Hi New Member, need support and advice

Hi all,
I have been lurking on this for quite sometime before giving it a go. I am a 53 year young lady, I have had gut issues all my life with a horrific surgery in 2013 for rectopexy sigmoid removal. The sigmoid had twisted on itself.


As part of the consequence of that surgery, I know have to self catherize because the butchers cut and/or at minimum significantly damaged the sacral nerves. There is no feeling or awareness of needing to pee. It is a significant retention problem, not emptying.


Since then I have had two sidz marker showing significant hypomotility. It is all I can do to keep things going through me and passing stool.

Mayo clinic was not much help. They refused to consider the sidz marker as valid basically because they did not order it.

I do not have a definitive visible disease. It is a functional problem. Best doc I have seen has said it is redundant colon and not enough was removed in 2013. Also mild hershsprung's. Again, nothing visible that jumped out at doctors.

Pelvic floor is a disaster, I try to do my exercises and stay as fit as I can but the gut issues are incredibly painful.

I was athletic earlier in life and try hard to stay fit. I have multiple other health issues but exercise really helps if possible.

Today I see a new GI doc with the West Los Angeles VA and I am quite nervous because it is a new doctor and the history is complex. I am also told he is not a people person. Lovely but I am trying to keep an open mind.

I have been through biofeedback, it basically failed because of nerve damage and the nerve damage has caused very poor sphincter muscle tone.

I am being considered for the choletomy but I am not sure it can be reconnected on the inside because of the sphincter damage. I found a good doctor with USC who has helped me a lot.

This condition is very painful, I have modified diet to almost liquid with semi solid becuase insoluble fiber does not pass through me. I also have the rectal prolapse issue returned which does not allow solid stool to pass through me. then when it does there is usually incontinence to boot. So what a mess. So I do great with soups and teas. I pray for a resolution soon.

I hope someone out there has been through similar and can at least help me with encouragement and advice. I live alone, this has cost me relationships, children, etc. I have a wonderful dog and good friends.

thanks to all of you ahead of time, I am a genuine person in need of good support. I live in southern CA, I moved here for the more mild climate. it is much easier on my body.

Hi, thanks for the words of encouragement.
the appointment yesterday was totally not productive and very frustrating. It is very discouraging.
Yes a bag has been suggested which is why I am proactively searching for information and advice. I live alone and it is sometimes also very lonely.

I also found out that I have had lingering e coli and urinary infection with e coli most likely related to needing to self cath. That is not a comfortable subject but a now fact of life. That is not so bad as long as it does not hurt.

sometimes I guess it is taking two or three or more steps backwards to keep moving ahead. I am grateful for the good things in my life although my physical health is certainly a challenge no one including myself seems to know what to do with or what direction to go.

So I say for today one day at a time. Thanks for your support.

Having your colon removed might not solve all of your problems, but your quality of life would improve. Most adjust to the bag quite easily. Being pain free and being able to eat again, make for a life worth living. Glad the USC doc's helped. UCLA has a world class IBD center too. Keep seeking out support and top notch docs, and the decisions will be clearer. Sorry for your pain, hugs.