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Total Colectomy Part 38

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Posted 10/17/2010 3:47 PM (GMT 0)
Hi Everyone, 

 

Thanks for all of your suggestions; whether you agree or disagree with my feelings re: my doctor's attitude and the things he said to me, that's o.k..  When I come to this board I am just looking for honest opinions so I don't get offended!  I really want to start to try and use more of my time on this board helping others.  Right now, though, I am still looking for answers because I need to make a decision, and soon!

 

I want to ask a few more questions for those of you with SubTotal Colectomies or with Ileostomies:

 

1. Do you have to get up several times/night to use the bathroom (I had to get up 4 times last night . . . no idea why, I never eat much but you would have thought I had!  I have to often stay in bed for 9 or 10 hours to get enough sleep since it gets interrupted so frequently.

 

2. I guess I am wondering if those of you with ostomies have to get up during the night to empty and how often that happens.

 

 

3. I know I shouldn't be so self-conscious about people being able to see a large bulge on my side if the bag does fill up and I am not near a bathroom; but I am worried about that!  When it would happen to this guy I knew, people would just stare . . . no one really knew he had a bag so it looked really weird to all of us. 

 

4. I recently read about a guy who has to get up 8 times/night to change his bag; that can't be the norm or any where near it, can it?

 

Also, do those of you with ostomies really have energy?  When you get up in the morning do you feel like you can go places or get things done?  I feel very tired almost all of the time. 

 

Thanks,

Gilda

Posted 10/17/2010 4:48 PM (GMT 0)
Gilda, i don't think we can compare with you and me, cuz my system is way too slow and yours is the opposite. i had constipation within 2 mons post the colectomy and had to make my self go, you don't, so with the ostomy i assume you'll also have much more output than me, so my experience can't help you. but i will answer anyway.

i don't have to get up at night at all, i have maybe 100-200 ml over the whole night and it's very thick too. only sometimes if i eat foods that give me gas, then i'll have to get up once (tops) to release the air. but that rarely happens, i usually sleep through the whole night.

i don't get to the point it's too noticable. i have a rutine: i wake up in the morning and have about 100-200 very thick stools + lots of air. then i drink water, tomato juice + olive oil, pear juice, a yogurt with a cracker or two, then 2 more glasses of water. during the next 2 hrs i'll have about 400-500 ml. i empty after the first hr (about 300-400), then i go to work and empty the rest there. then i have nothing coming out till i eat lunch. after lunch it takes about an hr for me to have about 100-200, so i empty it. after another 1-2 hrs i'd have about 100 more, then i empty again. then i have nothing till i get home and have my dinner (so no more emptying for me at work). for me it gets noticable if it's over 300 ml, but i don't let it fill that much at one time.

but again, you and i are different with our transit time and we can't really compare. i guess you'll have to empty the bag much more than i do.

i feel very weak most of the time, like my energy has been sucked out of me and it doesn't matter how much i sleep. but again, this weakness started way before the colectomy and i think it is related to my lungs.
Posted 10/17/2010 5:31 PM (GMT 0)
Gilda,

I just typed you a really long reply that got wiped out.  Ship's system went down.

1.  Eat big meal at noon then you're not up that much at night.

2.  I empty 1 or 2 or 3 times per night.

3.  Nobody cares if they see a bulge.  Trust me on this,  I spent half my life worrying about what others "thought".  People are really only tuned in on their own issues.  Does not mean WE don't care, but as a general rule of thumb, everyone is into themselves.  My bag just bulged at a dance on the Queen Mary.  Nobody noticed, nobody cared.

4.  Bag unrolls with velcro, let poop out, clean end and re-velcro.  Takes 5 minutes to empty.  The change is just done every 4 days.

I'm not a bundle of energy, but it's from not having the use of my healthy but damaged colon.  You already don't have your colon so you would not notice a systemic difference.   This is my ninth cruise is 3 years.  You can do this.

