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TOTAL COLECTOMY PART 35 THREAD 14

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Posted 7/23/2010 1:03 AM (GMT 0)
Had my second round of biofeedback today. Manual stimulation... argh. She said she wasn't applying much pressure and I was in a lot of discomfort. For the electrical stimulation she could only go up to a 1. It was burning really bad each time a pulse was sent. I don't know if she was tired today or if she doesn't think there's much hope with my case.

My numbers she said are on the high end. Boo.

I also developed a sinus infection and I'm on meds for that. The doctor I saw wasn't my regular physician. They're always so inquisitive - "Zofran, really? What for?" Heehee

I can't imagine having pericarditis on top of everything. Hope you're doing better today.
Posted 7/23/2010 3:51 AM (GMT 0)
snugglesaurus

Oh my, sorry to hear that. I don't have any faith in bio-feedback after all Ihad read. They just dont have a high
enough percentage of success for me....I researched it before my surgery and opted not to go that way. But I

hope that it works for you...



Leslie
Posted 7/23/2010 10:20 AM (GMT 0)
snuggleaurus, Manual stimulation... ?? how uncomfortable (embarrassment level) that had to be! I know when I was going to physical therapy last year for my pelvic floor issues.. it was more than I could stand! I hope this bio-feedback works for you!

So quiet here..

Hodaya, Tracy, Lizzie.. how are you gals doing?

Val, getting nervous? I know I am! I went for my pre-op yesterday, left the house at 9:45 AM and got back at 5:30! They are hoping to do all this repair laparscopically.. they have a 4 hour time block setup for me in the OR, so it sounds like it takes some time. I'm the first one in the morning and have to be there at 5:15 AM! Yuck.. I'm a wee bit over an hour away, so I'll be waking up in the middle of the night to get there!
Posted 7/23/2010 1:11 PM (GMT 0)
Hey everybody.

I've been going through hell since I was little, constantly going to doctors appointments, the ER, trying to figure out what was causing all my pain. I kept being told I was constipated. Duh.

That was fine for a while, except its the only answer I've ever heard.

I work in surgery, and after years of just dealing with negative coloscopies, negative EGD's, negative CT scans, no luck on any drugs.... I finally used the resources I've surpassed every day, sucked it up, and asked one of the colo-rectal surgeons what the hell was wrong with me.

He asked me a couple questions, said something about slow colonic transit, called his nurse, who left a package with instructions for me in his office. Its a Sitz mark test. I'm supposed to take the pill immediately tomorrow morning, and my first x-ray will be on Monday. My second will be on Wednesday.

He said that he wasn't going to lie, but it sounded like I probably have colonic inertia. He told me that with all the avenues I've already been through, a colon resection may be the best option if this is truly what I have. I'm only 21, and the thought of having my WHOLE colon removed scares me...

My concern is, that I normally go about 10 days between BM's, and I'm approaching that soon. I'm worried that starting the Sitz mark so soon to my next expected BM will influence the test incorrectly...

And I'm so desperate for an answer that I cant even stand the thought of it coming back negative too.

Has anyone had similar experiences, or maybe just words of encouragement?
Thanks.
Posted 7/23/2010 2:01 PM (GMT 0)
I can tell you.. I had the sitz marker AND had 2 BM's during it.. and I passed only 4 markers in 5 days, the rest were still all throughout the colon.. so not sure if having a BM will alter the test or not, but if it was me.. I would wait till you have a BM and reschedule to have it done after.
Posted 7/23/2010 3:27 PM (GMT 0)
Hodaya, how are you doing? Hope you post soon with an update...

I went to see my doctor Wednesday. I have been upset ever since. He rushed in, had me lay on the table, checked my incisions and stoma and said all looked wonderfully. He then said he is going to schedule my defogram for a month or so. I told him my rectum still felt the same, like I couldn't push down.....he said, well, you don't have alot to work with. I told him I could not push the bloody mucous out....he said we will see when I have the defogram.

He then went on saying that anismus is a psychological problem. WHAT THE HELL? Needless to say, I was not expecting that from him.

