Looking for advice for Total Colectomy

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BeautifulMess
New Member


Date Joined Feb 2011
Total Posts : 6
   Posted 2/16/2011 7:52 PM (GMT -6)   
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. : )

Trixiemom
Regular Member


Date Joined Nov 2010
Total Posts : 89
   Posted 2/16/2011 8:45 PM (GMT -6)   
I think if you keep going the way you are you might start having pelvic floor issues....I have had the same thing for years..in the beginning the pelvic floor was fine the after a time giving birth ,bad hemmhroids etc... my pelvic floor just gave out..I am much older and now have an ileostomy (no regrets luv the freedom) but if the drs would have listened maybe my pelvic floor might not have been damaged...... My suggestion do as much research as possible then make a decision that You feel is best.....MY decision that I made was the best for me only you know your body...TRIXIEMOM
have loop ileostomy
diagnosed with colon inertia
2 mo out and feeling great

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/17/2011 2:36 AM (GMT -6)   
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!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 2/17/2011 4:40 AM (GMT -6)   
Yeah i totally agree with the above - it is no way to 'live' life per se if that is what you call living.... took me 8 months to make the decision and i wished i made it sooner. best of luck
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 176
   Posted 2/17/2011 6:51 AM (GMT -6)   
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

BeautifulMess
New Member


Date Joined Feb 2011
Total Posts : 6
   Posted 2/21/2011 8:16 PM (GMT -6)   
Thank you all for your advice!
Your comments sparked a few more questions for me...

-I know most have mentioned having an 'ileostomy', but my doctor was planning a "direct connect". Anyone have any insight on the direct connect, rather then the ileo?

-Does anyone know of any type of alternative to a surgery like this? Something, less dramatic??

-How long where you down after surgery? How many days did you miss work? Were you able to go back to work and 'take it easy'?

-Trxiemom mentioned above that she had problems with her pelvic floor after pregnancy... If you have the colon removed, would you not be able to have a vaginal birth - to protect the pelvic floor muscles? Are you advised to have a c-section?

-Why are baby wipes or paste mentioned? What kind of paste?

-What kind of problems have you encountered after the surgery?

Im just afraid to trade one problem for another... Obviously I have lived with my issue for years. I am just afraid if I move forward with with this surgery, it will be a domino effect of problems afterwords.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/22/2011 4:25 AM (GMT -6)   
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!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

BeautifulMess
New Member


Date Joined Feb 2011
Total Posts : 6
   Posted 2/24/2011 7:17 PM (GMT -6)   
Thank You 2b ColonFree for your continued information!!

I have been reading back in the previous posts starting at "Total Colectomy's #3 thru 7". After 7, I skipped to #30. Most of those posts where back from 2005-6 and though a lot of that information is helpful, 5 years is like eons ago in medical advances...
I was hoping there where a few medical advances since 2005 that were less drastic then removing the whole sha-bang and having no return.
I did find the "InterStim Therapy, by Medtronic" which is like an implanted pacemaker that stimulates the sacral nerves. you can find the link at: http://www.medtronic.eu/your-health/constipation/about-the-device/what-is-it/index.htm
Any thoughts or insight? Do you think that it would work is the muscles around the large intestine are paralyzed?

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/25/2011 4:00 AM (GMT -6)   
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.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 2/25/2011 3:41 PM (GMT -6)   

Hi Beautiful & Welcome!!!

Though many on here have an ileo, several like me don't and many more have had a very successful surgery and a now out living their life.  Sometimes they may stop by to chat but most don't.  I try to stay on the Total Colectomy site though I've had a very tough year w/ work & some other health issues so I haven't been on much since Sept.  I'm out of  work this week due to emergency surgery for a blood clot so it's nice to catch up and encourage others:)

I had a subtotal in July of '08; all of my colon was removed and I'm reattached from the sb to the rectum. My surgery was open bc I had so many previous abdominal surgeries; I was in the hospital for 5 days, had an epidural for pain control (it was the BEST!!!!!) really helped speed healing!!! had 2 drains, catherer, & NG tube. Started out with about 20 bms a day (that's why you need the wipes; I use prep H wipes & A&D oint. when needed - all the time in the beginning), the time I went to work 6 weeks later I was having 8-10 bms a day and by 9 mos it was 2-3 a day.  You dr will start you off on a low residue diet (no raw fruits, veggies, seeds, nuts), my gi has always kept me on this diet and I believe to this day that it has been the key to my surgery's success.  I've had no blockages of problems from the surgery what so ever.  I do eat fried foods and live on hot sauce so eventually these things I was able to tolerate just not the raw items, everytime I tried I would get severe D so it wasn't worth it. 

I always use wipes bc it still feels much better than TP  as area is always more sensitve now (Just wish I had stock in them lol).

Even though I did go back to work after 6 weeks, this surgery takes a loooooong time to heal from; it was almost a year before I felt good again although everyone including several drs told how healthy I now looked after the surgery!  But I didn't have lap surgery either so I don't know if that would have helped the healing process. 

I did encounter a major issue but it was a drs fault not this surgery per say;  following a different surgery a dr put me on high doses of antibiotics & when I told of the diarrhea & abdominal pain I was having he said it was related to the surgery (kidney) he sent me home where I vomited & continued with severe D until I became extremely ill.  He ordered a ct scan then had his asst call & say I needed emergency surgery bc my bowel was dead.  We rushed to my regular gi dr 3 hrs away who did a scope & sent me to ER, I ended up with c diff (severe infection) & was hopitalized in isolation for a week & it took 3 mons to clear the infection.  My gi & surgeon were VERY mad bc they said you DON'T give people w/out colons antibiotics without monitoring them & giving them probiotics & that I didn't have a colon anyway so what were they going to operate on????  It was a very scary situation & luckily I got a new urologist  (my 7th-but the BEST this time:))where my other drs are.

I'm also having severe anemia issues & extremely low potassium issues but my body is not the norm EVER; the only time it did great was throughout this whole surgery!!

I will tell you it was the very best decision I-well my drs ever made for me and it has helped me to have a great life as far as bowel issues go. I highly recommend it to anyone who suffers from CI as you won't believe how wonderful you're going to feel!!

Hope this helps:)

The very best to you Beautiful!!!!!

Judy

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