Good luck, Rosemary

Posted 10/17/2010 7:15 PM (GMT 0)
Thanks Hodaya and Rosemary! If you get tired of my questions you can tell me but you are really helping me to make my decision. I know I have to keep getting more and more specific, though, in my questions; I hope you don't mind. When i say i have no energy, i mean i feel i have to lie down usually at least 16 hours out of every 24! Because my husband had to become the sole "bread winner" for our family a couple of yrs ago, I really want to do the basics at home (grocery shopping, the dishes, laundry, etc.). As hard as I try though, there are many days when I just can't get up and even load the dishwasher! I think someone could offer me a million dollars to do so and it still might be impossible! Do you find yourself leaving dirty dishes on your counters for days or not even walking to your mailbox for days because of weakness? My doctors have no idea why I am so weak; neither do I. My husband often seems to be pulling away from me more and more; of course this really scares me! Only when I ask him does he say he is "still here for me." I can tell that he gave up a few yrs ago; as far as me ever being healthy again! He seems really "freaked out" about me getting a bag but he says it is mostly because he is afraid that it will just be one more surgery that doesn't work for me! He is afraid that I may be worse off than ever. I think he is also concerned about "having sex" with a person who has an ostomy. Don't get me wrong; overall he is a very nice guy. He just seems scared and he never discusses his fears with anyone. Anyways, please respond again as to the "weakness" issue. I think both of you must have more energy than I do or you wouldn't be able to work or go on cruises! I really need to get a job (we may have to give up our house otherwise) but I am lucky if I can get dressed and do 1 errand a day!

Thanks,
Gilda
Posted 10/17/2010 7:39 PM (GMT 0)
my gosh Gilda, and i thought i was weak.. no, i'm not THAT weak. you should apply for disability and fast, i have no doubt if you explain your condition, you will get some help. just today i had my meating with the social security drs and i'll get their answer within a month whether it's approved or not. even if not, i can appeal and most likely i will get it.

i'm sure that if you explain about the surgery you had and how you go to the b/r so many times a day and feel so weak, they will acknowledge you have a real dificulty to function. at least you'll get some financial help.

i'm so sorry things are so rough for you. non of us can know whether you'll feel better and stronger with an ileostomy, i mean i don't know how by having the stools going into a bag instead of the natural way will make you any stronger.. what's the difference energy wise..? i wish i had a good answer for you, but i don't.

but i do know that depression can cause major weakness and i think it would be worth it to try to address that and go for counsling. i'm depressed and i go to the social worker once a week for talks, i feel it helps me. i really think you should also try it. you've been through a lot with being sick then surgery and the not simple results of it. it's not easy and you need some help getting back on your feet again, honey. hope you feel good. (((HUGS)))
Posted 10/17/2010 8:17 PM (GMT 0)

Gilda,

Sounds like you coul have pernicious anemia.  Get a vit. B12 blood test and an MMA blood test.  (If MMA methylmalonic acid is very high and B12 is low normal then you have pernicious anemia and will need a B12 shot every month for the rest of your life.)  If this goes undetected you will sustain irreparable neurological damage.  You sound JUST LIKE ME before I started getting the B12 shots.

Also get a full blood test work up CBC, Electrolyte panel, anthing else your doc can think of.  Then get a mono spot.  I doubt you have mono but why let anything go undetected.

The other thing is that clinical depression can literally make you feel like you can't move.  It's how I am at home, hence I go on a cruise often.  Sometimes at home I can hardly get out of bed in the a.m.  I have to sleep 8-10 hours on cruises too, but at least I can get up and later in the day even dance and walk the deck at great speed.

There is a thing called sun-downers syndrome, but that is usually sadness at night.

I'm not married so sex is not an issue, plus I have other pelvic injuries not just the bag.  But another person on here I speak with on the phone got a bag and she can still have sex.  So not an issue.

Right now, though, you need to deal with making the best decision you can for your health, sex comes in second, just my take, but that's just my thought.

Keep the questions coming and we will all do our best to help you.  NOthing you ask is viewed as weird, in fact, you seem to be getting yourself more organized in the specifics that you need answered. So this is good.

I have one more day on this ship before the land part of my trip so I will check in tomorrow, Monday.  Then it will be about 2 weeks before I can check in again as in 2 weeks I should be on my next ship.

