Facing total colectomy, need support, answers

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bootynoworky
Regular Member


Date Joined Oct 2006
Total Posts : 40
   Posted 12/11/2006 1:08 AM (GMT -6)   
I am 22 years old and am facing a total colectomy for colonic inertia. Pretty much I have exhausted all my other treatments options and this is my last one. I'm about to go in for the tests to see if my small intestine is strong enough to be used in place once the colon is removed.
Could anyone here relate to having a total colectomy for colonic inertia? Are you glad you went ahead with the surgery?
What's recovery like after the surgery? How long is recovery?
Do you typically lose or gain weight?
What kind of scars did you get?
Does this surgery involve blood transfusions?

Also, my family is giving me a hard time about this. I don't think they understand what colonic inertia is for one thing. Even though I had the dr. explain it, I've shown it to them from papers from the doctors, i've tried to explain it to them in "simple" terms. I just don't think they get that my problems isn't that I just need a better laxative. They keep wanting me to try new holistic or natural treatments (Which I have tried my fair share and they just didn't work out, at best they gave me cramps.) I know they are just trying to be helpful, but they want me to say no to the surgery that could give me my life back in favor of trying more "natural" cures. They don't even have suggestions for any of these natural cures, they just like the idea of it.
Anyone deal with that sort of opposition? How did you deal with it? How do you let them know tactfully your sick of pills and potions, you just want this hell to be over. Dealing with severe constipation for over 4 years is enough. I'm doing this before my twenties are completely gone and you get no grandkids..(sorry, I started to ramble. But you get the point.)

Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 12/11/2006 12:15 PM (GMT -6)   
Hi. I have had my colon removed but it was due to ulcerative Colitis not Colonic inertia.And I now have an Ileostomy. if the tests on your small bowel turn out fine then you should do fine after surgery. Are you having a J-pouch?

"What's recovery like after the surgery?"...
 
It will depend on what exactly the surgeon is going to do. I am presuming surgery for a j-pouch is probably a bit different to what I had although in either case the colon is removed so I would think that recovery wouldnt be too different.

Its nearly 4 years since my surgery but from what I remember I was feeling quite delicate for a couple of weeks but after 6 weeks I was feeling realy good. When I say "feeling delicate" it wasnt that I was feeling ill or anything it was just that my tummy was tender and I was afraid of people bumping into me and i was very careful of getting in and out the bath,that sort of thing.

"Do you typically lose or gain weight?"...

I think it depends on the person. I lost weight. I think that was more due to not having to be on prednisalone any more because they do tend to make you gain weight. But for someone that is very under nourished due to illness before surgery, then they will probably find that they gain weight because having the surgery will hopefuly make it possable for them to eat well again.

"What kind of scars did you get?"...

Mine is quite a long scar. it goes up from the pubic bone and past my belly button. its about 7 inches in lenth altogether.(thats a guess though) The top part of the scar is hardly visable on me now.But the bottom half is more visable because I had that part opened up again 2 years after the first surgery(for rectum removal) Its definatly faded a lot to what it was though.

"Does this surgery involve blood transfusions?"...

I think that you should speak to your surgeon about this beforehand. I think this depends on the person because some people will bleed more than others. I didnt lose much blood at all as it happened. My iron levels did drop a bit a few hours later from what I remember though ,so I did need to take some iron supplements for a short while.

Although the reason for my Colon removal was for a different reason than yours,I do understand your frustration over the alternative "naturel" treatments. I had worked in a health shop for years and I had tried allsorts of things from cutting out dairy in my diet to Alo-vera juice,charcoal tablets,Physillium husk,Acidophilas,you name it and I have probably tried it. So you would think that if anyone could find somthing to help treat my illness it would be me. In the end though I got to a point where Enough was enough. If this is how you are feeling then all you can do is explain to your family that although you understand that they dont want you to have to go through surgery,it is your body,you have given the surgery a lot of thought and it is "your" decision". They might not like it but at the end of the day only you know how you feel having to live with this problem every day. it is difficult but once you have spoken to them about how you feel,you then need to focus on "you" and try not to worry to much about what anyone else thinks of your decision.

I wish you all the best with everything.


Post Edited (bag lady) : 12/11/2006 11:38:19 AM (GMT-7)


bootynoworky
Regular Member


Date Joined Oct 2006
Total Posts : 40
   Posted 12/11/2006 9:08 PM (GMT -6)   
Thank you for the response. I really appreciate your input on the natural cures, that is exactly how I am feeling right now. Just today I was practically in tears due to phone calls from my family nagging me about if I had tried something something yet. They called three times today! I tried to explain that this was my decision, but they think I'm just giving too easy. Easy to say when it's not you I guess, they're pooing everyday. I've been dealing with this for years now. I put the phone off after that...

