CHRONIC CONSTIPATION FOLLOWING SUB TOTAL COLLECTOMY

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heidihi
New Member


Date Joined Jul 2011
Total Posts : 3
   Posted 7/29/2011 4:20 AM (GMT -6)   
Hello Everyone,
I've just found this site and think it's brilliant - full of information and excellent advice! Hopefully someone out there just might be able to advise me on what to do next.
My story is pretty long and complicated but I'll try to keep it as brief as possible.
As a child I was diagnosed with what my doctor called a 'Lazy Bowel' and had to be given regular medication to keep things moving. My symptoms worsened over the years - pain/wind/bloating etc. and I was sent to a variety of consultants - from Gynae to endocrinilogy, surgeons to medical until I gave up and tried to control things myself, as best I could. After I had my 2 girls ( by C section)major gynae problems did occur and I was given a total hysterectomy at the age of 42.
My 'Lazy Bowel' got worse and for over a year I was in & out of hospital with undiagnosed abdominal pain and vomiting. The medical staff were getting really fed up with my admissions and just sent me home with more laxatives until I was taking 3 different types morning & night and still my bowels didn't move for 3 to 4 weeks!
Eventually, following numerous more tests, the consultant agreed that I had a serious motility problem with the colon and I had a sub total collectomy in April 2002. The following year was one of the best I'd ever had - I felt absolutely great and full of energy. Sadly it didn't last and I had my first op to remove & divide adhesions 14 months later.
Since then I've continued to be admitted to hospital with sub - acute small bowel obstructions and after 3 further surgeries to remove adhesions, anothr for the insertion of a gastric peg (went wrong, became infected so out it came again) and one for a duodenal bypass, I am no further on and still in pain and continue to be admitted to hospital for the obstructions and dehydration due to vomiting.
On the last 5 or 6 admissions it was noted that my bowel was compacted with waste and the bowel movements I was having and thought were normal was actually 'overflow' I've started giving myself phosphate enemas - excuse spelling -together with laxative drinks 3 times a day. At first things did improve a bit but I think my system has got used to the medication and has slowed down again.
I came out of hospital (again!!!) yesterday and feel so depressed - the consultant was very abrupt with me and said that there was no surgical or medical proceedures that could help my condition so I just have to live with it.
I really don't know what to do - I can't bear the thought of having to live the rest of my life like this (I'm now 54) My youngest daughter is 15 and she has never known me in good health. I can't work as I never know what each day brings so we've hardly any money.We can't go out as I'm usually sick after I eat. I just exist from day to day and have missed out on my children growing up. As for my marriage... my husband has stuck with me, looking after the girls, shopping & cooking. He's a wonderful man but unfortunately we're more like housemates rather than husband and wife.
Please, please if there's anyone who can give me some advice as to any treatmet there is to help me - I will be eternally grateful. I live in Scotland so some of your proceedures or medication might not be available in this country but I'll certainly check everyting out and if you have something in your country - I'll get a bank loan to go there!!!!
Sorry for such a long post - thanks for taking te time to read it!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/29/2011 6:30 AM (GMT -6)   
hi heidi and welcome,

i was very sorry to read about all you've been through. your story is sad and your condition is complicated. did they remove all of your colon? sometimes there are surgeons who think removing the sigmoid only or part of the colon and not all of it is enough, but with colonic inertia it's not. those who had only part of it removed, eventually had to go back to remove the rest.

i also had a colectomy Aug 2009. it didn't work, but not b/c of adhetions, but b/c i have severe pelvic floor disfunction + a slow small intestine. 11 mons after colectomy i had surgery to create an ileostomy. it's been a bit more than a year since my ileostomy op and i feel fantastic!! i love it. i feel great. no pain. i can eat almost everything and gradually will be able to eat everything. after 17 yrs of severe constipation and suffering i can say life is good again.

i'm sorry, but i don't have advice for you other than maybe an ileostomy can help you too. sending hugs your way and hope you feel better soon! keep us posted.
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

heidihi
New Member


Date Joined Jul 2011
Total Posts : 3
   Posted 7/29/2011 11:19 AM (GMT -6)   
Hi There Hodaya,
Thank you so much for your reply. I was told that I had all of my colon removed and the smal bowel attached to the rectum but when I had tests done at another hospital I was informed that a bit of my colon had been left. The surgeon at that hospital offered me an ileostomy and said that he could reverse it again but I don't know that I'm ready to take that step yet. I know it would probably give me a better quality of life but the thought of the bag scares me - what's it like? does it always stay in place? does it smell? can others smell it?...................oh just so much to think about!!
Thanks again for your reply and I'm glad that you're keeping well.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/29/2011 12:17 PM (GMT -6)   
Auuuugh! I feel for you. Sounds like you need an expert at adhesion lysis, an adhesion prevention barrier put in in an effort to prevent adhesion recurrences and a permanent end ileostomy. My story somewhat similar yet different in many ways. I had normal transit and "pelvic reconstruction" after prolapses due to an unneeded hysterectomy. Only what was prolapsed was mis diagnosed and my sigmoid was unnecessarily removed, done wrong, lost use of rectum, colon, permanently then lost use of small bowel for 7 months due to severe adhesions. So far so good since adhesions off of small bowel and permanent ileo. I am only 55 and in great shape other wise. SHOULD never have had that original hyst, which precipitated the rest, but it goes as it goes.

