TOTAL COLECTOMY PART 28

Jen,
I'll bet your bill is a mistake; the Dr. would certainly have everything approved before doing surgery. Can you call first thing Monday morning to straighten it out?

For the record, my poop floats alot, too. And it looks like little shrimp alot of the time, unless it's like mush or liquid. I never know what's coming out of me!!

The miralax has helped tremendously with the rectal pressure. I only took it once today, and still went many times. I usually take it twice a day, but I was out early today and forgot. I still was able to eat lunch and go! As long as I can keep things moving I don't get the pressure. Once last week at work I ate almost an entire bag of sun chips and I got blocked up and had the pressure, but I came home and used an enema, then drank my miralax and things got back on track. I'm a little nervous because I'm on antibiotics now for a throat infection and the last time I was on antibiotics was when my pooping slowed down so much.

Off to watch a little tv and then to bed early...gotta get up early tomorrow.

Janie

Jen, just a thought.. with my insurance company, I can log on and actually see outpatient or inpatient authorizations. I have only needed authorization for 1 MRI and my last INpatient surgery - other then that - I had 2 other surgical procedures and no authorization was needed. The last tests I had pelvic MRI ($1900.) and barium enema ($2100.) they just did without authorization and they immediately paid. Of course, all insurance companies and plans differ...

Hodaya,

We'll send you some rain. We got lots to spare. Today is nice so I gotta get out and make myself go to that ostomy meeting. It's held in a hospital and I have an aversion to those. WOnder why. Hope I don't catch anything. Maybe I'll wear a mask everyone is due to that flu scare we have going on over here in the US.

Get copies of your medical records from all the docs you've seen. In there they often put comments like "Pleasant woman looking for cure to her problems" or "Hypochondriac middle age woman comes in again to discuss same old problem." From the wording of your records you can get a sense of who is "ON YOUR SIDE" and who would rather not see you again. I think that is what is holding you back from going back to them; you're not sure of who thinks what. You had surgery. That is supposed to cure all. It hasn't. You don't want to revisit someone who is going to label you as a constant complainer. Does not matter what country you're from medical politics is the same the world over.

As I did not have colonic inertia, but some undiagnosed outlet issue, (as I found out the diagnosis they made did not exist on review of my case). I at first did not understand why removing any of your inert colons would not solve the issue. But as I've read your posts and come to understand your and the other's issues, it makes perfect sense. Inert colon AND outlet issue, only the colon is removed, the outlet issue remains. that would make sense that you'd still have trouble. I got it now, why would docs not get this? Much more why would they take out a colon without assessing to see if there were outlet issues too??? Auuugh! It boggles the mind. I forget who on this board besides you are worried about the slowing down of the small intestine. But if you get those absorption tests then get reassessment of the outlet issue, it really may just be the outlet issue getting worse, not anything happening to your small intestine.

Between all of us we will get this figured out.

As I did not have anismus prior to surgery and did not develop it post-surgery, scarring holds my rectum at a right angle. And as I did not have the loopy sigmoid as was misdiagnosed on the original scan and the 2 original surgeons removed it anyway, thus creating colon scarring. Then a gastrograffin enema done after the 2006 surgical screw-up showed no redundancy in any part of the rest of my colon, and my post-op transit test was normal, my medmal attorney said we could win the case and I would still never find out what my original issue was with incomplete rectal emtpying. Upon closer radiology review, I did have a rectocele, but the contrast did not get trapped in it so even that was not the cause. I know I will have to let go of the "wondering" as we do need to move forward, but it really spins my head around.

You're right we've all been with all this poop issue for far too long. Good luck. Have a good weekend. Rosemary

AND just wanted to say, thanks for your support, input and advice, Rosemary! it really helps! to all of us!

