Ileostomy from Hell...my unwelcomed guest

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Michele16
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/31/2006 10:22 PM (GMT -6)   
I am so glad I found this sight. Reading about other's ileostomies has helped me feel positive after a month of depression.

I had a hysterectomy March 1st/06. At this time it was discovered that my uterus had dropped after the birth of my 2 big babies and attached itself to my rectum, which had been ripped at both births. Instead of stopping the operation and deciding on a plan of action, my doctor continued the hystectomy and perferated the rectum, twice. This was not discovered until I was sent home and ended up back in emerg the next day with severe pain. I underwent surgery and ended up with 2 Jackson-Pratt drains, 24 staples from surgery and an ileostomy, all attached to my abdomen. I was in total shock because I had been so positive about the hysterectomy going well, and then to have all this attached to me and be in great pain was more then I could take in. In the hospital my pouch kept popping off all day and night, which made an aweful mess on the bed and clothing. I depended on everyone to help me as I had no clue as what an ileostomy was or how it worked. I had a book of instructions given to me and told to learn quickly. I was in shock over how serious I'd been sick and couldn't even think of dealing with a pouch. It wasn't until I got home after a week in the hospital and had home care nurses help me each day that we realized the 2 piece pouch wasn't sealing due to the position of the stoma and a one piece flexible pouch was needed for a good seal. It took my husband to quickly figure out that an Eakin seal would also help. Since then we've had pretty good sucess with the pouch.

However, I am still angry about what happened and how this all went so wrong. My gynocologists told me that when they saw the problem with the uterus and rectum that they knew they should have stopped and closed me up, then probably do a laporoscopy to figure out what to do next. Why they didn't I don't know as I was awake during the surgery and talking to the docs and nurses. I feeled robbed that the decision was taken away from me and this other mess was thrust upon me.

I am angry every day. I have had 3 X-rays and a CT scan, with more to follow until the rectum heals. Until then, my life has been put on hold. I have pain all day, am depressed and have lost 20 pounds due to being afraid to eat anything that might irratate the ostomy. I have to sleep in a bed set up in our living room as I require pillows around me to keep me from sleeping on my side or stomach, as it irrates the drains and stoma. I live in constant fear my pouch will burst because of the aweful 2 weeks we had with it at the beginning of this.

I just want my life back. My ostomy surgeon says he won't even look at reversal for 4 months and only then if we have compleletly healed the rectum. Has anyone else had this happen due to surgical complications and doctor error? If so, I'd love some advise on how to move forward and not be so angry about it.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 4/1/2006 2:51 PM (GMT -6)   
This is indeed a tragic set of circumstances.  I cannot offer you any advice for resolving your medical problems but I do recommend you see someone about the emotional issues.  You could be suffering from PTSD (post traumatic stress disorder) or depression.  Over my own failing health which resulted in 2 surgeries I became depressed.  I sought help with a psychologist that dealt with patients who are chronically ill and she worked with my doctor to get me on antidepressants.  It made the world of difference for me emotionally and helped me to move on  and concentrate on recovery.
 
I also lived with a temp ostomy for 8 weeks between surgeries although I knew I was going to have one so I was mentally ready.  I suggest you get a ostomy nurse to come in your home 1-2X per week to help you if you haven't arranged this type of help yet.  I believe stoma nurses are a blessed group of individuals, providing sensitive and intelligent care for a fairly humbling condition.
 
Let us know how you are doing.
 
Sue
 
 
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 4/1/2006 9:57 PM (GMT -6)   
Hello! Michele16
 
