Total Colectomy 2011.1

just b/c you had one bm doesn't mean the markers are out. i have a feeling they are all still in. let us know how it goes.

Hey there. Sorry if you took it the wrong way. I was just trying to say that for people with a true GI problem (like you and others) it sucks worse then a true ED, as you have people accusing you, and you also have to deal with side effects similar to ED's since you physically can't eat as much. Keep on "riding" ;)

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



I am not starving myself, although I know it looks that way from what I am able to eat. I literally cannot eat any more than I am. We're talking physically unable to do it. Even the amounts I do take in cause tremendous amounts of pain. That's the problem with motility disorders that encompass the entire GI tract. Eating disorders do shut down the GI tract, but there are patients whose GI tracts quit on them without warning or reason (have I mentioned how much I hate the word "idiopathic"?!) regardless of what they eat or how much they eat. If it were as simple as eating more, this forum wouldn't exist. I eat very balanced, get lots of protein, good fats, carbs, a high level of antioxidants, etc. and all of my labs come back better than perfect time after time, and I have had the input of great clinical dietitians. It has taken years of research (and I was all lined up to start a MS in clinical dietetics before I hit another free-fall with my health) to find what I can eat, what I cannot, and the correct supplements to take. I assure you that although my intake is not the standard 2000 calories a day, my diet has been very well formulated. The more my family and I learn about motility disorders, we have come to realize that I have always had problems. As a toddler I would take two bites and say that I was full. I have always had a pathetic appetite, and now we know why.



Allie

"We report two cases of mechanical intestinal obstruction due to clinically undiagnosed urinary retention. Both patients were able to micturate at the time of diagnosis, however the residual volumes of urine on catheterisation were both over 1000 ml. In both instances, the diagnosis of acute urinary retention was not reached due to the co-existing features of intestinal obstruction. Further investigations showed that extrinsic intestinal compression by a dilated urinary bladder aggravated or caused intestinal obstruction. This is rarely reported in the literature. When diagnoses cannot be made in patients with uncharacteristic presenting features, radiological investigations such as water soluble enema or CT are instrumental in reaching an outcome."

Hello Hodaya--Thank you for the warm welcome to the forum.  I am so thankful for everyone's

comments and support.  I'm glad you are doing well with your ileostomy, and I

have appreciated reading your comments.  I hope I don't need an ileostomy in

the future, but if I do, I know I'll be able to tolerate it better just by hearing

the enthusiasm and relief people on this forum share about having it done

and feeling better for it.     Willow

Rosemary--   Thanks for your response and for explaining some of the details

from your situation.  I'm sure the litigation process you are involved in is very

stressful and trying--nobody knows until you've been there.  Someone in the process

of healing and trying to stay well doesn't need that additional stress!  What a disaster it

all must have felt like (maybe at times it still does), but you amazingly still keep

going and are doing better, finally.  I hope the legal process works well for you

and that justice is done, as best it can be.  I just shake my head at how such mistakes can happen; accidents in hospitals occur far more frequently than we

ever know about.  Very sad deal.

Wish the mayo team could have been more on top of the scar tissue issue for

you, but I know what you mean about even the best of the best can still have

their blinders on, and we are then negatively impaced by their limitations.  I

trust you are in the best hands now that things are going better for you.

Thanks again to both of you for your thoughtful responses and suggestions.  I'm off work

each summer, so if I decide to get the surgery, it will most likely be late May/early June.

I will be off the list for a day or two after today, so have a good rest-of-the week everyone! 

Willow

Boat, I'm not 100% sure, but I think it depends on your insurance. I think HMOs require a referral, but with PPOs you can go see whoever you want. That's how it is with me...I'm on my dad's PPO, so I haven't needed referrals for insurance purposes, but if there is a specialist one of my doctors want me to see, then they refer me. I see what you're saying with the GI issues and ED problems getting confused...lots of us on here have been accused of it. And thanks! I haven't been on a horse in years, but hopefully someday I'll be back in the saddle :) I know your personal experience with GI problems will help make you a great doctor who looks under every rock! Any idea which area you might specialize in?

 

Sarah, I will let Lizzie know about that! I notice it in myself too...sometimes my small bowel pain is alleviated by urinating. I know portions of bowel must be getting compressed. On Lizzie's bladder scans, it will show that she has about 400 ml in her bladder, but she will only be able to get about 200 ml out before the pain is too bad. Another thing is they have her on IV fluids going at 150/hr, but she is only urinating about 300 ml per day.