I'm not sure what a j-pouch is exactly, maybe you can explain that to me. I have not met with the surgeon yet. I have my test on my intestines in Jan, then a follow-up with the Dr. then I'll get to meet with the surgeon. It's still a long road. From what I understand from the doctor they just connect the small intestine to where the colon used to be and away you go. No bags or anything.

I was reading a blog from another woman with colonic inertia who had a total colectomy, she said not to wait, it was good decision to get the surgery. She got her life back.

Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 12/12/2006 2:56 AM (GMT -6)   
I dont blame you for putting the phone off,I would probably have done the same thing.

There is a couple of sites that I know of that you can get lots of info on a j-pouch and other types of bowel surgery. I will email them to you as I am not sure if I am allowed to put them on here. If you dont recieve the email let me know.


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 12/12/2006 9:46 AM (GMT -6)   
hey booty

not exactly the same situation, but...i'm 25, and having my large bowl removed entirely in early january, along with a proctocolectomy, so i'll end up with a permanent ileostomy. (ok i think i got the lingo right) i know how hard it is to deal with family! personally i think THEY'RE the ones that need a support group! i can't wait for the surgery..after exhausting all the medicinal routes this was a no-brainer for me, but has been extremely hard for my parents to accept. it toook a lot of telling my parents about the pain i'm in versus what little if any pain i'll have after surgery, but it seems to have finally sunk in. their biggest issue is that i won't be able to "find someone," 'cause i have an appliance..they want grandkids...not that i plan on passing on these genes anyways...be patient with them, they'll come around eventually.

--matt

p.s. i tried many herbal supplements and whatnot as well...all that did was help empty my wallet
Since 1991: Indeterminate crohn's/ulserative colitis


CntryDnc22
New Member


Date Joined Dec 2006
Total Posts : 4
   Posted 12/12/2006 2:40 PM (GMT -6)   
Hi bootynoworky:

Interesting online name. lol!
I have an ileostomy (by choice over the J-pouch) for 10 years. I live a healthy, drug-free life.
If you are not on any prednisone (steroids), that is a plus. You will heal better after surgery.
I was on a high dose of prednisone at the time along with TPN (central line), and I had some problems after surgery.
Therefore, my choice to stay with my end ileostomy. Enough was enough.
Anyway. On the other hand with these herbs. You say your problem consists of constipation. Have you tried Comfrey or Slippery Elm tea? The herb is sold usually loose an you buy a steeping tea bag or a small metal strainer.
Just one more thing that you probably don't want to hear. :)

Kathleen
:-)

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 12/12/2006 2:48 PM (GMT -6)   
I think the standard surgery for colonic inertia is removal of the colon and connecting the small intestine to the rectum. You do not need a j-pouch. J-pouch surgery are for those of us who had Ulcerative Colitis.

As for your family, my family did not support my decision to have surgery although I had languished ill for over 2 years. I think, in hindsight, THEY had too much fear and probably felt I did not know what I was doing. Even up until the day before surgery my brother questioned whether or not I might have celiac disease!! I think you need to put your foot down and tell them you appreciate their concern but you have made your decision, it's final, and you don't want to hear anymore of their good intentions. In my case my family FINALLY came around after they saw how quickly I regained my health following surgery. In my case I was immediately well.

Stand your ground and don't waiver. Let them know you have done the research, you have tests that prove it is necessary, and you want your quality of life back.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


CntryDnc22
New Member


Date Joined Dec 2006
Total Posts : 4
   Posted 12/12/2006 5:11 PM (GMT -6)   
To anyone:

I don't agree with the standard procedure being the connection of the small intestine directly to the rectum??
I really don't feel it makes any difference whether or not one has ulcerative colitis or any other problem that requires having the colon removed.
If one's small intestine was connected to the rectum, one would have diarrhea problems all the time. What goes into an ileostomy pouch is what will come out the rectum if directly connected.
It only makes sense.
The J-pouch is approx. 2 feet of the small intestine made into a retaining pouch and it will do a bit more absorbing so one isn't always in the bathroom. The small intestine actually is trained to absorb more with the J-pouch after time.

Kathleen

bootynoworky
Regular Member


Date Joined Oct 2006
Total Posts : 40
   Posted 12/12/2006 9:59 PM (GMT -6)   
This is what I think it's called: "ileorectal anastomosis (a straight hookup - often used to be called "the pull-thru"). As she has her rectum, she doesn't need a J pouch." I found that on another site. (thank you, Susan)

That is interesting about the j-pouch helping you stay out of the bathroom though. I will be asking my doctor about that one. I was worried about that, but hey, I'll take it over not going at all!