I remember my last Sbo prior to getting fixed up and one of the ER nurses at my local hosp said YOU AGAIN! How can medical people be SOOOOOO cruel?

Good luck. Rosemary

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/29/2011 1:35 PM (GMT -6)   
Welcome to the list. I'm sorry you've had such a hard time for so long.

I had the opposite problem, so cannot advise on slow bowel issues, but I have an ileostomy now, and please learn more about it. For me, it is TRIVIAL to have a bag compared to being sick all the time. Of course, I don't know if the bag would do the trick for you or not, but I've been amazed at how quickly I adapted. When you've been sick for a long time (and you've been sick a lot longer than I was), you don't really remember what it was like to be well. So, when I would think about the bag before, the part I'd be leaving out was how much better I was going to feel, because I couldn't really imagine that part.

When the bag is closed and on you it doesn't smell and others can't smell it. When you empty it, it smells like poop, but there are deodorizers you can use to minimize or take away the smell (but, most people smell in the bathroom that way). There are a few accidents, and that can be frustrating. I've had four in the five months that I've had my ileo -- one was right at the beginning when I didn't close things right, one was when my stoma was shrinking and I needed to change the type of bag I was using, one was because I didn't put the pouch on right and was very minor, and one was because of a product I used to vent the pouch that opened on its own (that one was minor too).

In those same five months, I've started eating all kinds of food I haven't had in years, have reconnected with many old friends, have all kinds of people telling me I look great, have gone on two trips on airplanes, and have stopped taking all drugs. I have more energy than I've had in a long, long time, and that's even with a stubborn complication from the surgery. It has been so, so worth it.

It is a very scary step, and a decision that only you can make. But please ask any more questions you might have -- we're happy to help. I hope you find some relief soon.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

heidihi
New Member


Date Joined Jul 2011
Total Posts : 3
   Posted 7/30/2011 1:16 PM (GMT -6)   
Bluegrass,
Thank yo so much for taking the time to reply - I really appreciate it and will certainly look into everything carefully.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/30/2011 8:21 PM (GMT -6)   
You're welcome, and please feel free to ask more questions. If you post them w/a subject line related to ostomies, more people are likely to respond (when the headline is disease specific, mostly people w/the same disease read it....)
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/31/2011 7:13 AM (GMT -6)   
hi heidi,
sorry for the long reply. last 2 days been really busy. most likely they removed all of your colon except the rectum of course and leaving a bit of the sigmoid is necessary for the anastomosis, so i guess you had same surgery as i had.

like you, i also thought having an ostomy is like the end of my life for me.. and i can't even describe my disappointment and depression i was in when i started to realize the surgery wasn't working and my only option was to have an ileostomy. i was crying day and night non stop for months... it was definitely a huge deal and a big crisis for me. but i weighted my pros and cons and got to the conclusions:
- do i want to spend the rest of my life in pain? no.
- do i want to go on spending hours and hours in the b/r every single morning for the rest of my life and still not have normal results? no.
- do i want to be able to eat? yes!

also, i've been reading here ppl's posts and learned that they can do everything with an ostomy and it doesnt limit them in their daily life and activities. this is a very supportive community and they helped me realize having an ostomy is so not the end of the world.

right after surgery i realized that too :) i realized how easy it makes my life and how GOOD i feel thanks to it and i'm FINALLY FREE from spending hours and hours in the b/r every day.... it was so clear that i made the most right thing, that it actually made me love my stoma.

having the bag on me doesn't bother me at all. it doesn't show (only if you let it fill up too much), it does't smell. it does smell when you empty, but it is known that poop doesn't smell like roses. but when the bag is closed, even you can't smell anything. and about the noise - my stoma is silent 99% of the time. only in the morning, when i drink my first glass of water, she then starts to wake up a bit and likes to say good morning, but the rest of the day i really forget it's there.

at the first couple weeks post op the stoma is VERY loud, but thats only b/c the bowels learning their new route, adjusting etc, but then it setles down totally and you hardly hear it. also, usually at the begining there are more leaks, till you learn to figure out which appliance works best for you and how to make it stick best etc. but after you've figured what fits you best, leaks will be rare.

and you can do everything, including EVERYTHING with an ostomy. actually, before the ostomy op i was VERY limited, cuz i was so sick and in pain all the time and spending hours in the b/r. now with the stoma i can do so many things i couldn't for so many years. well, now i can do everything!

i really wish you all the best and to have relief soon, and i wish you best of luck with whatever you dicide to do.
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
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