I asked him about work, and he said, sure....you can go back to work Aug. 2. I told him I still have issues with too much output and the bus has no air and I am worried about getting dehydrated. He told me to take immodium if I have too much output and to drink lots of water and gatorade.

I told him also about the funny brake that I have on the bus, which is called a hydraulic brake, and that I have to push this brake to the floor over 250 times a day...he said, well, all of your wounds will be healed at 6 weeks and will be as strong as they are ever going to be and I will be fine and should be able to do anything, bending, stooping, lifting, twisting, etc.

The entire visit took less than 10 minutes. I feel like he didn't listen to me at all and was rushing me out of there. And this is so unlike him. He usually spends quality time with me at each visit. That is one of the reasons I chose this doctor.

But, I am also a wimp and should have demanded he listen to me and quit rushing me. I did pay the man over $400.00 that day too.

Other than that, I am doing well. I am getting more and more used to the stoma. I am still awed at how many hours I have in a day since I don't have to sit on the toilet half the day. I have been walking and feeling more energetic. I have been adding more foods to my diet, just remembering to chew thoroughly. I can eat foods without getting that horrible bloat, and the nausea has been drastically reduced, though not eliminated.

I am going to have to be cautious about how much I am eating though because I am starving for some reason. :)

I still have not smoked and today is 32 days with no cigarettes. I am still struggling with this though and fight the nicodemon daily. LOL

For some reason, I am also feeling depressed. I am not sure why because physically I am feeling so much better. I guess it is a combination of quitting smoking, having the surgery, going back to work and worrying about that, etc. I hope this depression goes away soon.

Jenise, good luck with your surgery tomorrow.

Snuggle, my temporary ileostomy is to allow the rectum time to rest with the hopes that the anismus will go away. But, I hate to tell you this, but I have yet to meet another person whose anismus went away and stayed away. I hope to be the 1st one though. LOL Depending on what the defogram says, my doctor may recommend biofeedback???? Not sure though...

J-Rex, I would wait until after your bm before taking the transit marker test. Good luck and welcome

Tracy
Posted 7/23/2010 4:10 PM (GMT 0)
Hi girls,

It's been so quiet around here. Hope that means everyone is doing well. Has anyone heard from Hodaya? And how about Lizzie?

Snuggle,

I had several attempts at biofeedback, both before and since my total colectomy last year. It really never helped me at all, and cost me about $130 a session out of pocket. I was told my insurance (BC/BS Federal) would pay for biofeedback is I was incontinent, but not not for pelvic floor issues..was ridiculous to me, but I paid over a thousand dollars and never had any success at all.

Still using miralax and occasionally prune juice, things not perfect but manageable..

Keeping my little granddaugher today; I spend alot of time on the toilet in the mornings; she's just starting to talk, and she says "nana". Pretty soon she'll be saying "nana pooping"....:)
Posted 7/23/2010 4:27 PM (GMT 0)
Tracy,
I must have been posting when you did...I started writing a couple hours ago and then left for awhile and came back....missed your post.

I can totally relate ti the way your feel about your doctor now. I had the same thing happen with mine after surgery when I was still having so much trouble getting the poop out; when I told him I didn't eat alot during the day because it caused pain in my rectum, he said I must have an eating disorder! I was so upset I didn't plan to go back, but I did and the next visit he was much nicer....I have no idea why your doctor would have said that about your anismus; that is just ridiculous. Nothing ticks me off more than these doctors blaming our problems on our "heads".

Even though he released you to go back to work in August, do you have to? Can you take a few more weeks? I didn't have the ileostomy bag, but I can tell you I wouldn't have wanted to go back that soon; I was still pooping pretty much all day at that point. What's it to him if you go back that soon or not? My doctor was really great about that.....I took 3 months and was glad that I did.

