considerations before surgery

I am brand new to this forum. I can't believe I haven't found it before!!

I am 24 and live in Australia. I have had severe abdominal pain, nausea, constipation and other symptoms for the last 3 years. I have been so unwell I have not been able to work at all in that time. I have had so many tests it is unbelievable. My doctors haven't diagnosed me yet. They just say I have 'dysmotility' because they can't work it out.

I had an ileostomy formed in may 2010. I had problems from day one. The main point I want to make about them is, if you and your doctors are considering forming an ileostomy or colostomy ASK THEM TO MAKE IT REVERSIBLE!!!!!!!!! If you do not have a condition like cancer, where parts of your body need to be removed to help you heal, then it is actually possible to form an ileostomy and just disconnect your large intestine. The surgeons can just leave it inside your abdomen. I was only told this by a surgeon in my small town. None of the big city doctors even mentioned it before they did my surgery. The large bowel doesn't die or disintergrate or cause infection or anything if it is left inside you and prepared properly. They keep it connected to your normal blood supply. The reason I recommend you leave it in (not that I am a doctor), is that you never know if you will need your ileostomy reversed (like I did) or if they will develop techniques or drugs later on to help your condition. Also a friend of mine who had an ileostomy needed her large intestine later on for "spare parts" for a subsequent surgery but had already had it removed.

Hope that is a little bit helpful to anyone considering surgery.

Part of this is true. My husband and surgeon both had the understanding and plan that a jpouch procedure was going to be done PROVIDING once he was in there it was possible and viable. The colorectal surgeon only scheduled my husband's procedure for that day. As it turned out it was not meant to be for a lot of very good reasons. It was a 7 1/2 hr plus surgery and after we got the in-depth surgical operative report it confirmed everything the surgeon told me/us after the surgery.

I was initially disappointed...my husband took it far better than I did those first few days. That being said we both had the utmost confidence and trust in his colorectal surgeon and team. We have never looked back and no more woulda, coulda, shoulda's and my husband is lucky in that he healed quickly and very well and after a little trial and error things are fine. Hopefully he will be lucky and that will be the case for many years to come.

There are many factors in the decision if the surgeon can do this on one's behalf. Of course you want an excellent competent surgeon who can and will do his utmost to accomplish this as well. Sometimes it appears some people may not have ended up with a surgeon they are satisfied with after the fact and feel more or better could have been done for them.

Yes you are correct in that each person needs to be as informed as possible and once they know their options, limitations or whatever is going on with their insides that they do leave a potential possibility for a reversal, jpouch or whatever on the horizon if that is what they truly may want to do.

So many come to the decision and realization that they want to be done and over with it all and get on with their lives. Having to deal with a pouch for the rest of their lives in some cases is the alternative they have come to accept and are at peace with.

I post here regularly not because my husband is having problems but to try to be a help and a resource as so many have been for me/us before, during and after his ordeal on the UC board and this Ostomy board.

Your post is a good one and one for people to think about and consider and make sure they are fully aware of the whole picture and options that may or may not be available to them to make the best informed decision for themselves.

Aussie Slow Guts welcome. Did you have your colon taken out, is that why you're writing this advice?

I think you have to be careful, as there are a lot of reasons people have these surgeries. Your issue didn't involve the rectum or anus, but some of ours did. Also many people had reasons other than cancer that their colons were damaged (I saw a picture of mine and the whole transverse part was shrunken and scarred). And as others mentioned, many of us had conditions that put us at high risk of cancer (with ulcerative or Crohn's colitis, typical lifetime risk is 30%, but for people who had especially bad cases it's even higher).

You might consider just telling your own story and what you are glad you did or wished you did. I'm sure your intentions are good, but as you said, you're not a doctor, and are not aware of the full range of reasons why people have these surgeries.

Do feel free to write about the specific problems you are having, and maybe we can help there. And if you were denied the option of a reversal that might have worked in your case, that is a good thing for others to know about.

My rectum looked like hamburger meat and had to come out. Also, my colon was full of high grade dyplasia. There was no choice here.

Same in my husband's case when all was explained why in addition to the colon removed he also needed the total proctolectomy. I know different surgeons have different opinions regarding this. I have to assume it is on a case by case basis and what is needed in the best interest and health of the patient and in the hope of avoiding future problems.

Hi Everyone,

I would like to start this post with an apology. I really, truly, didn't mean to insult anyone or hurt their feelings or belittle their experiences!!!! I am very sorry!!!! I was just adding my opinion (and I have learned that I am probably not very good at explaining things properly over the internet). I just wanted people who need surgeries in the future to realise you are allowed to ask questions of your doctors. Ask them if it is the right option for you. Ask all the risks and benefits etc. I didn't really understand that just because they are a specialist doesn't mean they have seen it all. It was a very big learning curve for me. I dont feel I was always given enough information when I saw health professionals. And was just hoping people could learn from my mistakes. Again I am very sorry for upsetting people.