issues. I have learned to adjust to the changes in my body, some not always plesant. I wish you luck. Connie