I hope you get through this depression. I'm sure the worry of working before you feel ready is making you feel depressed and worried. I felt the same way going back even after 3 months, because that was when I started having problems going again, and when I started getting that rectal pressure. Even now I find that the days I don't work I do much better.....I think it's the constant worry of of using the bathroom at work...I hate that, but I do it now, Sometimes I feel like I have to go, but if someone is in another stall I just wash my hands and leave.....I often am "noisy" and it's so embarrassing, At home I don't care:) Hope you feel better!

Jensie,

Good luck tomorrow! Will be thinking of you.

Janie
Posted 7/23/2010 5:46 PM (GMT 0)

Hi Cherrygoth and welcome to the forum.  Really hope your op goes well on Tuesday.

Leslie – My surgeon mentioned Biofeedback, but said that in his opinion it would only improve the Anismus and not sort out the main problem of Colonic Inertia, so we’ve shelved the idea for the moment.  It’s really good to read that your op was so successful. 

Snugglesaurus – sorry to hear that yesterday’s Biofeedback session was so painful.  Really hope the treatment works for you. 

J-Rex – I know how you feel about being desperate to know the answer.  I had my first Colon Motility test a couple of weeks ago, and it showed Colonic Inertia.  Just had a second one to confirm this and will find out the result, next Wednesday.  I didn’t have any BMs on either of the tests, so already knew that all the markers were still inside me.  I agree with the others that it’s probably best to wait till after your next BM and then reschedule. 

Jenise – all the best for your op. 

Tracy – sorry to hear that the doctor rushed your appointment.  Yet another Physician who immediately presumes something is psychological just because he doesn’t understand a condition.  mad Hope you soon feel better.

Had my Sitz Marker X-ray yesterday, but the technician wouldn’t give me the results.  I did overhear her saying  “I think she still has some markers remaining from the previous test”, so that kind of answers my question anyway. Consultant had to rearrange this week’s appointment to next Wednesday.  Frustrating, but at least he’ll have the test results.

Posted 7/23/2010 5:48 PM (GMT 0)
I'm fortunate that my insurance pays for it.  I know it took several weeks of squabbling between the surgeon and my insurance company.

tinkerbell - Manual stimulation mad   Apparently I was so UNRELAXED from the pain that she was "massaging" that my back and neck are so tense today. 

This is not sounding so good about biofeedback actually working.  I asked where I was in relation to the other people with constipation.  She said I'm one of the higher ones :(

Tracy - you're at Piedmont Colorectal right?  I wonder if they'd do the same for me.  If it doesn't look promising than I won't bother with the temporary pouch.  Does the only "solution" equate to having a pouch for life?

Posted 7/23/2010 6:43 PM (GMT 0)
cookie74, This is just something I found:
An example is functional constipation, which may have psychological or psychiatric causes. However, one type of apparently functional constipation, anismus, may have a neurological (physical) basis.



Leslie...Hope everyone is having a better day with digestive health..
Posted 7/23/2010 6:55 PM (GMT 0)
snugglesaurus
  Thanks, yes today is better than yesterday.  I have more energy and feeling pretty well.  I had went with my mother on Tues. to dinner for My Parents Anniversary, but my daddy passed in October , so I took his place to keep her company.

Anyways I ate like 6 bites of a rib eye stk, a few bites of salad, and a backed potato with nothing on it....OMG it made me nausiated for 2 days till it passed.  I never eat fatty stuff, and just thought I would try it again,,,,,,not....it makes my poo so mushy and I no longer have the ability to strain to push it out, so it took all day to finally get everything out, so by 6PM last night I was back in good shape...so for me I have to stick to things I know I can eat without any problems.  I have turkey or chicken every day for dinner, I am trying to eat some watermellon and cantelope but just a few bites gasses me up and I will burp it up all night long.  Vegetables, I dont like very many of them but I have to cook them otherwise they kill me off.

You know not having a recutm, only a inch of it...man you really feel what is difficult to pass like salad, kind of painful.  I think that its because my sm. intestine is my rectum/colon, and its so funny that I can feel where food is at all times in my intestines.  Does anyone else feel that with their total colecotmy?  Just curious?

Yes, getting that paracarditis was a shock and one I never hope to have happen again.

So take good care of yourself..