Regards, Rosemary

Posted 10/17/2010 9:54 PM (GMT 0)
Hodaya & Rosemary, You two are wonderful! It is sad that all of us seem to spend so much time on this site, though; we should be living our lives! Actually I am so thankful that even though you are able to work or go on cruizes, you still give your time and advice to others. I know you have your bad days also! Rosemary, I know my doctor has had a CBC done and most other tests. What I am not sure about is the B12 and the MMA test. I was taking liquid B-12 and even had a B-12 shot. The B-12 shot actually made me feel really restless and I couldn't sleep all night! In San Diego one can just go to the Health Food Store, pay $20.00 and get a vit. B-12 shot. Oh, I just remembered something . . . when my doctor recently ordered about every type of blood test there is, she said my B-12 level was actually a little higher than normal. What I don't know about is the MMA test?! Do you think I should ask her about this? The other vitamin level they have found to be very low is my vit. D level; I take Calcium with D3 whenever I can "stomach it." Some days I feel I cannot take in anything more then just water and maybe 1 or 2 bottles of Ensure.
Hodaya, I can't get disability since teachers in California do not pay into the social security system and that is where disability originates. I do get a very small teacher's pension though. If I hadn't gone part-time off and on for the last 10 yrs of my teaching career I would now get a much bigger teacher's pension. Oh well, if my husband can just "hang in there" and keep working for a few more years, we will survive. We won't do great and we can't do all that much to help our college-aged son, but at least we will survive.

I thought of something else. Part of the reason I rarely go out is because I don't like to use other people's bathrooms. Do you find it embarassing or worrisome to have to "empty a bag" in someone else's bathroom? This may seem like a strange question but I think you know what I am talking about. I am glad we can ask each other about pretty much anything on this board!

Hope to hear from you once more before you leave, Rosemary! Have a great time on your cruise. Hodaya, I hope you come to San Diego for a visit one day; I know you have relatives here and I would love to meet you! Of course I would love to meet many of the people from this website . . . I think we really understand each other!

Gilda
Posted 10/18/2010 2:45 PM (GMT 0)

Hi Gilda,

Yes, get the MMA blood test. If it is not high then you don't have to worry about getting any more B12 shots seeing as your B12 is high anyway.  Very likely your MMA will be fine but check to be sure.

I thought of another thing that may be giving you the lethargy.  You mentioned once a bunch of narcotics you were on not for pain killing purposes but to slow down your small intestine.  These have a very "downing" effect.  They are in essence central nervous system depressants.  If you can wean off these the lethargy may go.

I think, as someone else mentioned, you likely have some sort of pelvic floor problem.  In the research I've done, MOST women who have given birth or have had prior hysterectomies do get some sort of pelvic floor issue regardless of what it's called or what testing shows.  Muscles are no longer what they need to be and nerves have been inevitably stretched.  I think you would do fine with an ileostomy.

Regarding emptying the bag, I am not laughing at your question, I just wish you could have seen me on the world cruise.  I was actually emptying the thing behind bushes in Vietnam, behind a pyramid in Egypt in a "squat toilet" outhouse, and various other interesting places. I can unroll that baby anywhere, any time any place.  Regarding using others' bathrooms, do it!  Then flush just like everyone else.  MOST of the time small bowel effluent (poop) does not even smell because it hasn't entered the colon where the bacteria is.  So we even do "smell-less" poop.  Let this be the LAST of your worries.  Getting your life back to the best degree possible and getting you out of the house and on with your life is your goal.

Might be 2 weeks before I get to check email again on the next ship, but if I get to check in sooner I will.  These are just some thoughts I had for you.  I myself took Valium at night for a long time to help with the trauma I went through.;  I ended up finding that after awhile it made me worse, more depressed, and took my hunger totally away.  Maybe the meds you are on are taking your hunger away.  I can relate to you sooooooooo much from a world away.

