Hi Veronydale, Anangell, Jary and 2Snowbell
Reading all your stories, so reminds me of my own, pre Total colectomy! There are many success stories post colectomy, however, I would like to share some of my experiences, as I believe one needs to make an informed decision to have the surgery and therefore you need to know the negative experiences too.
I too had colonic inertia for years and had the Total Colectomy at the age of 32. I had always suffered from constipation, which worsened every year and especially after the birth of my children. My 2nd born was a healthy 4 kg baby girl who was born after a normal delivery. After my constipation deteriorated to the extend that after taking bowel prep to empty my colon, I ended up with a severe rectal prolapse. Not long after the surgery I started with constipation again. Within a year I had a bowel obstruction and needed an emergency laparotomy. By 4 months post laparotomy I had had another 3 obstructions. I flew back to my specialist, who only then diagnosed rectal dysfunction and inserted a neurotransmitter (sacral nerve stimulator). This didn't help at all and I was forced to eat a fluid diet, laxatives daily and enemas daily. Despite this I continued to get bowel obstructions regularly. After a few years of this, I was told my only hope was an ileostomy which I wasn't emotionally ready for. I searched for another specialist who diagnosed pelvic floor dysfunction. He prescribed biofeedback for 1 year which I vigorously did and eventually had to give up work for a year so I could spend up to 5 hours a day doing pelvic floor exercises, relaxation exercises, psychotherapy, biofeedback etc. Despite this I had an average of 2 -3 hospital admissions per annum. I returned to my specialist a year later to be told that I had brilliant pelvic floor muscles (so all the hard work had paid off to have a tight vagina and rectum) but alas, I still couldn't pass a stool unaided. By this time (7 years after colectomy), I was still on a fluid diet, doing bowel washouts up to 3 times per day and living in constant pain which affected every part of my life.
I went to yet another specialist (all in a different country as there are no specialists in our country) who also said my only hope was an ileostomy. I eventually succumbed and had the loop ileostomy and removal of sacral nerve stimulator in 2012 .
Despite having a few kinks now and then (which I believe can be resolved), this was the best decision of my life. I fought it for so many years, and now wish I could take back the 7 years of suffering and have the ileostomy earlier. My quality of life has improved so much. I can eat almost anything (except the usual seeds, nuts, popcorn, skins of fruit etc.) never have to worry about
bowel washouts, enemas, laxatives etc and am never in pain (except with the kinks).
To answer your question about
fluid diets and ways to pass stools in pregnancy: I survived 7 years on a fluid diet and was otherwise so healthy during this time. I never got a cold, flu etc. I liquidized all my own home cooked food, had very nutritious soups, meal replacement shakes etc. One doesn't need tube feeding to survive on a liquid diet. From a nutritional point, I didn't miss out on anything, I only missed chewing and eating pizzas, cakes etc!! I survived on enemas and bowel washouts too. I believe pregnancy shouldn't change any of this. I would advise, however, that you opt for a caesarian section, as years later, they realised that the biggest contributing factor to my pelvic floor dysfunction and worsening of my symptoms was the delivery of my second baby. Due to her enormous size, her shoulders got stuck (shoulder dystocia) and it was in this process that my nerve and muscles were damaged, even though I didn't tear.
The total colectomy made my situation worse but only because I wasn't correctly diagnosed before hand. I wonder whether I would have required the same surgery if they realised at that stage that my rectal dysfunction was the problem all along?. Perhaps my colon wouldn't have been so slow if my rectum worked properly. I think the back up started at the rectum and the colon was then forced to slow down as a result??? Either way I would have needed surgery, as I think you do. I probably would have ended up with an ileostomy anyway regardless of whether I was initially correctly diagnosed or not.
You all certainly sound like surgery would be your answer as living with colonic inertia is no fun to put it mildly. Just make an informed decision and realise that a total colectomy may not work 100% and that you may have to have an ileostomy, especially if you have pelvic floor dysfunction.
Having said this you may have read my other post about
just being discharged from hospital with a bowel obstruction. My small bowel has kinked 3 times this year, but I am booked for surgery next week to correct this. Despite this, my quality of life is a million times better than pre ileostomy.
Lastly, A positive mindset and exercise are vital and one needs to come to terms with all the options before jumping into any decisions. I play tennis 3 times per week, dance 3 times per week and lead a healthy and productive live. Exercise is great for the mind, body and soul. Pre colectomy there were times I just couldn't dance or play tennis due to the pain but now since my ileostomy I have far more energy to do the things I love.
I put it off having an ileostomy for 7 years because my mind wasn't ready to accept the bag, now I wish I had done it from the beginning........
Good luck to all of you
40 yr old mother of 2
2005 Total Colectomy (colonic inertia)
2006 Laparotomy for small bowel obstruction
2007 Sacral Nerve Stimulator
2009 Pelvic Floor Dysfunction / Obstructive Defaecation / Irritable Bowel (biofeedback 2 years)
2012 Aug 21 loop ileostomy and adhesionlysis
2012 Sept 19 Ileostomy Revision
ave 2 hosp admissions /year for obstructions