Leslie

Posted 7/23/2010 8:52 PM (GMT 0)
Thanks ladies.. surgery is on Monday!! LOL But I'll hold onto those well wishes till than!

Janie, I remember that happening with your doctor.. crazy!

Tracy, I can so understand how you feel about your visit with the surgeon! I don't understand some of these guys.. one minute a caring doctor , the next - an idiot! I can tell you.. I chose my colon surgeon mainly because he was recommended by my great uro-gyn, but I don't care how great a surgeon he is.. I felt he rush, never listen to me, did my surgery (messed my other surgery up) and 10 days in the hospital.. and I freaking saw him on the day of surgery and day 9.. when I was impacted!

cookie, I called the hospital and ASKED for a copy of all my reports.. they have to give them to you. I don't know why they always want to keep things a secret.

snugglesaurus, how many rounds of bio-feedback do they want to do, and than what is the plan?
Posted 7/23/2010 8:57 PM (GMT 0)
I just realized, I didn't tell you about my pre-op appointment yesterday. I didn't see my surgeon, but is PA instead. Apparently, the colo-rectal surgeon CUT the mesh by mistake!! (not on purpose as I first thought...) She said she never had a case where this procedure had to be redone, and asked if they can video tape it as it will be "amazing" if the surgeon is ABLE to find the ends.. which apparently is a lot harder to do than sounds! Otherwise, they basically will redo the whole thing.
Posted 7/24/2010 7:15 AM (GMT 0)

Hi Everyone!

 

Lizzie has a new surgery date- Cleveland was able to get her moved up to Thursday, August 12th. She seems to go in and out of ileus, so pray for that, her pain, and that she would be strengthened and encouraged as surgery approaches.

 

Cherry - Welcome! I had a total colectomy almost three years ago when I was 21. Mine was for colonic inertia, but if you have any questions, please don't hesitate to throw them out here...everyone on this forum is wonderful, and you will find a wealth of knowledge.

 

Snuggle - Ugh. I'm in the middle of biofeedback too. Not so fun. They even ordered topical Lidocaine for me because of the pain. The first day, my numbers were so high (and already had a total colectomy) that the PT changed out all of the equipment because surely, she though, a wire had to be broken. Nope! I'm the broken one. She hasn't been able to do any internal work with me because of how tight things are, and the pain that results from those spasms. I'm about a month and a half in, and as of now, this will continue through October...can't say I'm optimistic about it working, but it's what all the doctors want to try. How long are they going to keep you doing biofeedback?

 

Jenise - Prayers for Monday!!!

 

J-Rex - Welcome! And I feel your pain. I was 21 when I had my total colectomy. I'm almost three years post-op, and I can honestly say it was the best decision I have ever made. I have significant motility problems with my entire GI tract (stomach, small intestine, and rectum), so life is not perfect, but I can function, and my worst days now are better than my best days with a colon. I've had every motility study in the book done, so please feel free to ask anything! If you feel better waiting until after your BM to start the study, have it rescheduled. The most important thing is to be off any and all laxatives for several days to allow those to clear out of your system. This one Sitz study will not determine whether you have surgery. They will do several motility/transit studies to make sure the diagnosis is correct. One is the "scrambled egg test" where you swallow an isotope pill, then eat some eggs that have been injected with an isotope. You will be there all day, as they take scans at different time intervals. Then you come back for however many days after for more pictures.

 

Tracy - I am sorry about the unpleasant follow-up. Rest assured, it is NOT in your head. If anismus was in our heads, the biofeedback machine wouldn't freak out when they hooked us up to it. If he was uncharacteristically agitated and rushing, he may have just gotten an emergency page that required his presence in the OR. What have you been able to eat so far?

