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Total colectomy 2011.2

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Posted 2/12/2011 12:27 AM (GMT 0)
Sooo, about how much did all of you guys end up paying for your subtotal colectomies after insurance covered whatever they would??

Also, my surgeon is saying they will leave the last 6-8 inches or so of my large intestine, so basically just the rectum. Is this what I want or is 6-8 inches too much. How much did each of your surgeons leave??
Posted 2/12/2011 12:28 AM (GMT 0)
Oh yeah, looks like I will be getting the surgery :)
Posted 2/12/2011 12:53 AM (GMT 0)
Boat,

That is good news! I think it is correct to retain the rectum for colon removal and small bowel anastomosis to rectum for colonic inertia. I did not have that condition so someone who did have it, I'm sure will be along soon to answer your question.

Congrats!

Rosemary
Posted 2/12/2011 1:29 AM (GMT 0)
Yay Boat!!!!!  So happy for you!  You will be amazed at how well you will feel!  My insurance covered everything 100%.  I have BCBS.  I never paid for one test or any follow-up either.  I always thought I had a couple of inches of my colon left bc that's what my husband had told me following my surgery, that he left about 6-8 in.  I never bothered asking until a few weeks back when I saw him for another issue and asked him exactly how much of my colon was left and he said none, I removed it and attached the rectum to the small intestine. 

 

As I spoke with you before, my surgery has been extremely successful:)  Even though I'm going through some issues now it isn't bc of the surgery, it's bc of medication use for something else which in turn has affected my intestine.  That is one of the things that I personally have to watch out for now is how medications affect my body without the colon, I tend to have a lot of difficulties with meds now. 

 

I wish you a very successful surgery and quick healing!

 

Judy 

Posted 2/12/2011 12:38 PM (GMT 0)
Thanks! I believe the last 6-8 inches of your colon is your rectum, so I guess he did leave the last 6-8. They call the total colectomy a sub-total now I think because the rectum is part of the LI.
Posted 2/12/2011 2:19 PM (GMT 0)

Congratulations Boat!  Have you got a surgery date yet?

My surgeon left 2 inches of colon as well as the rectum.  That's what he calls a sub total.

Because my surgeon was not a preferred provider, I ended up paying him about $900.  Other than that my insurance company (Blue Cross) paid everything 100%.

Val

Posted 2/12/2011 2:35 PM (GMT 0)
So you had around 8-10 inches left then I guess (assuming the rectum is 6-8 inches, then another 2 would be a total of 8-10).

No date yet, we will be setting that up this week, but he said we will be able to get me a spot in about 2-3 weeks.

I am hoping my insurance will cover most of it. I have tricare standard. This surgeon is a non-network provider, which is similar to a non preferred provider I assume. It means I may have to pay slightly more out of pocket.

I also mentioned the fact to him that on the days I had larger bowel movements I would be back and forth between the toilet for about 15 minutes or so, and he said in my case that is expected. In all of my x-rays I am basically packed top to bottom in my colon with stool so it would be virtually impossible to get most of it out, let alone all of it, in one go (that would be guinness records material lol). The fact that each of those 5 or so trips over that short time I produce a good 8 inch minimum long bowel movement (whether rock hard or less formed) is a good sign and further strengthens the idea of what he told me, and that once we get rid of the sluggish colon it should solve most of the problems.

I am also pretty confident he is the right guy for the job. His resume is fairly impressive and he has held a number of pretty sweet titles

http://www.fairfaxcolorectal.com/docs/CV_Othcy.pdf

(hes even a professor of surgery at the med school I will b e attending)

Post Edited (boatnerj) : 2/12/2011 7:38:41 AM (GMT-7)

Posted 2/12/2011 6:07 PM (GMT 0)
shakehead     I had a total colectomy with permanent ileostomy....no colon or rectum left.  My problem was ulcerative proctitis, so really, my rectum was the culprit.  Unfortunately, when they remove the rectum with UC, they have to remove the colon because the ulceration will manifest themselves further into the colon sad .  Bummer, because in the twelve years I suffered with UP, my colon never looked bad.  Every colonoscopy read only minor diverticulosis in the colon, no ulcerations, no polyps, nothin!  However, my rectum was a mess!  (I meant to put that little guy shaking his head behind the last sentence..lol)  Anyway, I have Personal Choice Blue Cross and Blue Shield of Pa and they covered everything!  It's a wonder they still keep me on board beings that I ran the gamut of meds while suffering with UP...6MP, Remicade and then Humira.  Remicade and Humira are like five grand a pop and I only had to pay $5 out of pocket.  Thank God I have that insurance.   Oh, my surgeon left my anus intact.  In his opinion, there are more complications if sewn shut with that particular surgery.  I've had some bleeding and mucus seepage since my surgery but he said, better out than in.
Posted 2/12/2011 6:21 PM (GMT 0)
Wow Boat. He sounds good. You are in good hands and had all the correct work ups. Rosemary
Posted 2/12/2011 10:09 PM (GMT 0)
dont know which one of the colectomy threads is to be continued.
anyway, i just copy my posting.
I got the letter with the report of what I thought was a report of the result of the bladder tissue analysis. Well, guess what, it was the report from the neuro-pathology but it was completely different from anything I could have imagined. I was ready to get a report saying that there were no obvious changes to the enteric nervous system/smooth muscles of the bladder just as the pathologists don’t have the expertise in analyzing tissue for CIP associated alterations. And there is always the option that no obvious changes can be detected despite presence of CIP.

