Regretting Colostomy Reversal - Need Support/Advice

I've recently gotten a colostomy reversal and I'm completely regretting it. I'm 18 years old, and I went into the hospital last year for a 'simple' Delormes procedure to fix an anal prolapse and hernia. During the operation, the surgeon sewed a stitch too tightly which created a small hole in the back of my bowel. I was sent home from the hospital a day later believing I was going to be okay, but I knew something was seriously wrong after getting home. Streams of blood were coming out of my back passage, it was very painful, and I was generally just feeling really sick in every way. It turned out that feces was leaking through that hole and into my body, causing a huge infection. The doctors told me there was no need for me to be in that much pain. They did various uncomfortable/invasive tests over a large amount of time and discovered the hole, and they thought that the best way to fix the problem was to drain the hole, pump me full of antibiotics, and wait for the hole to heal up. That didn't work, and my anus actually separated from my rectum and disintegrated during the time the doctors spent fannying around not doing anything. This is why they had to put in my stoma.

The surgeon said the stoma was temporary and that within 3-6 months they would reverse it. The surgeon said that scar tissue formed where everything had disintegrated so they had to get me back into the hospital every month to place new skin there and dilate the area. This occurred for 8 months until I actually got the reversal. The doctors never prepared me for the normal repercussions of the reversal, let alone the repercussions of my particular case. The hole that my excrement comes out of is so small, she says it should stretch over time but I'm not really sure if that will happen. Basically what I get from it is that the muscle was so damaged it won't stretch out so I can have a big poo and it doesn't clench to hold in poo. It has been over 2 months since the reversal and I am absolutely miserable. I'm constipated, cannot take a satisfying poo (it doesn't all come out), can't hold in farts, can't tell the difference between a fart and a poo, extremely bloated, have a constant unsettled stomach, if I need a poo I have to rush to the toilet. I'm just so uncomfortable. And it's been this way since I've left the hospital. I've used a multitude of different treatments including laxatives, suppositories, enemas, herbal remedies (such as peppermint oil and charcoal tablets)... nothing seems to give me a hint of hope. I've also been referred for some kind of electricity surgery where they put wires from my spine to the muscles in my bum but not heard anything about it yet, and they don't even know if it will work. My surgeon always has a different story, she assured me about a month before the reversal that I would make a full recovery and be okay to go on my holiday to Malia in the summer and start uni in September (which I already put on hold for a year because of this whole mess), and now she's telling me I will never have a normal functioning bowel, ever. I feel cheated by the whole healthcare system from the problems they caused, the hell they've put me through, and all of these complications following the reversal.

My mental state is seriously suffering as a result, and I'm feeling seriously depressed. I keep thinking how regretful I am of getting the colostomy reversed, and wish I could have it back... at least then I could be getting on with my life. I could seriously use some advice or support. I hope someone gets back to me because I feel so alone, and there's no way out. There's no foreseeable time where I will be better, and I'm trying to stay strong but each day that goes by I'm losing more and more hope.

To K, do not give up hope. I went through 23 surgeries between the age of 11-21. Piece by piece, they kept removing bowel for Crohn's. Finally, at 21, things got better with a complete colectomy including rectum and a permanent ileostomy. It took a long time for the rectal area to granulate in and heal. After that, finally, the beginning of life. Marriage, children, a profession as an occupational therapist for the past 40 years, grandchildren, and unfortunately, a widower for the past 7.

You will make a decision on what to do. Living with an ostomy forever initially is very hard, but like with most things, you routinely do it becomes second nature and as routine as getting dressed. The ostomy could always be redone when you are ready and other options have been tried up to your point of mental tolerance and your health status.

Things will work out for you. Positive thoughts. Barry

I hope this is not the same surgeon that caused the problem. In any case, please seek another opinion. Seek the best of the best. Have they told you that you can't have your ostomy back?

Please seek a different hospital and new doctors, and get a lawyer. You have a good case for negligence and malpractice. In time you will find a good solution. Try to find a teaching university hospital that will offer a team approach to your care, including emotional support. You are going through so much, and none of it is your fault. Good luck to you.

So sorry to hear that things have gone so badly wrong for you.