"Another thing is they have her on IV fluids going at 150/hr, but she is only urinating about 300 ml per day. " that has to be clarified.
She has UTIs due to the retained urine. And because of the retention, the bacteria in the urine has much more contact time and time for migration into the kidneys.
Her little urine output could be either due to electrolyte imbalances or kidney damage which may also co-exist. They HAVE to take care of this.
I know this well, from my own experiences with my bladder. the kidneys are not an issue one can postpone and play, i saw patients with advantaged kidney failure. thats another reason why i am worried because of my chronic infectious condition and the bladder catheter. i as well as Lizzie can't afford to have kidney issues on top of the intestinal/urinary issues.
however, I would also resuggest the idea of an auto-immune disease which can affect the kidneys and bladder as well as the GI tract. It's also lupus eryth., and I recall that Lizzie complained of generalized and joint pain prior to surgery. I think she should get tested for that as soon as possible as THERE IS A TREATMENT whicah can at least stop the progression of the disease in her Gi tract.

Allie,

I am sure the ileo is the "best" option you have.
I know it from my personal experience that a rectum that basically acts like an obstruction and hampers intestinal flow in the distal small bowel also slows gastric empyting.
Normally, one have the gastro-colic reflex which means that every time the small bowel emptyies into the colon and the colon starts to propagate the stuff your stomach is stimulated.
As we don't have nothing but the rectum any more this rectum now takes over the role of the proximal colon. Thus, if you have a permanent obstruction there, it will cause delayed transit in your distal bowel and stomach as the rectum signals that it's "full". Normally, the terminal ileum is able to make a powerful contraction that pushes its content into the colon. If you lack this powerful contraction which is probably reduced in us anyway, as the rectum signals "STOP" this cerrainly will affect the clearing of your entire distal small bowel. Knowing that intestinal transit is slower in ileum than jejunum and slowest in the distal ileum, this has a huge impact on the proxiaml small bowel, too.

The GI doc from London wrote back. I am so relieved. To someone who does not have to face psychic misdiagnoses and accusations, it may not be understandable why I was worrying so much. But if one is in the same situation as me, I am sure one will be afraid of saying anything “suspicious”.

Anyway, I guess the reason why he hasn’t written back earlier is that he did not know how he could help me here in Germany. I numerated some names of German doctors from the Neurogastroenterology group about whom I know that they are pure scientist and don’t have anything to do with clinics or who are “only” concerned with IBS.

Apparently, this got him to be at a loss. He now asked what I would propose and if I was prepared for coming to London to see him. I answered him that at this point it would be most important to get an exact histopathological diagnosis and therewith a confirmation of my bladder involvement for the German doctors. I don’t have an alternative but to go this route if I want to have the actually medically necessary surgery.

This for sure, means a laparoscopic surgery to obtain the full thickness samples of the stomach, small bowel, and bladder.

He said that he would agree to the point that a full thickness biopsy may be helpful in my situation; he offered me to ask a German doctor he well knows if he knows an appropriate surgeon or could refer me there. I’ll see what results from this.

I can just say that I am more than ready to have the bladder surgery even though I am aware of all the potential side-effects and risks. Believe me, I have had enough time to think over this conscious decision and to get me thoroughly informed.

I know that it have to be done unless I won’t risk having kidney failure in the long-term or inducing a long-lasting or irreparable damage to my immune-system, perhaps even auto-immune disease. And I can’t afford to suffer from kidney failure in addition to my already existing huge issues. I know how people look like and live with end-stage kidney disease as I was lying with these patients in one room during my hospital stay for catheter infection/sepsis.

I am fully aware of the fact that a bladder surgery is a huge thing, especially as I already had multiple surgeries. I am fully aware of the fact that there may be greater risks regarding the postoperative function of the “neo-bladder” pouch created from a segment of intestine which is affected by CIP. Usually, one needs 20-50cm of the small bowel depending on the specific type of the urinary diversion.

I am fully aware of the fact that my intestinal function may decline following surgery, even in the absence of troublesome adhesions which I don’t seem to tend to develop that easily. Any resection, particularly of the small bowel, should be avoided in CIP due to the common clinical experience that it may precipitate deterioration of intestinal function and motility. Apart from adhesions aggravating the dysmotility problem, there seems to be an intrinsic, yet unknown mechanism which induces a faster progression of the underlying pathomechansim. Maybe it’s due to nerve damage which definitely occurs in every patient undergoing surgery. Usually, the nerves get better with time, but if a person with dysmotility already has some issues going on in the enteric nervous system, this regeneration process may not occur. But that’s just an idea.

BUT I also know and consider that CIP is usually progressive (and so far, I can confirm this common experience), and that it’s rather a matter of time that my intestinal function/motility will more and more decline and may reach a point where I am unable to be fed through enteral feedings and totally rely on parenteral nutrition. The last stage would be total intestinal failure, with intolerance of parenteral feedings due to liver damage. In this case, there is only the option of an intestinal transplant left.