But I could not have been prepared for what actually had happened: NOTHING but one pretended that something WAS DONE. Obviously, the stained tissue samples of my gut which were also sent to them for a comparison with the bladder tissue were just reviewed. There was no staining and thus real examination of the bladder tissue samples. They just took a look at the stained gut tissue samples and dared to make the conclusion that my bladder could not be affected by CIP since they stated changes to the enteric nervous system consistent with hypoganglionosis (that is few and small ganglion (nerve)cells) and confirmed the finding of the German pathologists. What a big surprise! Ok, I can’t help but to be sarcastic for being able to digest this new stuff. But who could have actually been thinking to get a different finding when the same tissue samples with minor quality are just reviewed? That’s just ridiculous.

Anyway, in their inexperienced opinion bladder involvement can’t occur with neuropathies (damage to the nerve cells) but only in myopathies (changes to the smooth muscle cells). But that’s completely false. First of all, bladder involvement does occur in neuropathies as well yet with a lesser incidence than with myopathies. Second, I do seem to have muscle abnormalities as suggested by the analysis of the most experienced pathologist with regard to CIP since he did additional and specialized staining. Third, they took only three!! samples out of over 130 and reviewed them, without considering that some tissue samples were stained by the expert and some by the German pathologists who used different techniques. They even did not notice the differently stained material. Third, tissue quality was minor and limits the expressiveness; that’s why the Italian pathologist was very cautious with his suggestion of possible enteric myopathy. The neuro-pathologists now did notice the minor quality as well but were ready to transfer their suspected diagnosis into a firm diagnoses although they also noticed some changes of the smooth muscle cells even when considering the possible artificial alteration of the gut tissue. And forth, they don’t seem to have anything heard about mixed conditions, and that more and more mixed forms and pathologies in a single subject are recognized. Such a neuro-myopathy would be possible in my ca especially when considering the mixed clinical picture of my condition having both features of myopathy and neuropathy. And fifth who could have actually been thinking to get an experienced analysis by neuro-pathologists who normally examine brain tissue and tumor tissue there? And sixth, most important: since when one can compare the incomparable? That’s exactly what they have done as neither they took a look at the bladder tissue (which was the actual subject!) nor analyzed it (which was the actual task)

I think they were just overwhelmed by this task and just changed the order of task which said: analysis of the bladder tissue

Thus, the outcome of this is even worse than I could have imagined. It clearly argues against the bladder involvement. This is even worse than a clear finding.

My remaining options have decreased even more. I am trying to get into touch with the German colleague of the doc in London. He is a scientist and does analysis of gut tissue from patients with motility disorders. Maybe he can take a look at and examine the bladder tissue samples if they are usable for this purpose at all.

Second, I seriously consider undergoing surgery to obtain full thickness samples of both the bladder and the small bowel.

On a more positive side of note the chief doc of the responsible doctor of the clinic whom the clinician in London recommended through his German colleague wrote back. His responsible doc was just super busy and she will write back within the next days.
Posted 2/12/2011 11:16 PM (GMT 0)
Peltz,

Jeeze! These guys should get together with my 2006 defendant surgeon who removed my sigmoid colon (later found out not needed removal) but did not send that to the lab, instead sent the lab a length of my small intestine that was not put in the operative notes as being removed. These guys could all do nutty things with tissue samples. Jeeze!

Anyway, I don't know what is up with your docs but I think the scientist sounds like the best bet if I were you. Scientists don't seem to have an "agenda" as some (not all) docs seem to at times. Glad you just have yet to hear back from the responsible doc who was just busy. There's always hope. I think my weight gain is affecting my stoma. No more junk food for me.