I am real sorry about your surgery; but keep in mind that you are alive and have two beautiful children to take care of for the rest of their lives.  And what happened to you is like a detour to a full recovery.  I truly know how you feel about the ileostomy (ostomy bag).  I went it to have my large intestine removed and readjustments of the area around the pelvic floor which should have been a 3 1/2 hr surgery which ended up being 9 1/2 hrs and alot of morphine.  The worst part is I ended up with a ostomy bag in which I was not made aware of until five days later among other physically visible markings.  When I woke up, I was in total pain and didn't recognize my husband or my beautiful daughter. They left at midnight and a 1/2 hr later, I was having a blood transfusion (not in the right state of mind to make any decisions regarding agreeing to a blood transfusion to keep me alive.  Few hours later, my husband returned, surgeon came in looked at me and said I want blood work STAT; I was blown up like a balloon, you could see my eyes and I looked 9 months pregnant oddly enough because I only weighed 118 lbs.  Minutes later, I was rushed to the OR for internal bleeding around my right kidney, they gave me four more units of blood.  In which I was cut open right down the middle of my stomach resembling a snake. All I remember was being wheeled down the hallway towards the elevator and saying "Why am I being punished?  Who will take care of my daughter?" and say a bright light when the elevator door opened up and that was all I remember.  Another 5 1/2 hrs surgery and I was in the special care unit for the night.  Morphined out again.  A few days later, I was off the morphine and the bandages came off and I was totally shocked because I was told only 1 to 2 percent could have this happen to them.  I guess I was the 1 and 2 percent, my stomach resembles a railroad track and there was the ostomy bag.  I was devastated, upset, basically sick over it.  Why me?  How am I going to handle this? What happens if it cannot be reversed?  My life is ruined.  How am I going to live the rest of my life, I am only 41 yrs old.  I won't be able to do everything I did before the surgery.  So for weeks, I cried morning, noon, and night.  My husband worked 8 hrs a day, my daughter was in school, so it was just me and my loving and caring family pet who laid alongside of the sofa that is where I laid until someone arrived home in the afternoon.  I couldn't walk too far or even make the steps so every morning before they left for work and school, they would bring me downstairs and set the sofa up for me to relax with the TV and phone nearby as well as the kitchen and bathroom all on the same floor.  Plus two days a week a home visiting nurse would come and check my ostomy bag for possible infection.  It was disgusting at first, but someone has to do it and that someone was me.  I was literally depressed about the whole ordeal.  My aunt sent me a Saint Jude Novena in which I said morning and at night.  Three months later, my surgeon gave me a Christmas present of reversing my ileostomy on 12/20/05.  The only thing is you must have an appropriate amount of weight gain in order to have the ileostomy reversed, you cannot be sick, but healthy.  Don't be afraid to eat just watch what you eat.  Your surgeon or nutritionist should have provided you with a list of acceptable foods and fluids to have during this process.  Keep a journal of what you eat and how it affects you.  Your ostomy bag could be amusing sometimes especially passing gas.  Because once it is reversed, you also might lose a substantial amount of weight and feel really fatigues.  But, hopefully you will get well faster than others.  You just have to believe in yourself and have a great support system at home too.  Just relax and take each day one day at a time.  Before you know it, you will be having your ostomy bag removed and believe it or not you might just miss it in the end.  We will keep you in our prayers. . .
 
Angel Baby

Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 4/1/2006 10:48 PM (GMT -6)   

Girl, sounds to me like you have every right to be angry!  I would like to think this is a rare thing, but sometimes you hear things that doctors do to people without their permission and it makes you wonder.  So, it is ok to be mad,  and it is ok, to be depressed.  Who in their right mind wouldn't be?  Just don't be mad all the time, and don't be sad all the time.  Limit yourself to a certain period of time each day, and then when that time is over, try to see the light at the end of the tunnel, ok?  Think of the blessings you have and the jobs you need to do.  At first, it will be a long time of the blues, and then you will learn to deal.  After all, girl, you are a mom, so that gives you that survival instinct.  You have to be around for all the MOM things coming in the future.  You can be an example for your kids of how to face challenges.  They will be better people for watching you handle this.    My kids both think I am brave (if they only knew).

Meanwhile I pray that you will feel better soon.

Hopeso 


 


Michele16
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 4/2/2006 3:10 PM (GMT -6)   
Thank you everyone for your advice and kind words. I do believe I need to talk to someone about my situation as the depression won't go away. Post tramatic stress is exactly what I feel I have. I can't conentrate on things I use to love to do. I cannot read or watch anything that has to do with illness or doctors or hospitals. I am OK when my family or friends are around but when I am alone during the day is the hardest time for me as I think too much about what happened. I know I am very lucky as it only temporary, hopefully, and I have great family and friends support. The hardest thing for me is not being able to be more active in my kids lives right now. I feel I let them down by having this operation. My son told me before I went in not to have the hysterectomy as it was messing with nature's natural plan for us and to let things go their course. And my daughter told me she was worried something bad would happen. I wish I had listened to them. But their support now has been awesome and I am so lucky to have such great kids. The good things to come from this are I quit smoking and lost 20 pounds, I started to pray again and I have a long vacation from work, although I'd love to be back working just to keep busy. I work in a pharmacy that carries all my ostomy supplies so I have a great support network there, with our nurse and pharmacist. Thank you for listening to me and giving me your thoughts. This is a great site to vent and hear other stories. Everyone sounds like good people. Good luck to everyone with their ventures. I'll be around often to keep up on what's happening.