All my best, Rosemary

Posted 10/18/2010 5:34 PM (GMT 0)
Thank you so much Rosemary! You have really given me a lot of great info. to think about. I am going to try and get my PCP to do the MMA blood tests and that may be the last test done before the ileostomy! There is a Gastro that I went to about 1 yr ago that wanted to perform 3 tests: decofocraphy, small bowel manometry and I am not sure of the 3rd. It just seems all so "after the fact for me." All of these tests should have been done prior to me ever having the SubTotal so I don't think they are of any use now. I just want to do something and soon! I feel that i am "slipping away" each and every day (both mentally & physically). It takes time to get these types of tests scheduled and more time to get a follow-up apptmt with the "motility specialist." If my surgeon will still do the ileostomy I want to schedule it for some time in November. I know he was pretty "short" with me last week but he is usually a nice guy and is supposedly an excellent surgeon (he is the head of surgery at Scripps and he trained under Dr. Fasio at cleveland clinic). The only thing that really confused me was that he said he only does "loop ileostomies" so they can be reversed at a later date. When I asked him why I would choose to have it reversed; wouldn't i just be back in the same situation I am now in . . . . he looked at me like I was really stupid. I am going to have to ask him again for clarification. Why are doctors so opposed to doing "end ileostomies?"
Rosemary, have a wonderful time on your trip. You are really an inspiration! Please put together a photo album and put it on SmugMug or FaceBook so we can all see it! Looking forward to hearing about your trip!

Gilda
Posted 10/18/2010 5:34 PM (GMT 0)
Thank you so much Rosemary! You have really given me a lot of great info. to think about. I am going to try and get my PCP to do the MMA blood tests and that may be the last test done before the ileostomy! There is a Gastro that I went to about 1 yr ago that wanted to perform 3 tests: decofocraphy, small bowel manometry and I am not sure of the 3rd. It just seems all so "after the fact for me." All of these tests should have been done prior to me ever having the SubTotal so I don't think they are of any use now. I just want to do something and soon! I feel that i am "slipping away" each and every day (both mentally & physically). It takes time to get these types of tests scheduled and more time to get a follow-up apptmt with the "motility specialist." If my surgeon will still do the ileostomy I want to schedule it for some time in November. I know he was pretty "short" with me last week but he is usually a nice guy and is supposedly an excellent surgeon (he is the head of surgery at Scripps and he trained under Dr. Fasio at cleveland clinic). The only thing that really confused me was that he said he only does "loop ileostomies" so they can be reversed at a later date. When I asked him why I would choose to have it reversed; wouldn't i just be back in the same situation I am now in . . . . he looked at me like I was really stupid. I am going to have to ask him again for clarification. Why are doctors so opposed to doing "end ileostomies?"
Rosemary, have a wonderful time on your trip. You are really an inspiration! Please put together a photo album and put it on SmugMug or FaceBook so we can all see it! Looking forward to hearing about your trip!

Gilda
Posted 10/18/2010 8:12 PM (GMT 0)
Gilda, at least that teachers pension is better than nothing. i also have a veeeery low vit D.. what does it mean? does anyone know??? i don't do anything about it, i hate having to take any kind of pills regulary :/

i don't have any problems emptying my bag in someone else's b/r, just the opposite, it's much easier with a bag than the regular way lol.. oh Gilda, i'm so fascinated to meet all of you, i think it will be thrilling. i don't see my self coming to San Diego any time soon, but i hope it happens sometime and if it does, you'll def know about it :)))) hope today finds you well. hugs your way!

Rosemary, wow your outdoors emptying experiences are amazing lol!!!!! i hope i also get to doing that soon LOL!!!!! isn't it much easier with an ostomy?????? :D

Gilda, Rosemary is right, the stools of only the small intestine is much less smelly.

about doing an end ileostomy, if it's not neccessary for your life, i mean if you don't have a life threatning desease that require an end ileostomy, then they will do only loop, just in case you really hate the ostomy and decide to go back. it's much more complicated to reverse an end ileostomy and it's a major surgery. with the loop they just close the stoma. makes a lot of sense.
Posted 10/18/2010 8:46 PM (GMT 0)

Gilda,

I would skip all those tests except the defecogram.  Like you say the others are a day late and a dollar short.  SHOULD have been done prior to any surgery as many should have been done on me prior to any surgery.  You already know you have fast small bowel motility.

