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Meet and talk to 20,086 OstoMates

Hannah's Story Of Hysterectomy Gone Really Bad......

Posted: Mon Dec 07, 2009 3:36 am
I wanted to share my whole story and see if anyone else has had the same issues I have had.
I also want to say before i do this, that I have read so many of y'all's stories and I sometimes feel like I really have nothing to complain about. I never had cancer or  had a dibilitaing disease since childhood.

For all of you that have had to deal with those things, I commend you. I actually commend ALL OF YOU for your courage, strength and honesty to get onto a public forum and tell your history and answer questions.
I can see why you do that;the people here I have talked to or even read things about, are the most compasstionate and welcoming people I have ever had the honor of "meeting".

That being said, this is how I happened to become an ostomate on 24 oct 2009. ( this is very difficult for me to tell all of this for some reason,makes me cry as I type) lol

I went in to have a routine hysterectomy on 20 Oct 09. No cancer, no fibroids, just pain during intercourse and jacked up periods. I am 39 and have 3 awesome kids, 23, 19 and 17..I'd say I'm done having babies so I decided to have this done and was very confident all would be well.
Surgery went great, I was using my Morphine pump for pain but by that night, I had them unhook it. I always felt bad on Morphine for some reason.

Next morning, I was up walking, wearing my own kick-a** Victoria's Secret Pajama pants and tee and walking the halls with my boyfriend. That evening, around 4:00 I felt a burning pain in my right side next to my belly button and didn't feel right and noticed my abdomen was hurting worse than it did that morning. I mentioned it to my BF and the nurses. I figured I just overdid it, I'm known to do that. Smile

By the next morning at around 530, I went to swing my legs out of the bed and that's as far as I got. The pain was horrendous...no words can describe what I felt. I could not move, I couldn't get my legs back on the bed and I couldn't pull my upper body up. I laid there for about 20 minutes until a woman walked by and said, "Honey, are you ok?". I couldn't reach my call button , so I was stuck.

My fever at this point was 101...pain was worse and BF and my best friend were there asking the nurses to call the doctor. He finally came 6 hours later, told me I had gas and to get up and walk. By now, that evening, fever was 104...pain was evil..I could not move. I am a pretty brave chick, I have ridden horses my whole life. Been injured many times, had my back broken in a horse injury. I have a very high pain tolerance and this was in no way tolerable.
Long story short....the doc tried to suggest many things, gas, kidney stones??, bladder infection???, kidney stones??, more gas....kidney infection, bladder infection...I finally through all this asked if it could be my appendix?? He said, "Well that would be the worst luck, if your appendix burst! But no, i don't think so. ( he did indeed end up removing my appendix due to the horrible condition of it from raging infection)
I was in and out of conciousness due to pain, illness and pain meds. My BF and best friend finally, seeing me deteriorate, started throwing a fit .
Two of the nurses came to my BF and told him to get me out of there ASAP. One of them even went to the doctor and told him, something was bad wrong and should take me back in surgery and look. He told her no, He wanted to wait.
Four days later, 24 Oct, that night at 600 pm I was finally taken back in after Ct scans, Kidney Scans,( what's the kidney obsession??) etc.... at one point, I begged the doctor to help me and told him I was dying and why was he letting me die?
7 hours later, I was put in ICU and I had no idea what was going on, a day later, one of the ICU nurses leaned over me and asked "How does your bag feel, hun?".....bag??? what the hell is she talking about, a bag? I went back out of conciousness and 3 days later, I found out when I was in a regular room, what BAG she was referring to.
My BF actually told the surgeon that he wanted him, and both the OBGYN and the general surgeon to be there when I woke up to talk to me about what had happened. They couldnt be found and didnt answer their pages.
I had spoken to the surgeon who did my ostomy and his exact words were, "When I opened you up, and I'm sorry to be so crude, but your entire abdomen was full of pus and shit. It was like a RIVER of shit." He spent 7 hours cleaning me out and repairing my colon thnat the OBGYN tore into. The OBGYN did however tell my boyfriend immidiately after the 2nd surgery that if I ever wanted a tummy tuck, we could get one, sense the doc that did my ostomy does tummy tucks!! AWESOME!! he also kept telling me that when I finally did talk to him. WTF??
I had sepsis and a horrible, raging infection. I was there in that facility for 9 days until I was stable enough to be transferred by ambulance, at MY Boyfriend & mine insistance and the ostomy surgeon's recomedation as well.
I got to the other hospital and boy what a difference!!! I was malnourished ,because for 9 days, I had 3 chicken nuggets, the day after the hysterectomy. After that, no food and they didn't have me on any type of IV nutrients, just the regular IV fluid. The docs at the 2nd hospital were actually shocked and disgusted at my treatment.
the second I got into the new hospital room, I was on several meds, stronger antibiotics and a food bag. I had a psychiatrist, a WOC Nurse, a vascular surgeon, who I LOVE, ((he wears bow ties!!)) a internal medicine doc and 4 docs from infectious diseases. Way different than the last place when they handed my boyfriend a DVD about ostomy care in the hall and told him that we needed to watch it as soon as I can. Pathetic.