Michele16
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 4/2/2006 3:20 PM (GMT -6)   
Sorry...I forgot one thing I wanted to ask. Does anyone know if it's OK to have an occasional glass of wine or a beer. I am terrified to try it as I don't know how it will react. I'd appreciate any advice one this one. Thanks

Michele16

Krystal L.
New Member


Date Joined Apr 2006
Total Posts : 2
   Posted 4/7/2006 7:09 PM (GMT -6)   

Michele, my situation is different, but I ended up with similar frustration and wanted to share my story with you.  After years of infertility (blessed by one adoption in 2003), I finally got pregnant and gave birth vaginally to a son in April 2005.  about a week after delivery, I noticed stool coming from my vagina.  I visited my OB's nurse as the OB wasn't in that day.  She told me that it was just lochia.  The next day I was sure stool was coming out of the vagina and again called the doctor's office.  My doctor honestly said, "Oh Krystal, women don't get fistulas from giving birth."  Well, I went in to see her anyway, and (unfortunately for me) she had to admit that I'd developed a rectovaginal fistula (hole from rectum to vagina) from delivery.  The most frustrating part of this is what seems to be inattention to my labor and progress.  I'd been dilated to 10 cm for a couple of hours before she showed up to break my water at 9:00 a.m.  Then, she went off to do some scheduled surgeries.  She checked in on me at noon and said she was going to eat lunch and then would have me start pushing.  Somehow, either the length of time that my son's head was pressing on tissues cut off the blood supply to the area of the rectum that developed the fistula (pressure necrosis) or some other oddity caused the fistula.  My mother thinks the doctor's technique of perineal massage was the cause.  I had an epidural and couldn't feel much at all, certainly not pain and essentially not even the pressure of my son's head.

To shorten a long story, I have had two failed repairs of the fistula, and a month ago (March 8) I basically had a coloanal anastomosis at the fistula site with a concomitant sigmoid loop colostomy.  It took me several weeks to choose to have the colostomy.  I would break out in a sweat and get nauseated just thinking about having a colostomy.  At the very first, I was dead set against it and didn't think I could do it.  I did manage to decide that I wasn't going to have a successful repair if I didn't get the stool diverted away from the fistula, and thankfully I didn't back out on the morning of surgery.  Still, every single day of the last year I've had to deal with either a fistula, a failed surgery, or a colostomy.  I won't even go into the amount of pain involved with all of the surgeries, nor will I talk about the challenges of dealing with a colostomy.  I even had a bad run with the home health nurse who was supposed to help me, not ignore me.  She even discharged me without my knowledge, but when I called my doctor's office in tears that day, the wonderful nurse there got me in to see the best ET nurse in town, so finally something worked out right!

I should be getting the colostomy reversed, for which I'm extremely grateful.  I will have a "pouchogram" done in May to see if the rectum has healed properly, after which point I can have the reversal.
 
If you want to talk, you can e-mail me privately.  My heart goes out to you!
 
Krystal

Michele16
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 4/8/2006 1:43 PM (GMT -6)   
Hi Krystal L.
 
My heart goes out to you, especially having such a young child and having to deal with all this.  I don't know how you even manage.  This should be the best time of your life, not the worst.  I hope you have a good support network. I will keep you in my thoughts. 
 
I am keeping sane through this by telling myself the fistula will soon heal and the reversal will go as scheduled.  I can't imagine what I will do if this doesn't go according to plan.  I'm already losing it emotionally as we cannot get the dam pouch to seal on a consistant basis.  We have a few days of success and a week of hell where it busts 6 times a day.  That is the most frustrating part as I can't do anything or get out and I feel so filthy.  I only get through the days by telling myself 6 more weeks...God willing.  I've never been particularly religous but I've never prayed so much in my life as now.
 