The defecogram will prove if you will ever be able to defecate rectally effectively.  Do this it's easy and fast to schedule.

Docs often view end ileostomies as "failure" meaning "no chance for reversal".  BUT actually they can be reversed but there may be more issues with the joining anastomosis scarring and narrowing or the joining coming apart and bleeding and peritonitis. THat is why they prefer the loop as only a small flap is lifted off the curve of the small bowel that is brought out.  Like folding a garden hose and lifting off an outside flap.  So much easier to reverse if need be.

BUT loops are more apt to prolapse, they are harder to get a good seal around, and poop can slip through the back loop ending up in the rectum and that you do not want if your rectum has an issue.

So reestablish rapport with your doc, get that defecogram, and revisit him with your questions re the end v.s. loop ileo.  He also is trying to understandably make it so that if you were not satisfield with the ileo that he could easily reverse you and put you back together,  So the guy's intent is honorable.  Maybe he was just having an OFF day.  I wish you well, my friend, and will try to check in in a few weeks if not from Paris or Rome.  You are on the right track to take some action.  Rosemary

Posted 10/18/2010 10:00 PM (GMT 0)
Thanks so much Rosemary and have a great trip!

Gilda
Posted 10/19/2010 12:22 AM (GMT 0)
Gilda, I have a loop ileostomy and now have a parastomal hernia, which my doctor told me is more common with loops than ends....so, something to think about.

I think they do loops with all people like us with no bowel disease????

I wish I would have had the total colectomy and had my rectum and anus removed as well...life with my stoma is so much more manageable now. But, I don't think my doctor would have done anything permanent even if I would have asked.

Rosemary, hope you are having fun.

Tracy
Posted 10/19/2010 10:39 PM (GMT 0)

Busy place around here! I am so sorry to read of everyone's struggles...I would love to reply to everyone, but I know that post would go on for days.

 

Sarah, many prayers, and thank you for posting the interview with God. I have seen that video before, and it is such a wonderful reminder that God will never leave us or forsake us (Deuteronomy 31:6, 8). What man intended for evil, God meant for good (Genesis 50:20) :) There is a purpose and a plan for every single one of us, no matter how long and hard the struggle is. Keep fighting! And that goes for all of you! Sarah, remind me again- do you cycle TPN at night? Or are you getting all your calories by mouth?

 

Hodaya, I also had horribly low vitamin D levels. I'd have to dig out the report again to see what my exact level was, but my doctor said that the only person he had ever seen with a lower vitamin D level than me was a patient who was bedridden in the hospital for years. They put me on a heavy supplementation regimen, and my levels are now perfect, but I don't feel any different.

 

I had such a wonderful time with Lizzie this past week. Lots of resting, watching movies, touring the Fort Worth (aka: Cowtown) side of the Dallas/Fort Worth metroplex...truly blessed times. She even left here with a real pair of Texas boots! I kept praying for a freak snow storm or something so I wouldn't have to take her to the airport this morning- no such luck :( but she is home safe and sound. Quite a sad afternoon around here...even the dogs are acting a little confused, like, "Where's Aunt Lizzie?" Please pray tons and tons for her upcoming surgery where Dr. Stocchi will move her stoma to the left side. She deserves all the best in the world. Pray that this surgery would give her a perfect result so that no more surgery is needed...EVER!

 

Things are up in the air with me. I did talk with Mayo last week and Dr. Camilleri's first available appointment isn't until January. I left a message with his nurse saying that I am in a lot of pain and cannot wait that long to see him, and she said that I won't even be able to see him in January because he wants me to do Mayo's two week intensive biofeedback program. Because of that, I wouldn't get to see him until mid-to-late February, which is obviously not an option. They want me to do their intensive biofeedback program in Rochester, MN even though I have already done months of biofeedback at a very well respected medical center in Dallas with one of the four pelvic floor physicians in the country. I cannot wait, and I cannot undergo more biofeedback because it is so painful and it only makes my symptoms worse. I am seeing my surgeon tomorrow morning at 10:00 AM. Please pray that appointment goes well. My surgeon thinks biofeedback is a waste of time (thankfully), and he has really listened to me in the past. My mom will be at the appointment as well, and as you all know, my parents are pretty set against me having an ileostomy. However, I have been making progress with them lately and I think they are finally starting to grasp how miserable I am. I just need them to get on board with what is best for me, not what they are most comfortable with.