i was in for a total of 3 weeks the 1st time. I had ureter tubes put in and didnt know it ( we were never told they were put in, the only way we knew id when I called the ostomy surgeon to see why i was bleeding so profusley every time i peed)  so 2 weeks after my release, I was back in for 4 days having another operation to have them and the infection they left behind taken out......never even signed a release for the tubes to be put in...

I know its a long story and Im sorry for that but its MY story and it felt good getting the whole thing out and down on "paper" so to speak.

I had a total of 4 operations in 3 weeks and still havent gone back to work. I plan on going back within a couple weeks if i can.

The bag situation is tolerable, when you think about the alternatives...death, well, it is a great thing in my opinion. When I look at my bag, who I named after my ex, I am grateful to be here and have opportunity to change it, and deal with the hassel.
Do NOT get me wrong, this trauma I have been through is horrible and I am dealing with everything one day at a time. I cry a lot and I pray even more.
It has been horrible for me. I have a great guy who has stood behind me and never faltered, so that is a great help. I have good days and bad days. Today was a good day, tomorrow, who knows? At least I'm here to see it.


I know we are all different and we all have different experiences and we all have differnt reasons for our ostomies, some of us are temporary and some are permanant; but we all have one thing in common, we are all ostomates and we are all still here because of these smelly, yucky, noisy, creepy little sacks of misery. ....and I love mine.  Smile

