Looking for advice for Total Colectomy

Hello All,

I have had chronic constipation for as long as I can remember. (15+ years) Im a 23 year old female, and have always had a problem having regular BM's. On average I would say I have one, very painful, BM every two or three weeks.

After fully giving up all hope (and faith) in all over the counter medicines, fiber bars, cereals, colon blows (aka colonoscopy preps) and specialty foods, I wasn't having any luck of having any 'movement'. Once I finally finished college and landed a job, I finally had time (and money) to take action to investigate in my bodily issues. I started with my family physician, who had later referred to me to a local gastrointestinal specialist. They both tied 2+ years of different prescription drugs (that included Amitizia, Miralax, Xifaxin, MoviPrep's, and some ulcer medicine with a side-effect of diarrhea) none of which had any sort of effect on me. I had nearly the exact opposite effect than I was supposed to. Each made me violently ill and end up vomiting. After trying a few different prescription medications, we moved on to scheduling tests to see if there was something anatomically wrong with my insides.

Barium Enema came back as normal. No abnormalities, kinks, figure eights, ect. Defecography came back as normal, having full control of the pelvic floor muscles. Anorectal manometry came back as normal having excellent control of the muscles in the rectum/anus. The only thing that come back as astronomically incorrect was the STITZ marker test. Taking 5 days of x-rays to any sort of significant movement within the colon.

I never feel (or hear) any sort of movement within my gut. Sometimes, I can feel it "turn the corner" in my lower left side, where I heel over in pain for at least 10 minutes till the pain passes. Im guessing Sigmoid area? So far, I have been diagnosed with colonic inertia, or paralyzed muscles surrounding my large intestine.

I always feel so full, bloated and almost lethargic on a daily basis. My pants miraculously fit comfortably after having a BM. I sadly feel rejuvenated (and comfortable) after a BM.

The gastrointestinal doctor had suggested the next step would be investigating into total colorectal removal surgery. The gastro. doctor recommended me to a colorectal surgeon for a second opinion. The surgeon did another version of the anorectal manometry and had agreed that a laproscopic total colorectal surgery would be the answer to my problem.

Other then this constipation problem, I am perfectly healthy with no previous surgeries. I am so scared and nervous to hear that surgery would be the only answer to my problem. My mother (a complete pessimist) is absolutely convinced that something will go wrong. I am at my whits end, and would finally like to have a regular system. I am just looking for some advice and maybe some answers to my many questions. I have found many answers already looking back to previous posts, and I thank you all for it.

How do I know that my symptoms are bad enough to have this procedure done?
Should I just continue to just 'live' with my problems as I have for the past 15 years? What further damage could I cause by choosing not to have surgery?
How will this surgery change my daily life?
How will it change my daily eating and living habits?
Has anyone had the same previous symptoms, and proceeded with surgery? Are you glad you did it? What would you have done differently?

I am sure I will have many more questions, But I will thank you in advance for your time, help and advice. : )

hi beautiful and welcome!

going 2-3 weeks with no bm is no way to live. as trixie said, keeping the way you are now will eventually result in damaging your pelvic floor. no point in waiting any longer than you already have. i've been struggeling with CI for 16 yrs till i had my colectomy. very glad i had the surgery. the only thing i regret is i should have had the surgery sooner, cause the more you wait, the more damage to the pelvic floor. my pelvic floor was already damaged, so i have an ileostomy now, but i love it, it gave me my life and freedome back. since your pelvic floor is still ok, you have good chances the colectomy w/ileorectal anastomosis will work good for you and you won't even need a bag. but dont wait too long with this.

at the first couple mons post op you will go to the b/r a lot. can go up to 20 bms/day. but after couple of mons, for some ppl it may take longer, the small intestines addapts and bms start to slow down significantly. don't use toilet paper after surgery, only baby wipes + a paste to deal with irritation from going so much.

you'll also have to follow a low fiber/low residue diet at least at the first few mons. many drs say 2 weeks post op to try everything, but trust me, be careful with that. i think it's best to keep with the low residue for at least 6 mons post op. and when you start to introduce more foods, make it one at a time and a small amount, see how it works for you. if you notice any trouble with it, leave it and try it again 2-3 mons later. also one of the most important thing is to remember to chew your food very thoroughly after surgery. and drink lots and lots of water.

this is a huge surgery, be prepared for a long period of recovery and adaptation of your digestive system and your body. the average time of recovery is 6 weeks (concerning pain and physically feel like yourself again). but everyone is different and some recover faster than others, some have troubles with certain foods and some don't, so you'll mostly have to listen to your body and work with it, see what works best for you, mostly a triel and error thing. but take it real slow with the food.

best of luck to you!