Knowing all this, I would be glad to have surgery nonetheless. If it helps to prevent kidney damage and reduce the intractable infections and gives me a better quality of life in this respect I would be more than willing to accept the fact that I might pay the price bowel-wise in the nearer of farer future. My intestinal issues are not controllable any way, and if it’s pretty sure that I will get worse with times, it doesn’t matter in my situation if it happens sooner or later. So I want to focus on issues I CAN change and where the treatment could help me reducing the amount of problems (but not necessarily the severity of the remaining intestinal problem). It may sound crazy but it’s the choice between the devil and the deep blue sea; yet one HAS to make a choice and everyone has to do this by own. For me, the dreading kidney issues as well as an auto-immune disease are issues I am really terrified about. In contrast, I had to learn with my intestinal problems throughout my life-time and I know how life is with that, I know my body very well in this regard. It would be very hard to adapt to a complete new situation with kidney and/or auto-immune problems, perhaps in addition to progressing intestinal issues. That’s another reason why I would be ready to face the worst-case scenario meaning that my condition may rapidly deteriorate following surgery and require total parenteral nutrition. For sure, there is still the option that everything works fine after surgery; in contrast I definitely know that without surgery I will get previously PREVENTABLE kidney damage and irreversible problems with the immune system due to the over the counter use of antibiotics; later on even the risk for developing cancer is high. In addition my social life is non-existing due to the constant drainage problems and handling issues with the catheter. I already had a Hickman line, and thus, I know it’s not too bad unless you don’t get constant infections/sepsis but I think that would be a smaller problem if the permanent source of bacteria, my bladder and urethra, are gone.

Actually, I can't tell this anyone apart from my mother as I know they would not understand my point of view. Especially the docs would consider me as being crazy though it's my way of accepting, handling and facing the situation.

I think that those people can relate who also have to face a similar situation and has to make a decision.

Post Edited (pelztier86) : 2/3/2011 3:46:41 PM (GMT-7)

What does a laproscopic sub total colectomy usually cost?

Here's the update on Lizzie:

 

She was admitted to the hospital in Michigan on Monday night. She was in so much pain that she could barely stand and could honestly not take it anymore. Last week she called her surgeon's office in Cleveland several times and left messages with his nurse. They never called her back, which basically communicates that they are done with her. Being that sick and having your doctor throw up his hands in "I don't know" defeat is devastating.

 

Monday night, she went to the ER and was admitted. Her pain is now more under control, and her first surgeon came by to see her. She told him what happened with Cleveland and how it seems they have given up. She put her foot down and said that she will not go back to Cleveland, that she needs to be treated there where she is close to home, and close to her husband and family. Her surgeon agreed; Lizzie told him that Cleveland said she is "failure to thrive," and his response to that was, "So let's get you thriving!" YES!!!! Finally! He is bringing in urology for a consult and a work-up for her bladder issues and the nutrition team is following her to make sure the tube feeds are still going ok.

 

Lots of prayer is needed for 8 AM EST tomorrow (Friday) morning! Interventional radiology will attempt to place a G-J tube. There is a chance that there will be too much scar tissue to place the tube in this way. If that is the case, surgery will have to be scheduled to place the tube. Sometimes on a patient who has had the amount of surgery Lizzie has, it is safer to place the tube surgically. Please be in prayer as her doctors will need guidance and wisdom during the procedure tomorrow to determine whether the tube can be placed or whether surgery must be scheduled. Pray for protection for Lizzie and comfort and peace for her and her family.

 

Many thanks and lots of love!

 

Allie

What would be the difference between the total and sub total?

The one I am thinking would be good for me would be where "all of the large intestine except the rectum (the last 8 inches of so of the large intestine) is removed and the small intestine is connected to the top of the rectum". Is this not the one I would want?

Post Edited (boatnerj) : 2/4/2011 7:18:19 AM (GMT-7)

Hi Hodaya,

I was always curious why they called it a sub-total colectomy when they took the whole colon.

Thanks for explaining.

So Boat would need the subtotal colectomy as you all had?

Rosemary

Boat, Your plan sounds great, and those last few tests important, but so far sounds like your pelvic floor is AOK and like the colon removal would be the way to go. You really have it all together. I soooooo wish I had seen this strand of this site back when I was trying to deal with my incomplete rectal emtpying diagnosing. As you know, I was not worked up thoroughly enough, misread of tests done, wrong surgery, done wrong, no f/u to complications, ended with ileostomy I pray keeps working. I for some reason was on the IBS strand of this site and did not even think to check in with the ostomy people. Here is where all the info is. Good for you. You are way on the right track.

Rosemary