 

Much love and many prayers to you all. I know I didn't mention everyone by name, but know that you are always in my prayers! Have a wonderful evening!

 

Allie

Posted 10/19/2010 11:05 PM (GMT 0)
I have low vitamin d also...I am taking a prescription vitamin d capsule once a week for 8 weeks, then an OTC after I am finished with that. I also am taking vitamin b12 injections weekly to help with the low vitamin b12.

I wonder why we all have low vitamin d????
Posted 10/19/2010 11:54 PM (GMT 0)

From what my doctors have said, the majority of the population has low vitamin D. This is due to the shift from a culture of farming and being outside all the time to working desk jobs and being inside most of the time. Vitamin D3 is synthesized when the skin is exposed to UVB light. Low vitamin D is not unique to people who have had their colons removed.

 

Allie

Posted 10/20/2010 1:16 PM (GMT 0)
I am very down right now, can't understand the sense and the reason for being mistreated over and over...where is justice? where is the interest in helping patients?

I seemed to have found a very compassionate, honest and knowledgeable neuro-urologist - I had told you about my appointment with him. Finally, he phoned me and I tried to answer my questions. It was obviously hard for him but he was very honest and compassionate and I realize that the while thing hit him very hard, too.

He had to inform me that his chief doc does not allow him to do surgery. Personally, he does not agree with his chief and he would take the risks and the huge responsibility when operating on me. He says that he does believe I am suffering and that there is no other option left than surgery.

However, due to the strict hierarchy he is not free in his decision and his opinion – it does not matter what he thinks when the chief doesn’t want to allow surgery. The chief doc even does not have to explain himself and the reasons for his denial, even if the neuro-urologist is the “second” man in hierarchy, the chief doc of neuro-urology.

Of course, the chief doc does not know anything about CIP and concomitant bladder dysmotility and he doubts the existence of it (although all tests I underwent show that there is no other obvious reason than an intrinsic neuropathy and/or myopathy).

First of all, he just said that he does not want to support cystectomy since I had a non-malignant disease and I was 24 years. My neuro-urologist was very honest and let me know that the actual reason for his denial is that his chief suspects Munchausen-Syndrome – just because I have no caring urologist and this would be suggestive. (Obviously it does not mind that I could not find an urologist who was willing to take care about me).
He had done surgery on young womans with neurological bladder issues before and his chief doc never denied surgery just because they did not have cancer but a functional problem. However, THEY were apparenty excepted from the suspicion of a psychologial condition probably because they were bound to weel chair suffering from a "visible", a recognized and a known condition. Please, read the discription of Munchausen. It is the most offending and terrible misdiagnosis out of the numerous psychological diagnoses I received.
http://en.wikipedia.org/wiki/M%C3%BCnchausen_syndrome

The chief doc got into touch with a doc I had not seen for a long time since he was unable to help me and even worse he did not believe that I have severe bladder issues associated with my CIP. He was very unpleasant and mistreated me; I also found out by chance that he was known to be very aggressive and furious when someone did not agree with him. However, he was a former colleague of the chief doc and he was very familiar with him which I did not know before.

But that’s the system of hierarchy and network here. There are only a few chief docs here in Germany who all know well each other. And if you fall into disgrace by one of them for personal reasons then you don’t have a single chance to get treated properly by the others.

Most notably they are the docs who act according to the rule: If anything mustn’t be exist/ be possible or what they don’t know, that simply cannot exist. And being possible or not is determined by the docs.

Can you believe it? I HAVE a diagnosis of CIP and it does not matter due to the ignorance and inhumanity of the chief docs here who just care about their reputation. I have been battling this fight for so long and I hoped that there will be an end to this useless and exhausting battle particularly since I had so many false misdiagnoses in the past. They all were proven t o be false due to the diagnosis of Prof. Stanghellini and also due to your work. But obviously that isn’t a reason not to repeat the same mistake over and over. I am so grateful I had the opportunity to come to Bologna and to make the experience to be taken seriously for the first time in my life.