I would like to e-mail you.  I'm not sure how to go about it with our addresses.  Do you have any ideas.  Let me know.  Hope to talk to you again. 

Krystal L.
New Member


Date Joined Apr 2006
Total Posts : 2
   Posted 6/20/2006 8:59 AM (GMT -6)   

Hi, Michelle.  Sorry to take so long to reply.  I thought I'd checked here since I wrote... guess I didn't or else I missed your response.

You can e-mail me privately at kluaces@sbcglobal.net.  I'd love to hear how you're doing.  I'd love to be supportive if things aren't going so well still.

Sincerely,

Krystal


skyesophia
New Member


Date Joined Aug 2006
Total Posts : 1
   Posted 8/8/2006 5:22 AM (GMT -6)   

Hi Michelle, sounds like you've been through an nightmare.  Unfortunately you're not the first case I've seen of operations going wrong and the patient waking up with something completely different than they expected.  There's always that clause isn't there on the consent form where you agree to them doing anything else they deem necessary....that clause always terrifies me whenever I have to have surgery as I never know quite what I'm going to wake up with.

I ended up having a total colectomy and ileostomy after I became accutely ill with crohns disease in 1997 (I was 19).  I had been previously misdiagnosed and was made more sick by being given incorrect drugs ets.  When I finally had to have emergency surgery it was due to septicaemia and my choice was have the operation or die, so for me I felt like I had no choice.  I couldn't have a reversal after 6 months as my rectum was not well enough, and to this day (and an abdominal fistula and resiting of my stoma later) I am still waiting.  Like you I was in shock after my operation.  I withdrew into myself.  Everyone thought I was doing ok, as I managed with the stoma on my own and didn't ask for help....but mentally I was a mess.  I cried myself to sleep every night for that first year.  It wasn't just dealing with the horrible stoma and all it's accidents and problems, but also with realising how close I had come to dying.  I kept looking at the people I know doing stupid things like getting really drunk, or running out into the busy road, and I would think, 'don't they value their lives, don't they know that when you die that's it?'.  I couldn't think straight.  I kept having flashbacks to my time in hospital.  I would find myself sitting and staring into space...I had been right back there re-living it all for god knows how many minutes.  I had bad dreams, particularly about my time in intensive care when I was half out of it on the morphine and had been completely helpless.  I remembered the pain as if it was still real.  I got annoyed by my friends and family asking how I was, and people telling me how much better I was looking, because I didn't feel it.

I was obviously suffering post traumatic shock.  It wasn't until I met my then boyfriend 2 years later, that he got me to talk about it, not just once, but over and over again, until I had got it all out of my system.  Until then I couldn't even think about it without crying (even after 2 years).  But after letting out all the pain I realised one day that I hadn't thought about it for a week or more.  And gradually I realised the pain had gone.

I still hate my stoma, and long for a day when science progresses and crohns can be cured and my stoma removed.  But I can live with it now and have a new boyfriend and am very happy.  So my advice to you really is to talk to someone/anyone.  It can be a family member, or a complete stranger, and keep talking.  And most importantly give it time, it will take a long time to come to terms with how your life has been changed, but just remember, that it WILL get better, even if it doesn't seem like it now.  I have my fingers crossed for you that you can have the reversal, but even if it takes a little longer than expected, or if it turns out to not be possible, it is not the end of your life.  I do everything that I would have done without one, including backpacking around Eastern Europe, Cambodia and Peru!

You were asking about whether or not you could drink....well, I would recommend you not doing so while you are still healing up, but one drink won't hurt.  I rarely drink as it is bad for my crohns disease, but as you do not have this problem there should not be any reason why you can't drink when you are recovered if you had no problem with it before the surgery.  The only thing I have found is that when I am drunk I do not wake up when my bag is full.  My brain doesn't become aware that my bag needs emptying as my senses have been dulled.  So I often end up with a leaking bag if I have too much to drink.  This is can be awkward if you are around someone elses house.  Oh, and obviously, alcohol can make you more depressed, so until you let some of the pain and anger out, you may find that it comes out when you have a few drinks.  I would often cry when I drank alcohol following my operation as I was letting out some of the pain that I had kept so tightly locked up.

Anyway, far more than I meant to write.  Wishing you all well

Sophie x

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