Thank you for reading this and unerstanding my need to get this out.  
love to all......Hannah
Posted: Mon Dec 07, 2009 5:13 am
Thank you Hannah, I'm sure it does the rest of us good to read these stories - maybe after my next surgery I will do a 'start to finish' story of my own. I too haven't had a battle with crohns or UC or cancer, and in that I am lucky, but like yourself have been run through the mill somewhat with other things, all of which can affect how you survive. Its amazing sometimes how strong we can be. Take care, Rachel x
Posted: Mon Dec 07, 2009 12:26 pm
I can't believe that you were in an accredited hospital.  What a horrible story.  My heart breaks for you and what you went through. You probably have a mal practice suit-if you are interested in per-suing it. Making you wait for a sepsis diagnosis --I just can't believe it.  I am so happy that you are on the mend and that you have  a wonderful support system.  I wish you all the good luck I could wish for anyone and have a wonderful holiday!!  Baba
Posted: Mon Dec 07, 2009 12:40 pm
Well Hannah, that was some story of your trials, reading it made me both angry at the treatment you got, and almost elated at the way you came through it all. It makes my own problems seem minor in comparison. Thanks for sharing your story. Ed
Posted: Mon Dec 07, 2009 1:34 pm
Dear, dear Hannah,  Your story breaks my heart!  I think about our country's lawmakers working on a healthcare plan and I think if they could just make the one we have work properly that would be good enough!!!!  My first thought is lawsuit....for all the good it would do.  I would take your story to a good lawyer and seek damages.
Posted: Tue Dec 08, 2009 12:30 am
thanks to the kind comments.
I appreciate them so much.  <3
Posted: Tue Dec 08, 2009 10:01 am
Dear Hannah,
     Your story and your acceptance in the face of the results are amazing.  To go in for an elective procedure and come out nearly at death's door and with an ostomy is heartbreaking.  I also have an ostomy in part because of my first surgeon's butchery.  Without going into MY trauma (it is your forum after all) I can tell you that I lay there in bed for months after I became aware of his mistake and composed letters to him in my head and fantasized about ruining him and on and on.  My husband and I thought about suing for malpractice but we know how difficult and time consuming it is.  We have 3 kids and had moved to another state by then and ultimately decided not to.  A friend here who is married to a surgeon told her he thought I could have gotten a million if I had tried.  As we know though, no amount of money can restore what we had.  With all you have been through I just want to say how impressive your courage and resillance are and how encouraging it is to the rest of us.  I also think writing it out is meaningful and I wish I had known about doing so.  I wouldn't have spent so many nights writing angry letters in my head. Best of luck to you.
Posted: Tue Dec 08, 2009 11:50 am
hello
glad to see that you telling your story helped you out and yes there is alot of support here or a place that you an vent and nobody here that i have met will tell you that you are full of shit and its all in your head either glad to hear that you have a trusting bf that has sat threw it  all  it takes a good strong person to understand and to except you the way you were and will be just remember the only thing that changed is that you have a hole bunch of different people to talk to and a whole bunch of nice people that are here to help to the best of their abilities
Posted: Tue Dec 08, 2009 1:32 pm
...thanks guys. I appreciate everyone taking the time to read my story and say such kind, uplifting things. It means the world to have people who have experiences like mine say that they understand and can empathize.
Posted: Tue Dec 15, 2009 11:55 am
I share your story....but went home with my leak and came in through ED with peritonitis....also "full of sh*t. Washed out and diverting colostomy with reversal planned for 4-6 weeks. Now I developed a bladder leak that needs to be fixed first...just not sure how involved that is going to be. Right now I would just like to get out of the diapers!! and get out of the 'muck' of discouragement. I wanted to just have a 'sling procedure so I could start running and meet my goal of running a 5k by my 45 bday. Now I just want to not pee continuously!!
Posted: Mon Feb 01, 2010 3:17 pm
You're a warrior, Hannah! Sad story - and for me, an eye-opening one. Having an ostomy after having bowel problems ... I was always are of that happening and it seemed 'logical'. But an ostomy when the bowels aren't a problem .... a whole other story.

Sis had a hysterectomy at 35 (advanced endemetriosis) and has been smiling every since. I told her your story. Her face fell and she said "oh my god - that really could happen to anyone who has abdominal surgery, couldn't it. That's way worse than how you got your ostomy." I have to agree.

The cruelty and ignorance of many in the health'care' field boggles my mind.

Cry, scream and stay strong!
Posted: Mon Feb 22, 2010 11:03 pm
I cannot believe the mess you've been put through at the hands of uncaring and possibly incompetent medical "professionals."

*hugs* - Stay strong and keep the faith! You're alive and have a wonderful support system so half the battle is finally over.
Posted: Mon Oct 04, 2010 12:24 am
Hannah,

I really feel for you.  I have a very similar, yet different story.  I too have an ostomy essentially due to what was diagnosed as delayed effects of having a hysterectomy. no disease, no cancer, bowels were all fine.

LONG story short, I had a hysterectomy for real heavy periods some months, but not all.  I had a 2 cm fibroid.  On review of this it does not take a mental giant to figure it COULD have simply been hormonal fluctuation as the fibroid was always there yet each month the very heavy periods were not.  I was ill advised by 2 surgeons.  I did go for my 2 consults.

Anyway, a hyst was done (If I knew what is now in the HERS web site, I would NEVER have had this hyst.)  Anyway, my immediate recovery was fine.  However, after 10 years went by I started having incomplete rectal emptying.  I went to a top hospital for a special scan of my pelvis to see what was happening when I pushed to have a BM.  I was TOLD my sigmoid colon was blocking off the top of my rectum when I went to have a BM.  I was told I needed my sigmoid colon removed.  This did not sound good, so I sought 2 other opinions at two other top hospitals.  They looked at the scan and said the same thing.  BUt 2 of the hospitals said "this is the cause of your problem, we will take out your sigmoid colon, but it may not solve your problem."  I said what the h----.  Then what?????? No other tests were done, no other explanations given.  Could not get an answer as to why this surgery was being proposed that may not work and no other possible coexiting issues were identified that could be contributing to the problem.  