Hodaya, I am taking Wellbutrin for depression. I like this particular one because it actually will supress your appetite. It is actually prescribed in some cases for people trying to lose some weight. The only side effects I had when I first started taking the wellbutrin were headaches and trouble sleeping. It only lasted for a couple of weeks and was manageable. My husband is on Lexapro and he did not have any side effects. It actually helped him by alleviating stress and lowered his blood pressure which was beginning to be a problem. He also did not gain any extra weight. I have a friend that is on Effexor it is like a mood elevator she really likes it. I guess you just need to talk to your doctor and discuss all the options. I hate that I have to be on an anti-depressant but I know if helps keep my balanced and not going off the deep end.

Janie I'm calling the insurance company first thing in the morning. I cannot imagine why they would deny it. Also the doctor's office told me on two occassions that they check that out ahead of time. I can't imagine they would cut on me and put me in the hospital for 7 days if they didn't think I had insurance that would pay. It just freaks me out that I get the bill from the surgeon's office with the denial claim. I mean wouldn't that send up red flags to them before they sent it out. Of course it probably gets sent out through some secondary company who doesn't look at the individual case. I just hope I don't have to chase down medical records for the past 9 years to get the claim approved. I mean I have more than proved my case that I needed surgery. It wasn't like I walked into a surgeon's office and said, "Hey I would love for you to rip out my colon.....I just don't think I need it anymore." Lol

Lizzie it was good talking to you last night. Hope you are doing ok today.

Rosemary thanks for all your advice. I really appreciate you all on this site. I don't know what I would do if I didn't have you gals to talk to.

I did get out today and went to church. Problem is during sunday school, which we have after church service, I started having terrible cramping on my left side. It was the exact type of cramping that I had Thursday and Friday except it was on the right side then. I was doubled over in pain and had to come home crawl in bed and take vicatin. I can only describle the pain and very sharp and intense. I had not eaten yet and had gone to the bathroom 3 times during the night. Anyone else have this type of pain? It is awful and completely takes me out of commission.

Jen

Jen

Hoddaya,

it could be the fact that your small bowel is slow either but you cannot base your assumption only on the hard stools you have. If you have a severe outlet problem (this can also mean rectal inertia...the same like CI only in the rectum) then the stools get trapped in it and although the rectum does not normally have an absorbtion function it does absorb the water with your outelt prob and that's why the stools get hard. Or you have a pocket/anatomical problem where the stools get trapped etc.

There are a huge variety and range of outlet problems (both functional and anatomical) and they vary greatly in their severity. Mine was so severe (rectal inerita) that it caused spasms which made a loop in the rectal tube when I tried to insert it. And I still have problems with it even if I don't use my rectal stump due to the ileostomy.
I wasn't able to pass rectal enemas. I was wondering where the water went to since I did not pass anything. I could hear and feel it, it was so awful but I could not get it out. I had to wait two days until I felt that the water was reabsorbed by the rectum. So I know it is possible.

I was and am unable to expel even gas or liquids. I am no longer able to assist manually since my spincter is spastic which means it is always narrowed by false nerval stimulation. You cannot open it with your fingers, even my doc failed when he treid to insert his instruments for flushing the stump. No way.

I know it is hard when your biggest fear is that your small bowel slows down because then there is nothing more left to do. You have to live with it, there is no cure except transplantation for the very bad cases.

But you can manage to live with it. I am on parenteral nutrition now because of my small bowel/stomach problems/intestinal pseudo-obstruction.

Waht I want to say: I can understand your fears but please don't focus on the small bowel unless it is not certain and there is still another possibility for your problems.

Hoddaya,

have you ever had thyroid problems? Hypothyroidism can have a huge influence on bowel motility.

Maybe you should have worked this out, even if your labs very fine prior to colectomy since major surgeries can alter metabolism.
And i have also made the expereince that certain foods (for expample soya products) slow down the metabolism which in turn decreases motility.

Hi all,

Very active on the forum this afternoon; am trying to catch up so I can answer some questions. FIRST, though my ostomy support group info.

