Hi,
I get terrible pelvic pain after pooping which radiates to my genital and pubic region and other areas including being felt deep in the rectum. I've been wondering if my quality of life would be improved by having a temporary ileostomy to give my bowels some healing time as all my pain seems triggered by going to the toilet and yet I'm none the wiser as to what is causing the problems, whether it be nerves that are red raw or muscles. One thing's for sure: something down there is not working as it should and I'm just wondering if any of you have had an ileostomy which has actually improved your quality of life and reduced your pain and suffering? I'm seeing a gastroenterologist soon and will be asking the question but I just wanted to do some research and get some feedback from those in the know. My best wishes to you all. Seeking answers to such complex problems is so taxing but I will never give up trying for myself and my family. I just want to be able to enjoy life again. God bless you all. Thank you.
Hi,
Usually they will only do this if the bowel is diseased say by crohns or colitis. They do do it for other conditions which have spread to the bowel say endometriosis but it has to be severe not just a few patches. Fortunately many with bowel endometriosis don’t have to have this procedure done. It would be down to your gastroenterologist but for this to be agreed would need several hoops having to jumped. The first step for any type of surgery like this would be an MDT meeting (those with IBD probably would have already had this conversation and it agreed. The team as a whole would need to be convinced this was a good idea. To be honest I think you’d face a big challenge at this stage. The next step would be that you understood all of the risks including it not helping you at all. They can actually get you to speak with a psychologist. I’m not convinced anyone would agree to it as unless your bowel was damaged beyond repair or has a disease and bowel rest was needed then you might stand a chance but I suspect you will need to have tried other treatments first. I know first hand how difficult it is to get major surgery. I’m down to have my bladder removed and reconstructed from part of my bowel after failing all other treatments and suffering severe pain and other symptoms. Trust me it’s a long process and to be considered for any major surgery the hurdles are extremely high to jump. You’d probably need imaging tests that you hadn’t already had as not all tests can be ordered by GPs. I know it sounds disappointing to hear but I think you need to be realistic about your gastro team agreeing to your request
Hi Alaine. I thought as much. It's horrible to think that we are expected to just suffer and nothing can or will be done for us but I know you are just being realistic. Thanks for the reply.
It might be worth asking though as some doctors will think outside the box. It’s still possible that they might be able to help you but I don’t think it will be a quick fix. Surgery might be an option but it might be classed as minor surgery rather than major surgery. Or it might be a combination of treatment methods. Don’t give up hope until you’ve been seen. Although some doctors don’t like difficult cases many absolutely love them as it gives them a challenge. From my own experience of other causes of my pelvic pain it pays to work with the doctors and be open to all treatment options rather than saying no. It might be retrying some medications again but taken in a different way with lifestyle changes. Think of your pelvic pain like an onion. An onion has many different layers and pelvic pain is rarely one disorder. So someone with endometriosis may suffer from IC and adenomyosis (me!) so each of these needs a different plan. It might not be immediately obvious that there are a few causes of pelvic pain in one person. Be open and ask what else could be causing your pelvic pain if he disagrees with your own interpretation. I know it’s easy to hold onto our own beliefs but sometimes this doesn’t help