I was missing tons of work all one year due to this incomplete rectal emtptying (was moving a normal amount of stool every morning but in many divided moves).  I WANTED to keep my professional job.  The 3rd hospital said "We fix this problem all the time, we do two of these pelvic restoration cases per week.  Our patients get 8+ years of lasting good result." I was told that in women who have hysterectomies sometimes the sigmoid colon falls into the space where the uterus used to be and blocks off the rectum.  Did not sound like a happy thing.   I was like OK lets fix my problem so I can get back to work.

VERY long story short on this one, these 2 surgeons did multiple procedures in addition to sigmoid removal that were not even connected with my issue, many unconsented, those never even mentioned. I would never have signed on for 7 procedures!  Site of the anastomosis (join of rectum with descending colon) narrowed in to the diameter of a pencil through which I could not pass stool.  Doc faxed me 5 times "I will do nothing" in response to my asking what are you going to do about it.  In a month a friend took me to a large hospital where they dilated the area.  Took 2 docs at this hospital 6 months to complete testing.  What really had happened was that though dilated, my colon anastomosis site was back to original diameter but a 4-inch stretch of colon around it had turned to scar tissue.  Then for 7 months I started having small bowel obstructions where 2 loops of small intestine had become severely stuck in dense scar tissue.  I was unable to eat for these 7 months and lost a quarter of my body weight.

One doc wrote me up as anorexia, and other not so endearing psychiatric terms.  One large hospital wrote that I should just keep using my nutrition port which at no point did I have! One place said taking adhesions off small intestine and making an ostomy is too dangerous.  HELLO.....if you can't eat, get nutrients, or pass waste....guess what folks, you're gonna die!  I could not believe that medical professionals did not "get" my problems.  Two kept saying "I don't get it."  (Oh, brother.)  

Finally I found one very experienced surgeon who took my loops of small intestine out of very dense scar tissue, put these loops back up where they were supposed to be, and did a permanent ileostomy because that was all that could be done to save me.  Even a colostomy could not be done because the stretch of colon where a colostomy would be placed had all turned to scar tissue within the walls of the colon at that site.

Upon review of my original scan, I did not even have a loop of sigmoid colon blocking off the top of my rectum in the first place!  Yet in surgery my sigmoid colon was removed anyway among other unconsented procedures being done (for dollars no doubt).  I won't go further because I AM following up legally.  However, I do agree no amount of money is going to get my body back for me.  I also do face the possibility of recurrence of small bowel adhesion obstruction, but so far so good, and I am making the best use I can of every day.  I love regaining the ability to eat though I do have some limits, but so what!  I am very happy when my bag fills and I sure hope it keeps working.  The one doc who saved my life while others stood by and were just going to let me die, is a real hero in my book.  He went beyond the White Coat Wall of Silence to save a life.  That's what medicine was intended to be.

So Hannah, yes there are others of us out there who have ended up with ostomies from having a hysterectomy.  My story is so different than yours yet similar in that neither of us had a disease.  I will pray for you and please pray for me.  We have both been through so much more than most people will go through in a life time.  We have each also seen the "bad side" of medicine.

Sincerely, anonymous
Posted: Mon Oct 04, 2010 12:32 am
Hannah,

I really feel for you.  I have a very similar, yet different story.  I too have an ostomy essentially due to what was diagnosed as delayed effects of having a hysterectomy. no disease, no cancer, bowels were all fine.

LONG story short, I had a hysterectomy for real heavy periods some months, but not all.  I had a 2 cm fibroid.  On review of this it does not take a mental giant to figure it COULD have simply been hormonal fluctuation as the fibroid was always there yet each month the very heavy periods were not.  I was ill advised by 2 surgeons.  I did go for my 2 consults.