Good luck with this Peltz. Rosemary
Posted 2/12/2011 11:26 PM (GMT 0)
Hello all my sweet friends. Still hanging in there with pain and nausea. I have drastically changed my diet to see how I respond. I eat cereal for breakfast and lunch and yogurt much of the other time. Like Jen said it feels awful with the gastroparesis. It feels like everything I eat just sits in my stomach. Like a big fat pill is stuck there, like when you get a pill stuck in your throat. I see the doctor on Tues and anxious to see what he says about everything.

Boat, I am excited for you that you will be getting your surgery. I have the rectum and then two more inches of my colon. I was told the more they can take the better chance you have of not having further problems.

It has been so cold up here in Idaho. Below 0 most mornings. I am so ready for spring. I need some sun!!

Hope you all are having a good weekend!
Posted 2/12/2011 11:50 PM (GMT 0)
Rosemary,

these guys call themselves scientists,too! But I would be crazy if I believed that this was actual scientific working!
Posted 2/13/2011 12:41 AM (GMT 0)
Peltz,

Yeah, I know, it's rough.

Marisa, Yeah it's about the same temp here in Mass. I have a 9-foot snow pile in my front yard.

Rosemary
Posted 2/13/2011 2:15 AM (GMT 0)
I guess my attempt to stay on a reduced dosis of antibiotics has failed with this day.
I already struggled yesterday with markedly increased bladder pain but thought that I can't return to the previous dosis as it's way to much and induces even more nerve pain.
But I think it was a mistake not to slightly increase the dosis in the beginning of the acting up infection.
I can't stand the pain today, I am in such amount of pain, and need to increase the dosis now - and probably I will need a higher dosis to reduce the pain than I would have needed yesterday. I am constantly struggling with myself taking antibiotics and knowing that it will be harmful to my body and increase/induces nerve pain. I am so sick of this choice between the devil and the deep blue sea.

Post Edited (pelztier86) : 2/12/2011 7:18:44 PM (GMT-7)

Posted 2/13/2011 6:19 PM (GMT 0)
How frequently do you have a BM with that much colon left evans, and was it a lot at first and slowed down over time?

Also, since I will be getting the laproscopic surgery and had no past surgeries, what can I expect as far as distension and time needed for that to go back to normal?

evans18 said...
Hello all my sweet friends. Still hanging in there with pain and nausea. I have drastically changed my diet to see how I respond. I eat cereal for breakfast and lunch and yogurt much of the other time. Like Jen said it feels awful with the gastroparesis. It feels like everything I eat just sits in my stomach. Like a big fat pill is stuck there, like when you get a pill stuck in your throat. I see the doctor on Tues and anxious to see what he says about everything.

Boat, I am excited for you that you will be getting your surgery. I have the rectum and then two more inches of my colon. I was told the more they can take the better chance you have of not having further problems.

It has been so cold up here in Idaho. Below 0 most mornings. I am so ready for spring. I need some sun!!

Hope you all are having a good weekend!

Post Edited (boatnerj) : 2/13/2011 11:50:31 AM (GMT-7)

Posted 2/13/2011 8:10 PM (GMT 0)
Boat, at first my bms were about 15 to 20 a day. And I was holding at that up until about six months ago and they have dramatically slowed. Now I really strain to have a bm and I usually just take Miralax daily to make it easier. On the miralax I go about 5 times. Without I rarely have one a day. My GI was very shocked to know that I am having troubles. Before surgery I was going once a month. Very, very painful. I would also have to disimpact myself. Because there was no way in hell I was going to go to the ER that way. So, all in all I am happy with my surgery. I just wish it would get even better. I still keep my diet very restricted. No veggies, fruits, rough meats, anything that is harder to digest. Right now just eating special k cereal and sometimes some chicken and turkey. However, I would still recommend this surgery to anyone having chronic constipation. My colon was so scarred from the years of constipation. Many strictures, polyps, and was not even fixed to the abdomen like it should have been. It was pretty much just flopping around in there.

