Ileostomy from Hell...my unwelcomed guest

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.

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

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.

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

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 [email protected].  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