My neuro-urologist proposed that we could try to let some bladder tissue samples analyzed by someone who is familiar with CIP and could compare the possible findings with the findings from the bowel tissue analysis. May be this would confirm my bladder disease when similar histopathological features could be found.
But even if something was found I don't think that this will make the chief doc to change his opinion. A cheif doc does not change his opinion since he would have to admit that he was wrong before.
Posted 10/20/2010 1:22 PM (GMT 0)
Munchausen Syndrome Overview

Munchausen syndrome is a condition in which a person intentionally fakes, simulates, worsens, or self-induces an injury or illness for the main purpose of being treated like a medical patient. Munchausen syndrome is named after a German military man, Baron von Munchausen, who traveled around telling fantastic tales about his imaginary exploits. In 1951, Richard Asher applied the term to people traveling from hospital to hospital, fabricating various illnesses.

The term Munchausen syndrome is often used interchangeably with factitious disorder. Factitious disorder refers to any illness that is intentionally produced for the main purpose of assuming the sick role, although that purpose is unknown to the "sick" person. Munchausen syndrome most appropriately describes persons who have a chronic variant of a factitious disorder with mostly physical signs and symptoms, although there are reports in literature regarding psychological Munchausen syndrome, meaning that the simulated symptoms are psychiatric in nature.

Persons with Munchausen syndrome intentionally cause signs and symptoms of an illness or injury by inflicting medical harm to their body, often to the point of having to be hospitalized. These persons are sometimes eager to undergo invasive medical interventions. They are also known to move from doctor to doctor, hospital to hospital, or town to town to find a new audience once they have exhausted the workup and treatment options available in a given medical setting. Persons with Munchausen syndrome may also make false claims about their accomplishments, credentials, relations to famous persons, etc.

A related condition, called Munchausen by proxy syndrome, refers to a caregiver who fakes symptoms by causing injury to someone else, often a child, and then wants to be with that person in a hospital or similar medical setting.

Individuals with Munchausen syndrome intentionally produce or exaggerate symptoms. They may lie about or fake symptoms, self-induce injury to cause symptoms, or alter the results of tests by contaminating samples such as a urine sample. Signs and symptoms of Munchausen syndrome may include the following:


* Dramatic medical history of serious illness, often with inconsistent details of the problem

* Symptoms that fit a diagnosis too perfectly or lack of signs that go with symptoms (for example, no sign of dehydration yet the person complains of diarrhea and vomiting)

* Symptoms that change or worsen once a treatment is begun

* History of seeking care at numerous other doctors, offices, or hospitals

* Eagerness to undergo exams, tests, and procedures

* Reluctance to let health care providers contact previous health care providers or family and friends

* Evidence of multiple surgical scars
Posted 10/20/2010 4:01 PM (GMT 0)

Gilda said...
Hi Everyone, 

 Gilda dont know much about your situ ...but wanted to put in my two pence worth...i take it you are trying to make a decsion about having an ileostomy? I had one and now i am reversed but would like to help you also:

1.   When i had the ileo i got up once per night (if i was greedy at tea time mostly) to empty.

2.  I didnt get up if i ate a lighter main meal of an evening.

 

3.  Ha!! yes i know about the bulge - its ok - just go and empty it when you feel it getting bulgy - that is what i would do when eating out etc... that guy obviously didnt mind he had the bulge! tongue

4.  Like the others say - you dont change it THAT often!  shocked

5.  I have not had energy for years since having bowel issues - BUT i felt soooo much better with the ileo than previously and got my life back with no more life revolving round bowel motions.  Yes like Leslie and Hodaya say could be other issues.

6.  Well... i found my ileo output very smelly unlike others' comments - i had to take a special spray with me everywhere (or body spray if i ran out) and spray like mad - but it is a small price to pay for feeling well... turn

I agree with everyone on here.....and who cares about the sex! Ha that was the last thing on my mind - your husband needs to support you ... and i know how difficult it can make marriage as my husband jsut used to switch off cause he didnt know what to do.  Anyhow you cant see the bag unless you show it! Just keep it covered with your nightie!