Anyway, a hyst was done (If I knew what is now in the HERS web site, I would NEVER have had this hyst.)  Anyway, my immediate recovery was fine.  However, after 10 years went by I started having incomplete rectal emptying.  I went to a top hospital for a special scan of my pelvis to see what was happening when I pushed to have a BM.  I was TOLD my sigmoid colon was blocking off the top of my rectum when I went to have a BM.  I was told I needed my sigmoid colon removed.  This did not sound good, so I sought 2 other opinions at two other top hospitals.  They looked at the scan and said the same thing.  BUt 2 of the hospitals said "this is the cause of your problem, we will take out your sigmoid colon, but it may not solve your problem."  I said what the h----.  Then what?????? No other tests were done, no other explanations given.  Could not get an answer as to why this surgery was being proposed that may not work and no other possible coexiting issues were identified that could be contributing to the problem.  

I was missing tons of work all one year due to this incomplete rectal emtptying (was moving a normal amount of stool every morning but in many divided moves).  I WANTED to keep my professional job.  The 3rd hospital said "We fix this problem all the time, we do two of these pelvic restoration cases per week.  Our patients get 8+ years of lasting good result." I was told that in women who have hysterectomies sometimes the sigmoid colon falls into the space where the uterus used to be and blocks off the rectum.  Did not sound like a happy thing.   I was like OK lets fix my problem so I can get back to work.

VERY long story short on this one, these 2 surgeons did multiple procedures in addition to sigmoid removal that were not even connected with my issue, many unconsented, those never even mentioned. I would never have signed on for 7 procedures!  Site of the anastomosis (join of rectum with descending colon) narrowed in to the diameter of a pencil through which I could not pass stool.  Doc faxed me 5 times "I will do nothing" in response to my asking what are you going to do about it.  In a month a friend took me to a large hospital where they dilated the area.  Took 2 docs at this hospital 6 months to complete testing.  What really had happened was that though dilated, my colon anastomosis site was back to original diameter but a 4-inch stretch of colon around it had turned to scar tissue.  Then for 7 months I started having small bowel obstructions where 2 loops of small intestine had become severely stuck in dense scar tissue.  I was unable to eat for these 7 months and lost a quarter of my body weight.

One doc wrote me up as anorexia, and other not so endearing psychiatric terms.  One large hospital wrote that I should just keep using my nutrition port which at no point did I have! One place said taking adhesions off small intestine and making an ostomy is too dangerous.  HELLO.....if you can't eat, get nutrients, or pass waste....guess what folks, you're gonna die!  I could not believe that medical professionals did not "get" my problems.  Two kept saying "I don't get it."  (Oh, brother.)  

Finally I found one very experienced surgeon who took my loops of small intestine out of very dense scar tissue, put these loops back up where they were supposed to be, and did a permanent ileostomy because that was all that could be done to save me.  Even a colostomy could not be done because the stretch of colon where a colostomy would be placed had all turned to scar tissue within the walls of the colon at that site.

Upon review of my original scan, I did not even have a loop of sigmoid colon blocking off the top of my rectum in the first place!  Yet in surgery my sigmoid colon was removed anyway among other unconsented procedures being done (for dollars no doubt).  I won't go further because I AM following up legally.  However, I do agree no amount of money is going to get my body back for me.  I also do face the possibility of recurrence of small bowel adhesion obstruction, but so far so good, and I am making the best use I can of every day.  I love regaining the ability to eat though I do have some limits, but so what!  I am very happy when my bag fills and I sure hope it keeps working.  The one doc who saved my life while others stood by and were just going to let me die, is a real hero in my book.  He went beyond the White Coat Wall of Silence to save a life.  That's what medicine was intended to be.

So Hannah, yes there are others of us out there who have ended up with ostomies from having a hysterectomy.  My story is so different than yours yet similar in that neither of us had a disease.  I will pray for you and please pray for me.  We have both been through so much more than most people will go through in a life time.  We have each also seen the "bad side" of medicine.

Sincerely, anonymous
Posted: Mon Oct 04, 2010 12:40 am
Hannah,

I really feel for you.  I have a very similar, yet different story.  I too have an ostomy essentially due to what was diagnosed as delayed effects of having a hysterectomy. no disease, no cancer, bowels were all fine.