Heading out to the bitter cold!! Talk to ya all later.
Posted 2/15/2011 6:01 PM (GMT 0)
No wonder things have slowed down for you, if thats the way you are eating. You really aren't eating any "real" food (I see a lot of other ladies throughout the colectomy posts describe the same eating habits you do). Special K is garbage (not trying to be rude, but honest). And the lean meats really dont give any nutritional value, only fatty cuts of meat/fish and organ meats have a lot of nutrition. Even if the veggies and frutis give you digestive issues you should still eat them (some foods can give you digestive issues BECAUSE you avoid them and your body stops producing as many enzymes needed for those foods, so you will have to re-incorporate them slowly until your body starts pumping out those enzymes in larger quantities again). You are probably malnourished (not in the sense of calories, but in the sense of micronutrients/vitamins/minerals/etc). THis is the biggest problem with lots of Americans today (being overfed, but still under nourished) and THE main thing we need to fix if we want medical costs to go down, quality of life to go up, ensure our kids grow up healthy, etc.

evans18 said...
Boat, at first my bms were about 15 to 20 a day. And I was holding at that up until about six months ago and they have dramatically slowed. Now I really strain to have a bm and I usually just take Miralax daily to make it easier. On the miralax I go about 5 times. Without I rarely have one a day. My GI was very shocked to know that I am having troubles. Before surgery I was going once a month. Very, very painful. I would also have to disimpact myself. Because there was no way in hell I was going to go to the ER that way. So, all in all I am happy with my surgery. I just wish it would get even better. I still keep my diet very restricted. No veggies, fruits, rough meats, anything that is harder to digest. Right now just eating special k cereal and sometimes some chicken and turkey. However, I would still recommend this surgery to anyone having chronic constipation. My colon was so scarred from the years of constipation. Many strictures, polyps, and was not even fixed to the abdomen like it should have been. It was pretty much just flopping around in there.

Heading out to the bitter cold!! Talk to ya all later.

Posted 2/15/2011 7:04 PM (GMT 0)

Hi Everyone,

 

Just quickly checking in...

 

Boat, sounds like things are progressing for you to have your surgery! Great news! Just to toss more numbers into the mix, immediately post-op I started out with about 8 BMs per day, I'm down to about once every 48 hours or so. I know a lot of people have to stay on a low residue diet, but I always found that made me feel worse. Following surgery, of course there is a period of eating low-res, but now I have to eat a ton of fiber to have any hope of things moving! Part of that I'm sure is the pelvic floor dysfunction. I kind of think about it like a swallowing disorder. When I was doing my undergrad clinicals, we saw patients who had swallowing disorders. Whether it was from a stroke, TBI, or a congenital anatomical malformation, pure liquids are the hardest things for these patients to swallow (choking and aspirating) because there is no consistency adding pressure against those muscles. Thickeners are added to their fluids, and they tend to do much better with solid foods. I kind of parallel that to the rectal issue. If I eat low-res (or take MOM or Miralax) and have liquid stool, I cannot for the life of me get it out! But, if I eat high fiber and have some consistency to the stool, it is much easier.

 

Sarah, oh my word, sweet girl. I cannot believe what you are going through with just trying to get tissue analyzed. Many prayers, and please keep the updates coming!

 

Keep praying for Lizzie!! They didn't have to do surgery to place the G-J tube, but she has been in increasing pain ever since it was placed. She has had fevers for over two weeks, and just has all the symptoms of infection. They are doing another CT today, and running more labs. Pray they would figure this out quickly and get the problem solved. There have been several nights that they haven't been able to run the feeds because her pain is so bad (currently off IV pain meds, only on orals/administered through the G-J tube). A blood culture would be great, but her fevers haven't gotten high enough to warrant that yet (it did twice, but the doctor said no to a culture because incentive spirometer brought her temp down half a degree to below the "time for a culture" threshold). With fevers constantly spiking and breaking, and being in so much pain, she's miserable and exhausted.

 

I called my GI doc's office yesterday to see if there was any way they could get me in before my appointment on the 24th. I'm on the cancellation list, so hopefully something will open up. I'm trying to make it through the semester, but I'm not sure at this point. Guess we'll see...

 

Hope you all have a great day!

 

Allie

Posted 2/15/2011 7:14 PM (GMT 0)
Hi ALiie,

Thanks for update. If a blood culture is nothing dangerous and is just a normal blood draw, why don't they just go ahead and do it for Lizzie? My prayers to her. ANd to you, good luck getting the sooner appt. Rosemary
Posted 2/15/2011 8:09 PM (GMT 0)
Wow kinda stinks that so many of you still dont go once or more daily even after surgery. Do most people continue to have around 4+ for life (that is what I keep seeing stated in studies and other places as an average)

I'd Rather Be Riding said...
Hi Everyone,

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Just quickly checking in...