Talk about a "kicked back" group. Ages ranged from 50-90. I was the only one with a stoma due to an "injury" I spared them the details. MOst had had UC or Chrones or cancer. BUT they were all well and quite lively. They couldn't stop talking about their next group trip to Foxwoods (our local gambling casino), or their last knee replacement. The poor moderator was trying to get them back on topic but it was like they all had Attention Deficit Disorder or something. I did manage to get my question answered regarding my being "electrolytely challenged." Tracy and maybe a few others were right, I'm drinking too much water and diluting my electrolytes. Some of them gave me recipes for half glass of orange juice, 1/2 glass of water, 1/4 table spoon of salt. That way you get your water, your potassium, and your salt. I asked one guy if he avoided coffee, tea, wheat germ and chocolate due to the increased risk ileostomates have of getting kidney stones (oxalate, uric acid, and calcium stones.) Lots of oxalates in that group of foods I just listed. He said "Hell, no." Then a bunch of us went out for a drink after the meeting! Not sure how "healthy" it was but these folks have truly "moved on." (or else they are figuring what do I have to lose? Wasn't quite sure which it was.) I am now moving quite often to empty my bag after that drink, but hey, it was worth the afternoon of entertainment.

Pelztier, wow you have some info that is new to me. To answer your question, If I've had no solids, I can drink red gatorade and see it in about 20 minutes. I've had my ileo for 2 years. Red gatorade used to appear in about 10 minutes. If I eat say an egg on a biscuit and some cottage cheese, I can drink red gatorade and see it in about 3 hours. So the solids with some starch really slows things down, but I'm told 3 hours is usual small colon transit time on solids. My issue is I don't eat enough solids. I gotta start doing so. But still some scared due to all the issues I had with adhesion obstruction prior to the lysis of adhesions and creation of ileostomy, but I gotta "get over it" and be a bit more like the ostomy group. ( I have been fine for 2+ years now.) They were hot tickets in that group, all of them.

Janie, Yeah docs sure word records the way THEY want things to be perceived. I forget who asked, but there are patient progress notes you can ask for then there are the doctor's notes. At some practices they are one in the same, but at other practices they are actually 2 different sets of records. The notes are often even more telling than the patient progress notes. For example in the "top secret" and also not so secret when your lawyer requests them realm, the docs notes are often VERY telling. At one point I got so confused due to all the 2006 pre-op opinions I went to see a local GYN and said I'd been told by 3 colorectal surgeons I needed my sigmoid colon removed. The local GYN and I talked about structural anatomy (this of course was when I assumed the defeocgram had been read correctly by the radiologist and that I really did have a sigmoidocele.) The local GYN's notes just said we discussed my upcoming surgery and that the sigmoid would be removed due to sigmoidocele listed on the report. In his own personal notes which my atty got, this local GYN (who had been a RESIDENT under my 2 original 2006 surgeons) said "I have seen a high rate of complications with these sigmoid resections, but I didn't mention that to Rosemary." I absolutely hit the roof when I read that as I would not have gone to the two original surgeons if one of their former RESIDENTS was writing that about them. If this local GYN did not tell me his "thought", why did he write it? We could add him as a defendant for withholding material information, jeeze! That is only one of the weird writings I uncovered during the record gathering phase of my project.

Hodaya, So glad the colon removal greatly improved things for you. I hope you can get a handle on the outlet issues; maybe at least the medicine close to Miralax that you found in your country will do the trick or at least help. A place that really knows it all here in the States is Bruce Orkin, MD colorectal surgeon at George Washington University Medical Center. Had I known of him at the start of my issues I would have gone to him in a heart beat. BUT so far for you to fly. Are there any specialized centers near you in Israel? (I was in Egypt, not too far away, on my world cruise earlier this year seeing the Pyramids and Suez Canal. Was awesome. WOuld love to visit Israel sometime. So much history in that part of the world compared to the U.S.)

So that was my visit to the ostomy support group. I liked the buzz from the Bailey's irish cream on the rocks Rosemary

Wishing everyone a good week. I gotta find a swine flu shot; vaccine just isn't forthcoming around where I am.