 

Happy weekend, love and prayers,

 

Allie

Posted 7/24/2010 11:05 AM (GMT 0)
Leslie - Yes, I've heard of Functional Constipation.  The consultant that I'm seeing on Wednesday is assessing me for any neurological or medication induced functional bowel disorders.  Unfortunately, the digestive system doesn't like both the epilepsy medications and pain killers that I need to take.  My surgeon is pretty sure I will need an op, but wants to rule them out before going ahead.  What annoys me with doctors is they are often too quick to say an illness is psychological instead of admitting that they don't know what is wrong.     Glad yesterday was better than the day before. Hope you continue to improve.    Jenise – hope you receive your medical notes soon, and good luck for Monday   Allie - sorry to hear that Biofeedback is causing so much pain.  Hope it soon starts to help.
Posted 7/24/2010 12:55 PM (GMT 0)
Welcome Cherry & J-Rex.  Cherry - Tuesday!  Jenise will have her surgery Monday, you will have yours on Tuesday and I will have mine on Wednesday.  Keep in touch if you possibly can.  The hospital I'll be in has patient wi fi, thank goodness.

Jenise - ACK!  Monday is almost here!  On the other hand, Monday's surgery is the first step to ensuring you a better quality of life.  Re: the colorectal sureon's error - Do you have any legal recourse?  Seems you are going through all this because of his mistake.  Hey, are you going to get a copy of your "movie"?

Tracy -  Your doctor is unbelievable!   If he won't give you an extension of your work disability is it possible for you to go to your gp to get a work excuse?   Congrats on being smoke free!  Hang in there!

Sarah - How did your doctor's appointment go? 

Yesterday I had my pre-op at the hospital.  More tests.  My prep is HalfLyetly.  I picked it up at the drug store the other day and noticed that there were no instruction as when to start the prep.  So yesterday I asked the RN who was doing the pre-op/interview.  She said to call the surgeon's office.  So I called the surgeon's office only to be told that I needed to call the pharmacy.  Unreal!  So, unless some of you think otherwise, I'll begin on Tuesday.  There are two Dulcolax tablets in the box so I'll take those first thing then start the prep a couple of hours later.

Also, no instructions on when to begin the clear liquid diet or even if I'm supposed to be on a clear liquid diet.  Common sense says no food on Tuesday but what about Monday? 

Evidently, I don't have to worry about the color of the prep since there is a cherry flavor packet with the HalfLytely.  Right?  I had planned to get some punch flavor Crystal Light to flavor the prep.  Wasn't it Shiney who said that the flavor packets were worthless?

Thanks!

Val

 

Posted 7/24/2010 2:53 PM (GMT 0)
Allie, I have been adding more and more foods to my diet. I have recently added chicken strips and french fries. I just make sure to chew and chew....all this chewing means it takes me forever to eat a meal. LOL

As far as anismus....I don't think I truly have anismus because I PASSED the EMG....the emg showed a normal, resting rectum when I pushed down to hava a bm. I did not have high numbers like you guys do. So, what is up with that? My doctor is the one that said the defogram showed anismus, not even the radiologist that read my defogram said anismus. My defogram said severe intussusecption and a moderate rectocele, nothing about anismus. My defogram 2 years ago said MAY show some degree of anismus????

I have been feeling devastated about my doctors appointment and finally yesterday, broke down and cried for hours. I think the stress of the surgery, having a stoma, wearing a bag, quitting smoking, going back to work, etc. just has me depressed. I wasn't expecting this because I feel so much better physically.

I mean, I can eat and drink with no pain and bloat. I can sleep at night without having to sit up. I have only had to take 4 rolaids since I have been home from the hospital and I used to eat a bottle of rolaids per week. My energy is coming back and I feel like starting to exercise, walking on the treadmill mainly.

I don't know what is wrong with me? How come I feel so rotten mentally if I feel so much better physically?

Good luck with everybody's surgeries....Tracy
Posted 7/24/2010 4:21 PM (GMT 0)
cookie74
  Be strong and keep the faith.  I feel great again today so I think I am on the right tract.

Jenise...all my thoughts and prayers are with you on monday...

Love to all and have a great weekend...

Leslie

Posted 7/24/2010 9:37 PM (GMT 0)
Jenise - They've "given" me six rounds of biofeedback. I have 2 down so far. Results shouldn't be visible until 4 sessions they say.