I think if I was in your position, I would insist on being referred to another surgeon. I believe that you are entitled to this and, as long as you don't have issues with having to travel, you should be able to attend any hospital. There's one somewhere near Uxbridge that has a very highly qualified surgeon. A colleague at work saw him, and he is adept at 'Putting right other surgeons' mistakes'. Let me know if you want more details, and I'll ask my colleague for his name, etc.

I can see no reason why you can't have the colostomy put back. I really think your quality of life will be restored if you do.

To "K"

I think the first thing you should do is consult a medical negligence lawyer. I think you deserve many thousands of pounds in compensation - enough to go to the very best surgeon in the UK and have yourself operated on [privately if necessary] to completely cure your condition. You should have enough money left over to compensate you for the suffering you have endured.

I myself have an ileostomy due to medical negligence but have been far too ill since this occurred to fight for compensation. Also, I am old enough to be your grandmother!

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Don't give up! It can all be fixed. I had two disastrous ileostomy reversals and now accept that an ileostomy is the best option. You should seek legal advice, you put your trust in these people and sometimes they really don't deserve that trust. Be very wary of the spinal surgery! Do they even know what they're doing! I really hope you will get a second opinion before proceeding. I know that you feel hopeless now but you really can come out the other side of this.

Don't give up! It can all be fixed. I had two disastrous ileostomy reversals and now accept that an ileostomy is the best option. You should seek legal advice, you put your trust in these people and sometimes they really don't deserve that trust. Be very wary of the spinal surgery! Do they even know what they're doing! I really hope you will get a second opinion before proceeding. I know that you feel hopeless now but you really can come out the other side of this.

TOL - Please let us know what you intend to do, in case you'd like further help?

K,

It sounds like you have already gotten some good advice (specifically about second opinions and going somewhere else). I have no idea how medical malpractice works in your area (I live on the other side of the ocean in the USA) but if my surgery had gone like yours I'm sure I would have consulted an attorney.

Even the best surgeons "make mistakes" some just make more than others.

So far it sounds to me as if you might do very well with a "new" ostomy.

Please let us all know how things work out for you.

NT

Hi K.

What a terrible time you've been through, my heart goes out to you.

I agree with Picasso that you should be wary of the electrical surgery. Presumably (especially given your location) it's still the same hospital that's dealing with you, which means that even if you're not seeing the same surgeon who made the mistakes, you're certainly seeing his/her colleagues. It seems as though the team is intent on following a particular path and they're not listening to how you feel. There's no reason why you couldn't go back to having a stoma, if that's what you want. They can give you no guarantee that further surgery or procedures will give you a fully functioning rectum and anus, whereas at least with a stoma you will know what to expect each day.

It's possible that you do have a case for medical negligence but this is actually harder to claim than everyone thinks (and I'm speaking from experience here). If you wish to go down that route you need to act quite quickly as there are strict time limits in which to make a claim and for the case to go to court - 3 years. Which sounds like a long time, but believe me there will be tons of paperwork to go through and the time gets eaten up very quickly!

Do you have someone who could go with you for your appointments? Someone who can speak up on your behalf if you don't feel comfortable - it's quite difficult to challenge the opinion of someone we've been brought up to respect, especially when you're only 18. The team needs to know how this is affecting you emotionally - sadly many surgeons are too focused on the knife to pay attention to the soul.

Please keep posting on here and let us know how you are, and please find someone to talk to. Can you talk to your family or friends? You can also talk to your GP, and they can also refer you for some support counseling xx

Hi. I am so sorry that you have had to deal with these episodes and that you are feeling depressed. Please get some professional help to deal with the depression and you may need to look for another medical provider. It may seem endless for you but please hold on. You are a young person and this stuff will eventually be behind you. Take it one day at a time and say to yourself "this too shall pass". Let me know how you are doing.

v

Hi K, I read your post and just realized that it was a year ago and wondering how you are doing and feeling since this time has passed. I am praying that everything with your surgery and reversal has resolved for you, or at least has been improving and you have been able to get on with living. Did you vacation eventually? I hope so. I wish you the very best. Take care and please keep us posted. LH