I certainly agree with the herbs emptying my wallet more than they emptied my bowels. I am going to try acupuncture, I think that's just about that only thing I haven't tried. If anything to get a bit of relief as I await surgery.

I appreciate all the comments, I was starting to second guess myself. Definitly after the way i've felt the last week, I need this to happen. I need to be 22. I just need to go to the bathroom even. ;)

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 12/13/2006 8:26 AM (GMT -6)   
Kathleen,

It doesn't matter whether you agree with the surgery choice, this is the standard surgery for colonic inertia which is a completely different problem than ulcerative colitis. A lot of CI patients have great results with this surgery and hopefully some will chime in. Also, a bit of correction, the j-pouch is not made with 2 feet of small intestine, it's more like 9-12" which is then folded in half to creat the pouch.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


enpointe
Regular Member


Date Joined Nov 2006
Total Posts : 65
   Posted 12/13/2006 9:21 AM (GMT -6)   
Hi everyone, it seems that alot of people are having sleeping problems maybe since so many comments are made in the early morning! I had my surgery a month ago and have been healing very well. I got a little yeast infection under my belly and needed to use neosporin and talc powder and it was gone in a few days. I have not had many accidents at all and have not needed to wear diapers for much time at all. I have had this severe problem of ibs constipation for the past 35 years and never have heard of this surgery from my gastro dr. and have gone to 3 surgeons who stated to me I would need a bag and it would be worse than what I have now. I do not know what I just did to change the type on this computer ! Anyway, those 3 surgeons were so wrong, I ended up in emergency rooms each weekend or so and have lived a horrible life of pain, bleeding, diarrhea, constipation, bloating, feeling like I would faint, and have had to not go to alot of engagements of occasions due to having to be home in pain. Since the surgery, I have had no bloating hardly, very small amount of cramping due to whatever I ate. I have lost over 33 pounds the last I looked and have been walking 45 minutes daily as the dr. ordered. I already feel that I have my life back and would do it over again if I had to. I am so grateful to the surgeon I found and do not care about my long incision that was not done with a lap method. I want to say that my family saw all the problems that I had yet did not want for me to have the surgery. I know it is from concern and fear. Please know that you are so fortunate to have found a doctor to have told you about this and that you are very young and will heal well. I was told that and am 46. I am taking it slow with regards to movements up steps etc. and the doctor said even at 3 months to get up out of the bed , etc. slowly. I wish you much luck with your surgery and no more pain!!!! Enpointe which is named for ballet point.

KLH
New Member


Date Joined Nov 2006
Total Posts : 17
   Posted 12/19/2006 8:20 PM (GMT -6)   
Hi everyone,
I'm new to the "neighborhood" and hope that someone might have some thoughts for me. I'm 37, today actually, and just had a subtotal colectomy because of colonic inertia. I went in on 12/14 and came home on the 17th which is pretty awesome compared to some of the stories I've read. The surgery itself was a breeze, the only complication was a continuous drop of my potassium that required 12 bags of potassium. They let me go home after a couple light BM's but my experience is not like what I've read. I'm barely going and I have retained so much of the fluid that was pumped into me that I literally have double in size around my abdomen and thighs. Has anyone else experienced anything similar or maybe have some thoughts.
My surgeon left 6" of my colon, could it be causing problems???? I am eating a small, very small, amount of soft foods...but I don't have much of an appetite. It's very similar to the nightmare I was going through prior to the surgery...the bloating from the fluid is miserable and is causing more pain around my incision than my actual incision.
Any thoughts would be great!
KLH

enpointe
Regular Member


Date Joined Nov 2006
Total Posts : 65
   Posted 12/20/2006 10:39 AM (GMT -6)   
Hi, I received your email from yesterday and am very concerned as you are. I would call my surgeon IMMEDIATELY about this and let him know. I have not read or heard of this before in the forum of all the reading I have done here. Please call the doctor now and let him know of this. Please also reply so that I can know you are okay. I do not know why the print just changed, I accidentally pushed something. I had my total colectomy a month ago and basically have had diarrhea and then a bit of constipation of which I let the doctor know and he told me to take benefiber 2times per day. I also am drinking boost three times per day to get the nutrition I need since I have been eating little also. I also did not have an appetite and it is just coming back. I had alot of gas and figured maybe it was due to the applesauce I have been eating. I'll stop that. Thanks for putting this information about yourself. You will get support here I believe. I have not gotten any feedback but that does not mean that it won't change. Good luck and call the doctor!!
Sincerely, enpointe (ballet term on pointe).