Allie - Through October? Wow. I'm surprised they chose for it to go on so long without knowing the results within 4-6 weeks. I know if my rectum starts to show improvement they can request that I continue through my insurance company - up to 3 months.

I'm sorry you're in pain, too. Near the end of the manual stimulation she said she didn't want to tell me but she was losing feeling in her finger from so much pressure. We went to electrical stimulation and I was in a lot of pain at just 1. I got used to it though.

Tracy - can't believe you're eating chicken fingers and fries! Way to go girl! How are things going rounding up your supplies for the bus?

Sorry to hear you're having a rough time mentally.


The plan after biofeedback for me? Follow up with my surgeon here locally and at the Cleveland Clinic. Both have said "try biofeedback first" without saying what would come next. More people around me have a harder time with that than I do. Unfortunately I have become accustomed to the doctors not knowing the answer.

Anyone know of any gastrointestinal foundations that do 5k's? I went to a brain cancer 5k this morning for a friend and I was getting a little teary during the awards about all the survivors.

Enjoy your weekend everyone!
Posted 7/25/2010 1:30 AM (GMT 0)
Hi Allie,

I feel miserable. Have been to the immune-therapy. And I developed a severe side effect: a horrible headache which I was told is as intense as with meningitis. I also vomited, even the pills I tried to take against the pain.
It was unbearbale, my mom had to call the ambulance; I was droven to the hospital where I got iv pain meds and meds that decreased the fever. I had to stay overnight, it was the same unit I was as an in-patient several yeras ago where they accused me of having anorexia.
The severe headache has passed, but I am still very nauseated and have some headache.
I am so fed up with all this stuff and the immune therapy. They increased my dose as I did not show any improvement. They begin to argument with psychological stuff....I would reject the immune tehrapy so it CANT work, I would not have enough trust in them which would be necessary for a successful therapy etc

I will write more abou my GI appointment etc when I am a little bit better.
Posted 7/25/2010 1:53 AM (GMT 0)
Sorry to hear you aren't doing well peltz :(

What's the immune therapy like?
Posted 7/25/2010 3:10 AM (GMT 0)
Tracy ,   Give yourself a break, and cry.  You have been through a lot and it takes a toll on you emotionally and physically....believe me I know..  But the chicken fingers my god, I cant eat anything deep fried..so koodos to you...just becareful..

Leslie

Posted 7/25/2010 11:28 AM (GMT 0)
Tracy, Sarah and Leslie - I'm so sorry you are going through these hard times and am praying for you.

Isaiah 40:31
Posted 7/25/2010 12:07 PM (GMT 0)
Tracy, (hugs) I think the surgery is just taking a toll, I don't think it is uncommon to feel depressed some, and the visit with the doctor, just broke the camel's back. Give yourself a good cry, and know that sunshine is just around the corner. As far as having or not having this or that, it's all confusing, even doctors (most) will tell you they don't have a full understanding on pelvic floor issues.. or how to fully fix them!

Hodaya, I'm worried about you.. you haven't checked in, are you okay?

Sarah, (hugs for you too!) Sounds like your miserable. I hope your headache is better and you start to feel better soon.

snugglesaurus, the bio feedback MUST work for some, and even though the results here are not that great.. maybe you'll be one of the lucky ones! I hope so..

Leslie, great news that you're feeling great! Hope it continues!

Val, I should ask for royalties shouldn't I!? LOL I'm sure there isn't a legal course for me to take, it was an accident and unlike Rosemary, it isn't going to cause me a permanent issue. thankfully! Today, the day before surgery, I'm on clear liquids, and nothing after midnight. I have to start my bowel prep at 3 this afternoon, and the past other 5 I did, was exactly the same. Yesterday, I was on a full liquid diet.. I had milkshakes and pudding (hope the pudding was okay!) Getting really nervous.. I don't do well with anesthesia, but this hospital seems to help me by using the patch behind my ear and Zofran. Also my bowels and bladder always go asleep.. for days. Best wishes to you on Wednesday!

Cherry, welcome here and best wishes on Tuesday!
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