Welcome Beautiful.  Please don't live the rest of your life in misery.   The surgery can be relatively simple and recovery quick.  Last summer I had a subtotal (asked for a total but my surgeon said that a small storage area was necessary so he left two inches of colon) and it was wonderfully successful.  The surgery was done laproscopically.  Four days in the hospital and only nine days of work missed. 

There are many things that I cannot eat anymore but I'm fine with that.  Fruits, most veggies, seeds, nuts and whole grains.  In the beginning I had several bm's per day but now I'm down to about two per day. 

Please feel free to contact me by clicking the envelope under my name.

Val

hi beautiful,

yes, the procedure for colonic inertia is to take out most of the colon (the whole colon but the rectum) and connecting the small intestine to the rectum - no bag. but, not everyone has success with that due to pelvic floor dysfunction (like me), so in some cases an ileostomy is needed. you say your pelvic is fine according to the tests, so you may have good chances the colectomy w/ileorectal anstomosis (removing the colon and connecting the small intestine to the rectum) will work for you and you won't need a bag.

i had the colectomy w/ileorectal anastomosis on Aug 2009, but it didn't work b/c i have severe anismus + my small intestine is also slow, so the ileostomy works better for me. so i had the ileostomy created on July 2010.

unfortunately, there are no other alternatives for CI, other than removing the colon. the only alternative is laxatives, since ppl with CI can eat a liquid diet and it still won't come out. the problem is that laxatives loose their affect with time. i know lots of ppl with constipation and they live on laxatives daily for years. as long as they manage well with laxatives, i'd say they should keep taking them, but if the laxatives don't work well and they still cant have a decent quality of life, or the laxatives stop working all together, then they should consider surgery.

i was able to go back to work 5 weeks after the colectomy. as far as recovery is concerned, i felt great after 5 weeks. but i did take it easy and didn't lift heavy weight few mons post op (can't remember how long exactly, but i think at least 3 mons).

about giving birth after surgery, that's something you'll have to consult your dr. he'll be able to tell you if you're capbale of it.

i mentioned baby wipes b/c after the colectomy you go to the b/r a lot, so your skin gets irritated and toilet paper is just not gentle enough for your butt - that's all ;) you'll be able to tolerate baby wipes much better. and you may need some cream for your butt. i live in israel and i used a certain cream here. i can't remember the name of the cream most ppl use here after surgery, so hopefuly someone will chime in about that. but anyway, you can also ask the dr - any kind of butt cream to relief the irritation from going to the b/r so much.

the problems i encountred after surgery were that i was still constipated and couldn't tolerate many foods. there are still lots of foods i can't eat due to slow motility of my small intestine. there are some foods that even tho they don't slow me down, but they give me bad gas and abdominal pain, so i stay away from them too.

you can learn a lot about this surgery for CI and it's outcome if you google "total colectomy part 3" (1 and 2 are hard to find, but there are parts 3-30 something) - you'll find dozens of wormen there who went through this surgery. most of them had much better outcome than me and never needed a bag. those "total colectomy" threads were the only thing that prepared me so well for this surgery - how it's done, the outcome, possible complications and generally what to expect. i believe that reading some of these threads will help you make a decision.

good luck to you!

hi beautiful,

unfortunately, nothing has changed since 2005 medically as to the treatments for CI. i've read about the implanted pacemaker about 3 years ago, and i even brought the article for my gastro doc to see. he refered to it as a joke and didn't wan't to discuss it at all. all the drs i've seen never offered this to me. i'm not sure if we even have it here in israel.

but i don't know, maybe if you can find a hospital that do this, maybe it's worth a try. but i'd say this procedure is only for those who's colon is working ok and they only have an outlet disorder (anismus). but when the whole colon is paralized, this can't help.

for me, even if this pacemaker does work, my small intestine is slow, so i don't know if that will even help me.

if the whole colon doesn't work + there's anismus, then maybe it would be worth to try it after removing the colon, when the motility of the whole system is improved.