Vitamin D deficiences!! I think you all need to go in the sun!   rolleyes  

   

I have no idea if i am deficient in vitamins. 

Posted 10/20/2010 5:09 PM (GMT 0)
Karen, you are funny.

The smell with my ileostomy output smells very little, but I use m9 drops in my bag every night as the smell is worse at night??? I have no idea why. LOL

And the sex with my husband is outstanding since I got my ileostomy. I don't feel bloated and nauseas all of the time, so sex is always a "GO" now. My husband does not mind the bag one bit and seems to desire me just as much as before the ileostomy. I have worn a wrap around my abdomen to hide the bag and have also just worn the bag hanging out and he doesn't seem to mind either way. I also can enjoy sex in many of the same positions as before, me being on top also...my stoma seems just fine with that.
Posted 10/21/2010 9:47 AM (GMT 0)
Answers4me - Hey sounds good - glad someone is enjoying themselves! Never been into it much for the past several years...but thats another story ....and .....i have been married for 28 years..... ho hum. x
Posted 10/21/2010 10:26 AM (GMT 0)
Peltz, (HUGS) I too would be VERY offended in the suggestion that I had Munchausen Syndrome! I can only imagine your total frustration and heartache having to find a doctor to help you!! Where do you go from here? I hope they will look at this fully and seriously for you.

Low vit D.. noticed on my medical records, my Vit D was just below the normal range!

Rosemary, hope you're having fun, fun, fun!!

Tracy, sound like you and DH are having a great time!! Good for you (and him) !! I'm afraid I'm more like Karen, I could do without it and it wouldn't bother me a bit!

Off this AM for my pre-op appointment, surgery on 11/2.. and now I have yet another issue, so I'm not sure if they will just fix or postpone to test. My bladder is leaking!! Ugh! I had some issue back when I first had my pelvic surgery, they put a bladder sling in, and I had a catheter in for 3 weeks.. because I couldn't void! 3 weeks after surgery, I had to go back and have the sling "released" (cut on one side to make it looser) it worked, and all was well.. no leaking at all. Now after this past surgery in July.. it started and each week it is more and more often.. and it is the worst than it has ever been. Every sneeze, cough, strain, pee leaks! So.. I'll see what they say.

Hello everyone else, gotta run and get ready!
Posted 10/21/2010 11:37 PM (GMT 0)
long day with pre-op... and will be having multiple pelvic floor corrections in hopes of it helping me have a BM. Dr. feels the defect in the perineum area, rectum herniating in area, causing obstructive evacuation. PLUS, they have to remove the bladder sling previously put in, and put a new one in, leaking bad, and retaining some urine.. going to have a very, very sore bottom for a while. He said I will feel extremely tight and uncomfortable for some time.. ouch. I'll be in the hospital 1-3 nights, if all goes well and home with a catheter. For now, I'm excited and ready to leave on my cruise this Sunday!! Going to enjoy and not worry about my upcoming surgery(s).
Posted 10/22/2010 7:30 PM (GMT 0)
Peltz,

Re just a very quick check in from Paris.  That Munchausen's crap is just to get the onus off the docs and onto the patients if the docs don't know what to do for the patient.  In my case the life threatening internal injuries in 2006 that resulted from the unneeded sigmoid resection, were being covered by multiple other docs until I found the one that decided to do what could be done to save me (the permanent ileostomy). 

My primary care doc wrote me up as Munchausen's to get herself off the hook for not seeking help for me.  I had to find the help for myself.  I did however get cleared of that "charge" by 2 psychiatrists and I MADE my Primary Care Doc retract the statement.  I went through the administrator of her organization.  Needless to say, she is no longer my primary care doc.

Oh, by the way, labeling someone as munchausens is libel or slander and the labeled person can sue for that, now that I'm all into the legal law suit thing.  So, whoever said that about you, is setting him/herself up for suit should you decide to press charges.  Granted your issues are complex, but the Munchausens is a way for the docs to cover for themselves and in no way reflects on you.  If I were you, I would seek a good malpractice attorney before this goes any further.

Rosemary

 

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