KLH
New Member


Date Joined Nov 2006
Total Posts : 17
   Posted 12/20/2006 6:59 PM (GMT -6)   
Hey enpointe,
I'm doing a little better today, the fluid seems to be shifting around a little. I haven't had a BM at all today, but my tummy is extremely active so maybe soon. Someone suggested that the pain meds might be slowing things down, so I'm going to try to tolerate a little more and drop back on my daily dose.
Thanks for the concern, I see my surgeon on Friday to remove my staples and I will definetely call him tomorrow if I need to.
Did your BM's start immediately? How was this past month been for you?
KLH

bootynoworky
Regular Member


Date Joined Oct 2006
Total Posts : 40
   Posted 12/24/2006 12:40 AM (GMT -6)   
KLH,
I have a problem with potassium right now. I am constantly having to go to the ER for it. I was just there this last Wednesday in fact for that. I wonder if I will have a problem with that when I have my surgery.

An update on my surgery status if anyone is interested- After a bout of extreme constipation this week, my doctor is trying to epedite the process. My tests on my small intestines are being moved to earlier in jan. and he wants to try and do surgery in feb. instead of march or april.

I have not yet told my employer. My husband cried. My sister-n-law threw a fit because we will miss her wedding in Italy. She thinks I am acting sicker than I am to get out of it. I wanted to punch her.

Whatever, I just want to poo.
Colonic Inertia w/Pelvic Floor Dysfunction


Sandee
Regular Member


Date Joined Nov 2004
Total Posts : 40
   Posted 12/25/2006 6:17 PM (GMT -6)   
 HI BOOTY---
 LOVE THE SCREENNAME-I CAN SURE RELATE--
 I'M SORRY THAT SOMEONE YOUR AGE HAS TO DEAL WITH
SUCH A CRAPPY ILLNESS. I WILL PRAY FOR YOU AND DO WISH YOU
THE BEST OF LUCK.  cool  
  MY HISTORY IS WITH CROHNS DISEASE..I HAD A BOWEL RE-SECTION
IN 1997---THEN A COLOSTOMY IN 1999--THEN>>> IN 2004 HAD
TO HAVE AN ILLEOSTOMY...I'VE DONE 100% BETTER SINCE THE LAST SURGERY. AM DRUG FREE AND FEEL GOOD. I EAT WHAT I WANT-AM ACTIVE AND IN GREAT HEALTH NOW. yeah I REALLY DON'T MIND MY ILLEOSTOMY AT ALL....I AM A "GLADBAGGER" tongue .....NO MORE BEING A PRISONER TO THE PORCELIN "THRONE"....
I WEAR A SMALL APPLIANCE AND CAN CHANGE IT OUT WITH MY EYES CLOSED--LOL
 I HAVE HAD A GOOD SUPPORT SYSTEM AROUND ME...FAMILY-FRIENDS AND MY KIDS. IT TOOK A WHILE TO MAKE "ADJUSTMENTS"..BUT A GOOD THERAPIST HELPED ME TO SEE MYSELF AS A BEAUTIFUL WOMAN IN SPITE OF THE "BAG"...
 IF THERE IS ANYTHING I CAN DO--ANSWER QUESTIONS-ETC--FEEL FREE TO E-MAIL ME-SINGINGSANDEE52@YAHOO.COM
 I MAY NOT HAVE ALL THE ANSWERS BUT I CAN SHARE MY EXPERIENCES........GOOD LUCK TO YA!
 
SANDEE
 

"For those who hope in the Lord shall renew their strength.  They will soar on wings as eagles, they will run and not grow weary, walk and not be faint."  Isa. 40: 31 & 32
 
Love, Joy, Hope, Peace and Lots of Laughter!  Sandee


bootynoworky
Regular Member


Date Joined Oct 2006
Total Posts : 40
   Posted 12/26/2006 12:49 AM (GMT -6)   
I hear a lot of people saying they are drug free after they recover from their surgeries. I really hope that for myself. That is been a real struggle for me lately - DRUG SIDE EFFECTS
They suck! -Drowsiness, insomnia, weight loss, weight gain, nausiness, constipation (ha!), diarhea (never get that one, though it is listed), potassium level drops, tingling in fingers and toes, drooling, headaches, dizziness, dry mouth, feline luekemia, fatigue, blurred vision, stupidity, bad spellling, blah blah blah

I'm on some medications just because of some of the side effects of the medication! When does it end! Oi! confused
Colonic Inertia w/Pelvic Floor Dysfunction


goulding
New Member


Date Joined Feb 2015
Total Posts : 6
   Posted 6/2/2015 2:30 PM (GMT -6)   
I had a subtotal colectomy and ileorectal anastomis, and i do not and have not ever suffered from diarrhae.
If anyone on here has had the same, how long did it take to get your waist line back, I still feel swollen and slightly bloated, I had my op on 1st april this year
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