Surviving Hysterectomy Complications: Seeking Tips and Support

May 31, 2012 4:29 pm

This is my first time writing about my situation. I have now had my bag for about 6 weeks, still a lot to get used to.

On April 18th, I went in for a partial hysterectomy, 5 days later was rushed back in and had an emergency bowel surgery. My bowels had 3 small cuts in them.

This was not discovered in the hospital so after being home for 2 days, the poison had been leaking into my body for days.

I now have an ostomy bag on my left side, good news is it is not a lifetime thing for me. In about 6 months, I go back in to get this bag off and another one put on my right side (an ileostomy (sp)). I will have that for 8 weeks to make sure all infection is gone and all healed up nice.

While in the hospital, I needed 4 blood transfusions and many meds... never mind all the tubes and hoses from all parts of the body.

I was less than a day away from death...... I am blessed and so happy to still be here.

It has been something to get used to, and I still have my days where I feel sorry for myself. But most of the time, I try to stay positive and think of the good and not the bad.

I'm learning new tricks with my bag and the nurses are a great help, but everyone learns new things on their own..... I'd love to hear how you deal with this life change and any tips would be great.

Thank you, and I think everyone with a bag is a strong, beautiful person!!!!! Living with one isn't the easiest thing, but you all do it.... that alone makes you all amazing people :)

Jun 02, 2012 10:33 pm

Hi, the same thing happened to me. I had a thermal ablation to burn the lining of my womb, but they burned too far and went through my bowel, bladder, colon, appendix, and rectum. They also sent me home, and when I went back to A&E, I was admitted to a ward and left for 3 days being told I only had an infection. By the time I saw a consultant, I had septicemia and he told me after he operated that another half hour and I would have been dead. I went on to suffer 2 collapsed lungs and peritonitis, needing a blood transfusion and being on a ventilator in intensive care. I now have a permanent colostomy bag and a lot of pain from nerve damage. All this from a simple procedure that should have taken less than an hour in day surgery. And 2 years on, they still tell me I'm lucky to be here. I don't see it as lucky considering all that I've been through since to try and rectify the damage, and the months I spent not knowing if I would need a stoma for my bladder, luckily I didn't. I still have times when I'm really down, but there are more times now when I don't let it get the better of me. Good luck. Patx

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Jun 06, 2012 5:26 am

Geez ladies, really hating the medical system. Reading this, I bet they would look after their own families with more compassion. Did any of you girls sue? I'm guessing no amount of money would help. Give me my health any day. Ugh... Cutie, it's going to be a lot different when you have that ileostomy. 'Cause they have to be emptied all the time, so keep up your fluids for a start. And not sure where you're from, but I lose soooo much fluid. I use these gel sachets to hold the fluid. I would rather have a colostomy than what I have, ileo. That's for sure, but really, nothing would be better, hey! And been there, done that too. Take care, good luck with the changes. Take care of your skin too, very important. :) Mooza xx

Jun 06, 2012 5:26 am

On ya Pat, I do think you got it bad, but wtf can you do? I think what happened to you is absolutely disgusting. Bet the Queen's corgis get better treatment. Ugh, arseholes. Sorry, my vent for the day. xxxxxxxxxxxxxxxxxxxxxxxxx MOOZEEEE

Jun 06, 2012 3:51 pm

Thanks for the replies, ladies. That sounds horrible, Val. I am in the process of talking to the Risk Management at the hospital I had my surgery at. I think it's so important that this becomes well known. I never should have been sent home, and in my eyes, someone needs to pay for this... Mozza, yes, I plan on getting a lawyer to see what my rights are. You are right, no amount of money can make what has happened right, but it can help with all the loss of money over the past month and months to come!! You said an ileostomy is worse... How so? Any info I can get beforehand would be a huge help. A question for all Lately, I have been feeling a lot of pressure in my rectum. It feels like I have to go to the washroom, but of course, don't need to. Does anyone feel this? Is it normal? What can I do about it? It's uncomfortable :(

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Jun 06, 2012 8:22 pm

My consultant told me to make a claim against him, which I am doing. The only thing is, the hospital's solicitors are dragging their feet and making things awkward. It's been going on for 2 years now, but my solicitor has had enough of them messing about. So, I've got a meeting with her, a barrister, and 2 expert consultants next Monday, where everything's going to be sorted and she's taking it into court. And as it's been said, no amount of money can compensate for your health. I know which I'd rather have, but you've got to make a stand against these doctors because their attitudes stink. They told me my colostomy would be reversible, and after 18 months of chasing for appointments to see the consultant and pestering for a date for the reversal, they wouldn't see me and referred me to a different hospital where I had to go through loads of tests and examinations, only to be told it wasn't reversible. The reason they didn't want to admit this was because it means a much bigger compensation payout than if it was reversible. So, cutie, you go for it and take them all the way, because they'd do it to you. And as Mooza says, they wouldn't want their families treated like that. Good luck with it. Pat x

Jun 07, 2012 8:13 pm

I'm sorry to hear your story. I too had a hysterectomy after a cyst grew on my ovaries. It drained my blood, gave peritonitis, and stopped it clotting, so they were unable to operate. After transfusions and four-hourly antibiotics, it clotted another day longer and I would be dead. But they were able to do my operation to remove the cyst and hysterectomy. However, when I woke up, I found an ileostomy bag, a stent on my kidney, and I was in intensive care. They said it was all fused together in the pelvis, and they were lucky to save me as the cyst had worn a hole in my bowel. It was a horrible dark time, and I lived on my own. I had it in September 2011, but in February 2012, I had my reversal operation, and now I'm learning to cope with this new reconstructed rectum and bowel. If you want to ask anything about the bag, feel free. Listen to your nurse, eat little and often, keep fluids up, take your loperamide, release gas holding the bag up at night to save getting up, always clean well when changing the bag, look after your skin, and kneel at the loo to empty with the bag opening pointing between your legs. And when you can, get some Lycra big pants - they will support the bag. As for the heavy feeling, it may be old poop, it may come out when they send you for an iodine x-ray - not pleasant. Hope you're okay, my thoughts are with you. xxx

Jun 14, 2012 3:00 am

I had a hysterectomy a year before my colostomy. I can honestly say I don't miss my unwelcome guest each month.