Boat, sounds like things are progressing for you to have your surgery! Great news! Just to toss more numbers into the mix, immediately post-op I started out with about 8 BMs per day, I'm down to about once every 48 hours or so. I know a lot of people have to stay on a low residue diet, but I always found that made me feel worse. Following surgery, of course there is a period of eating low-res, but now I have to eat a ton of fiber to have any hope of things moving! Part of that I'm sure is the pelvic floor dysfunction. I kind of think about it like a swallowing disorder. When I was doing my undergrad clinicals, we saw patients who had swallowing disorders. Whether it was from a stroke, TBI, or a congenital anatomical malformation, pure liquids are the hardest things for these patients to swallow (choking and aspirating) because there is no consistency adding pressure against those muscles. Thickeners are added to their fluids, and they tend to do much better with solid foods. I kind of parallel that to the rectal issue. If I eat low-res (or take MOM or Miralax) and have liquid stool, I cannot for the life of me get it out! But, if I eat high fiber and have some consistency to the stool, it is much easier.



Sarah, oh my word, sweet girl. I cannot believe what you are going through with just trying to get tissue analyzed. Many prayers, and please keep the updates coming!



Keep praying for Lizzie!! They didn't have to do surgery to place the G-J tube, but she has been in increasing pain ever since it was placed. She has had fevers for over two weeks, and just has all the symptoms of infection. They are doing another CT today, and running more labs. Pray they would figure this out quickly and get the problem solved. There have been several nights that they haven't been able to run the feeds because her pain is so bad (currently off IV pain meds, only on orals/administered through the G-J tube). A blood culture would be great, but her fevers haven't gotten high enough to warrant that yet (it did twice, but the doctor said no to a culture because incentive spirometer brought her temp down half a degree to below the "time for a culture" threshold). With fevers constantly spiking and breaking, and being in so much pain, she's miserable and exhausted.



I called my GI doc's office yesterday to see if there was any way they could get me in before my appointment on the 24th. I'm on the cancellation list, so hopefully something will open up. I'm trying to make it through the semester, but I'm not sure at this point. Guess we'll see...



Hope you all have a great day!



Allie

Posted 2/15/2011 8:37 PM (GMT 0)

I think four is about the average. That's what my surgeon said, and that's what I saw published too. Because you don't have any rectal/pelvic floor problems, I think you will do really well!

 

A

Posted 2/15/2011 10:09 PM (GMT 0)
Boat,
Allie is right. Your colon is the only slow part of you. Most of the women on here who have issues after removal of colon for colonic inertia also have pelvic floor/rectal issues that are not diagnosed before they have the ileorectal anastmosis surgery. You were lucky and got the full work-up and all else looked good except your colon, so you should do fine.

Rosemary
Posted 2/15/2011 11:44 PM (GMT 0)
Oh, how lucky I am! The last few days have just been horrible. I managed to get a different antibiotic prescribed and this was already very complicated as my GI doc is currently not in clinics and he is the only one who actually knows about my case. My GD is not helpful at all.
This new antibiotic is not really new; in fact that was the a. which I had to quit as it is not supposed for long term therapy which I had to do for quite a long time. I was so happy when I managed to quit only this antibiotic while still taking the other sort. This new old a. causes more stomach trouble, have been sick to my stomach and have had intense pain. My bladder pain is somewhat better, but it’s not a significant difference though I am now taking the two sorts of a. together and I am on ridiculously high doses of both.
My poor stomach and gastric mucosa! I already have some inflammation due to the permanent use of antibiotics but fortunately, I wasn’t symptomatic for that so far. Now I am afraid that this may change and the inflammation is aggravated as I am so sick to my stomach when I know that it doesn’t stem from my usual motility issues (as I did not eat anything before and only a little bit/a few bites with the antibiotics and felt the nausea and pain coming in timing); most of all, it feels different than my pain I have with my motility issues and this kind of pain is most often directly linked to the amount of oral intake I had. This new kind of pain/nausea is a terrible thing nonetheless; I hope I don’t get a permanent damage.
On a brighter side, the responsible GI doc of the clinic which seems to have the most experienced with motility diseases wrote back; she was just too busy to answer.
She proposed to get into touch with the neuro-urologist as I had explained her that he was the only one who might help me when there was a firm evidence of my condition in the bladder. And there is no alternative but to get full thickness samples by laparoscopic surgery and get them analyzed by an expert. She would be willing to transfer my request to her colleagues from the surgical department after having talked with the neuro-urologist and he agreed to my description of my situation.

Post Edited (pelztier86) : 2/15/2011 5:40:45 PM (GMT-7)

Posted 2/16/2011 2:51 AM (GMT 0)
Allie,

I think they should get her tested for a urinary infection as well as an infection of the G-J tube - both on the outside (infection of the stoma/around the stoma side) and of the tube itself and the gut tissue.
A G-J tube is pretty mobile and can dislocate pretty easily (in contrast to a surgically placed J-tube). Thus, it may harm bowel mucosa providing an entrance for bacteria.
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