So I am sitting here drinking some gatorade with miralax in it. I have not gone to the bathroom since 6 am. I feel terrible. I have not eaten anything different today than I did yesterday. I used the bathroom all day yesterday and several times last night. This is so aggravating. I hope the miralax moves things through. Rosemary I am thinking you are probably right, and I should at least call the doctor about the pain I keep having. At the same time I don't want to waste anyones time or be dismissed by the doctor like I'm crazy or something.

I also pulled my benefits booklet for insurance. It states that it pays for inpatient and outpatient surgery. Prior approval is needed for certain things like cosmetic which they obviously don't pay for. I was trying to think back I had my gallbladder taken out and never had a problem with insurance. (same insurance) Gotta be a glitch. Can't wait to talk to someone in the morning to put my mind at ease. All I can think is my gosh what if they don't pay! Can we say financial ruin!

Jen

Jen

Jen, In addition to food log, keep a calendar of when the pain started and how often you get it. Just jot down approximate times your bowels move. They will vary even if you're going out of your small. If you did bm's all day yesterday and all last night maybe they're just slowed down a bit today. I cannot say as I'm not sure how the small hooked to the rectum really goes in terms of varying bowel moves and timing and such. I'm always going into the bag with an increase after eating but without rectum as a reservoir I'm sure no expert in this.

But do call your doc about you pain. You are not very far out from surgery and would certainly not be bothering him if you report a post surgical pain. Try to notice positions or acitivities which bring it on if you can. It may be a clue. Good luck tomorrow with your doc and your insurance. Hope the Miralax kicks in for you and you feel better.

Maybe just back off on the solids for a few days. I can just honestly feel full enough on cream of rice cereal, yogurt, cream soups, and some ice cream or sherbert. Boost is pretty good for protein or Ensure. Then of course tea, coffee, milk, water, juices, gatorade. One would think liquid in and liquid out expecially when dealing with the small intestine. Digestive juices mixed with all this liquid I would guess would move along pretty well ?

Best wishes, Rosemary

So I just got off the phone with my insurance company. They said that the claim was not denied. The surgeon's office submitted the bill to them on 11/6/09 and then sent me a bill dated 11/10/09 showing claim denied. The insurance company has 30 days to process the claim and they processed it on 11/15/09. They are paying for the surgery. I can't believe the surgeon's office sent out a bill to me 4 days after they submitted it to blue cross and told me the claim was denied. The nerve!

Lizzie I know what you mean about scared to eat. It's hard to eat when you are not sure if it will stop you up or cause pain. I'm now having issues with both. I'm having a lot of lower abdominal pain and was up and down again all last night. Thing is it comes and goes so it will be hard to explain to a doctor and I'm afraid they will just dismiss me. I think I will try calling them anyway because I really just want to make sure nothing is wrong. I was doing so well up until last Thursday. Aggravating!

Jen

Hi everyone!

So, tomorrow is my pre-op day! It seems like time is going by so fast! I guess being so busy sure does help.

Jen, I'm so glad you straighten out that bill, I know it must have been heavy on your mind. Did you make a call to your doctor? I do think if this is something that just recently started - it does warrant a call. He got paid plenty - he shouldn't mind a phone call! I'm sure they will not think you're a pain.. believe me, there are some that call and call and cry and cry - you're not one of them!

Christy, glad you stopped in! The Smoky Mt area is beautiful.. we moved there (E. TN 3 years ago, but a beautiful home on 46 acres, and moved in and moved out in 6 months! We came back to FL because our family was all here. The house has been on the market 2+ years!! We never dreamed it would take so low to sell, but it is higher priced then most homes in that area.. we reduced and reduced.. and FINALLY have a contract pending. We should close within 2 weeks (I pray).

Lizzie, gosh.. insomnia is hard! I was awake from 4:30 AM.. just couldn't fall back to sleep. I do have insomnia a bit - blame it on my peri-menopause...