LONG story short, I had a hysterectomy for real heavy periods some months, but not all.  I had a 2 cm fibroid.  On review of this it does not take a mental giant to figure it COULD have simply been hormonal fluctuation as the fibroid was always there yet each month the very heavy periods were not.  I was ill advised by 2 surgeons.  I did go for my 2 consults.

Anyway, a hyst was done (If I knew what is now in the HERS web site, I would NEVER have had this hyst.)  Anyway, my immediate recovery was fine.  However, after 10 years went by I started having incomplete rectal emptying.  I went to a top hospital for a special scan of my pelvis to see what was happening when I pushed to have a BM.  I was TOLD my sigmoid colon was blocking off the top of my rectum when I went to have a BM.  I was told I needed my sigmoid colon removed.  This did not sound good, so I sought 2 other opinions at two other top hospitals.  They looked at the scan and said the same thing.  BUt 2 of the hospitals said "this is the cause of your problem, we will take out your sigmoid colon, but it may not solve your problem."  I said what the h----.  Then what?????? No other tests were done, no other explanations given.  Could not get an answer as to why this surgery was being proposed that may not work and no other possible coexiting issues were identified that could be contributing to the problem.  

I was missing tons of work all one year due to this incomplete rectal emtptying (was moving a normal amount of stool every morning but in many divided moves).  I WANTED to keep my professional job.  The 3rd hospital said "We fix this problem all the time, we do two of these pelvic restoration cases per week.  Our patients get 8+ years of lasting good result." I was told that in women who have hysterectomies sometimes the sigmoid colon falls into the space where the uterus used to be and blocks off the rectum.  Did not sound like a happy thing.   I was like OK lets fix my problem so I can get back to work.

VERY long story short on this one, these 2 surgeons did multiple procedures in addition to sigmoid removal that were not even connected with my issue, many unconsented, those never even mentioned. I would never have signed on for 7 procedures!  Site of the anastomosis (join of rectum with descending colon) narrowed in to the diameter of a pencil through which I could not pass stool.  Doc faxed me 5 times "I will do nothing" in response to my asking what are you going to do about it.  In a month a friend took me to a large hospital where they dilated the area.  Took 2 docs at this hospital 6 months to complete testing.  What really had happened was that though dilated, my colon anastomosis site was back to original diameter but a 4-inch stretch of colon around it had turned to scar tissue.  Then for 7 months I started having small bowel obstructions where 2 loops of small intestine had become severely stuck in dense scar tissue.  I was unable to eat for these 7 months and lost a quarter of my body weight.

One doc wrote me up as anorexia, and other not so endearing psychiatric terms.  One large hospital wrote that I should just keep using my nutrition port which at no point did I have! One place said taking adhesions off small intestine and making an ostomy is too dangerous.  HELLO.....if you can't eat, get nutrients, or pass waste....guess what folks, you're gonna die!  I could not believe that medical professionals did not "get" my problems.  Two kept saying "I don't get it."  (Oh, brother.)  

Finally I found one very experienced surgeon who took my loops of small intestine out of very dense scar tissue, put these loops back up where they were supposed to be, and did a permanent ileostomy because that was all that could be done to save me.  Even a colostomy could not be done because the stretch of colon where a colostomy would be placed had all turned to scar tissue within the walls of the colon at that site.

Upon review of my original scan, I did not even have a loop of sigmoid colon blocking off the top of my rectum in the first place!  Yet in surgery my sigmoid colon was removed anyway among other unconsented procedures being done (for dollars no doubt).  I won't go further because I AM following up legally.  However, I do agree no amount of money is going to get my body back for me.  I also do face the possibility of recurrence of small bowel adhesion obstruction, but so far so good, and I am making the best use I can of every day.  I love regaining the ability to eat though I do have some limits, but so what!  I am very happy when my bag fills and I sure hope it keeps working.  The one doc who saved my life while others stood by and were just going to let me die, is a real hero in my book.  He went beyond the White Coat Wall of Silence to save a life.  That's what medicine was intended to be.

So Hannah, yes there are others of us out there who have ended up with ostomies from having a hysterectomy.  My story is so different than yours yet similar in that neither of us had a disease.  I will pray for you and please pray for me.  We have both been through so much more than most people will go through in a life time.  We have each also seen the "bad side" of medicine.

Sincerely, anonymous
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