Chronic constipation that is getting worse despite the strongest medication and fear of surgery

[Ieuann133]

Hi folks, I am a slight imposter here as I have never had a diagnosis of IBS but have chronic constipation for over 16 years. I do have lupus (diagnosed when I was 30) and other autoimmune conditions but at the moment I am really scared about my future.

(I am now 51, I haven’t worked for 12 years due to my health)

In a nutshell, my haematologist sent me to gastro to find out why I need so many iron infusions. It turned out that my absorption appeared to be ok but the final part of my bowel (sigmoid) had thickened up and no longer able to respond to the electrical impulses of my brain and therefore passing a motion was/is impossible without huge doses of laxatives. These laxatives are now having less and less effect on me and I feel like most of my large colon is not working now. I am nervous to eat as I don’t want to overload my system.

When I saw the surgeon 18 months ago, he was talking about surgery where they cut out the affected colon, attach a bag, then in the future try to reattach the bowel but his last words to me were “carry on as long as you can with whatever laxatives and medication that makes you go to the loo as the operations are difficult and not always successful”

I am now petrified..... can anyone tell me a bit more about what to expect?

Many thanks

M

[AmandaJW]

Go back to your surgeon and ask about ace malone surgery and sacral nerve stimulation. I had both of these surgeries for chronic constipation and it has helped for the past 4 years, however things have started to slow down again so these ops don't last forever.

[Ieuann133 in reply to AmandaJW]

Many thanks Amanda, I will have a look at that... problem with chronic constipation is that it is difficult to talk to people in your normal day to day life but it has such an impact on your life....

[Ieuann133 in reply to AmandaJW]

Hi again, they look really interesting procedures and both seem less invasive than cutting out my entire large bowel.

The sacral nerve stimulation seems to be used more for over active bladders and bowel.... but it has obviously helped you. I also suffer from interstitial cystitis which is autoimmune related rather than an infection and wondering if it could help that too....

Many many thanks, I really appreciate your knowledge

M

[AmandaJW in reply to Ieuann133]

I asked my surgeon how can sacral nerve stimulation work for both an over active bowel and constipation. He was very honest with me and said research has shown that it works but they don't know the mechanics of it. The ace malone surgery gives good results a lot quicker than sacral nerve stimulation. With sns there is a trial period, mine was 8 weeks, after you have the permanent implant but you have to keep going back to hospital to have the settings on your device changed and the results can be a bit hit and miss.